# Subtotal Colectomy scheduled for Colonic Inertia



## Miss Beany

Hi Everyone,

I am finally taking the advice of some of my friends to seek a support group online...my hope is that sharing my experience, especially in the last year, will serve as a way to let others know they are not alone, and to know of what some doctors have suggested for treatment of my colonic issues.

Ever since I can remember, I have had issues going to the bathroom. Between straining, having difficulty evacuating, urgency and occasional accidents, to intense pain, bleeding, and extreme abdominal discomfort, to looking like I was pregnant from my abdomen being extremely swollen and bloated. You name it, I experienced it. From the time I was about 17 until 27, I suffered from severe rectal prolapse. I had no idea what it was during that time frame. All I know is that I had something that looked like a long penis sticking out of my butt each time I "tried" to go to the bathroom. There had been more than a few occasions when I'm guessing a large part of my intestine came out of my body d/t my straining and literally dangled out of me, spewing into the toilet water.

A year ago, after this disgusting incident repeated itself, and after talking with a friend who was in medical school, I finally made an appointment with my primary care doctor. He told me my symptoms were textbook complete rectal prolapse and told me I needed to see a surgeon. After meeting with one surgeon I did not like out of Hahnemann Hospital, another surgeon in Freehold, NJ who I did like (but insurance canceled my surgery 2 days before), and finally my awesome Bryn Mawr surgeon, and after tons of tests, including defecogram, xrays, CT-scans, rectal exams, barium, surgery was scheduled for January 11, 2013.

I had my laproscopic resection rectopexy on January 11, 2013; however, all did not go well. I was supposed to be in the hospital for 3 days; I was in the hospital for a week. I was, as my surgeon said, "dogged" by awful complications, neurologic, and cardiac symptoms for months following this surgery. My bladder stopped working after the urologist put in a stent to be safe with this surgery. I continued to have bladder issues until April 2013. I also started experiencing numbness in my arms, legs, and face; lost blocks of vision, sometimes for days at a time; and was having severe chest pain and shortness of breath. I was hospitalized for fear of having a stroke due to neurologic and cardiac issues for a week in March. After another round of tests, they discovered I had a bicuspid aortic valve (congenital, born with this, just found it by accident when doing repeat echocardiograms for symptoms), and now had complicated migraines (which I never had before prior to surgery). Pretty much from January until May, I was dealing with symptoms off and on of all of the above issues, found myself in the ER a total of 3 times, and admitted to the hospital one of those times for a week. Additionally, I was still having difficulty going to the bathroom, would not go, or would have explosive diarrhea.

My GI doctor from Bryn Mawr, a referral of my first surgeon from Bryn Mawr, started me on Linzess (290mg) and told me to pair that with Miralax, meanwhile I still was taking Senna (2-4 tablets daily), and if that still didn't work, ducolax. I was constantly uncomfortable and there seemed to be no real relief. I definitely learned how to work through it as I had two full time jobs and graduate school. But it was not, and still is not, easy.

Around May 20, 2013, when attempting to go to the bathroom, I felt an all too familiar feeling...I had relapsed with rectal prolapse. When I called my surgeon, He referred me to a surgeon out of the University of Pennsylvania. I had to go through the embarrassing demonstrations of it all, and now had to go through repeat tests of Barium, x-ray, CT-scan w/ contrast, and another awful defocogram. After all results were back in, there was a partial rectocele along with internal hemorrhoids and of course the rectal prolapse. He scheduled surgery for June 21, 2013.

I had an open rectopexy on June 21, 2013 at the Hospital of the University of Pennsylvania. Had bladder complications yet again, and suffered from a severe migraine most of my time there. I was in the hospital a week. About a month after surgery, I developed extremely painful and deep left-sided abdominal pains. I could barely stand. They sent me to the hospital, at which I was admitted and stayed there 5 days. I was in quarantine for a chunk of the time I was there, as they feared I had developed C-Diff and also feared I had a fistula due to gas escaping from my vagina anytime I had diarrhea or attempted a bowel movement. After discharge, he sent me for a rigid proctosigmoidscopy to check for a fistula on August 19, 2013. This came back negative.

All the while this was going on, my GI doctor began wondering if there was a larger, underlying issue with my colon, particularly due to the irregularity of my bowels, recurrent prolapse, nausea, and constant abdominal pain. He sat down with me and told me he wanted to try a test of his own to see if we could reset my colon to baseline again - basically I would have to do the awful whole big bottle of miralax paired with 64oz of Gatorade. He said if this doesn't work, and things return to my normal, we might want to consider sending me to Temple University for a full gastric emptying studying. If that came back with what he suspected might be going on (colonic inertia) he would suggest we discuss the option of having a colectomy performed. We would not discuss that until I went through these two things, but he said at this point, that might be the best option I have at relief.

The cleanse failed and I was back on my linzess, miralax, senna concoction and was back to the usual abdominal pain, irregular bowels, seeing food particles, having huge masses being extremely difficult to pass, etc. Back and forth, zero relief, but constant cycle. I called my GI doctor, told him. He contacted Temple University and got me signed up for the 4-day complete gut gastric emptying study. I ate the bland and isotope-radioactive-drenched egg sandwich, did not take my medications or pain killers, refrained from alcohol and caffeine, and went back daily for scans. A week later, my GI doctor called with the results. The test showed that my stomach and small intestine work just fine (which is excellent news!) but my colon was significantly slowed and indicated global colonic inertia. He said at this point, he wanted me to meet with his mentor at Temple for a second opinion, then he would contact my surgeon and get him on board for the colectomy as he did not feel there was any other feasible option to offer me true relief.

I met with the 2nd opinion Temple GI doctor on September 17, 2013. He seemed to concur with my GI doctor, but said it was important to go for an anal mamometry to make sure that my pelvic floor muscles functioned properly; if they would not, I would also need an ileostomy. I went through the anal mamometry on September 23, 2013. Awful and embarrassing test. After I had met with this 2nd opinion doctor, I called my GI doctorafter which he felt it was definitely time to contact the surgeon and get him on board.

I met with my 1st surgeon from Bryn Mawr on September 25, 2013. He said it all made sense to him that the underlying and big issue was the colonic inertia, but that is not the first thing that doctors like him think about when a 28 year old, seemingly healthy, young lady walks into his office with a history of rectal prolapse. Regardless, he was completely on board for the subtotal colectomy. He would leave the rectum in place and remove the colon up to the small intestine and reconnect the small intestine to the rectum. If, in a year, I am still miserable and having issues going to the bathroom, and pelvic floor physical therapy is getting us nowhere, I know I would need to get an ileostomy&#8230;but we are hoping that it does not come to that.

My laparoscopic versus open subtotal colectomy is scheduled for Friday, December 13, 2013. I am definitely scared, but at the same time, wanting it to be over and done with so I can move on with my recovery to hopefully sunnier days. The misery I have dealt with for so long never remits, and even if I for a second feel like it could get better, my body shows me the complete opposite. As of late, I have been having increasing amounts of rectal bleeding, abdominal pain, bouts with painful diarrhea, and a constant fear of the prolapse returning before this surgery. My surgeon has been absolutely wonderful and has been answering all questions and concerns I have via email - which is completely reassuring to me of his investment in making this a success. I know there will likely be complications, and I know things will seriously suck for a while after I have the surgery. My baseline hospital stay is a week, according to my surgeon.

I hope that someone out there will appreciate this novel I just wrote and know that they are by no means alone. I often times feel completely alone&#8230;then I google and find support forums, such as this, and feel a bit better knowing there are other people out there.

I embrace any comments, support, questions, advice anyone who has gone through something similar, especially the subtotal colectomy. I do apologize for the length of this all.

Thank you for your time.


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## rmiller1985

Hi Miss Beany,

I don't have any of the complicated problems you've described, I'm a simple IBS-D case. And my problems are mostly resolved at this point, I've been on the Specific Carbohydrate Diet for five months today and I have had tremendous success. I just want to say:

Damn. I'm really sorry you're having to deal with all that. I hope finding this friendly community will help at least a little.

Cheers,

Rich


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## annie7

Good luck to you, Miss Beany with your upcoming surgery. you have been through so much. it sounds like you have a terrific surgeon and you'll be in good hands. i know many people have had good outcomes with a total colectomy

i have had chronic constipation primarily due to pelvic floor dysfunction since childhood ( 50 years). i had an emergency extended right colectomy this past summer. i developed a cecal volvulous. my ascending colon twisted 360 degrees, started swelling and was about to perforate. hubby took me to ER where they performed an emergency extended right colectomy.

the ER surgeon removed my ascending colon and half the transverse. he did consult with my gastro both prior to and during the surgery. based on my tests and past history my gastro advised him to remove most of my colon--a total colectomy-- since none of it works--lol--but the ER surgeon decided to be a bit more conservative and just remove the twisted, swelling, ischemic part which i do understand--his job as ER surgeon was to fix the problem that brought me to the ER and he did that admirably--probably saved my life.

but i still have to take laxatives to go now even though i only have half a colon. the remaining colon is still slow transit and troublesome. i plan to see the surgeon again to see if he'll just remove the rest of it.

feel free to ask any questions about my surgery--although mine was emergency surgery not elective so it was a bit of a different situation. take care. wishing you all the best.


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## Miss Beany

Rich - I am so happy to hear things are moving in the right direction for you! A lot of people are not as lucky as you, so that is truly wonderful . Thank you for your kind note. It has been awful, but at least I know there is a light at the end of the tunnel now.


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## Miss Beany

Annie - It is definitely reassuring to know many people have had good outcomes with having a colectomy. It's a scary thing to know that it is happening, and pretty much in a month. But at that the same time, it still feels weird and like it won't happen and I will just wake up out of this awful dream.

It definitely sounds like you should have the remaining part of your colon removed - hopefully tehy will consider that. I had my sigmoid colon removed in January with my first surgery, and that obviously did not do anything positive for me, did not fix the underlying colonic inertia nor the rectal prolapse.

How long were you in the hospital? Did they do open or laparoscopic?

Hope you are feeling okay!


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## annie7

mine was emergency surgery so it wasn't laparoscopic surgery. after the CT scan the ER surgeon decided to open me up completely to see just exactly what was going on.i had a six inch vertical incision in the middle of my abdomen. now it's quite the dramatic scar--lol...

i was in the hospital for 16 days. the nurses and the surgeons told me the normal hospital stay for this kind of surgery is 5 to 7 days but my situation was different--far from "normal"-- probably because of the emergency nature--body under extreme stress etc-- plus my age--61--and the fact that i was/am quite underweight. not well prepared for surgery at all.and i have mitochondrial disease. after surgery my body just shut down--- couldn't eat, couldn't poop, developed severe edema, had to have the ng tube reinserted (not fun) had to be put on TPN, lost ten pounds, etc etc) i had a bmi of 15 when i finally left the hospital.

but please--i don't mean to scare you by telling you all this. as i said my situation was complicated.

thanks i'm feeling a bit better now but still want to go back to my surgeon to see about getting the rest removed.,

good luck to you! stay strong! wishing you all the best. yes you are right--there is a light at the end of the tunnel.


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## Miss Beany

Annie - Thanks for your quick reply!

I too have the large 6 inch vertical scar from my open rectopexy in July. I have another 4-5 inch horizontal scar below that wehre my resection rectopexy was done in January.

My surgeon is anticipating complications with my surgery, particularly because of the complications that have arose before. I weigh around 95-100, depending, am 28 and 5'0''. My surgeon did say I was likely to lose more weight from this, but we did not talk too much about feeding tube (he said he hoped to avoid that) and the ng tube was possible if surgery was extremely complicated. So that is something that I will have to wait until I wakeup to see I guess...







.

You haven't scared me at all - I completely expect to hear things like this, and prefer it really, so that I am ready for anything.

Thank you so so much for opening up to me!


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## annie7

ps--have you found this board? the AGMD GI motility disorders support board? there are quite a few people who've had colectomies there. here is one link--there are more posts as well. everyone is very helpful and supportive:

http://www.inspire.com/groups/agmd-gi-motility/discussion/what-is-your-quality-of-life-after-your-colectomy/


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## annie7

just read your last post--you must have been posting when i was--lol...

you have already been through so much. i do hope and pray you have a successful surgery and a recovery as free from complications as possible!


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## ksl2017

Hi Miss Beany,

I can completely relate to your feeling of how physicians and medical staff respond when they see such a young, otherwise healthy looking female suffering from uncommon digestive disorders. I am a young, 23 year old female myself and have had issues with IBS-C for the majority of my life. It was manageable for most of my life until last March 2013 I came down with a terrible infection and ever since then my colon has been extremely slow. I was in and out of the hospital several times within the past 9 months for just about every G.I. test (colonoscopy, small bowel follow through, endoscopy, pill capsule swallow test, blood tests, enemas, ER visits, etc.). Similar to you, medical staff were confused about how something like this could happen to such a young, active female. I used to work out every day and ate relatively healthy my whole life. Doctors couldn't figure out what was wrong with me, until I had a sitz marker colon transit study test performed followed by an anal monometry. I was recently diagnosed with slow transit constipation and am being referred to Cleveland Clinic in Ohio for a defocogram on November 19th and to meet with a surgeon about a total colectomy seeing as how i have been on numerous laxatives with no improvement in bowel habits. I too am a recent graduate student in a school of pharmacy program. As a new student to the program, it has been a difficult first semester dealing with the medical condition and trying to keep up with coursework. I would really like to hear how your total colectomy goes and how you are feeling afterwards! I'm sorry to hear about your struggles, but it is amazing to hear from other individuals who have gone through a similar situation. Stay strong!

Kymberly


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## Miss Beany

Kymberly, thank you so much for sharing your story. I definitely understand all that you have been through - I have had all of those tests. I keep questioning whether having this surgery is the right decision or not, but I know dealing with what I have been for the past year and really my whole life has got to stop. Next week I have preadmission testing. It is slowly sinking in that this is happening in 3 weeks...I will definitely keep everyone posted of my progress after surgery. I know it has been so helpful for me to read other people's stories and I more than want to help and reassure others out there that there is hope and a light at the end of the tunnel.


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## ksl2017

Well after traveling to Cleveland Clinic in Ohio to see my surgeon, I too am going to be having the laproscopic total abdominal colectomy performed on December 20. However, my surgeon advised on a temporary illeostomy before the full connection of the small intestine to the rectum to allow for optimal recovery and also because I am underweight and malnourished (not that I could help it of course my surgeon knew). I will be having the second surgery in March for the full reconnection during my spring break of pharmacy school. This year I will be spending Christmas in the hospital, but I agree that dealing with this condition has really taken a toll on my quality of life for almost 9 months now so I am ready for a change. My surgeon has dealt with several cases of this condition and she has reassured me that this is the best option since there is no way of making the colon work again on its own. In addition, she has told me that many of her patients are living happily and have much better qualities of life after having had the surgery. I wish you luck and I'll be thinking of you once I get my surgery because it will be a week after yours! God bless


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## annie7

ksl--best of luck to you with your upcoming surgery. it sounds like you have a terrific surgeon. it's tough spending Christmas in the hospital but it will be so worth it when it's over and you've recovered. i've read so many colectomy success stories. it truly is the light at the end of the tunnel.

keeping both you and miss beany in my prayers--God Bless!







annie


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## ksl2017

annie7-thank you very much! I truly believe that this is the light at the end of the tunnel as you said. Its all about the quality of life and I feel that this is the best option. I appreciate your prayers and I too shall post my experience and comments post-operation to try to answer any questions other individuals might have. Happy Thanksgiving to everyone!


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## annie7

good luck, Miss Beany on your surgery tomorrow!

wishing you success with the surgery and an uncomplicated recovery and the light at the end of the tunnel!

keeping you in my prayers and sending positive healing thoughts your way, annie


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## Miss Beany

Annie- thank you so much!!! I am terrified...and my prep effects are still going, taking forever to clean out even though I started on time. Guess that is thanks to colonic inertia. It is surreal that this is the last night I will have a colon...i know my life is going to drastically change come tomorrow morning, and i am just hoping i am making the right decision.

Thank you so much for your kind thoughts and words - i will try to post once i am alert and aware.

Gina


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## annie7

Hi Gina

oh yes i think you've made the right decision--you've been through such agony for such a very long time. and i've learned inertia just gets worse with age--at least it sure has for me.

hope you got through the prep ok. and you're right--inertia makes all that go slower too. i never did get all my prep out for my colonoscopy last year.

thinking of you today!!! and sending positive healing thoughts and prayers! annie.


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## ksl2017

Miss Beany,

I hope your surgery went well and I send my prayers to you as well. I am finishing up my finals for my first semester in Pharmacy school and the time has gone by so quickly that I noticed you already had your surgery. Mine is in five days on December 20th so it will be here in no time! I hope you recover quickly and we will have to post our experiences for others to hear about! I have heard lots of good results from other friends and family members who work in the medical field so I'm hoping it holds true. We will have to see for ourselves of course, but once again I wish you a speedy recovery!

Kymberly


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## annie7

Kymberly--wishing you all the best with your upcoming surgery. and oh yes i've read many success stories. you are on your way to a better life. i will keep you in my thoughts and prayers--sending lots of positive healing thoughts your way.

and Miss Beany--been thinking about you and praying for you and sending lots of positive healing thoughts your way as well. i do hope your surgery was a success and that you are getting better and stronger everyday.


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## annie7

Kymberly you mentioned you'd be getting a temporary ileostomy for a while..if you're interested, here is a really good support board for people with ostomies--temporary or otherwise. lots of very helpful, informative and supportive people--lots of tips and tricks for dealing with ostomies etc:

https://www.inspire.com/groups/ostomy/


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## ksl2017

Thank you very much Annie! I shall check that link out for sure ...thanks for your prayers and i'm glad that we are all finally going to be getting the best medical help and moving on with the next steps in our lives after dealing with this health issue for so long. It truly is wonderful to have such support, so thanks again!

Kymberly


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## annie7

Kymberly--Good luck to you on your surgery tomorrow! i will continue to keep you in my prayers especially tomorrow! hope everything goes well and that you have a complete and uncomplicated recovery.

sending lots of prayers and positive healing thoughts your way--annie


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## Miss Beany

Hi Everyone - sorry i have not updated on here bit recovery has been rough. Surgery was a success - took about 4 hours. I'm still in the hospital, nauseous constantly, really have no control over liquid bowels and have had many accidents. Been many bumps in the road. I know this was the right decision though even with these difficulties. My surgeon held my hand in the OR until I was asleep and he was by my side when I woke up in recovery,Letting me know that my entire colon just looked lazy and was lacking muscle mass. We had made the right decision. So every time I've gotten frustrated this past week I keep reminding myself, this is the best decision in g he long run and things will get better. More to come...


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## Miss Beany

Kymberly-- my thoughts and prayers are with you for tomorrow. Remind yourself this is the best thing you can do for yourself longterm and that this too will pass. If you have any questions about what to expect when you wake up, send me a message. Praying for you!! Gina


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## annie7

oh Gina!!! so good to hear from you!! i've been thinking about you and praying...

so sorry you've been having problems--but yes it will get better. yes it is a rough recovery isn't it. at least it was for me--yes--all the nausea, NPO for thirteen days, they even had to re insert that horrid NG tube --veins collapsed and then i got a picc line and TPN which was a good thing actually since the nutrition in that turned me around and also made my edema go away thankfully. long story but i survived







--but yes it's all worth it in the end once your body finally begins to recover and get used to a whole new way of pooping...

and your surgeon sounds absolutely terrific!!! what a wonderful, caring man. the best! so glad you have him taking care of you!

and oh yes--with your colon in that terrible state this surgery was truly was the ONLY thing you could have done--you've tried everything else and suffered for so long. you are so right--it is the light at the end of the tunnel--the best and only decision at this point and will be so worth it in the long run.you are a very brave, strong woman, you'll get through this and oh yes-- things will get better.

praying for you and sending lots of positive healing thoughts your way---annie


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## ksl2017

Annie and Miss Beany,

Thanks so much for your prayers. My surgery went successfully too on Friday morning, took about 4 hours as well. My surgeon said that my colon was very stretched out and that this certainly was the best option for me to improve my quality of life. She said I barely bled at all and that I was a tough cookie hahaa. As I mentioned, I have a temporary illeostomy right now because I was so malnourished that they wanted to get my nutrition back up before I got the full reconnection so in March I will be having my second surgery to reverse the stoma. I am on day 3 of recovery and things are going well. Obviously just sore all over my abdomen, but they have been helping me walk everyday and drinks fluids which has woken up my bowels. The staff here at Cleveland Clinic is simply amazing. I will be advancing my diet tomorrow with some actual food so I am excited to see how I handle that. But I am glad to hear about your success as well! We are strong women and I know our lives are going to get better after we heal up  Always staying positive! I wish you both a very Merry Christmas and Happy Holidays! If you have any recommendations once you start your post-operative diet too don't be afraid to give suggestions because I am curious to see how it goes for you with the full reconnection  Best of luck on your recovery!

Kymberly


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## annie7

Kymberly--thanks for the update! so glad to hear your surgery went successfully! and oh yes, with your colon as stretched out as it was surgery was definitely the only way to go.

that's good you are up walking and drinking fluids. walking is so good for you even though it hurts with the abdomen so sore and everything. i walked a lot when i was recovering--both in the hospital and at home. several short --10-20 minutes--walks a day. as much as i could manage without overtiring myself. i got tired pretty easily especially at first. this surgery does take a lot out of you so don't push yourself--and it will get better with rest and recovery.

and that's great you are progressing to real food today! hope that all goes well for you. i remember how happy i was when i could finally eat--lol..when i finally got off of NPO i went to liquids then a soft diet for quite a while and then finally the regular diet--very low fiber because i still have constipation problems with half my colon left. and i imagine your diet with the ileo might be a bit different until you get reconnected.

so happy to hear you're getting such excellent care at the cleveland clinic! and hopefully you're getting a lot of great help from the stoma (WOCN) nurse as to how to handle the ileo.

i do hope you can have as good a Christmas as possible even though you are in the hospital and hopefully--fingers crossed and prayers said--you'll be home for the new year.

and yes you are so right--your life is definitely going to get better now that you've had the surgery! and yes--always stay positive and strong!









please do take good care of yourself. sending lots of prayers and healing thoughts your way---and to Gina as well---annie


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## Miss Beany

Hi everyone!

Kimberly I hope this note finds you healing well!

Because I was unable to keep any type of liquid or solid food down and kept vomiting everything up, my surgeon opted to talk me into getting a pickline started with TPN last Friday. He said he hoped by starting this my malnourished body would get the nutrients it needed meanwhile giving my stomach and bowels a break. I had a miraculous turn around between throwing up Friday and getting TPN Friday night. By Saturday morning my nausea magically vanished and I finally felt okay. My bowers also appeared to feelingly be waking up. When my surgeon came in to see me he started praising the TPN 'gremlins' and was so relieved. He asked if i wanted to throw a curveball in and try some solid food on my low residue diet. I gladly accepted the challenge. The first thing I got, and successfully kept down was a turkey sandwich (just turkey and a little mayo) on white bread. Later that night i had chicken salad (just chicken , no additives other than mayo) on a deli white wrap. Again, success. My surgeon was ecstatic come Sunday morning and I was eating solid breakfast as well. At this point he said I could come off TPN as I could handle eating on my eon and asked if I wanted to go home...I said YES!! I was so thankful for this turnaround, had not been on any pain meds, and my bowels were happily sending me to the bathroom 15+ times a day which I was relieved about because they were working!!

I did go home Sunday afternoon, got a bunch of food with my mom per my new diet, and even was able to grab a bite at Applebee's with her for dinner (even tho it was just BBQ chicken in a white wrap). Things appeared to be great.

My mom wanted to stay my first night home just to be sure I was ok. Good thing she did. When I tried to go it bed that night, I couldn't lay down because I had awful stabbing pains in my lower left side that literally prevents me from breathing or taking in deep breaths. I tried taking my pain meds dialaudid hoping they would fix whatever this was. They didn't. I laid in fetal position on my left side as that was the only way I'd get any air. Figured maybe it was trapped gas from surgery. Every time I got up to have to run to the bathroom I almost fell backward because of the pains and not being able to breathe. My mom rushed up stairs, we tried different positioning in bed and pillows - nothings worked . Around 8am after I had passed out again, I woke up to go to the bathroom again. This time, same things happened only I fell and couldn't stand or talk. My mom was back upstairs . I told her to call the surgeon. He told me I needed to go to the ER immediately.

We rushed back to the same hospital since all my records and doctors were there. Got there by 10am, I knew I was being admitted by 12. The only thing they knew and really only thing they still concretely know is that I have pulmonary effusions in my right lung, fluid, and it appears to collapse at certain angles and when I take deep breaths. My white blood cell count and platelet counts have been very high. I have my surgical team, pulmonary, internal medicine , and infectious disease doctors investigating this issue right now. Have another chest X-ray scheduled for tomorrow morning, possible a whole body scan to ensure they didn't miss a blood clot floating around . Pain meds have drastically helped control the pain, but when they wear off I'm back in the same boat. It's a confusing mess right now. I literally was only home for about 10 hours before coming back. Spending Xmas in the hospital was not what I expected...but given how scary this breathing thing is, I'd rather be here then alone afraid. I'm hopeful they may release me tomorrow but that will depend on what we find out tomorrow .

On a good note - I am doing well surgically. I still have been eating my low residue diet , liquid stools have started to slow Down and turn into small semi solid fragments which may just be a result of all of the pain meds I am on. Incisions are healing nicely . I was supposed to get my staples out for the large open incision this week, but at this point I think that will have to wait until next week . Definitely very thankful I went through with this surgery as it is so nice to be able to move my bowels, not get sick after eating, and not look pregnant. I may have zero stomach at all right now but that's ok by me!

Merry Christmas everyone . I do apologize for the book, but I was overdue to update as promised 

Gina


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## annie7

Gina -- oh so sorry about all the lung problems you've been having! it's a good thing your mother was with you when you went home and that you went back to the hospital for treatment.good luck today on all your tests. hopefully with the tests the docs will be able to sort it all out and treat you successfully. it sounds like you have a great team of doctors helping you.

glad to hear you are now doing well surgically and are able to eat low residue and keep food down. i had a big problem with food, too, but yes, you're right--the picc line and TPN was a miracle worker. it turned out to be a lifesaver for me. and that's terrific that your bowels are now moving so well. wonderful news!

i will continue to keep you in my prayers and i do hope the lung problem gets resolved quickly and you'll be feeling better and home soon.


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## ksl2017

Gina,

Thanks so much for the update. Turns out I think they started me on the low residue diet too quickly because I am having backup issues with my illeostomy and am back in the same constipation and bloating boat. I'm trying to be patient and wait for my bowels to wake up as they said it can take several days for the stoma to function properly. I'm glad to hear you are having success. I have not been released from the hospital yet because they want to see how my output is with the ostomy and the diet. I'm a bit nervous because it seems like I am just back at square one, putting stuff in me that doesn't come out (even into the bag this time). Hopefully things turn around in the next couple of days or they find a resolution to this problem. Your story makes me very hopeful for the day when I get my full reversal and the whole attachment to the rectum. Wishing you both Happy Holidays!

Kymberly


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## annie7

Kymberly--sorry to hear your bowels have been slow in waking up. from what i've read from other peoples' experiences it can take a while sometimes--mine sure did--took quite a while. what finally got mine going was when they finally took me off the IV's (they had to --all my veins had collapsed) and put in a picc line and put me on TPN--real nutrition with protein and some fat,vitamins etc. that woke my bowels up. it was a miracle.

and my surgeon and the nurses all said that bowels being slow to wake up can happen sometimes--the body is in a bit of shock from the surgery and it can take the bowels a while to figure out what to do with their new situation -- figure out how to function now-- and "wake up". and yes it's hard to be patient and not worry---i had problems with all that too. fingers crossed and prayers said that they'll wake up soon...

take care...keeping you both in my prayers, annie


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## Miss Beany

Hi Everyone!

I did get to go home on Thursday afternoon, being reminded to stay on top of my pain meds before they wear off (since the right pulmonary effusions, fluid, and collapsing are still there) and to be sure to keep walking and do the breathing treatments. My surgeon felt awful I spent Xmas in the hospital, but said he was thankful i was there because he has been worried as anything about me. I guess my mom scared him to death when she called him monday morning saying I couldn't breath. He has since emailed me to tell me what i am able to do and not do at this point in recovery, again reiterating he is thankful i am home and stating they still are not sure what caused me not to be able to breathe, but just thankful i am okay now. Not to hesitate to contact if that happens again though.

Surgical-recovery has continued to be going well, though my bowels feel backed up again at times. I just try to increase fluid intake (hot tea seems to help a bit) as my surgeon did tell me to make sure to keep drinking a ton throughout the day to 1) keep hydrated because I am losing so many fluids whenever i go to the bathroom, and 2) because the liquid will help move things through the small intestine. The last thing I want is some form of blockage. I do get severe abdominal pains when i stand up at times, i think related to going to the bathroom. For this, I asked if i could use a heating pad - he said that would be fine. In terms of exercise, I am supposed to stick with walking for the next two weeks, then can slowly introduce my ellipitcal back into my routine. Food wise- sticking to the low residue diet. Things I have tried, that you may want to keep in mind Kymberly are: turkey lunchmeat on white bread with mayo; chicken salad (from the can, or chunks of cooked chicken with mayo) in a white pita wrap, flatout wraps are really good and pretty healthy for you; egg beaters with a piece of fat free american cheese (I traditionally do not handle cheese well, but do like omelets...but given i can't have vegis, i am trying this); white rice with roasted red pepper soup from target - box kind, no chunks, just liquid, add a piece of white pita bread; i tried some califlower, broccoli and carrots steamed and boiled so very soft with this soup last night. Went down fine, still okay, just got very full, very fast; chicken breast with seasoning or bbq sauce in white wrap; chicken lunch meat with mayo on white bread; bagel with cream cheese; white toast with peanut butter. To this point, those are really the only foods i have tried. i guess i am tending to stick to things i know agree with me. I also asked my surgeon about alcohol given new years eve is coming up this week - he said alcohol is ok, just a sip and see what happens. Now, mind you, i do not drink that much regardless, but this was semi-comforting to know, especially if i decide to go to my friends' new years eve party (which i am still leery about given there will be limited foods i can eat there, plus i worry about having to run to the bathroom).

In terms of my bowels - a week ago they were flying out of me and i was constantly having accidents and had to sleep with a bed pad under me in addition to wear two pads back to back so it would collect depending on my position. Now, i still wear a pad to be safe, though (knock on wood) haven't had any accidents. I do not sleep with the pad under me anymore - that stopped as of Monday when i was re-admitted to the hospital. I feel like my rectum is getting signals when it is time to go, and i am also able to hold it for a few minutes if i am walking and need to get there - for e.g., i was walking my puppy this morning, we were about halfway done and had a half mile left. I got the sensation, stopped for a minute, but was able to continue my walk. No accidents. I did have to buy two different kinds of cream for my butt because it is raw - the one the hospital gave me, the other one my surgeon swore by - Calmoseptine. You need to get that one from behind the counter in the pharmacy. The other one is just a vasaline-like substance they gave me to use in the hospital. I also have a type of silk powder prescription they used in the hospital, but i find that hard to use on my own.

Kymberly - i understand what you mean with your bowels being slow to wakeup. I am also sure you are on pain meds, which all work to slow things down. I think what really woke mine up was a toss up between the TPN and the fact that i was actually able to not take pain meds at all from Friday - Sunday of my last three days in the hospital. I was lucky though, for whatever reason, i did not have much pain, but i think my pain threshold has gotten significantly higher having been through 3 abdominal surgeries by this point. We also switched my pain meds off of using dialudid to purely using the Toridol - what do they have you on? The only reason i take pain meds now is for the lung pain, but also for the abdominal pain.

Hang in there...i am sure things will start turning around for you. Have they suggested TPN for you yet? It was basically after i had been there for a week without eating that my surgeon said he needed me to do that.

Thinking of you!

Gina


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## annie7

Gina--so relieved and glad to hear you are home now and that your recovery is going is going well for the most part. i do hope your lung problem and pain soon gets resolved, i had abdominal pain for quite a while after surgery but mine was an open surgery not laparoscopic and it takes longer to heal from that. and the ab pain does get better over time. you're doing the right thing to keep walking--that sure does help.

keeping both of you in my prayers...


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## ksl2017

Thanks so much for the recent posts. I was just discharged from the hospital and got home yesterday. My bikini line below my belly button is where my laproscopic scar is and it is EXTREMELY sore still. It still hurts to get up and walk around even, but I am forcing myself to because I am trying to wake up my bowels still. They just seem to have minimal lack of motility and I am hoping this is just due to the major surgery. I am trying to be patient and listen to my doctors and nurses who said that it can take up to 6-8 weeks for this recovery, but I am still just worried about the bowel waking up. They did perform the attachment already to the rectum with the end of my small intestine so that is on its way to recovery and healing currently while I wait. As I mentioned I have a temporary loop illeostomy right now until my reversal in March. So far I have eaten very small meals (mashed potatoes, saltine crackers with pb, french toast, mashed bananas, eggs, ice cream), chewed my food extremely well, but the stoma output just isn't very much so its hard to want to eat if you keep putting stuff in and nothing is coming out.

Annie-you mentioned you had abdominal pain for quite a while after surgery....do you recall about how long it took for your recovery and what your appetite was like? Basically anything you can recall from your surgery and recovery would be helpful! I am staying positive and being patient because they keep telling me it will take some time and obviously its only been 9 days since my surgery. If you have any suggestions for waking up the bowels or even any exercises that would be helpful 

Gina-I appreciate the food suggestions...I am sticking to very very soft foods right now until I can get some output from my stoma. I don't take any pain medications right now and I am trying not to take any actually because I don't want it to slow down my bowels any more....if you don't mind me asking, I was wondering if maybe you could mention to your surgeon why some surgeons recommend this temporary illeostomy compared to just having the total surgery such as yours. My surgeon hasn't mentioned anything about TPN and they feel I can get my nutrients back up before my reversal. She said the illeostomy was basically for trying to get my nutrition back up before just jumping into the surgery, but from what you are posting, it sounds like your recovery is going fairly well  which is great to hear and read about. It makes me very hopeful for the future.

I passed all my classes for my first semester of pharmacy school even and I am extremely proud of that, but I am deferring my second semester after this surgery because all I can manage right now is trying to take care of my body lately. It is a major surgery and its going to take some time to get back to normal. I used to bicycle a lot so I am hoping that when my abdominal pain by my scars goes down I can start cycling again and that will hopefully help immensely with the motility in the bowels. But as I mentioned, if there are any exercises you can recommend or any tricks for the bowels....do either of you have suggestions such as the warm tea, miralax, heating pad?...anything like that would be helpful....I currently actually heat up all the fluids I drink to help with motility and I'm always cold too so that just helps in general.

On a side note, I don't feel any lighter after having my whole colon removed hahaa Looking forward to hearing from you both 

Kymberly


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## annie7

Kymberly

so glad to hear you are home now but yes, i do understand your concern about the stoma output and bowels waking up. it does sound like you're doing the right things as far as walking as much as you can--walking does help to stimulate the bowel. that's what helped me the most. and it was the only exercise my surgeon approved for the first three weeks.

my recovery from my surgery took a very long time partly because i was in the hospital a total of 16 days--13 days NPO. i couldn't keep food down and my bowels were very slow to wake up. i lost ten pounds while in the hospital so when i left i weighed only 87 ( had a BMI of 16) and i went in with an emergency situation--vomiting, passing out etc due to a cecal volvulus--that's why i had the surgery--it wasn't elective; it was to remove the twisted colon--the twisted half. so all that and the weight loss was a big shock to my body in addition to the surgery--which was open surgery-- itself. the nurses and surgeons all told me that for every day spent in the hospital you can plan on needing about three days to recover. my biggest problem during my recovery was extreme fatigue and exhaustion. it took me almost three months before i got most of my strength back. i very quickly found out i couldn't push myself and do too much too fast.

gaining back my lost weight also helped with my energy levels. my appetite was extremely poor at first because i was NPO for so long. i'd get hungry but i felt full very fast. had to eat lots of small meals and snacks--stuck to a low residue diet.

and yes i had ab pain for quite some time after surgery but it was open surgery so that's probably why. and it was the sort of pain that did get better as time went on and i healed.

if you haven't already done so you might want to check in on the ostomy board i mentioned earlier. the people there are very friendly and helpful and i'm sure they can answer a lot of your questions about ostomy recovery and pain management, stoma output, waking up the bowels etc. i read that board regularly just in case i end up with an ileo with my next surgery.

http://www.inspire.com/groups/ostomy/

and congratulations on passing your pharmacy classes!! that's wonderful!!! yes you should be very proud of yourself! it's not easy being so sick with constipation and going to pharmacy school at the same time----good for you! you are indeed a very strong woman!

please do take good care of yourself. annie


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## annie7

Kymbery--i should also mention--the regular Inspire board--AGMD motility disorders support board--has quite a few colectomy and post-colectomy threads on it. here is the most recent one but there are more--you can search for "colectomy"

http://www.inspire.com/groups/agmd-gi-motility/discussion/what-is-your-quality-of-life-after-your-colectomy/


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## ksl2017

Thanks Annie, I checked out both of those sites today and I have posted some stuff and am hoping to get some responses. I am a bit concerned that the slow transit has transfered to my small intestine too as I have read some other stories where this has happened in patients. One thing I am finding out however is that mostly all who have had this condition diagnosed have not had a temporary ileostomy. They have only had the total colectomy with the full reconnection done. I will be contacting my nurses however if things don't improve the next couple days.

Kymberly


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## annie7

Kymberly--if you're not having any stoma output at all i think you should either call your surgeon or go to the ER---you don't want to have a blockage . the ER can check that out.

i hope you get some answers quickly from your posts on AGMD. really, not to alarm you but no output at all is def something to investigate. i would at least call the office right away tomorrow.

i'm no expert of course but i do have a couple friends from the board with ostomies and have been reading there for a while. i remember people saying drinking coconut water, white grape juice helps with a blockage and yes also hot tea, coffee.

good luck---fingers crossed and keeping you in my prayers.


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## annie7

also--i remembered that Deepak Dhillion had a temp ileo in june and then had the ileo takedown surgery and a colectomy in early december. sounds a bit like your situation. have had heard back from him on how he's doing--fingers crossed he's ok. here's a link to his post and i think his e-mail address is in there also

http://www.ibsgroup.org/forums/topic/167892-surgery-booked-for-constipation-total-colectomy/


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## Miss Beany

Hi Kymberly -

Just wanted to check in and see how you were feeling? I also had some thoughts for you regarding why your output might not be that much. For me, at least for the first week, it was just liquid stuff that was yellow, not that much. i k ept asking why, and i was told it was because i wasn't consuming anything to really make more or anything with more substance come out. Maybe that could be it? Have you had any nausea/vomitting? I have faith that things will get better for you, i just think it will take time. Not only did you have your colon removed, but things now have to go through a different opening and become adjusted to that for a time until it is reversed. The reason i think my surgeon did not opt to move to a temporary ilestomy was that 1) I wanted to avoid that at all costs, 2) i cannot take off any time from grad school as it would set me back substantially due to the internship and field work experience, and 3) i just wanted to get this over and done with. He felt because my anal mamometry tests came back okay, even with some pelvic floor dysfunction, it was worth it to go with the ileo-anamosis. Now, if things, like the incomplete emptying that i have which was continued even after surgery, continue and i am miserable, then i will need to get another surgery for a permanent ilestomy...i just really want to try to avoid this because i am 28 and would ideally like to live a normal life at some point. But, if it is going to be the best thing, and if i get miserable and get to my wits end, i know there is an outlet...just one i am not ready for at this point in time.

As far as why my surgeon opted for the TPN - i have a past history of anorexia and malnutrition, which may or may not have contributed to my overall problem because i was anorexic from 12 to 22. While i have been in recovery for the past 5, almost 6 years, my surgeon was well-informed of all of that, especially before my first surgery as i thought it was my fault for having rectal prolapse from the malnutrition and anorexia. After all of the tests however and finding out it was colonic inertia and slow transit constipation, he told me to stop blaming myself. Regardless, when i went into the hospital for this surgery, i weighed about 100 (i'm tiny, 5'0). Now, my weight is dwindling in the 90s. My heart rate was very rapid when i was in the hospital, my blood pressure very low, and my blood tests were not coming back good in terms of electrolyte and potassium balances...so that was another push for him to push me on the TPN. He also said that after a week, if his patient isn't eating or keeping food down (mind you, he made it explicit that my case was complicated because of my extreme nausea and stubborn system) that he begged me to get on it because he was afraid that the lack of nutrition was substantially push back my ability to heal, my bowels ability to start working (and he feared they wouldn't work because, as he said, i am not out of hte woods for permanent ilestomy). So I think all of that paired together made him beg me to get it started. I was totally against it...i hated the idea of liquid nutrition because it brought back bad memories from when i finally got help on my own for my anorexia, and the threats of needing that and a feeding tube...so needless to say, i was freaking out a bit, even if it wasn't the same thing at all. I just wanted to be able to give my body the nutrition it needed and my body was not cooperating! 

As far as me and how i am doing now - the foods, even though it is the same thing basically every single day lol, is going okay. I do get awful pains, especially at night, when i standup. Sometimes it relieved after going ot teh bathroom, but not completely. It gets hard to standup straight. Don't know what this is, if it is some reaction to something i am eating, or what, but something i will likely discuss with my surgeon when i have my followup appointment January 17, or if it gets worse ,via email before then. I am dealing with a ton of utter exhaustion, lack of energy, and feeling short of breath a lot, especially when walking up stairs or exerting myself, or even walking, in general. My cold night sweats are also starting up again...and so is tightness and pain in my chest. I am going to keep a close eye on this and if it continues for the next two days, figure it would be worth an email to the surgeon to be sure there is no reason for concern, particularly because i am at risk for developing penumonia after the plueral effusions and fluid in my right lung. Anyone ever experience this before?

At any rate, I wish everyone a happy, healthy start to 2014. May this be a good year for us all 

Gina


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## annie7

Hi Gina--

it's good that you have your appointment with your surgeon coming up so you can discuss with him all your issues and even better if you can contact him or his office whenever necessary with any questions or problems you have. i wouldn't wait for the appointment if you have concerns--let him or his office know right away. that's what they are there for.

i had lots of utter exhaustion too. gastro surgery takes a LOT of of a person. it's a tremendous change to your body and your body needs lots and lots of rest and time to heal. as i learned, you can't rush it. just rest, keep your nutrition up, have patience and let your body heal.

wishing you and Kymberly all the best. hope you both have a healthier happy new year--- and the same to everyone else on the board as well.


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## ksl2017

Gina

-I had all those symptoms too while I was in the hospital during my recovery. Low blood pressure, electrolyte imbalances, low potassium (they were giving me pill supplements for that). Once I was able to walk they discharged me after eight days in the hospital. But basically once I have left, I haven't been able to get my nutrition back up because I have had issues trying to get my foods through the ileostomy. And from learning more about what they diagnosed as slow transit constipation this might seem to be counter productive trying to get food to go through a small opening in my abdomen. I have had the total abdominal colectomy and the ileorectal anastomosis surgery already and basically am just bypassing this right now with the temporary ileostomy. I am going to the hospital tomorrow because my output had basically been none today and after calling the nurses they think I may have an obstruction and told me just to drink liquids and go to the ER when possible. (I live in Wisconsin and it is extremely cold out so my mom wanted to wait to bring me until the morning). Its odd though because I just feel distended in my belly, but not like i'm going to throw up. I've drank about 80 oz today and all I did was urinate a little bit, but nothing out the stoma. The nurses suggested all the following: gatorade, white grape juice, prune juice, hot apple cider. And I drank that amount split between all of those beverages but basically just nothing happened. If this continues to occur, I know I can't keep going to the ER everything I'm having a backup with the ileostomy. I'm wondering if it would be better just to ask about the reversal sooner and see if my body adjusts since I have had 2 weeks to let the original surgery heal a bit on its own. Just some thoughts. But I shall continue to listen to the doctors suggestions and give some of my own input. One of the nurses did mention the possible need for TPN if the ileostomy isn't functioning. I don't think I'd be opposed to this because I just need any type of nutrition my body can handle right now. Especially in the winter because I too only weigh 100 lbs and am always cold. Thanks as always for the input!

Kymberly


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## annie7

Kymberly--so sorry your output hasn't increased! that's good you are going to the ER today--they can help you. TPN was a miracle for me--it turned me around and made my bowels finally start to function plus i started to feel and look so much better. i just needed that nutrition--desperately. like you, i'm quite thin and losing all that weight while in the hospital on IV's didn't help.

i think your thoughts and ideas about your surgery etc are good--tell your surgeon. at least you will be able to find out what her reasoning is behind giving you the temp ileo. i was a bit surprised to hear that she wanted you to have a temp ileo because i'd always read on the ostomy board from people there and my friends who have ostomies that it's usually hard to keep your weight and nutrition up with an ileo because everything moves through you so fast--once it starts moving that is. and i've read about people getting a temp ileo first with the colon still left in there to see how they do without using their colon and then if they do well with that the surgeon reverses the ileo and performs a colectomy but in your case she's already done the colectomy... but of course a medical expert i am most definitely not lol --and your surgeon is--so it would be good to hear her point of view. and maybe she'll agree with you now.

good luck--keeping you in my prayers! keep us posted! annie ps--it's miserably cold here too (michigan) minus 12 yesterday. today's a bit of a warm up with a foot more snow and windy coming tonight and then even colder next week. keep warm! think summer!


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## Miss Beany

Kymberly -

My thoughts are with you this morning as I am sure you are venturing off to the ER. Please keep me updated. Hopefully it is an easy fix for you and not something they will have to readmit you for. Better to go and get it checked versus be uncertain and have it be a bigger issue later. Hopefully your surgeon too will listen to your want to have the reconnection surgery now versus later - I still do not quite understand why they did not connect you up right away, but hopefully she will be able to shed some light on that. When you are reconnected, it feels like it did before, only difference is watery diarrhea many times per day (for me it is at least over 20 times, if not more per day). Your butt will be raw, but at least how i feel is I am thankful stuff is moving around and not sitting in me making me sick all of the time anymore. Hang in there...you will get through this. I will be thinking and praying for you. Think of it as a hiccup on the road to recovery - you will rise above this, just as you have risen above all else up until this point!









Keep us posted! <3

Gina


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## ksl2017

Hey guys, sorry I haven't responded in a while. I had a doctors appointment yesterday and they did a small bowel follow through where I had to drink this nasty gastro drink stuff which they said would really loosen up things if there was a minor blockage. Although the test took 3 hours to reach my ileostomy, I'd say it worked because I started emptying my bag about 4 times after that. The doc advised me to double my fluids whenever I eat so I usually drink a bottle of vitamin water and he said to drink 2 of those after every meal so things will really loosen up down there and not get caught up. I still have my reversal scheduled for March and they just want me to eat soft foods until then for sure since it is very slow transit. But there were no kinks or anything major from the Xrays thankfully. I just have to be careful and keep resting and allowing the ileostomy to heal as it is still slightly swollen even. Thanks for your comments and concerns. I really feel like going through this is making me a stronger individual. It would be nice if I could have a mall close by to get some more exercise in, but it turns out I live an hour from the closest mall even so its not ideal for my situation hahaa And it doesn't help that its a winter wonderland outside or else I could walk more outside. Its 3 weeks post op and my bikini line scar is healing up better. It doesn't hurt as badly to sneeze or cough hahaa i'm sure you both know what I mean when I say that! I do agree Gina that this is just a hiccup on the road to recovery and I need to continue to be a patient compliant young adult about the situation and follow the doctors orders as they do know best since they deal with colon surgeries on a daily basis. I've mostly just been at home watching movies and trying to walk around my house since I still get extremely tired just even walking around the grocery store with my Mom or taking a shower. I'm sure this is all part of the process and being 23 I think this has taught me that I need to be more patient as I am often a worry wart and usually always on the go. Now I will have the rest of this month and all of February to let my body rest up.

Gina, I do have a few questions for you now. How is your recovery coming along and have you noticed improvements with the bowel habits? Also do you recall when you started exercising after your surgery? I had a friend at Cleveland Clinic tell me she couldn't start exercising until 6 weeks post op surgery, but I know everyone's body is different. And Annie, if either of you have any recommendations for some exercises I could do at my house to keep my bowels "awake" I guess I'd certainly appreciate that  One good thing about watching TV at home is that the Olympics will be starting in February so that gives me something to look forward too. I'm running out of Netflix movies to watch it feels like hahaa Looking forward to hearing back from you both, hope your week is going well. Please keep me updated on your statuses too with your health as always.

Kymberly


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## annie7

Hi Kymberly

good to her from you and glad you are finally having output from your stoma.

yes you're right--be patient, rest and allow yourself to heal! i learned that the hard way--i'm used to being on the go, too...

you're doing the right thing-- walk as much as you can but take care not to over tire yourself. walking does help to stimulate the bowel. that's what the surgeons and nurses kept telling me and i found it is true. that's what helped me the most. and it was the only exercise my surgeon approved for the first six weeks after surgery. no other exercises like bike riding or the elastic bands that i use til after at least six weeks but it might be different for you because of the stoma so i would def ask the surgeon's advice on types of exercise and when. i know stomas can be tricky and you don't want to get a hernia--it's easy to get a hernia with a stoma if you aren't careful.. many people on the ostomy group say getting a special hernia belt for the stoma area is a good idea if your going to do any other exercise beside walking. ask your surgeon or your WOCN or ask on the ostomy board for more info...

yes--i was walking indoors too. my surgery was in july and i came home just as a triple digit heat wave set in. i was just to weak to walk outside and endure that oppressive heat. now--after that nasty polar vortex we just had--i'm longing for heat--lol....









please take good care of yourself and yes- stay patient. you will get your strength back and feel better soon. annie


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## Miss Beany

Hi Kymberly!

So glad to hear you are home and doing better! I was concerned and wondering if they had admitted you to the hospital when you went into the ER. You have definitely be in my thoughts and prayers.

I am finding too that the more liquid I have in my diet the easier things are for me, and the better I feel. I have been extremely dehydrated, but that is likely going to be a constant struggle for some time until things regulate, is my guess. I know my surgeon had told my Mom and best friend after surgery to make sure I keep myself well hydrated at all times, and that I will constantly need to keep drinking water. Guess that is definitely the truth!

My recovery is coming along well - still have a lot of liquid stools and still emptying anywhere from 10-20 times per day; pretty much whenever I go to the bathroom liquid comes out. I have had some stool with more consistency here and there, but i am thinking that is likely due to me trying a few different foods here and there (for example, I love flavored almonds and know I am not getting as much protein as I used to...so I have been having a few in the morning. So far, so good!). I am also going crazy on this low residue diet and am absolutely dying for one of my favorite salads in the world. So I think this week I am going to attempt it, make sure to chew things up really good, and see what happens - only way to know right? I figure this was the best way to try it since I have an appointment with my surgeon on Friday. I am hoping at that point he will also be okay with me adding more foods in, or at least trying new foods and keeping track of what works and doesn't. Other than that, I am still on the same diet and same foods I had mentioned before = boring and bland. Granted, it has worked and other than stomach pain, no other complications have arisen in that department.

I started walking my dog around the neighborhood, which is roughly a mile, pacing myself, the day after I got home from the hospital (2 weeks post surgery). I had also emailed my surgeon and asked him when I could resume using my elliptical. He had said the next week (which would be 3 weeks post surgery). I have been doing it since and find it definitely helps move my bowels along more, sometimes annoyingly so because I have to sometimes stop in the middle and run to the bathroom. I also notice that I have pulling and rather painful stabs of pain on my mainly right side, sometimes left, when I am doing the elliptical or even walking, or doing stairs. This may be because I do have an 8-inch open incision from where he opened me up to remove the colon (as my primary care doctor said this week, I had both laparoscopic and open procedure done). It definitely has not been nearly as painful as it was for me when I had my first open procedure in the summer - but my guess is all of those nerve fibers were already destroyed...and i was likely becoming tolerant of pain? 

I had to go see my primary care doctor this week because I have still been having the cold soaking sweats at night, and also get extremely dizzy, blackout vision, and almost pass out whenever I stand. My surgeon wanted me to followup with my primary, so I did. He did bloodwork, which was mostly normal apart from my platelet count, again. He is also sending me to my cardiologist for a tilt table test as he suspects I may have POTS. This isn't the first time i have had a doctor think I have this, but given it is really causing me to nearly pass out, he wants to take the next steps at accurately diagnosing it. Other than that, I am doing well. I am driving again - drove on new years day. I do not think I am going to go back to work at the bar until the last week of January at this point, but need to talk to my surgeon about it. As much as I really need the income (have not worked since December 8), i also do not want to put myself at risk at pulling anything or getting a hernia. I do a lot of lifting there, since we have no barbacks, and I definitely do not think I would be able to do that at this point. But, will see what the surgeon says. I go back to class the week of the 20th.

Cheers to a healthy, happy week. Glad we are thawing out, finally! Monsoon season seems to be here today...with 60 degree weather. Crazy!

Take care! 

Gina


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## ksl2017

Hey,

Thanks for the advice as always, I really take it to heart and utilize it here at home. My output is slowly getting better, feeling less distended and I am drinking twice the amount of fluids I did with very soft foods. Sticking to the soft foods really helped I believe. Even though the nurses said I could eat sandwiches and stuff with the ileostomy, I don't think I'm up to that quite yet as I had that at the hospital and it just really made me feel distended and in pain. So I switched to things more like mashed potatoes, fish, chicken noodle soup, yogurt, boost supplement shakes, ice cream, tomato soup, chili, scrambled eggs, etc. These things seem to be working. The diet is very boring, but I just know I feel best when I eat soft foods and drink a lot of vitamin water and gatorade. Do either of you have any suggestions for the low residue diet? Perhaps any special dishes you find yummy to switch things up? I do have a diet sheet from the hospital, but its always nice to hear some ideas outside the box especially when it gets very boring eating the same thing over and over. I have quite a ways to go until my reversal of the ileostomy in March and I am taking a medical leave of absence from Pharmacy school to heal up so I will have plenty of time to grocery shop and cook some things such as soups and what not. Gina, I know the feeling of craving a delicious salad! I used to eat salads all the time, especially during the summer with fresh fruits, so you will have to let me know how that goes. Perhaps it will be something for me to look forward to after my reversal too  Its funny you mention the symptoms of POTS because oddly enough, I have to sit up slowly in my bed or chair before I get up to walk as I too get dizzy and blackout vision. I always thought this was normal or that it just meant I was tired and dehyrated. But I usually just take it slow whenever I get up. I hope your appointment goes well and you get some answers for the night sweats and other symptoms.

Weather wise it has been in the 30 degree range here in Wisconsin which is when people start making jokes about wearing shorts and sandals because it has typically been below zero for most of the beginning of January haha My sister and I are going to walk around the mall tomorrow and go to a bookstore. Funny it will be my first time really going out in public since my surgery so I am looking forward to stretching out my legs a bit and just walking around!

Wishing you both a happy & healthy start to your week









Kymberly


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## annie7

Hi Kymberly

that's terrific you and your sister are going to the mall and a bookstore today! what fun--enjoy! and yes it is so good to be able to go out especially after surgery. and yes the weather hasn't been too cooperative either. i'm in michigan and that polar vortex was horrible wasn't it. and then it lifted and we had freezing rain friday night. out here in the country all the roads were iced over and dangerous. it's good to be able to finally go out.

about a soft foods diet and recipes. i eat soft, low residue foods now even 7 months after surgery because i still have such bad constipation problems even with just half a colon left. i'm not much of a cook, having lost my appetite when i was 10, 50 years ago when all the constipation problems started. but i did find this great website, "soft foods digest" which has a lot of creative recipes for those on a soft, low residue foods diet. it is run by a woman with gastroparesis and who has to eat soft foods because of that but it's helpful to any of us on a soft food diet--hopefully you can get some ideas/recipes from it:

http://softfoodsdigest.com/

enjoy your day today


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## annie7

also there is this nice long informative thread on the general discussion board of inspire-"foods post total colectomy" --for those wondering what to eat after a total colectomy, both right away afterwards and long term:

http://www.inspire.com/groups/agmd-gi-motility/discussion/foods-post-total-colectomy/


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## annie7

just thought of this recipe i make--roasted vegetables. the veggies all come out very tender and flavorful--easy to digest. and it's nutritious too. you can also add any spices--or other vegetables-- you want to change it up a bit. i do roast them for a bit longer than it says though--20 to 45 minutes-- depending on how much of this i make (love the leftovers!) and to make sure they are soft enough for me--and i use sweet potatoes instead of red potatoes but either works well.

http://www.cooks.com/recipe/s21tv555/roasted-vegetables.html

hopefully it's not too much fiber for you right now with an ileo. it might be more suitable for post colectomy.


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## Kathleen M.

I've been moonlighting in retail and there are a fair number of new organic baby foods that sound really gourmet that may be something that with a little seasoning could make for a good puree of stuff if you are bored and need something quick.

http://shop.plumorganics.com/Stage-3-8-months/c/[email protected]@Stage3

http://www.ellaskitchen.com/ellas_range/ellas-3-toddler-meals/


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## ksl2017

Annie thanks so much! That is very helpful. Ironically, I love sweet potatoes more than normal potatoes so I'll certainly use that in the recipe!


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## annie7

oh good, thanks! glad it was helpful







.

and that's great you like sweet potatoes. they're so nutritious and not gas-producing like some vegetables. i make it with butternut squash since both my husband and i love it and he grows lots of it in his garden. you can use any winter squash.

i've also seen a lot of variations on this recipe using broccoli and/or cauliflower or brussels sprouts-- all of which i have to avoid since they give me gas (although i love them and they are so nutritious). also you can add onions or leeks, garlic, rutabagas and even spinach--just put baby spinach on top of the vegetables right away after removing them from the oven when they're done and then stir the spinach into the mixture and that gives it all the heat it needs. probably higher in fiber with the spinach.

anyway--you can really get creative with it.


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## Miss Beany

Hey Kymberly!

How are you feeling? Are things continuing to improve? I certainly hope so!

So the trial with the salad went...so-so. I did have some pain while eating it (i eat so slowly now, even slower than i did before, and really try to make sure i chew everything really good), but it was so nice to eat it again. The pain did get worse throughout the night, woke me up in the middle of the night and i had to take pain meds again. I'm thinking maybe i should have chewed things more...but waiting to discuss this with my surgeon about diet and foods, and no-nos. I'm going to attempt another salad next week, chewing the heck out of it, and will let you know how that goes .

I did get the clear from my surgeon to return to all normal activities and work - i am healing very good, incision and all! We are keeping a continued eye on the pain that I have after I eat, and during the night (it's not just salads that do it, most foods do), and he wants me to let him know if that persists via email. I also am still having emptying issues, go to the bathroom anywhere from 1 to 20+ times a day; he said it still sounds like there is significant pelvic floor dysfunction there, but wants to give it some time before we attempt physical therapy and we talk iliestomy (permanent). We are both hoping to avoid that, but knew all along that was a real possibility. I actually do not have to go back to my surgeon for a year (wants me to come in and say hi), but also said that he wants me to be in touch with issues via email and phone. So, fingers crossed that my small intestine is just working out the kinks. As I said to him, I have not felt this good in God knows how long! I am so thankful I had this surgery.

In terms of foods to eat - i am still on the low residue diet (actually forgot to ask him about foods and diet, so emailed him to ask this morning). I have found that chicken steaks (steak-ums makes them, 1g fat, around 40-60 calories per steak) are the easiest to digest for me, versus regular chicken (likely because it is already so thin and broken down). So I will do that in a white flatout wrap with BBQ sauce and some shredded lettuce. I also dip it in more bbq as i eat it, cutting the wrap apart (I don't eat it whole or like a sandwich...may sound weird, but i find when i cut it apart and eat it like that, that i slow down and chew things up more.) Another thing that I have found to be really good and digests pretty well is boxed pacific rim? soups from Target--I get butternut squash or roasted red pepper. I'll throw in a few more spices, like basil and paprika, salt and pepper. I then add that to very well boiled veggies (broccoli, califlower, green beans, squash, carrots) to the point they are mushy. I add about a tablespoon or so of rice under it, and have a white pita bread to dip (kind of resembles an indian dish i love, but is much much healthier). This has lots of vitamins, because the veggies are cooked so well i haven't had any issues digesting, and is yummy. Calorie-wise, pretty low in calories and maybe 2-5 gram fat total. For lunch when I am home, I will make egg beaters with fat free american cheese and add some shredded lettuce - easy to digest, though i do see the lettuce when it comes out. I also have made canned chicken salad with some cajun seasoning, salt, pepper, and helman's low fat mayo on a half white flatout bread wrap - i eat it again by cutting it up, and instead of adding celery, i again will add shredded lettuce. Mind you, my system seems okay with shredded lettuce, but i started slow with adding that into things, mostly because i got really bored of just eating things bland without any form of green healthy thing . Hopefully this will help. My diet has remained the same, even though it is a month post-surgery. Hopefully my surgeon will tell me to try some new stuff, and i will let you know how that goes. I feel like eating has definitely gotten more enjoyable, and sometimes it takes trying things more than once to get the body used to it.

I go to my cardiologist this friday - they messed up the appointment last week, so i had to reschedule. Will let you know what happens. My neuro ophtamologist definitely wants me to go and is slightly concerned it may be connected to my heart defect. Hopefully not and not a big deal overall. We will see!

Stay warm! 

Gina


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## ksl2017

Gina,

I am still having the same output which isn't in the range they want although I am drinking lots of fluids. They said this might just be my norm for a while until my intestines can really heal. Yesterday was officially one month since my surgery. So I'm keeping the positive attitude. One more month to go and reversal surgery in February. I drink a lot of boost and ensure if I feel tired and I feel like it gives me the nutrients I need for the day when I feel too full to try to push foods. They said if some days I feel too distended I can just push fluids and wait for some output to pass through the stoma. This seems like a better solution for the discomfort right now. I'm glad to hear things are coming along for you. I forgot you mentioned you used to work at a bar a couple posts back? I myself used to bartend to help pay for school since it was really good money while I was an undergraduate student. I enjoyed it because it was a little hometown bar with a lot of familiar, regular customers. I can relate to your ambition to get back to work as I have held a job since my sophomore year in high school so I'm really not used to being home and not working. I think I get a little bit of the winter blues too since it is so dang cold here in Wisconsin. I've been helping my parents out around the house with chores and I cook for them since my mom works long hours. In fact today I stuffed and prepared a whole turkey for dinner for my family. Kind of like a thanksgiving feast because I made them stuffing, mashed potatoes, cornbread, and corn to go along with it. Although I can't eat much myself, I know they appreciate it. In fact before I got sick I used to cook all the time and host dinner/study sessions with my friends at school! These are the things I miss. So come March when I can introduce more foods after my surgery I will be a happy camper I'm sure haha. But I enjoy asking you questions about your diet and what seems to be working & what causes you pain as you are ahead of the game with the surgery  Let us know about your cardiologist appointment and how that goes.

P.S. I'm 23 years old and I used to drink a glass of wine with my dinner most nights. If you drink a bit, have you tried any wine or alcoholic drinks since your surgery and if so did you have any bad reaction to it? I think you mentioned trying some champaign on New Years but I can't recall. Thanks again and keep us posted as always 

Prayers and best wishes,

Kymberly


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## ksl2017

Annie

I bought ingredients for Panera's baked potato soup too and I'm making that tomorrow in the crockpot from a recipe I found on Pinterest. I'll be trying out all sorts of soup recipes now  And Gina the recommendation about the boxed soups from Target is good. I always add my own seasonings to things to jazz them up a bit. I'm especially a fan of twice baked sweet potatoes too if that sounds appetizing to either of you. Its one of my favorite recipes. I like it because I use yogurt and low fat cheese to make it more healthy and less thick.

Kymberly


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## Miss Beany

Hi Kymberly!!

Greetings from blizzard session in PA! So glad to hear from you!

I'm sorry to hear you are still having issues with your output, but am confident that once you are reconnected, things will be much better. Did they move up your take down to February? For some reason I thought it was March, but either way, I am excited for you to have that! How long is that surgery?

My surgeon did get back to me right away in terms of my question about food - he more or less told me to slowly add fiber foods in and make sure to keep a food diary of it. So I got some light wheat bread sunday and tried to make my chicken lunchmeat w/ mayo and some shredded lettuce on that for lunch yesterday - went down fine, with no pain. I did notice I felt really backed up last night though, and things that were coming out were not so liquidy, and hurt a bit. I also picked up a salad on my way home last night from my fav place - it had spicy chicken, apples, strawberries, croutons, and candied pecans. I chewed everything up really good. No pain after eating, some pain during the night when it was digesting last night, but notice I am backed up again today with again no liquidy stools and what does come out is hard to pass and I feel constipated. I think it's just going to take some time for me to be able to eat stuff like that again - or i need to drink more, one of the two!

I've added in coffee w/ splenda after i eat lunch, which usually seems to help move things though. I also drink hot tea after breakfast and lunch (when i don't have the coffee) which also seems to help.

I've been extremely tired as of late, have to push myself to do things, especially working out - even though i haven't missed a day. I guess that just goes along with the surgery and the fluctuation in energy levels.

I do bartend and am actually not returning to work again until the week of February 3 - actually trying to find a different place to work that is closer to my house since this place has us cleaning up, unpaid, until 4am...and i don't think my body will really function off of 2 to 4 hours of sleep like it used to. I may have to stick it out for a time though...if they let me come back. They've been pretty rude since I have had the surgery, making me want to go back even less. I am back at work at my internship and graduate teaching assistant...and classes were supposed to start today, but with the blizzard...we will see if I even have them tomorrow 

I'm intrigued by the fact you mentioned winter blues - i feel the same way, and wonder if some part of it has to be from the surgery that we had? I mean, it was a huge deal and does take both a huge physical and emotional toll on the body. Winter too doesn't help things as everything is so dull! Hang in there 

Kudos for you for making that meal for everyone today - I am sure they will appreciate it, and I am also sure it made you feel good to do something like that! I too enjoy cooking, and would love doing that or baking for others. It's always nice to bring a smile to someone's face.

Feel free to ask me any and all questions - I'm happy to help and give insight!  This board has been such a lifesaver and form of support for me throughout this entire ordeal...so thankful for that and you all!

I will definitely let you know how the cardiologist appointment goes - the dizziness is driving me bonkers. I also had to get botox injections last week for my complicated migraines (which started after my 1st surgery last January) and my vision has actually gotten worse. Hopefully this is just a temporary thing. Will keep you posted!

In terms of alcohol - you will be fine . The only thing I notice is I get flushed and my cheeks get rosey when I drink now, they didnt' before, or at least I didnt' notice. When I got home from the hospital I was having hot chocolate with caramel vodka before I went to bed; now I just have hot chocolate, but that's because I have to wake up early for class and am really no longer on break . I also have been having a glass of wine whenever I go out to dinner with friends, which is now my drink of choice over martinis. The wine has been completely fine for me (I drink whites, like reisling), so I think you should be just fine!  I find it relaxes me and actually helps my food digest a bit better, if that makes sense? I also make sure to have a full glass of water with it too, so that I sip on it and have the water as my main beverage with dinner.

Keep warm! 

Fondly and warmly,

Gina


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## annie7

Kymberly--sorry to hear your output still isn't so good. good for you for staying positive about it all and yes it's probably, like they said, due to fact that you're still healing. if you decide to try miralax, hope it helps.

that's terrific that you are helping your parents with household chores and cooking such delicious meals for them--even though you still can't eat much of the food--how kind and considerate of you! you sound like a wonderful cook. i bet your parents really appreciate it. the baked potato soup sounds terrific. and with it cooking away in the crockpot all day it will fill the house with a delicious aroma.

oh yes --the winter blues. i have them too.such a long hard winter it's been. i'm in michigan. record breaking snow, ice and cold here. more frigid air here this week and more snow on the way too--like we need any more lol...think summer!

Gina--so sorry about all your other health problems. i do hope the doctors can get it all sorted out for you and that you soon feel better.

keeping both of you in my prayers!


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## ksl2017

Hey!

So I tried some wine the other night and everything was fine like you said. In fact I had more output in the morning after I went to bed. I used to have a higher alcohol tolerance when I was in my undergrad, but it was funny because I became sleepy & relaxed after just one glass of wine haha which was fine by me. I spoke with my GI doc two days ago and he said maybe introduce some foods that would grab along the intestines to have something for them to move along. I was scared because I really was barely having any output with just soft soups, cereals, and yogurts, but I decided to give it a try. Yesterday I ate a soft cheeseburger from a very very popular old time restaurant that makes classic butter burgers (kind of like culvers). But it had onions and pickles on it. I chewed everything super good and much to my surprise by the end of the day I was having more output than normal! I couldn't believe it. Surprisingly I told my friend from Cleveland Clinic this and she said that onions make her have so much output with her ostomy. Not sure if it did the trick, but perhaps I'll try some onions in my omlet next time or something and see how that goes. I am very happy because today is the first day where I didn't feel distended after eating a meal and things were outputting. My mom and I went grocery shopping today and she bought a bunch of cooking supplies so I could whip up some recipes for our family while she works. haha She has enjoyed my cooking and it keeps me occupied like I said. PS everyone loved my baked potato soup, it was gone in 2 days (although we do have a family of 6 hungry individuals haha) I would really really like to try eating a salad in another week or 2 so i might ask my doc about that and see what he says since the cheeseburger thing went alright, but i'm not sure how lettuce would fair with an ileostomy. I love drinking tea too! My brother is into HerbaLife sales which are a lot of protein shake supplements and teas. One thing I have had though that I ironically found works very well is having a shot of aloe juice 30 minutes before I eat a meal. It seems to wake up my intestines and my stoma starts to literally move once I take that. I'm not sure if either of you have used that before or if your not into supplements like that, but I know it does the trick for me so I've been using it for about a week now every morning before I eat. I bought a mango flavored one from my brother  January is almost over and hopefully those winter blues will go away with it. Its always hard to get the body going when its freezing and you just don't want to crawl outta bed. Especially for us when we don't have much body fat and are trying to get our nutrition back up.

Gina-Yes my reversal is actually at the very beginning of March (might have accidently said February, but March it is!)...PS have you tried eating anything with skins on it yet? Like apples or other fruits? Just curious.

Annie-all of my mothers relatives live in Michigan so I know how cold it gets there too during the winter season! Stay warm 

Kymberly


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## annie7

Kymberly--so glad to hear you are finally having decent output! that's terrific! such a relief it must be to finally have things moving and not feel so distended. and may that continue! sounds like your bowels finally woke up and figured out how to work with the new "plumbing".









and yes--your reversal is not far away now!

and hopefully neither is spring. this sure has been a brutal winter, hasn't it. we've had record breaking snowfall here in michigan to say nothing of the wind chills and the extreme cold. and you live in wisconsin where the weather is no doubt even colder. no wonder we are so tired of winter lol... think spring! or better yet, think summer!

next week (29th) i am having surgery to remove the rest of my colon. can't wait to get rid of it!

keep warm, take care, and keep on outputting!







annie


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## ksl2017

Annie

That is exciting about your surgery! I wish you best of luck and hope all goes well. Many prayers your way. Yes indeed, I think I dream about spring and summer so it can't come soon enough haha I think it gets colder in February and then finally starts getting better come March. That will certainly be a plus for me because then I can go for walks after my second surgery since I live on a lake  Are you having an ileorectal anastamosis or an ileostomy? Only 3 days!

Kymberly


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## annie7

oh thanks, Kymberly, so much for your prayers and good wishes! i do appreciate it.

if all goes well the surgery will be laparoscopic (not open abdominal like my ER surgery last summer) and , again if all goes well, an ileorectal anastomosis. i do realize that sometimes if there are complications a patient can end up with an ileostomy--either temporary or permanent--but it's a chance i'm willing to take. however it comes out, it will be so much better than what i have now. which is a colon that does not work--lol...

walks by the lake in the springtime sound wonderful!! heaven!! yes warmer weather is coming and we will all so be ready for it!









thanks again. keeping you in my prayers as well.


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## ksl2017

Annie

Good luck with your surgery tomorrow. Please keep us posted on your progress once you are feeling better enough to post. Best of luck! Stay warm in the hospital 

Kymberly


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## Miss Beany

Hi Ladies!

I saw my emails and only have a minute to reply before I go back to class -- ANNIE! Good luck tomorrow! I will be thinking of you and praying that all goes well. Please let us know how you do!

More response will come...just likely not until Thursday w/ this hectic schedule!

<3<3Hugs!


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## annie7

thanks so much both of you

surgeon just called (5.15 pm) . he suddenly decided he wants more tests--long story.

what a huge disappointment, long story,,,,thanks so much for your prayers and support....


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## ksl2017

Annie,

Oh no, please keep us posted!

Kymberly


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## annie7

yes, this whole thing has really knocked me for a loop--so unexpected. when I went to my appointment with the surgeon on dec 10, I brought in copies of all my tests--sitz, defogram, colonoscopy--and he looked them all over, discussed them with me, the biofeedback i'd done over the summer, etc etc and said oh no problem with doing a colectomy etc etc..and then his staff set it all up for me. and then he called me last night after i'd already done the cleanout and had started taking those awful antibiotics. suddenly decided he needed more tests and cancelled the surgery. so now i'm scheduled for another anorectal manometry on march 28....just more of the same long road...

thanks for all your support and good wishes...i do hope you are doing better, Kymberly and that your output is getting better. take care.


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## ksl2017

Annie

I'm sorry to hear that after everything you've been through. I did have to have the anal manometry test done as well twice even before they performed the surgery to make sure the ileorectal anastamosis would be a success otherwise I would have had to have a permanent ileostomy (which could still be a possibility in the future). Its crazy how long you have to wait for appointments these days. I recall having to wait over a month to get that test performed as well and the ironic thing about it is that it really only takes about 20 minutes total for all the tests they perform with it. The good thing is you should be able to get results back right away from it (atleast the doctor who performed my test let me know right away that same day). I truly am sorry to hear you have to wait longer and you were anticipating your surgery and recovery. Stay strong as I know you have been a big support to me and Gina thus far. I've sort of started to develop a routine now with my output...I typically eat about two solid meals a day with two snacks and liquids....nothing after 5pm seems to help as I have a majority of my output in the evening and while I'm sleeping and my body is relaxed. The stoma seems to be working hard to produce output because I get a lot of cramping on the right side still. This isn't really ideal, but I know that I only have to deal with it for about another month so I just keep those positive thoughts. And at least I can eat some food rather than the quality of life before my initial surgery where I really couldn't eat much at all and was on large doses of laxatives. So I'm sending good vibes your way! Keep your head up and continue to stay positive.

Kymberly


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## Miss Beany

Annie my heart goes out to you. I can o ly imagine how upset and frustrated you are right now and you have every right to be...but at the same time, I know my surgeon and GI doctor wouldn't go forward with discussion of the colectomy until I had the anal manometry. That being said, your surgeon definitely should have done this long b4 scheduling! I am so sorry :-(. I do know mine wasn't perfect ...and I'm having some rather awful issues occurring lately. I've been having accidents and not even knowing it - like no sensation and then I find the mess. It's awful and embarrassing. I contacted my surgeon on Wednesday via email but haven't heard back from him yet. Hopefully this is just a small hiccup.

Annie - have you ever had issues with your pelvic floor before?

Hang in there...You are strong and have been through so much already. You will get through this too!

Kimberly I hope you're doing well!

Hugs to you both!
Gina


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## annie7

oh thanks to both of you so much for your empathy, encouragement and support! i do appreciate it! you are both wonderful. very strong, supportive and caring.

yes, i was dx'd with pfd after having a defogram and anal manometry (ARM) . i went to biofeedback/physical therapy last summer and the therapist was terrific--really a big help. I do feel that biofeedback helped me some and so did my physical therapist--she passed me at the end of the therapy. . I managed to get the sensor down and keep it down even when she retested me six weeks later. and I can "go" when i'm home--just can't do it in front of an audience. when i'm at home, if stool comes down to the rectum i can feel the urge and get it out--it's just getting it there to begin with due to my slow transit that's the problem.

I have read a study about this sort of thing--about how a lot of people--mostly women--are misdiagnosed with pelvic floor dysfunction (tightness) simply because they don 't perform these invasive gastro tests well...

Kymberly--sounds like you've done a great job in getting your stoma working . sorry your stoma has to work so hard and so sorry about all that cramping and pain. yes you're right--you have the right attitude. stay strong and positive and let the countdown begin til your reversal! it's right around the corner and february is, as they say, a short month. it'll all be over soon. and then you'll be on to getting your life back, new plumbing, new life and the light at the end of the tunnel!

Gina--so sorry about the problems you've been having--the accidents. and yes i would think this is just a blip--just a part of your body getting used to it's new plumbing--the adjustment of it all. i've read threads on the inspire board about people having similar problems right after a colectomy. seems like it all straightens out after a while. sometimes in the meantime people add a bit of fiber to bulk things up but yes--you definitely want your surgeon's advice first on all this. i do hope he answers your e-mail today and has a treatment plan for you.

praying for both of you and thanks again so much for all your care and support.


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## ksl2017

Gina I am sorry to hear about the setbacks, but yes lets hope they are just minor and bumps in the road. I have read many stories about this surgery and that is one of the common threads it seems. It does take time for the body to adjust so I hope things resolve for you in the coming month and your body adjusts. Have you been sticking to a particular diet now or still introducing new foods slowly? Just curious. Let us know what your surgeon says. I recall reading about you drinking small cups of coffee and I know that's something I am looking forward to trying after my reversal. I gave up coffee after I got sick last year in March 2013 and started having all the digestive issues. I prefer warm tea now these days and vitamin waters, but I still love the smell of coffee hahaa

Annie I am sorry they are making you wait so long for just that appointment and they certainly should have had it arranged earlier and Im sure you would have scheduled it earlier if you would have known they were going to have to do the anal monometry test still. It would have saved you this terrible amount of time waiting. Once again, I'm sending good vibes your way.

So I guess it seems we all have to make it through February with some goals. One more month of cold weather and hopefully spring will come early rather than later in March!

God Bless,

Kymberly


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## Miss Beany

Annie - hang in there. I always look at it like this - things happen for a reason, and even when we do not know what that reason is, and it seems like it is likely the most stupid reason ever...it will work out in the end. I have so much respect and admiration for all that you have been through and know you will get through this too. Same goes to you Kymberly - you will have your reversal soon enough and begin to be able to live again! No one can stop the three of us - we are strong willed and will never give up.

I have still not heard from my surgeon, which is weird. He is usually very quick to reply via email. If I don't hear anything over the weekend, I will try calling the office. I know I h ave read the same thing with those issues, just surprised i was okay for a bit and now losing the sensation and feeling that i need to go to the bathroom at times. It's just strange.

Kymberly - I am drinking coffee as i type this actually!  Coffee has actually been a great help in moving things along, though i do not add any cream to my coffee, just lots of splenda. Cream tends to give me cramps, but that has always been how it's been for me. I also have been slowly introducing things to my diet, been eating salads again which is so nice! though they do not always go down and out so easily. Other than that, my diet has remained mostly the same. I also did add fruits back in last week, which again are not always the easiest thing to go down and come out, but have gotten a bit better with repetition in eating it. Tonight I am meeting my best friend in Philly to get Thai - we will see how that goes, this will be the first time I have had that since before my surgery. I probably will get what i always get - spicy basil fried rice with chicken, though i think i am going ot ask them to go light on the oil used given my stomach. I notice any oil, butter, cream in foods send me running to the bathroom, cause accidents, or just cause utter explosions and pain for me when i do go to the bathroom. I rarely eat those things, but i guess some foods are prepared like that when i go out and there is really no way around that. You think you know what yhou're eating, but i guess you don't always!

We have been in a deep freeze in PA for the past few weeks...it's finally supposed to warm up a bit this weekend, maybe hit the 40s - today it felt warm being 30! I am so ready for spring!

Ladies, take care of yourselves. Always thinking and hoping for the best for you both!

Hugs,

Gina


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## ksl2017

Gina I hope you had fun out to dinner with your friend. I absolutely love dining out and although my diet is very restricted right now, I still find ways to mix it up when I go out with my family. I haven't really gone out to eat with friends yet, but I'm hoping to do that after my second surgery. Most of my friends are back in school right now or working (which is where i'd be too if I wasn't taking the medical leave of absence). But I'm not sad, because I really think my body did just need this time to heal and it feels good for once to just stop and actually take a break from it all because as I said I jumped right from 4 years of undergrad to pharmacy school. I actually went out to eat at my favorite fish restaurant with my Dad the other night and it felt good to be home and doing a tradition we have done for several years. We always get Friday night fish fry at this restaurant on the lake where we live so it really felt like home. Plus my mom always knows how to cheer up my mood if I get tired or am struggling one day (she brings me to get ice cream haha I'm a sucker for ice cream....we keep at least two tubs of different flavored blue bunny ice cream in the freezer at all times and are stocked on sundae cones! I always joke with her and say its a good way for me to get my calcium  haha But realistically I have gained about 5 lbs since my surgery which is a positive because my surgeons want my weight up before my second surgery). I love thai food as well so I'm looking forward to trying all these great foods again come March. Its funny because I really do keep the same diet basically now. It has been really boring, but I know it works. Gina I hope your surgeon has responded to you and is offering some suggestions. Hang in there and I love your statement "we are strong willed and will never give up." I truly believe this and we will all get through this. One more month ladies, and spring will be coming our way! Just think positive thoughts about the sunshine and wonderful weather. We will all have the opportunity to heal great during this season.

Take care,

Kym


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## ksl2017

Gina

I forgot to ask you a few other questions I was thinking about. Every since your surgery, have you noticed any constipation issues? And do you drink a lot of fluids throughout the day between meals? I notice that with my condition even (the slow transit constipation) that it takes a while for food to even go through me to get to my bag. Just some questions. I haven't really noticed a different between the foods I eat that help or don't really help actually because one day I can eat some cereal and it goes through fine and other days its slow. And sometimes I'll eat a small soft cheeseburger and it will go through me great and other days I get bound up a bit by my right side so I have to drink a lot of fluids to help push things through. I'm just curious to see if things speed up more once I have the reversal surgery? Like do you eat and meal and go to the bathroom about 30-45 minutes later or does it vary? I appreciate the feedback. Thanks1

Kymberly


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## Miss Beany

Hi Kym!

How are you doing? I hope you are doing well and the output is still working well for you!

Sorry for being late - i am still finding exhaustion to be a bit of an issue with my hectic schedule between internship, graduate TA position, and graduate school. I am also looking for another job because the bar i was working for has been completely unsupportive of my surgery and has yet to put me back on the schedule. At any rate, we had a massive ice storm last night and I am off today -so wanted to respond teh first opportunity I had! 

I too love eating out - i used to always get appetizers, entrees, and desserts with my friends...now I am just sticking to focusing on eating my entree. My stomach does not deal well with being full, I've noticed. So while I will mainly clean most of my plate with teh entree, I have learned to stop at that, though i have been absolutely craving dessert foods. I love ice cream, but it gives me a stomach ache (or used to). So I usually stick to frozen yogurt...definitely need to get some of that soon!

Glad to hear you gained some weight before your upcoming surgery - I lost a significant amount after my colectomy, and have really kept it off. My surgeon, cardiologist and neuroophamologist are all concerned about my weight due to the rapidity of the system and things moving right through. I guess food isn't absorbed as well when you do not have a colon, therefore weight stays down? I may just be making that up, but seems to make sense. I definitely have days where I feel bloated and constipated - I hate those days because I feel like there is absolutely nothing I can do to change it. I know you said you feel like things get hard or build up on your right side - mine is always my left side. Sometimes I like push down on that area and things move through. Or, I apologize if this sounds gross, I will like suck air into me to then hope to push an air bubble to move things through. That has worked most days when I feel like there is still something in me, but doesn't come out. I mostly think that is from my pelvic floor not functioning properly though - likely a rectum issue or rectocele still. I guess if that continues I should really follow up with my surgeon, but overall I still feel really good and am still so happy I had the operation. It is nice to have things move through - I notice when i have my boxed soup w/ frozen vegis and pita that things move through super fast and it usually is a good way to clean my system out. I go to the bathroom a ton, but i most always feel 100% better by the end of the next day. I also have switched up my lunches to fruit salads with either honeydew melon/cantelope, strawberries, and bananas with yogurt (yoplait or greek). That also seems to move things through my system pretty rapidly. Salads are still not the easiest thing to digest and empty completely, and still cause me cramping. The thai food from the other night...that was not a fun experience. I got spicy basil fried rice with chicken, told them to go light on the oil. I felt awful and it was painful coming out. Definitely do not want that for a long time. I'm supposed to get indian with my fellow TA's this weekend, which I love, but even that I am concerned about..won't know until I try!

I still haven't heard from my surgeon, which seems really weird and i am not quite sure how to take that. I have not called him to follow up because it has improved a bit in the last week, though i have been doing squats and other exercises that I thought might help. I guess it's been working, though I still come extremely close to having accidents often. So i'm really not sure what to do there. I should also probably tell him about the needing to suck air in to push things out thing, but then again, i don't know if this is all normal part of the healing process and I should sit tight from a while. What are your thoughts?

In terms of transit time after eating - right after my surgery, i was going as soon as i was done eating, usually 30 minutes or so later. Now, i still go after eating, though it may be 45 minutes to an hour, and then it lasts the entire night. It actually drives me a bit batty how many times I go to the bathroom at night, but i guess i should be thankful because it has substantially slowed up during the day. I don't know why the night is different though - definitely odd!

Let me know how you are doing and if you have any more questions. I know you must be getting excited to get that surgery and move on 

Hugs!

Gina


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## ksl2017

Gina

Wow thanks for all the great input! I love reading your story and how thing are coming along for you. I especially like to hear about your exciting events and outcomes when you try new food. I absolutely cannot wait until my reversal in March. It seems like a ways away when I've just been recovering at home mostly like I said. I can't go back to school until next January. Today I wrote a bunch of thank you letters to friends and family who have supported me throughout this whole process from beginning of last year March when I got sick up until now. I wrote a bunch of cards for Valentines Day and am sending some homemade baked cookies in the mail to some of my college friends. I know they will enjoy that! haha I could probably send them ramon noodles and they'd be happy i'm sure too lol I would definitely tell your surgeon about the issues on the left side of your belly. I know that I am going to make sure I mention how things seem to get backed up on my right side, but like I said I think that might be due to the ileostomy surgery and having my appendix out in sixth grade so there is probably a lot of scar tissue built up there. Hopefully they will get things situated with my second surgery and all will be well! I am quite jealous of the fruits salads haha I haven't had fresh fruit since summer and it doesn't go well with my ileostomy right now since most fruits have skins. I can have canned fruit, but its just not the same. Plus cold foods seem to take even longer to transit through me. I really do enjoy cooking as I've mentioned and along with that I love several different types of cuisine. I mean I rarely find foods I don't like. I'm not a picky eater. However I absolutely love seafood so I was wondering if you have tried any of that since surgery or if you even like seafood and how it fanned out? I can really only eat fish right now and so I do that mostly every Friday with my Dad  But prior to getting sick I loved cooking and eating shrimp, scallops, lobster, crab, mussels....any seafood (might have something to do with the fact that I did work at a famous seafood restaurant in Illinois 2 summers ago too and fell in love with the cuisine even more haha). Also its inspiring to hear you are doing squats and more exercise! It makes me very hopeful for the summer. I'll have to start out walking my dog I'm sure, but I can't wait to get back into my running routines and sign up for some marathons in the future again. Its crazy how much you miss something when its been taken away for you for so long. And my friends joke with me sometimes about not needing to exercise even because I'm so skinny, but getting my heart pumping and moving around always makes me feel better. I never ran just to lose weight even, exercising is just an outlet and stress reliever for me. Cooking for my family is my outlet right now I guess haha although like I said its kind of torture not always being able to eat everything I cook for them, but I struggle through it and know that good things are coming my way  I am also in touch with another female who had her colon removed and is my age. She always talks about the transit time being quick and sometimes she worries about going out on a date because she's terrified to use the restroom if she ends up going back home together with her date. So she said she eats a light meal then and makes sure she drinks plenty of fluids to try to use the restroom before she leaves the restaurant. I know you mentioned the accidents and so I was wondering how that was coming along and if you ever get worried going out to restaurants because of it?? Any who, these are just some of my thoughts. Hope you are doing well and I just want to say I enjoy our conversations a lot and am looking forward to putting in some of my own input after the reversal! Take Care 

Kymberly


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## ksl2017

P.S. Annie

Please give us an update on how you are doing  Thinking about you!

Kymberly


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## annie7

Hi Kymberly

how sweet of you to make valentines day cards and bake cookies for your friends! what a nice idea. you sure do sound like a terrific cook!

and yes--every day brings your surgery one day closer--won't be long now! the light at the end of the tunnel.

thanks for asking......i'm the same--struggling each day. waiting for my anorectal manometry test on 3/28.

i finally was able to get my hands on last year's anorectal manometry test results which show problems above and beyond simple pfd--problems which last summer's biofeedback course can not correct (rectal abnormalities) which i have a feeling means no colectomy for me---if i'm to have any further surgery i'm thinking it will have to be an ileostomy.

keeping both you and Gina in my prayers.

Gina--hope your surgeon gets back to you soon if he hasn't already and hope your problems straighten out real soon.

take care, both of you!


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## oceannir

Annie good luck with the surgery. I hope you get the rest of the colectomy if that is what you are after, still no news? I'm guessing the delay has gone for a few months.


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## annie7

thanks, oceannir









right now i have to wait on my test on march 28th--another anorectal manometry. in the meantime i'm planning to talk to another surgeon to get his opinion. yes, i'd prefer to have a full colectomy but like i said, it's beginning to look more like an ileostomy--i just have too many problems....

i hope you've been managing ok....take care.


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## Miss Beany

Hi Kym!

Sorry it has again taken me so long to get back to you. We have been hit hard in the last week with 20 inches of snow where i live...made my classes this week luckily, but we are definitely behind with our classes and are pushing back things into May now! So ready for spring it's not even funny! I try to shovel, but this heavy snow is so hard to lift, especially with it pulling a bit on the incision and the fact tht the snow piles are over my head now!  We are actually supposed to get up to another 6 inches tonight...ayi ayi ayi!

How are you doing? What is your actual surgery date for the reversal? The one thing I would advise you to get ahead of time is panty liners and pads. You may not have the accident-bound issue that I have had given my past rectal prolapse issue and pelvic floor dysfunction, but I would rather see you be prepared then be caught deer in headlights like I was many times ;-).

In terms of foods, I tried cookie dough and frozen yogurt on Wednesday. It was actually my dinner because I didn't get home from school until 9 and eating a meal that late has proven to be diasterous...it went down okay, definitely had a bit of stomach ache after and had some major issues cleaning out the next day, but after I had fruit and greek yogurt for lunch, things seemed to move again. It was so yummy...definitely hope my system can adjust to such devilish temptations!

I haven't tried any seafood - i do like shrimp and crab meat, but those are about the only two I like. I used to love coconut shrimp, but i do not think i will be venturing to have any of that often because anything with oil or butters tears me up. It in general always did, it just is multiplied multifold now. It is good though that you are able to eat all of that and enjoy it so much - that is probably the way I am with chicken and salads and fruits and vegis. As soon as I could start eating that stuff again, i was soooooo happy! Even if my body needed to adjust to it after being on low residue, it was totally worth it. Do you have to start on a low residue diet again once you get the reversal?

I did email my surgeon and he finally got back to me. It seemed like he never got my other email. He said they were worried about this pelvic floor outlet obstruction before the surgery, but were hopeful this wouldn't happen. He said it wasn't good it was happening already, but that if we 'try try try" not to have me strain, then hopefully we will be okay. But that pelvic floor physical therapy would be an awesome idea. He said he was going to send me a script for it this week - have not received it yet, but given the snow, and the fact that my mailbox is not accessible anymore due to humongous snow piles  i will give it some more time. I also have to figure out how i am going to be able to fit that into my hectic schedule, but if it means i do not have to stand cross-legged holding on and being paralyzed as I feel like i am going to have a puddle below me...i'll do what i can.

I was starting to see someone my best friend set me up with...it went okay, but he was falling too hard, too fast, and moving things along way too fast. I definitely felt awkward whenever we went out to dinner, i would have to go to the bathroom sometimes when i got there, and definitely right after I ate. What was the hardest for me was when we watched the Super Bowl at his house and he was trying to cuddle ewith me after we ate - that was the hugest turnoff for me because i wanted my space and he didn't get it. I was screaming in my head because i felt so uncomfortable...i was battling with my stomach digesting the food and the feeling like i could have an accident at any moment. Needless to say, that was not a good experience and I left pretty early that night, for other reasons too. I am still entirely uncomfortable getting close to anyone especially after this surgery, and the mere fact he was pushing so hard, trying so hard, kind of has me not wanting to date again for some time. Definitely feel bad because i know his intentions were good...but given the circumstances, and the fact that it all was too fast, i know this is best for me, and i really do need to remember to look out for my best interest - just like we all do!

I cannot agree more with you about being able to exercise. That made me feel so much better once I was able to get back on my elliptical and walk Josie once I got home from the hospital. I cannot wait untli summer...i would really love to train for a 5k or something related to colon awareness - some cause that is meaningful to me. I have never been much of a runner, but who knows, maybe I can start!

I look forward to your emails and wish i had more time to get on here. You are always in my thoughts and prayers - i am so excited for you to have this reversal operation . I will be here for support, and i am going to provide my personal email below because i get to that much more quickly than this sometimes. Either is fine, but if you have an immediate thing, email is best 

[email protected]

Thinking warm thoughts! Hugs!
Gina


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## Miss Beany

Annie - how are you doing? I saw your above post that they are leaning more toward an ilestomy - why is that? I am curious given that i am not out of the woods for that.

Thinking of you and wishing you well!
Gina


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## annie7

gina--re: ileostomy--that's because of my pelvic floor problems. my last anorectal manometry showed i had pfd--which biofeedback has helped with--as well as significant rectal hyposensitivity and megarectum. i don't think biofeedback is able to help with the last two problems. i have another anorectal manometry scheduled for the end of this month (if they get the insurance approved in time that is) and will see one of my gastros for followup in march. i plan to ask lots of questions--as always--lol..

i do hope the biofeedback/pelvic floor physical therapy helps you. yes please do find the time to do it and practice at home too like they tell you to do. it's really important and it does help.

good luck and wishing you all the best.

keep both of you in my prayers, annie


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## Miss Beany

Hi Annie -

Thank you for the quick response! It is always good to ask a ton of questions with this all, lol. God knows I will be asking a ton if this pelvic floor physical therapy doesn't work. Is biofeedback the same thing as this therapy? Aren't there surgeries to tighten or fix the muscles in the rectum versus removing it all together?

I know you wanted to get this surgery over and done with , and i can only imagine how frustrated you are to have to wait and go through that awful test again. Insurance has always been like going through hoops and ladders for me, so i definitely understand how that can be. I will never forget when insurance canceled my surgery 2 days before...frustrating how dependent we are on it though.

Thanks again for all of your support - I admire you so much for all you have been through, the helping hand you have extended, and the endless support you provide us with! You are amazing!! 

Gina


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## annie7

Gina--yes pelvic floor physical therapy would be the same thing. .

my physical therapist was absolutely terrific! so knowledgeable, caring and understanding. she put me totally at ease. and she tailored the therapy to my specific needs. she covered lots of things--diet, tips like using a footstool (shoebox etc) to elevate my feet while sitting on the toilet which helps straighten out the anorectal angle and allows for a more complete evacuation, relaxation exercises,belly breathing, proper evacuation techniques--no straining--belly breathing and making your waist wide (pouching out your belly) and pushing from there etc.and i also worked with the biofeedback sensor which helps you to relax the proper muscles and gives you feedback on how you are doing---it's fun, actually, using the sensor.

omg that must have been miserable and frustrating when insurance cancelled your surgery like that!

thank you for your kind words








and also for all your support and understanding! so much appreciated. and thank you for all the help and all the information you've given us here from all your experience and your surgery--you've been through so much-- and all your advice--you've really helped a lot!


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## Miss Beany

Wow this all sounds interesting! I literally have no idea what to expect, but he did send me a list of names to contact, all female, and as soon as I get his script in the mail, I want to get started with this. How long did you go to physical therapy for? I definitely will be doing the techniques at home - i do not not not want an ilestomy if i can help it. But, i also know being paralyzed when standing up or walking and having to freeze is not good and not healthy...nor is the constant straining i have to do to evacuate or feel like i have evacuated at all. Craziness!!!

Thank you too for your kind words! I know I have been through a lot, but i guess because i have taken things one day at a time, it doesn't seem like such a big deal (even though i know it really is!). What doesn't kill us only makes us stronger 

Happy valentine's day! <3
Gina


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## annie7

Gina--here is a u-tube video that's very helpful in showing how to have a bowel movement without straining. it was made by a physical therapist and it includes a lot of the things covered by my pelvic floor PT:


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## Miss Beany

Wow! Thank you so much for that! I definitely do things all wrong, so this will give me something to be aware of as I wait to meet for PT. Thank you so so much!!


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## annie7

just read your last post--we must have been posting at the same time--lol...

my insurance limited my visits somewhat. i was lucky they approved it at all i guess--they didn't several years ago when i first checked into it. but i saw her for an hour a week for seven weeks. by then i had gotten the sensor down and kept it down so she "passed" me and finaled me out.

yes you are so right--one day at a time! and yes it does make us stronger! like the saying goes--we don't know how strong we are until strength is all we have...

and thanks! Happy Valentines Day to you as well <3


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## Miss Beany

I will definitely be interested to see how my insurance treats this. God knows they ate well over $150,000 in hospital costs for my 13.5 day stay this time around, not to mention what they had to cover previously for the other stays. Hopefully i will be able to get enough sessions and get myself on track! I am excited to start - at first, i was embarrassed, but i realize that there are doctors out there who specialize in this for a reason, and just as we have been through this all and are helping others by being part of this discussion, that's what they are doing too.

 Keep in touch with how things go for you -- i will definitely keep you posted once i get the script and start. I am also awaiting returning to my neuro-opthamologist for an emergency visit because my visual symptoms have gotten worse, but because of the weather, cancellations are few to none. I also go back to my cardiologist in the beginning of March to address the dizziness that continues. All in good time!


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## annie7

yes, the pelvic floor therapy does sound like it could be a bit embarrassing at first but you're right---these women are all professionals and they really do want to help you and they are terrific at putting you at ease. i was so surprised and thankful that it was all so easy--she was so understanding! and like me, you are very motivated to make this work so that will help a lot too. i asked my therapist tons of questions and learned so much!

just this past week i bought a home biofeedback machine which has been recommended by several women i know who've been to biofeedback/pt at the mayo clinic. i wanted to practice here at home --to "study up" for my anal manometry, maybe you've already seen the topic on the constipation board that Dreamcatcher posted about her recent experience at mayo--it's very detailed and informative:

http://www.ibsgroup.org/forums/topic/169925-bowel-retraining-mayo-clinic/

so sorry for all your ongoing problems with your vision and dizziness! and you are going through all that in addition to everything else. you are a very strong woman! yes you're right--one day at a time. keeping you in my prayers that everything will all work out for you.


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## Miss Beany

I can imagine I will definitely be asking a ton of questions. I just really hope this all works. It is going to be hard to unlearn how I have been doing things I am sure, but here's to hoping it works!

Again, thank you so much for all of the support and kind words  And resources!!!


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## annie7

yes i think it will work--or at least help a lot. it does help a lot of people. and yes you're right--it's does take a while to unlearn all that "muscle memory"---years of straining from the rectum and try to go the wrong way. and other poor bowel habits. my problems go back 50 years when i was ten and withheld going at camp because the latrines were so filthy--i didn't go for two weeks--just held it all in. and this went on for years--every year when i went to camp. sadly a lot of us girls did that. so i have all those years of muscle memory to unlearn. but bio/pt did help with that.

and i really don't want an ileo either. my docs are leaning towards it but they are discouraging about it too. they say if my pelvic floor doesn't work properly then i can't have a colectomy which is disappointing but i do understand why and they're saying an ileo will just be trading one set of problems for another. so because of all this l'm motivated to keep working on the pelvic floor therapy at home. i still do the daily exercises my PT gave me and now i'm using the home machine. fingers crossed i do better on the manometry. i not only couldn't push that balloon out--i couldn't even feel it even when he inflated to the max. i'm thinking that must be due to my rectal hyposensitivity. i'll ask the gastro...

i think you'll do well with it


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## ksl2017

Gina-

I will certainly be getting some panty liners and depends I even read about for the first couple weeks after surgery. Thanks for the advice! I have to call Cleveland Clinic on Monday and they are going to give me the date in March for the reversal. I have X-rays at a hospital in Green Bay March 6 though to make sure everything is healing okay. Its odd how that works with scheduling the actual surgery because I am so used to having set scheduled doctors appointments, but I guess that is just how things work at CC. I will have to stick with the low residue diet again after surgery they said. 4-6 weeks. I've adjusted to that by now so that shouldn't be an issue, just kind of a bummer. I actually have been eating ice cream with cookie dough in it haha. I often get stomach aches from the ice cream too, but I just treat myself since I can't eat a lot still with the illeostomy. I'm trying to keep my weight on for the surgery so I haven't watched anything with regards to calories which has been a plus to all of this haha But I do know what you mean about eating things with oils and fats. Whenever I eat fish I usually have melted butter with it at restaurants and that seems to get my bag filling up at night when I sleep. One thing I am looking forward to is eating fruit! Especially since spring is coming up here. I'm excited to hear about how your PT goes and I wish you luck with that!

I just wanted to comment and say thanks for sharing your story about the date with the guy you were seeing for a bit. I can completely relate to those feelings about embarassment and being afraid of the digestion issues, noises, and accidents! I am only 23 years old and last year I just got out of a 3 year relationship so I was going on a few dates until I got sick with this whole issue last year March 2013. I stopped seeing guys because I was just trying to get my health under control. I had doctor visits and tests every couple weeks and I just didn't want to be around any males because I didn't think they could handle the situation and truth. I mean what young female wants to explain to a guy that she can't poop basically haha and have had to be on several laxatives for months! lol Just not ideal if you know what I mean. Besides the fact that most doctors kept telling me nothing was wrong, it was all in my head, and I didn't even get a diagnosis until September 2013. I didn't think that any guys would really want to see a girl who was in such rough shape so I just distanced myself from them although I got offers to go on dates in school. I just declined all the time and said I had other priorities. Now I actually have a lot of support from friends & family who know my diagnosis and know about the struggles I've gone through this past year. In fact, I have a really good guy friend that I've known for about 4 years now say that he wants to take me on a date after I'm feeling up to it after my second surgery. He said I was a strong, brave young female and it was crazy how much I have gone through at such a young age. That certainly made me feel good and smile  I'm excited to do that, but I just didn't want to be around the opposite sex right now with the illeostomy. Although I know that I may end up with one in the future if things don't work out down the road, I'm just not really comfortable showing it to anyone or being out in public much. Even though I've had it for 2 months now, I still haven't really found a way to disguise it well with my clothes. It always seems to get in the way so most days I'm just wearing sweats if I go grocery shopping with my mom or out for a bit. Thankfully the reversal is coming in March and I'll be able to get back on my feet normally, get outside, and hopefully enjoy spring while I recover! But yes, I am nervous & excited at the same time to see how the new plumbing works and how comfortable I feel going on a date and being out in public with friends again. I do have a question for you now that I think of socializing too. I am young still and I used to go out in college with friends, get drunk, and sing karaoke, things like that. Have you went out and partied with friends at all since your surgery?? I'm curious to hear how that experience went if you have done that at all or not.

Always good hearing your stories!

Annie-

Thanks for the videos and information on the PT. I'm sure this can benefit me too if I start to have issues after the reversal. I will certainly know where to come with my questions.

Its currently Saturday and I plan on searching craigslist for some waitressing jobs around the Green Bay area to apply to because spring is on its way and I am excited to get back to work after the reversal and I get back on my feet. Funny, I never thought I'd be so excited to get back to work, but I am! haha Hope you both had a Happy Valentines Day! I spent mine with my parents being the third wheel on their date haha They were happy to have me of course and my dad was just a lucky guy to have two Valentines dates that night  lol

Hope all is well!

Kymberly


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## ksl2017

Haven't heard back from you two in a while, but I figured I'd let you know the news and official date. My reversal surgery is scheduled for March 7 at Cleveland Clinic with my surgeon Tracy Hull. So practically a week! I can't wait. I have been working and training at my new waitressing job I got so that has been keeping me busy. I work this Friday, Saturday, Sunday, and Tuesday. Then I will be traveling to Ohio Thursday for a gastrografin test that evening and surgery in the morning. Hope you both are staying warm! It is still extremely cold here in Wisconsin and I cannot wait until Spring hits! I will certainly be bringing some extra blankets for my hospital room haha

Hope to hear from you both soon! Take care.

Kymberly


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## annie7

Oh Kymberly--that's so exciting! i'm so happy for you !!!







it's the light at the end of the tunnel!!!!









i'm the same, thanks for asking, had the anorectal manometry monday--and it went just like last year's unfortunately. couldn't poop the balloon out. so no colectomy for me. but i was expecting that.

Gina--how are you ? hope things are going ok for you. have you started biofeedback/physical therapy yet?

keeping both of you in my prayers!!!







take care, both of you, annie


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## ksl2017

Annie

So what is the next step for you then? Are your hoping to get an ileostomy?

Kymberly


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## annie7

well, it's like i said before--my gastro docs etc are a bit discouraging about it all--they say that at this point i'll just be trading one set of problems for another...


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## Miss Beany

Kymberly and Annie!

I completely apologize for taking so long to reply! Things have gotten crazy with schooln and internship with making up missed time due to snow days and with starting a new serving job, in addition to being overtaken with migraines every week for 3 days at a time - needless to say, I neglected you both and I am so sorry! You have been in the back of my mind, but I just did not get the time to sit down and write. But, I told myself I was doing nothing tonight except taking me time, which included some time on here as this is always therapeutic for me!

Kymberly - I was so happy to share my story of dating with you. I think I am going to call it quits for a while in that department, especially as I had a friend (girl) stay with me last weekend, and she decided to stay upstairs and fell asleep in my bed, and I ended up having an accident then of all times...completely mortifying, though i don't think she noticed. I can only imagine if she did, or if that was a guy that i was dating...it just further drove the point home to me that i am in no way ready for any form of dating or romantic relationship, and not sure if i ever will be unless this situation gets itself under raps. I unfortunately have not had the time to start pelvic floor physical therapy, but that is on my To'do list for tomorrow morning to call and schedule that. I now have some time before I work on Friday's in the morning that I would be able to go for that, if they have that time slot available...so hopefully that will pan out. This has got to stop! I would have thought after all of this time things would have gotten slightly better, but it seems like it has stayed about the same. Guess it is just from years of straining and years of rectal prolapse that has stretched my spinchter muscles. I even tried the exercises you sent me annie, but i definitely have a lot of un-learning to do and definitely think i do things completely wrong. It is just utterly amazing. No clue how that happens!

Kym I am so happy to hear about your reversal being scheduled for next week!!! That is so exciting! How long do they expect you to be in the hospital for? Are you all stocked up on supplies and have your bag prepared? You must be so ready and excited! I am excited for you!  And congrats on the job! It must feel amazing to be back moving around and feeling productive again! I know it does for me - even though I find myself completely exhausted, more so than usual. It may be from starting a new med to help with the migraines though. How are you feeling though?! Happy for you!!!

Annie - I am sorry to hear about the anal manometry. There has to be some solution though? If you are miserable, I can't see them just leaving you with no other solution?

As far as me, I finally got in for an emergency appointment with my neuro oph doctor since I had another 3-day migraine episode and ended up losing part of my vision again. That was last week. We had a long discussion and she agreed it was time to get me started on some other preventive to attempt to stop these migraines, versus taking meds to stop them once they already start (since none of them work...the last time, I literally took my cambia, fuerocet, compazine, zofran, 8 advil, had coffee, aspirin, and got desperate and took 2 dialudid). Needless to say, she wasn't happy I did all that, but even with all of those things, nothing worked and the migraine still persisted for 3 days straight. So, she started me back on Topamax hesitantly, knowing this puts me back at risk for stroke. I started at 25mg last week, up it to 50mg for the next week, and go all the way up to 100mg. The main side effects with this that i will have and she is most concerned with is weight loss and that i could lose permanent blocks of my vision and have a stroke. If my visual symptoms are worse than usual, i'm supposed to take an aspirin - if it doesn't go away in an hour, i have to rush to the ER to be sure i am not having a stroke. One of the side effects i am concerned of, and i have had before, is this medication causes brain fog and brain farts, which i am already noticing...and nausea - i have been feeling quite nauseous again, especially after i eat and when i wake up in the morning. I also have been very weak and dizzier than usual. It's going to take some time for my body to get adjusted to this medication. She did tell me she wanted me to go back to my GI doctor and really didn't understand why I hadn't had a follow up appointment with him after my surgery in the first place - so I see him the same week I see my cardiologist, which is the 2nd week in March, March 14, i think. At that point, she wants me to talk to him about nutrition, the dizziness i have been feeling, and several of the other issues i have had i suppose in terms of control in general since i have no follow up with my surgeon. Hopefully by that point too i will at least have pelvic floor physical therapy scheduled. The other medication she put me on is zomig, a triptane, which also puts me at risk for stroke. The plus with this is it is supposed to kill the headache immediately upon taking it - i have not tried it yet because i am afraid to take it when i have responsibilities to tend to...unreal how these things can cause me to have a stroke. All in all though, i still am in good spirits. Life is still 100% better than it was before surgery, I'm happy, feeling pretty good minus these bumps in the road, and hopeful for the future!

I've written a book, but i always do so it should be no surprise 

Looking forward to hearing back from you both! I promise to do better with writing back quicker! I will be home more this weekend. i do work tomorrow night with training, off Saturday, more training sunday, but will be checking this 

hugs!

Gina


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## annie7

Gina--oh so very sorry about that horrific migraine---what a scary experience--especially losing part of your vision ! i do hope the vision loss isn't permanent! and i'm so sorry the meds you have to take put you at risk for stroke and other side effects. also understandably a big source of concern. it's good you have an excellent neuro taking care of you. i will keep you in my prayers that these meds will help you with the migraines and not give you any harmful side effects either. what a shame they can't come up with a med that helps and is not so risky.

that's good you will be seeing your gastro doc soon and also starting up the pelvic floor physical therapy soon. hopefully both will help.

good for you for staying in good spirits despite it all---you are a very strong, invincible woman! please do take good care of yourself. prayers and hugs, annie


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## Miss Beany

Annie thank you so much! These migraines and visual symptoms have been awful for the past year. I never had any of this prior to my first surgery. I don't know why all of this began, but just really wish it would stop all together. I see spots, auras, and lines and squiggles every single day. My vision is also darkened most of the time, and I feel like I am looking into a flame most of the time. It is so weird. Awful when I am driving (I often wonder if it is really safe, but given my schedule, I know I realistically have no choice!). The topamax is driving me bananas - I don't know if eating salads consistently for 4 nights in a row threw off my system, or if the meds did it, but I felt so backed up the past few days and like things have been moving slow as anything. I also have been going to the bathroom too many times a day, almost like there is constant incomplete emptying. Needless to say, driving me nuts. I still haven't called abotu the pelvic floor, need to do that!

How are you doing? I hope you are doing well with everything. Spring is almost here!

Kym - thinking of you!


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## annie7

Gina--oh dear --so sorry about all your vision problems! they really sound troublesome to say the least. are they all because of the migraines? worried about you....







and sorry about the topamax side effects too. i really do hope your neuro doc can get this all sorted so that you feel better and have no more awful vision problems!!! what a lot to go through especially on top of recovering from the colectomy and all the glitches along the way. to say nothing of your busy busy schedule. really, you are a superwoman!









sorry about your being backed up too--ugh. i know salads--raw veg--can be difficult to digest and pass especially in the first several months after colectomy surgery. and topamax can have a constipation side effect ---- sure do wish there was a med to treat your migraines that wouldn't have so many bothersome side effects!

yes spring is almost here or so they say--lol---4 inches of snow last night and more on the way. at least it helps provide a bit of traction on our icy gravel roads out here.

and Kymberly--thinking of you as well. the Big Day is almost here! wishing you a safe trip to cleveland on thursday and wishing you a very successful surgery friday and a quick and uncomplicated recovery--the light at the end of the tunnel!









please, both of you--take good care of yourselves. keeping you both in my prayers and wishing you both the very best--always. annie


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## Miss Beany

Annie - Thank you for your kind words and thoughts! Trying to stay positive, but I upped the dose of Topamax last night and feel even more like brain dead Barbie today. I went to the bank to deposit a check today, filled out the deposit slip, at least I thought I did. Went through the drive through, put the slip in with the checks. The teller asked if I was depositing today, I said yes... here I realized I only filled out the date... way to go Gina... Don't know how much more of this I can take, it's bad enough not having any control of my butt, now my mind? At least I made my pelvic floor PT appointment for Tuesday next week. Seriously considering calling my neuro next week and discussing my options with this drug. It's been nice having no headaches, but this is just awful! The upping of dosage has also brought on nauseous feelings again and making everything taste funny...so dunno if this is a good mix. I do see the GI doctor next week... will keep you posted!

Kymberly - my thoughts and prayers are with you and will be with you throughout tonight and tomorrow as you go through your reversal!  Hang in there, be tough and know that better days are ahead! <3<3

Warmly,

Gina


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## annie7

Gina--omg--so sorry about the upped dose of topamax! you're right--you sure don't need all this on top of everything else. yes, do call your neuro next week--that sounds like a good idea--see if there are other options for you--there's got to be something that doesn't have such bizarre and scary side effects.

that's great you're going to pelvic floor PT next tuesday! i'm sure it'll be really helpful. these pelvic floor therapists are terrific---so understanding,caring and they know so much! i asked tons of questions. wishing you all the best and good luck with the PT and in getting help for those wretched migraines.

Kymberly--been thinking of you and keeping you in my prayers that your surgery will be a big success and that you'll have a complete and uncomplicated recovery!

sending lots of hugs and positive healing thoughts and prayers to both of you!


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## ksl2017

Gina & Annie-

I woke up from my reversal today at 9am and I was treated extremely well with meds for the pain. It is certainly much better waking up from this surgery compared to the first one! I feel like a whole new person without the ostomy bag and I am just loving the feeling of no extra baggage so to speak! I was started on fluids today even and I've had a few watery stools (most likely from the surgery), nothing major yet. My bowels aren't really woken up yet, but I believe they will start me on a soft GI diet either tomorrow or the next day to see how things go and if I start having bowel movements. I am quite nervous as it felt a bit odd to be using that end again, but I know this too shall take time to learn and handle. I am amazed at how well I felt with the meds. I was walking laps around the hospital today and wasn't in any pain that I had to complain about even. I do have a pain pump, but I'm trying to steer clear of that so it doesn't paralyze my bowels anymore than necessary since I am really trying to wake them up! haha I am at Cleveland Clinic currently and they said if all goes well that I will be able to leave in about 2-3 days even. So that must mean I'll be attempting the soft diet soon I am guessing so they can make sure there aren't any complications or blockages that occur. There is an Au Bon Paun restaurant, a McDonalds, and Moes Southwest Grill here in the hospital which is torture because I'd rather eat that food any day haha....I think the first thing I might try from the hospital menu is some grilled cheese and tomato soup or some egg salad. I have a lot of free time here while I'm recovering or not walking around. My nurses from the first surgery even came to visit today and I was thrilled they remembered me! They said I was looking good and that made me feel great. I can only hope things go well with the first meals and I am praying there are no issues. Gina I recall you mentioning going to a Applebees with your mom and getting a wrap once you were able to start eating. That just sounds great to me even now. I know that I have to stick with the soft diet still for a while, but like you both said, this is the light at the end of the tunnel! Right now I have juices and gatorade as my diet with some sorbet and jello. Not gourmet, but atleast I was able to have fluids today. My surgeon is meeting with me tomorrow to check on me and let me know what to expect from this. My dad was the only one to be able to bring me to the hospitgal this time so I just got done skyping with my mom who also said I looked like I had more color in me. I will give you updates as I proceed throughout my days here.

Gina, I am so sorry to hear about your struggles! You have been through so much and this is just terrible to hear about these migraines. I absolutely hate even getting headaches, so I cannot imagine migraines lasting days! I am taking your advice about the wipes and diapers for the first couple weeks after my bowels wake up. I don't want to have accidents although I am anticipating them as I've read this is not uncommon after this type of surgery. I desperately hope they figure out something to help with your neuro problems because you really deserve to start feeling better after going through all of this. I for one am ready to start feeling better and eating that variety of food you have been testing out. Salads sound so amazing right now, but I know I will have to hold off on that for a while. One day! I am actually watching Diners, Dive-Ins, and Drives on the Food Network right now (my favorite show on this channel!) for the first time in a while. Watching it before was really just torture because I couldn't eat much variety with the ostomy. P.S. Do you recall what you ate the first meals after your surgery in the hospital? I'd really like to know that as I feel it will give me ideas and suggestions for my own diet. Thanks!

Annie-thanks for the prayers & generous thoughts for me during this surgery! This is the next step in the journey and hopefully the last one. I really really want to get back to my old life and start being more social and going out to restaurants again with family and friends.

Continue to keep me posted and I will do the same for you!

Hugs,

Kymberly


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## annie7

Kymberly--so wonderfully good to hear from you!!!! and so happy you are doing so well---that's wonderful news!! good for you! and that's great you started on fluids today. you're really making good progress. sounds like you'll be going home soon--terrific!









keeping you in my prayers--many hugs and well wishes----annie


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## ksl2017

So it was day one post op the reversal and it sure was a long day. I have some awful news about my first night here in the hospital. One of the nurses set my Potassium IV infusion rate too high last night and I woke up at about 2am with terrible pain in my left arm where my IV was and when I turned on my light, my arm was swollen up like a balloon! It hurt a lot and so they obviously had to switch my IV to the right arm. To make matters worse, the nurses had to stick me about 6 times and bring in 3 different nurses just to find my vein for the IV. It was just an awful night and so I slept until about noon Saturday because I was so exhausted. I walked around about 4 different times today and I got really tired. I am actually having a lot of bleeding from my ileostomy incision site, but my surgeon said this was normal and she wasn't worried about it just yet. The nurses had to change my bed sheets about 3 times from Friday night and this morning when I woke up. I am padded up with gauze, bandages, and tape as we speak while I'm laying in my bed here at the hospital. My surgeon said they can't change the dressing until at least 48 hours. The waiting game is awful as you both know I'm sure from your surgeries and I'm quite bored so I've been emailing friends, skyping my family, and watching TV mostly when I'm not trying to walk just to get my mind off the pain. I have to say I thought this surgery would be a bit easier since it was just the reversal, but its still pretty intense and painful as my incision is trying to heal and I will soon be introducing some soft foods in a few days. I have to say I am quite nervous for this because I just hate the bloated belly feeling I get when my bowels are slow. I hope tomorrow is a better day and the bleeding starts to slow down. I've been trying to ask some others who have had ileostomy reversals what their experiences were so I hope to get some feedback on that. I don't foresee my stay being too short here like some people said due to this bleeding. Its hard being 11 hours away from my family as well so its nice to have these blogs and friends to talk to about the experience. Made it through day one and tomorrow is another day! Praying for these days to pass and the pain to finally be just a memory I can look back on and realize how strong I was to make it through.

Gina I did have a question for you too....I know you said you didn't have an ileostomy, but what was the first soft foods you began eating when you were at the hospital for your surgery? And did you have to take any stool softners to manage any constipation such as docusate sodium or miralax? A different girl who works at Cleveland Clinic said she took some stool softners when she had her reversal too....but she's had 15 abdominal surgeries in her life so I tend to listen to her advice because she has gone through it so many times.

Keep me in your prayers! Hugs 

Kymberly


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## annie7

Kymberly--so sorry to hear you're having complications--all the bleeding and the pain. hopefully today will be a better day for you. and hopefully all the bleeding will stop very soon, it sounds like you have an excellent surgeon and are in good hands plus you're at one of the best hospitals in the country.

i will continue to keep you in my prayers. you are a very strong woman and will get through this, just like you've done with everything else. focus on the light at the end of the tunnel--you will get there and once you do it will all be so much worth it---a whole new life free from all the pain and misery of chronic constipation!









praying the bleeding and pain will all be over very soon, that you will recover quickly after this and that you'll soon be on your way to your new life.

hugs and prayers, annie


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## ksl2017

Annie-

Thanks so much for you prayers. I have some more bad news to report and I can only hope that it gets better after this. My bleeding by my incision wasn't stopping and my blood wasn't clotting so my surgeon's resident had to come in and cauterize my wound while I was wide awake in my room without having the area numbed or without any anesthesia (they usually do this in surgery while your sleeping, but I was oozing so much blood that they had to cauterize it right then and there in my room). This has got to be one of the most terrible & painful experiences I have ever felt. I squeezed the crap out of my nurses arm while the resident was using the sodium nitrate pen to cauterize. My dad had just gone to lunch so he didn't know it needed to happen and so he was gone before I could get him to be there for me when they performed it. I really wanted to cry, but ironically I didn't even shed a tear. I think I was just in so much shock that I really couldn't even cry. My nurse said my face was pretty pale afterwards and that I needed to stick in my bed for a while now. They are coming to check on the bleeding again in a few hours. I'm praying that the cauterizing slowed it down or something because I honestly can't stand to have that done again while I'm awake or atleast without pain meds or being numbed. Day 2 only so this is quite the process. I can't imagine things can get worse so I really hope things start to turn around now for me here. I was just put to full liquids so some soup and pudding perhaps tonight, we shall see how I feel after they check my wounds again. I just don't feel like eating or drinking much even with this pain and that complication with the bleeding. Hanging in there the best I can right now! I know it will all be in the past in a few weeks.

Kymberly


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## annie7

omg Kymberly--so terribly sorry you had to go through all this! how incredibly painful! you really are very brave and very strong. and i hope and pray you don't have to go through this again and that this procedure will work and the bleeding will stop and that things will get much better for you after this.. so very very sorry!! praying very hard for you!!!

sending many prayers, hugs and healing thoughts your way, annie


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## Miss Beany

Kym--

Omg I am so sorry to hear about the complications you're having! Have things improve at all since the last time you wrote? I saw your messages when I was serving this weekend and had wanted to respond but given it was my first week on my eon and I was totally exhausted after my shifts, I didn't have the time to so. I'm actually writing to you now though from the hospital ... Will explain in a bit,

The first foods I had after my surgery were liquid based, so water ices. Then I tried yogurt, which didn't agree, thenn soup . But I also couldn't keep down any foods until after they started me on TPN. After that, my bowels woke up and I could eat again without getting sick . Do you feel nauseous at all? Once I was not feeling nauseous I ate bagels and cream cheese for breakfast, toast with peanut butter, or toast with Nutella . For lunch I would usually have a turkey sandwich on white bread with mayo, dinner chicken salad wrap. Super boring in the brginnjgn!

I think you are hittingr some bumps in the road before you will start feeling really good and will feel so happy you had this surgery done . Hang in there with your chin up . You have lots of people out here pulling for you!

In terms of me - I had massive and ongoing bleeding when I tried to go to the bathroom yesterday while I was working. It was a bowl of blood and it hurt and smelled of bloody iron. I worked through it since I just started this new...luckily management was supportive , I had called my mom mid shift, asked her to call my surgeons off and tell them what's going on. By the time I was ready to leave they called me backs and advised me to to the ER. So I went...was admitted . Had to have an endoscopy done this morning, which showed an esophageal infection and numerous stomach ulcers. I'll be in meds indefinitely. Also need to talk to my GI doctor Friday about the in continence and how often I go to the night too.

Please let me know how you are. I need to go, doctor is coming in.

Hugs and love,
Gina


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## annie7

Gina --omg-- so very sorry! how very scary that must have been!

I do hope the docs will help you and that you will feel better soon! and good luck with your appointment with your GI doc friday.

Keeping both of you in my prayers and sending positive healing thoughts.

Annie


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## ksl2017

Girls,

The bleeding has subsided more today and its more managable with bandages, but like I said, they just popped my intestine back in and sewed up the portion that was open from my small intestine from the ileostomy. Now I do have essentially a hole in my stomach right now where the illeostomy was, but my surgeon said this will close shut in about 3 weeks and will heal. It looks kinda of scary just having that open, but I have to keep it packed with gauze for right now and bandages until it has a chance to heal and close shut. As long as the bleeding is under control they are going to discharge me tomorrow and let me go home to heal. I still have to be on a full liquids diet when I go home even for a few days still and then call my nurse to let her know how my bowels are doing. Then they will let me try some soft foods again as long as I am having bowel function. Last time I know it took a while for my intestines to wake up even so I'm not anticipating this time will be much different either. They just seem to take a while to get going and I'm not going to force myself to try to intake solids yet really until they are more woken up. I have to stay patient I know with this. My surgeon did say it was okay to use Miralax or a stool softener 1-2x a day as needed. And I'm also trying not to use my pain meds any more than necessary because this just slows down the bowels more. Walk walk walk they say. And I have been up and about walking around here as much as possible and I really do feel fine, other than the cramping and bleeding from the right side where the wound is. Obviously when food and stool passes that point it is painful at the moment, but just something that will get better once the wound heals. So most likely I will be on my way home to Wisconsin tomorrow morning to recover more at home. Hoping the weather continues to get warm so I can move around still outside and get things healing.

Gina- I am so sorry to hear about this news! You are such a fighter and it seems you just keep getting knocked down, but don't give up hope. I feel like these complications are only temporary for the beginning of our journey so keep your head up! Please let me know how everything goes in the hospital with you. You are in my thoughts and prayers.

Kymberly


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## annie7

Kymberly--that's a relief that the bleeding has subsided. still can't believe they put you through the cauterization without anesthetic!

i hope that soon the pain will subside as well. hope you get to go home today. then you can get more rest and relax and recover.

please do take good care of yourself.

keeping both of you in my prayers, annnie


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## hickchick

Hey miss beany, I have loved reading your story. Im 19 years old and scheduled for a total colectomy next Thursday for colonic inertia. I have had constipation problems for years. Seen may doctors, specialist an had many tests done. All pointed towards my colon just not working. I have thought about this surgery for two years now. Didn't think I should get it unless I knew for sure it was my colon that was the issue. Finally after years of taking handfuls of laxatives, having horrible abdominal pains, being bloated after a small meal an barely getting hungry cause I'm always full. I decided to have the surgery. My life has to revolve around my colon problems cause it makes me sick an I have to set days out of my week where I can lay at home an cramp an run to the bathroom because of laxatives. My surgeon said I could either keep taking laxatives till I have to have the surgery or go ahead with it but that the long term effects of laxatives could cause even more worse issues. I'm very nervous about this especially being young and never having a surgery like this before. If you have any advice I'd love to hear it! Thank you


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## Miss Beany

Kymberly - I hope you are home safe and sound and starting to feel a bit better by this point! My thoughts have been with you. How are you doing? I hope the pain from that awful experience has subsided and that you are tolerating possibly some soft foods by this point maybe? If not, all in good time!

I apologize if my last message did not make much sense - I was still coming off of general anesthesia and was getting a concoction to combat another 4 day migraine. I am still not feeling too well - my stomach has been killing me, zero appetite, and the accidents have been on the rise and are getting uncontrollable. I don't understand why this is all happening and getting worse, unless if my working has somehow irritated or caused the accidents to increase...who knows. I definitely will be discussing this along with my biopsy results with my GI doctor on Friday, in addition to when I go back to see my surgeon in April for another flex sigmoidscopy. We talked for some time on Monday about options for my incontinence if pelvic floor physical therapy doesn't work - the issue is, my spinchter muscle is shot...so i think that realistically needs to be fixed surgically, and then use the pelvic floor physical therapy paired with possibly this device he talked about, interstim, to regulate the pelvic floor muscles. Needless to say, this is seriously disrupting my life and making it extremely difficult to function. I am starting to feel pretty hopeless - i don't know if this entire incident this past weekend just took its toll on me and has me brought down because yet another thing is added to the list, but regardless, it is making it really hard for me to see any positives with this all, apart from the fact that yes on top of this all, I am still grateful I did have this operation. I just need things to work! at least a little bit!

Hope to hear from you soon and sending warm positive thoughts your way!

<3Gina


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## Miss Beany

Hi Hickchick!

You sound exactly like I did before I had this surgery, so I definitely feel it is in your best interest. I completely understand what you have been through, how your life revolves around your colon, and how it is frustrating as anything to not be able to go, especially when you are taking medications where any normal person would have no issue going. Have you had any tests done like anal manometry or to test the pelvic floor muscles? Or have you ever had an issues with rectal prolapse? The only reason I ask is if you did, or if your surgeons are concerned that pelvic floor issues or inconintence may be an issue, just be sure to get yourself a stock pile of some pads for post-surgery for a time and be comfortable wearing them. I know I still wear them faithfully, but am also struggling with incontinence due to 10 years+ of rectal prolapse before having this surgery, which completely shot my spinchter muscle. I am starting pelvic floor physical therapy soon, which should hopefully help this, but all the same, pads are definitely my best friend with helping keep me protected and embarrassment free.

After surgery, you will be on a low residue diet - so foods I ate were white breads, white wraps, white rice, chicken noodle soup, crackers, if you like vegetables they have to be boiled very very very well so they are more like mush "(I would avoid these for a few weeks until your system is working and your doctor okays it), white-flour cereals like corn flakes or rice crispies, yogurts, chicken, turkey lunch meat, chicken steak, chicken salad, peanut butter and nutella. It's a very bland diet, so be prepared. Also make sure to get some juices and drinks that you really like because you really need to keep yourself as hydrated as possible - after this surgery, everything that comes out of you will be liquid, and it wipes you dry. So you just need to keep refueling with more liquids to compensate.

At night, at least for a bit, in addition to wearing pads for protection, I would suggest also sleeping with a doggie training pad, or some form of a towel under you, just in case you leak. Again, you may not have this issue like me given my history, but just a friendly tip .

If you are not in pain after your surgery, or if you are starting to feel like you really do not need the heavy duty pain meds - do not use them as they will only delay your bowels starting to wake up. For me, my bowels were already slow to wake up, so when I stopped taking the heavy duty meds at day 10 in the hospital, I think it helped them wake up by day 12. (My hospital stay was longer than most given my complications).

Let me know if you have any more questions. Hang in there - I am sending positive thoughts and vibes your way! You are not alone by any means! There are a lot of great people on this website who have been through this process and are of such great support and reference! You have found an amazing place! 

Warm wishes!

Gina


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## ksl2017

Hello all,

I am finally home from discharge and this has been quite rough. Im being stubborn really and just sort of sucking up the pain & not resorting to pain meds because I really want my bowels to function and it will only delay the process if I keep taking meds to paralyze them. Last surgery it really took a good month I would say before my bowels started working with the ileostomy even. I am starting to regret getting the ileostomy in the first place seeing as how I feel that might have just been an unnecessary surgery and ironically I can't seem to find many people who have had a temporary ilesotomy FIRST before the ileorectal anastamosis. The good things is my anastamosis had no leaks and they were able to reverse me without complications (except the bleeding and that extra cauterizing...ouch!) I am very tired lately and its just hard to want to get up and walk around in the cold again back home. I am trying my best to do what they say and get things going again. I admit it would be a lot easier to want to go for walks if it were spring already and warm outside. My parents house is very tiny and there's not much room to walk around so I make due with what I can. My parents are also very concerned that I don't necessarily always recover textbook style like the surgeons and hospitals want me to following bowel surgeries. They just really want me to get my life back and continue my pharmacy program and live the upbeat, energetic lifestyle I was living before all of this happened to me. Obviously I so desperately want that to happen too. I am hoping that by the time my ostomy wound closes in about a month that things are taking a turn for the better. I'd hate to have gone through these two surgeries only to find out that I have more complications with my small bowel now. I don't seem to have any issues with my sphincter muscles or stomach really because I never throw up nor have any accidents before I make it to the bathroom it is all just the issue of getting things to move through me from top to bottom. They always get stuck on my right side and that's where the pain starts to occur. Hoping this is just temporary otherwise my parents are determined to have me see a new GI specialist as they said they will never give up on my health until I get back to my normal life.

Gina-I can completely relate to your feelings lately. I'm really sorry again to hear about your setbacks. We have both gone through some difficult surgeries and were hoping to get our lives back, but that doesn't seem to be the case right now. It hard for people to understand the complications of this all because really what more is there to health than being able to eat, drink, and properly go to the bathroom?! Its very tiring trying to get things to work and sometimes I often wonder how I'm actually still living and my body hasn't shut down essentially from lack of nutrition. But I think God has a plan for all this suffering and pain we've been through so I fight each and every day because I have to continue to believe that things will get better from here. My parents joke and say even if I end up so sick that I need an intestinal transplant one day, they will never stop fighting for me and taking me to hospitals until the doctors and medical staff figure it out. That makes me smile every time I hear it.

Annie-your test is coming up pretty soon here I think right? I'm thinking about you and praying for you as well. I hope all goes well and please never give up fighting for what you want medically. We know our bodies best and theres always a way. I mean I had to suffer a full year before I even saw a doctor that diagnosed me with the non-working colon. So atleast they know I have digestive issues now. I can only pray that this hasn't somehow taken over my small bowel too. I guess only time will tell with that. But being only 23 years old I'm just so anxious and ready to get my life back. I forgot to ask, but have you ever been on TPN? Gina I think you mentioned this? I somehow feel like my body could use a dose of that so my bowel could heal before i'm being forced to move things through it again with all this damage that's been done to it. Please let me know your thoughts on that. Thanks!

Praying for you all each and every day as I face my own struggles

xoxoxo

Kymberly


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## F8hopelove

I don't mean to butt in on your stories but I have been following your progress and wanted to let you know I'm praying for your recoveries. God bless.


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## Miss Beany

Kym - Great talking to you tonight! Even talking over messages during that brief time brought my spirits up a bit...so thank you!  I hope you had a great time at the basketball game! Please keep me posted with everything, you know I am pulling for you!

Annie - How are you doing?

F8hopelove - Thank you so much! Please do not feel like you a butting in on anything at all! This is all out there to share and help people who may be struggling with similar issues on their own, or know someone who is struggling. Together, we can do anything!


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## annie7

Kymbery--it's good you're home now but so sorry your bowels are so slow to wake up . how frustrating that is! yes you are a fighter and you will come out on top of all this. but so sorry it is all such a long struggle for you. you have been through so much. yes i do hope your small bowel is moving ok--they did test it prior to surgery, right?

yes i was on TPN in the hospital because my bowels took 13 days to wake up and i had developed edema and all sorts of complications from being on IV's for so long (veins became compromised etc) since i couldn't even keep fluids down. long story. TPN was a life saver for me. it finally got my bowels moving. i do hope and pray miralax or something--TPN if necessary (it requires a picc line) will help you get your bowels going again. and of course lots of walking helps as i'm sure you already know.







i did tons of it.

i posted the end of feb about my test (anorectal manometry) --it had been moved up to 2/26. i had it and it went just like last year's test unfortunately. couldn't poop the balloon out. but i expected that. so no colectomy for me. the only surgical option left now is an ileostomy and my gastro doc, surgeons, neuro etc all say that at this point i'll just be trading one set of problems for another--especially since i have mitochondrial disease. that always complicates everything. so i'm just taking it one day at a time like i've always done--lol..

Gina--i am continuing to keep you in my prayers. you are a fighter also! i do hope and pray your docs will have some answers for you very soon. you have been through so very much.

keeping you all in my prayers--and hickchick as well with your upcoming surgery--send tons of positive healing thoughts everyone's way.


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## ksl2017

F8HopeLove-as Gina said, you are certainly not butting in. we post on these blogs to hopefully be able to help other people if they are experiencing similar difficulties or even just as an outlet for your thoughts and feelings as many of us have our own complications. Not necessarily the same issues, but overall just the same struggles of eating, using the restroom, and trying to get back to our healthy & happy lifestyles we had prior to these GI issues. Feel free to write about your own issues, concerns, or questions at any time!

Gina- it was lovely talking to you as well & I couldn't agree more that sometimes a nice chat can really life up your spirits! Our high school girls basketball team won and they are actually moving on to sectional semi-finals! So the game was exciting and fun to watch not to mention the fact that it brought back old memories for me because I used to play basketball in high school and wore those orange and black colors with pride (those are our high school colors haha). Seems so crazy watching the game and how life was so simple back in high school where I didn't really have a worry or care. I ate whatever I wanted because I burned calories like crazy at basketball practice each night and at games. But no use dwelling on the past! I can only focus on the present now.

I have a phone consult with my nurse on Monday and my mom and I are going to ask about the TPN. Annie how long were you on TPN? Did you have to stay at the hospital the whole time you were on it or is there some way of being on TPN at home while recovering? I am so unaware of how it works really I should probably do some more research even. But I guess at this point I just feel like my bowels are a mute. I put things in and I don't really hear any digestive sounds or anything moving around really. This is when I take Miralax right before bedtime and while I'm sleeping I think it works because I will wake up in the middle of the night to go use the restroom from gurgling sounds. They just did a sitz marker study back in September of 2013 which diagnosed my non-functioning colon. I haven't really looked into small bowel motility tests as they said nothing seemed to be wrong with it since the markers had all passed to my colon. Also I do not have an issue of throwing up as I mentioned or chest pain when I eat so I don't think there's anything wrong with my stomach either. I do experience a lot of burping about 30 minutes after I eat though. The human body is very unique I have learned throughout this experience.

Do either of you drink carbonated beverages to help create some gas that might move things along? Just curious about that too.

I have enjoyed our blogging and conversations. Please know that I appreciate all of your inputs and pieces of advice. I realize that this isn't going to be an easy fix right now. But I'm hoping that after my ostomy wound closes I can focus on just getting the bowels to function more and hopefully the sight where the incision was will heal up and things get going. Today is another day and the journey continues.

Kymberly


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## annie7

Kymberly--i was just on TPN while in the hospital. it woke my bowels up briefly--for a few days--and then i was able to drink liquids and one day of soft foods. but i had to go back on laxatives (dulcolax and milk of mag) because i stopped going again. but that's because they only had taken out half my colon. my surgery was not like yours and Gina's--it was not done to improve my constipation or my transit. . it was emergency surgery done to remove the twisted part of colon (cecal volvulous). which is why it was just a right hemicolectomy and not a full colectomy.

anyway--they weaned me off of TPN and pulled my picc line out before i left the hospital and told me to keep on taking laxatives. it is my understanding from reading the posts of people on the AGMD Inspire board that some people do stay on TPN while at home. in fact some people with severe GP can't eat at all and get all of their nourishment from TPN.

i really am surprised they didn't do a complete testing of your small bowel prior to surgery. or any more tests like a defogram or anorectal manometry...that's why the surgeon cancelled my surgery in january. my gastro clued him in that more tests were required first. even i knew that--guess i should have told him---lol.. had i passed my manometry they would have gone on to test my small bowel. people on AGMD who've had colectomies have posted about all the testing required prior to the surgery.

good luck with your consult with the nurse. keeping you in my prayers and wishing you all the best. annie

oh ps--carbonated drinks--omg no! i haven't drunk any of those since i was a teenager. they have always given me horrid gas--and never moved any stool along either. just horrid gas--misery---lol...


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## ksl2017

Annie-

I have had a defoctogram and an anal manometry test which all came back normal so that's why they said the surgery would be a success with my sphincter muscles. I am able to release output once it gets there, but I always have the issue of moving it down there to begin with....no issues with the stomach. I am just curious as to how they even diagnose something wrong with the small bowel. But I'm going to be asking these questions to my nurse. I think I mentioned reading and researching about chronic pseudo obstructions but truthfully I never have had an extreme pain where I felt an obstruction. I just keep getting constipated and can't get things to move through me. And I'm not sure yet if that's due to surgery and my bowels being paralyzed for a while or what. Because i have heard stories about bowels taking up to 21 days to start working even after reading some AGMD inspire motility stories. Many of those people were on TPN. Still trying to figure it out like I said though. I will know if I need to go to the ER obviously if things don't come out for 2-3 days.

Kymberly


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## annie7

there are tests they do to detect problems with the small bowel. i'm not really up on the specific names of the tests because i didn't get that far lol but people have mentioned that small bowel transit tests were required prior to a colectomy.

NG1031 on inspire listed out her tests here in her journal. she had her tests and surgery done at mayo. she said her gastro doc over there was truly one of the best-- dr michael camilleri :

http://www.inspire.com/ng1031/journal/procedures-medications/

good luck--praying for you and sending positive healing thoughts your way . yes--maybe it's just a case of your bowels being slow to wake up. i know mine sure were lol... hope things start working ok. take care....annie


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## ksl2017

Annie-

thanks....my parents and I were researching about a small bowel manometry test though which seems to be the best test out there for measuring contractions of the small intestine whereas a small bowel follow through doesn't measure the contractions of your muscles....We shall see how things go this month with recovery, but that might be the next test we are looking into if my complications continue....like I said, I'm hoping it doesn't get to that point, but always have to make sure I'm ready to take medical steps necessary....my parents are very supportive as I've mentioned and they don't want to give up on me

Kymberly


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## annie7

that's wonderful your parents are so supportive and acting as your advocates. you will get to the bottom of this. wishing you all the best.


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## ksl2017

Hey everyone-

My parents and I discussed traveling to Mayo Clinic to get the testing done for motility issues in my small bowel and I just got done emailing Dr. Michael Camilleri (a motility GI specialist there) who was optimistic about scheduling some small intestine studies for me as well as some gastric studies as really these are the only two areas that my body hasn't been tested on; and realistically its all I have left now. So I believe we will be setting up some appointments on the phone tomorrow once his nurse is in the office. I will keep you posted once I have the dates scheduled. Its a bit frustrating having to doctor hop, but where the specialists only work at certain hospitals, what choice do you really have? I am hoping he is not booked out too far, but with my history I have learned that tests can be a waiting game.

Kymberly


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## annie7

Kymberly--oh that's great! so glad you have a plan! and hopefully the nurse can fast-track you in there and you won't have to wait so long. i would think/hope that they would fast track you especially since you just had surgery and it isn't working and you're having problems.

fingers crossed and prayers said that you get in there right away. please keep us posted. thanks


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## annie7

ps--i'm glad you're getting all that good help, support and advice with finding a doctor etc on AGMD inspire...good luck with all your phone calls today.


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## Miss Beany

Hi Everyone!

Sorry for the delay - worked all weekend and was zonked when I got done.

Kym - so glad to hear you had such a great time at the game! It was ironic you mentioned how things used to be when you were playing in high school...my Mom brought up how I used to do everything and anything and how strong I used to be - i guess it was that way until the colon issues just caught up with me and slowed me down, taking an ultimate toll on my entire body. Amazing how this stuff happens, but I have faith that some day, we will get back there and will just have hells of stories to tell!

I drink carbonated beverages every now and then - sometimes they give me a stomach ache, oddly enough. I never really noticed them moving things along more though - seemed like water or non-carbonated beverages were the best thing for that, at least for me.

I am very happy to see that you are going to go get the small intestine transit checked - that was something my GI doctor and I briefly talked about on Friday at my appointment. You will have to keep us posted when your appointments are scheduled and such. Which Mayo clinic are you going to? You are in my thoughts and prayers!

As for me, my GI doctor suspects some slow motility in my small intestine, but is optimistic that things will work out. We will see. He also prescribed things to slow my system down - dicyclomine (I think) and to help w/ loose stool...though I am so leery about taking that. He actually wants me to start taking that after each meal...and I'm thinking to myself, isn't this going to cause me to get constipated? When I took it on Friday, it did exactly that. I dunno. My sister actually wants me to go see someone at the Mayo Clinic by her house in Arizona because she and my brother-in-law do not feel like my doctors are adequately addressing my issues, given the chronic issues with the GI, the chronic migraines, and now stomach ulcers. My parents think it might be a good idea too...I just don't have the time or money to do that right now, as much as I want to. And it's hard for me to look at my doctors and think of leaving their care because I do trust them...I dunno, I likely will stick things out for a bit more and see where they go. I know I was definitely all blocked up after this incident from last week and things finally got moving as of Saturday night - it was awful. I was so constipated, it hurt like hell to go to the bathroom, misery. I have another flex sigmoidscopy scheduled for April 4 to make sure everything is okay with the rectum and the connection my surgeon made - i was unsure things were okay until things got moving again, but who knows. I still feel like things get stuck on my left side and I have to strain like crazy to get things completely out of me. Again, just another reason why I am leery about taking meds to slow things down...but at the same time, I have those accidents. Tough call!!

Annie I am so sorry there does not seem to be a clear cut solution for your issues. I will continue to keep you in my thoughts and prayers!

Hickchick - good luck with your surgery!

Warm wishes,

Gina


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## ksl2017

Thanks everyone for your support. I just don't want to give up hope that there is something medical professionals can do and since I haven't had the testing on my small intestines that is the valid next step. I think I mentioned that I never have episodes of throwing up or nausea or vomiting, my food just seems to go down to a certain point and stop. So perhaps there is just some part of my small intestine that still has the colonic inertia and there's a possibility to take that out and things could improve. We shall see....that is what the testing is for and I know there are always doctors out there willing to help when one door closes or other doctors tell you there is nothing they can do. Gina we are still young so we absolutely cannot give up hope. Thanks for sharing your story. I agree that I would never want to take anything that is supposed to slow down the bowels, especially with our conditions. I am very dependent on the Miralax right now as I simply do not go if I don't use it. So that in itself says something right there. The Mayo Clinic in Rochester MN is the hospital I will be setting up appointments with and the nurse said she'd have the scheduling set tomorrow which is when they will email me or call my parents house phone. I agree with your family about going to get the proper tests and such for your medical condition, but also I can see where its tough to leave the medical team that has been helping you thus far. But I've learned that sometimes no matter how much your primary care doctor in your hometown wants to help and see you get better, sometimes they just don't have the tools or necessary testing to help you and they have reached their limit with their resources. At that point you have to feel confident enough in your own body and feelings of your health that you can seek treatment elseware. I wish you best of luck in these coming weeks with your health and I will let you know when I figure out my test dates!

Annie- yes yes I agree that the AGMD inspire board is a great place to ask questions and seek advice because it really is a place where many individuals have gone through a lot of the testing and things to get their diagnoses and medical treatment. I'm very thankful for it!

Happy St. Patty's Day to all!

Kymberly


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## annie7

Kymberly--thanks for the update. glad you got the ball rolling at mayo--you'll be in good hands there. keep us posted.

Gina--i do hope your doctors will get everything sorted out for you so you will start to feel better soon--you've been through so much.. thanks so much for your thoughts and prayers!









to both of you--wishing you all the best. please do take good care of yourselves. keeping you in my prayers.


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## ksl2017

I don't think I mentioned it here yet, but my appointments with Dr. Michael Camilleri at Mayo Clinic in Rochester, MN will be April 22-24. He actually only sees patients once a week each month so I was glad to get the next coming appointments with him! This will give my body time to heal from the reversal surgery and see if things do pick up anyways in the meantime (although I don't really foresee that happening because as I've learned you can't really fix the muscles and nerves in your intestines once they are compromised as I've known this from my issues with the large intestine). I will just have to keep using the Miralax as needed. I'm thinking about trying some powdered magnesium as well. Does anyone have experience with this or have any suggestions for me to help keep things flowing? Thanks!

Kymberly


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## annie7

Hi Kymberly---so glad you got your mayo dates set with dr camilleri--i hear he's terrific. you'll be in good hands.

sorry i don't have any experience with powdered magnesium so i can't help you there although i've seen quite a few people with constipation problems on agmd say natural calm works well for them -- that's powdered magnesium. and candace over there drink lots and lots of miralax to keep things moving... yes---do keep things flowing and drink lots of water when you take miralax etc but i'm sure you know all that already.









take care, keeping you in my prayers, annie


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## Miss Beany

Hi Kym!

I am so happy you were able to get an appointment with Dr. Camilleri - hopefully he will be able to shed some light on what is going on with your system and have a positive prognosis. How have things been the past few days? Any improvements? I know my system was very, very slow to start when they reconnected me immediately. It took 12 days for my bowels to wakeup and use the new connection - so hopefully it is just a slow start. Mine didn't start moving until I had the TPN. I was kind of surprised they didn't give me any laxative or miralax, but given my system was so zapped with that before, they didn't want it to become dependent on that indefinitely, at least that was how my surgeon explained it to me. Even now when I get backed up, my GI doctor does not want to me to use any form of laxative, though my problem with incontinence has him prescribing stuff to slow my system down, including immodium (I haven't taken it, I'm too afraid to). I have had to take his dicyclomene with each meal to slow things down and prevent loose stool/accidents. It definitely bulks things up a bit and does allow me to function better at work and school, versus running to the bathroom immediately after eating. Though I woke up with another mess last night, so don't know if it's super effective or just delaying the inevitable.

I did start my pelvic floor physical therapy on Thursday - my therapist is great. She said I had a lot of external and internal structural issues, which is likely contributing to everything. We are doing biofeedback on April 1, the next time I go. I have a bunch of exercises to do in the meantime. Oddly enough, she said my entire right side is crunched up and super tight - I was amazed at how much she could tell just by looking at the external part of my body. It will be interesting to see what she sees as the prognosis with this all. She wouldn't give a clear diagnosis until we do the biofeedback, so hopefully I will have that information soon.

I also never used powdered magnesium before my surgery and really do not know what it is. My advice is to start eating greek yogurt - one 5.3oz container a day. I found that helps unconstipate me when I get backed up. I usually have the dannon light and fit greek with a bowl of fruit (strawberries, banana, cantelope, mango, apples, grapes, nectarines, plums). That almost always helps me move things along, likely from the live bacterias in it. So maybe give that a try? Also drink plenty of fluids - the more you drink, the more things will push through.

I hope you are both having a great weekend!

<3

Gina


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## ksl2017

I just got a phone call today that Dr. Camilleri is able to squeeze me in for the rest of this week with my testing if we are able to travel to Rochester tomorrow. My mom and I are thrilled so we will be leaving tomorrow early morning. I'm having some specific motility testing done Wed and Thurs and meeting with him Thursday. Possibly more testing for Friday then. But we will be at Mayo Clinic in Rochester, MN for a few days it appears. I'm glad they are getting me in earlier because I have really been struggling with trying to get things to move anywhere in my intestines. And honestly the Miralax has become pretty much noneffective. I have actually tried yogurt already even but that just creates more gas and bloating that gets trapped in me sadly. Even the fluids I drink make me feel super distended. It is a lot of the symptoms I actually had prior to having the total abdominal colectomy which leads me to believe I have a dysmotility disorder somewhere in my small intestines too. Hopefully it is isolated. I am praying for some solutions to this after the testing and treatment options. I'll have to update you all when I get back from my appointments. Take care until then!

Kymberly


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## annie7

oh so glad you're going right away--great news! isn't he a wonderful, caring doctor! sorry you're still having problems. i'm sure he'll get to the bottom of all this and will be able to help you.

keeping you in my prayers and sending positive healing thoughts your way. wishing you all the best. annie


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## Miss Beany

Kymberly!

I am so glad you are getting the testing done immediately rather than waiting and feeling miserable and backed up again, especially after being through what you already have! Please let us know what he says and what these studies show. I am pulling for you and hoping and praying for an easy fix and answer to this all!

Hugs,

Gina


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## ksl2017

Well after testing Dr. Camilleri informed me that I had pelvic floor dysfunction. This is very upsetting news to me because I went through with the total abdominal colectomy and ileorectal anastamosis only to find out that this wasn't a cure because I have this outlet problem. I had a defoctogram and an anal manometry done prior to the surgery and both tests showed no issues. But I guess they were false negatives. I have to start biofeedback once we contact my doctors on Monday. It is no wonder I have been feeling backed up on my right side and still having constipation because I always felt the need to have BMs but I couldn't get anything out. I am now going to be seeking advice about this, however from what I've seen, a lot of outcomes seem to suggest that sometimes biofeedback does not fix this condition and an end ileostomy is the best solution (if you can call that a solution) to the issue. The struggle continues but I'm willing to try the biofeedback.

Gina did you start biofeedback yet??

Kymberly


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## annie7

Hi Kymberly

that's good you got a diagnosis but yes i can definitely understand why you feel upset with it in your situation. so sorry! but please try not to be too discouraged...

biofeedback can help. i know there are are negative reports out there about it from people but on these health boards it's always the problem people who report in the most--not the people who've had success. they are the ones who aren't on the boards anymore because they don't need to be--they've had success with it.

but really-- biofeedback does help some people. i have pelvic floor dysfunction and biofeedback did help me a bit. i still have to take laxatives because of slow transit and also because of pfd but at least now--after taking a course in biofeedback/PT last summer--i don't have to take as many laxatives as before. so it did help me a bit. but then i have 50 years of tight "muscle memory" to unlearn. you will probably have more success with it because your pelvic floor problems are not as long standing as mine are.

i have also had some success recently with my home biofeedback machine that i bought in february. i've been using it daily and have been able to relax even more--so i've been making progress because of it. i'd heard from others that it helps to do the home biofeedback after taking the course with the PT. and this is what the PT's at the mayo clinic biofeedback course advise their patients to do once their course of treatment at mayo is over--buy the home machine and practice at home. for those of us with the long term tight muscle memory it takes a lot of work to unlearn all that muscle tightness--lol....

will you be doing biofeedback at mayo?

please, if you can, try to think positive about it all. i know it's hard and discouraging--you've already been through so much. but biofeedback can and does help. it's an individual thing--just because it may not have helped some of the others doesn't mean it won't work for you







.

keep us posted. keeping you in my prayers!


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## annie7

ps--sorry to keep going on and on about all this but have you read Dreamcatcher's post about her recent course of biofeedback at mayo? it's long but it's so worth reading--she had a very positive experience









http://www.ibsgroup.org/forums/topic/169925-bowel-retraining-mayo-clinic/


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## Miss Beany

Hi Kymberly -

I am so sorry to hear this...but I completely can empathize with you. I have PFD too, and I am straining more each day to try to go to the bathroom. My output has become less and less. I actually was back in the ER yet again yesterday for severe stomach pains, which radiated around my belly button up to my stomach and to the right side. None of the tests they did (xray, ultrasounds, and bloodwork) showed anything, so they sent me home with teh same pains I came in with, even though my GI doctor was the one who sent me there. Would love to know what happened, but I am guessing everything is interconnected with the PFD, ulcers, and the new system in general. I'm exhausted, frustrating ,and beginning to feel defeated.

I am getting my first round of biofeedback this Tuesday when I resume my pelvic floor physical therapy. She too said my sphincter is shot, just like every doctor has. I also see my surgeon on friday for a flex sigmoidscopy and plan to ask him if there is a surgery we can do to strengthen the sphincter muscles to reduce incontinence, and continue with the pelvic floor PT, even though at this point I am wondering if that will even be able to fix me. My physical therapist said she will work with me, but that we have a lot of work ahead of us because I am in pretty bad shape. I guess all of my muscles are super tight and not coordinating correctly. And it's both external and internal issues with the pelvic region. I never thought of any of this stuff when I was having difficulty or couldn't go - always thought it was just that colon not working...but now I wonder. At any rate, I will let you know how that biofeedback goes and if she offers up any type of hope or diagnosis or what she thinks will happen for the future. We are so young with this all, so I would hope the body is resilient enough to be able to be retrained...but then again, knowing the pattern of motility issues that lead us to get our colons out, makes me wonder how reversible it is.

i am considering making a trip to Mayo Clinic if I don't get clear answers soon. As much as I like my team, I can't keep going through all of this without a clear indication what's going on and a clear solution to it. Medications seem to do more harm than good. And I guess too it would be nice to have a second opinion on top of this all.

Are they sending you to pelvic floor physical therapy? How is your food intake? What type of foods are you eating? I am eating more and more frozen yogurt as it is easier on my stomach. I'm back to feeling nauseous after I eat again, depending on what foods, but mostly in general everything.

Annie - I hope you are doing well. I think of you both often, and it has been a godsend to have this forum to talk to two people who truly do understand what I am going through, particuarly after the experience I had teh ER last night.

Warm hugs!

gina


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## ksl2017

Annie-Wow honestly you are just such a positive and inspiring individual. I honestly did feel defeated when the GI doctor at Mayo told me that it wasn't going to be easy and we would have some work ahead of us. My muscles have been struggling and not relaxing for several years ever since I had my appendix removed in 6th grade. So I have years to unlearn that tightened muscle memory. I am certainly going to start with the biofeedback. My parents really want me to have the best of the best so they are checking what options we have in Green Bay, but if they are unsatisfied with the therapists here my parents will be sending me to Mayo Clinic or Cleveland Clinic for the biofeedback. I honestly want the best of the best too because I know the struggles of this issue are just really taking a toll on me. I know I have to keep my chin up, but realistically if I do not improve over the summer I cannot dismiss that I'd rather just have an end ileostomy and move on with my life. Per our gastric emptying and small bowel transit study, I did have normal ranges so there isn't issues with the intestines or my stomach. I just get all backed up on my right side because of this diagnosis it seems. Thank you sooo much for the positive remarks! I am young so I hope that I can improve from the biofeedback. But like you said, I have to give it a try and not dismiss anything just because I read other individuals nonsuccessful outcomes.

Gina-Monday my parents and I are seeing whats in Green Bay otherwise they want to send me to Mayo Clinic or Cleveland Clinic for biofeedback. I feel defeated, but I know its protocol too to give this biofeedback a try. And I'm a fighter too, always have been, but yes like you mentioned after going through this pain and struggle for as much time as we have, sometimes you just want relief (even if that means a bag for us in the end). As for my food intake, when I did the gastric emptying study at Mayo Clinic I was just devastatingly in pain because I had to eat this scrambled egg omlet on wheat toast with a small milk....and then for lunch a turkey sandwich with mayo on wheat bread and jello and a full bottle of water....now I haven't eaten a sandwich in almost a year because of the constipation! It was just miserable because from 9am-3pm I just didn't have a BM at all and so I was pretty full and once again distended. After all the testing and seeing my doc at 4pm and getting the diagnosis I then asked him..."so now that I have this diagnosis and dysfunction, how am I supposed to get my food waste out of me?" And his response was that while I'm waiting for the training I would have to use Miralax and bisacodyl as I see fit.....specifically 6 capfulls of Miralax if I don't go for 2 days. Now as you both know I have been using the Miralax religiously ever since my surgery reversal. I tried bisacodyl again just 2 tabs before bed and that did help too. But it all just caused cramping and discomfort and then several restroom visiting from watery stool because that's the only thing that happens with the Miralax. Normally for food I just follow the soft GI diet still because of my reversal instructions. I eat things like waffles with yogurt for breakfast, unbreaded fish, hamburger patties, sloppy joes, applesauce, pudding, frozen yogurt, grilled sandwiches that are soft and cooked with butter and easily digestible meats, turkey, chicken, etc. Anything that's part of the GI soft diet. But some days I cannot eat because I have to use it for clean out  Anyways its just been a struggle trying to maintain my weight with this disorder. And obviously who wants to eat when your in pain from it and have to worry about getting it out of your system.

Like you said its been a blessing to have this place to talk to with individuals going through the same thing. Gina we are not far apart from our surgeries even so we seem to be on similar paths. Annie I am curious as to what your options would be with just having an end ileostomy? Is that an option for you? Also have either of you tried Linzess at all or other meds? I haven't had anything since I was prescribed Amitiza back in May 2013.

Always thinking of you both!,

Kymberly


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## ksl2017

PS Gina please do let me know how your biofeedback goes and indications from your therapist and doctors for the future if this does not improve. I certainly could use the advice as well! My mom said she's willing to see this biofeedback through, but she also knows that if it doesn't work, she's not just going to see me continue to suffer with life and living off laxatives. Bless her heart, I am just so lucky to have a mother like her. Shes so strong and doesn't let any doctors push her around. She just wants to see me have a quality of life in the end. I mean I'm supposed to go back to Pharmacy school in the fall and I know that without getting this situation under control I could not possibly think about graduate school just yet as its a struggle just to eat and use the restroom each day. I am sure you are in a similar situation.

And one more side note I have been getting asked to go on dates and things when I work up the courage to be social with my friends, but I refuse to get into any relationship because I don't want a guy to have to deal with this and see me at my worst. Because this life just isn't a life for anyone trying to start relationships.

Kymberly


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## ksl2017

PSS Gina I forgot to ask, but are you on any laxatives or medications currently to help you go? I am confused as to your PFD diagnosis. Is it because you are having the accidents or is it like me where you cannot relax the muscles enough for stool to pass through? I too still feel like I have slow motility issues on my right side somehow affecting this, but I don't know how that plays into PFD too. Just some last minute questions I had.

Kymberly


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## annie7

Gina--so sorry you were at the ER last night! and so sorry they sent you home with the same pains you went in with! i do hope you're feeling better today. and best of luck with the PT. these therapists are amazingly helpful. i do hope and pray it all works out for you.

and Kymberly--so sorry for your struggle with the laxatives and everything. i'm on them too--dulcolax and milk of mag. sometimes they work, sometimes they don't.

your mom sounds like a wonderful person!! good for her --for both your parents--to keep fighting for you and wanting the best for you!

and to both of you--it;s only natural to feel defeated especially with setbacks and everything else going on--the misery, the pain--and especially with multiple issues. it's good to be kind to yourself. don't be too hard on yourself. but yes you are both fighters and so am i ---we are strong women and we will keep fighting. and in the end it will all work out. we'll try everything we can. and yes, like you've mentioned, maybe an end ileo is the answer. but i do want to try everything else first.

my U of M gastro wants me to try bio/pt again this summer but this time at the U of M hospital because there apparently i can work with the balloon in addition to the biofeedback (the bio i'm doing at home anyway with my home machine) so i maybe will try that. maybe balloon work will help with my megarectum and rectal hyposensitivity. like i said, i'll trying everything at this point.

Kymberly--yes do give linzess try if you can. everything is worth a try. i tried it. couldn't get it to work quite right for me--long story--now i use it for cleanouts. when taken with food and not a half hour before eating as prescribed, it will def clean you out. or at least it works that way for me. but everyone reacts differently to meds so it's definitely worth a try!!

many hugs and prayers for both of you!


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## ksl2017

I thought you both might find this link interesting...

http://www.gutsense.org/gutsense/the-role-of-miralax-laxative-in-autism-dementia-alzheimer.html

I am going to discuss my concern with my surgeon when I get the chance to speak with her about this. I feel as if there has been some type of significant nerve damage to lower small intestine and this is why I cannot seem to get anything moving down there. I'm just baffled I never came across this earlier even because all the doctors ever prescribed me was heavy doses of Miralax. And now I am really not responding to it so I decided to research a bit once more.

PS I did speak with a girl my age about the biofeedback program at Mayo Clinic and I do not think it is for me. I want a personal physical therapist who specifically deals with Pelvic Floor Dysfunction because I do not want to be just another number in a group of people. Everyone's body is different and we all have different symptoms. So we will be looking for a specialist closer to home. I know it is protocol to do this, but I also need to discuss with my surgeon how I'm supposed to get any nutrition and such when i cannot empty anything out of me. As I said the Miralax is really not working and I just get more cramping and feeling distention. I don't think insurance will cover the Linzess now that I was diagnosed with the Pelvic Floor Dysfunction. The only thing I see them prescribing would be Valium as a muscle relaxant.

Kymberly


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## annie7

i have a pfd dx and my insurance ( a tightfisted HMO) covers linzess. they did require a prior authorization from my gastro but once that was submitted they covered it. my gastro first gave me linzess samples to try and it did work for me at first so that the basis of his prior auth--that i had tried the samples and it helped.

botox injections can help people with pelvic floor dysfunction. have you read/heard about that? i've read success stories--at least one here on the ibs board-- and research reports but have also heard that mayo doesn't do it. other c/r surgeons do. it helps relax the muscles down there. i plan to ask about it next time i see my gastros. here's a link about botox; there are others.

http://www.ncbi.nlm.nih.gov/pubmed/10733120

yes i've seen that article before and there's been some talk on AGMD as well as this board about all that...candace and many others on AGMD as well as people here and my gastros and surgeon do not agree with the article. i have my own personal doubts about that theory based on what i've researched and not sure how factual a website gut sense really is--it looks kind of hinky to me--they are promoting/selling their book and they have an agenda to push... but each to their own opinion i always say...









if you don't want to take miralax you could try natural calm. a lot of people seem to like that.

yes you definitely want to be sure you get enough nutrition. hope you get help with that real soon.

take care..


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## annie7

..

Kymberly--just to add a more positive note re the biofeedback. i do understand your reservations, truly i do--using laxatives, being full and distended, rectal pain. believe me i had all those problems too and then some when i was going to bio/pt last summer--so do all of us going to bio/pt--that's why we're there in the first place. i would go in there for my session all bloated and gurgly and full and sick. my wonderful pt, pam, was so understanding--she'd do a terrific bowel massage on me and she helped relax me. and i did make progress with the sensor--i got it down from a 4 to a 2. and i kept up with the home exercises even after my surgery and everything and maintained it at a 2. and i'm making even more progress with my at home bio machine.

i understand you feel defeated. i did, too. and still do at times...but it really does help, i found, to just drop all the preconceived notions one picks up about bio/pt from reading all the negative things on these health boards and just go in there to your session with an open and positive mind. i can't stress that enough...it's just like trying new meds or anything else. just because other people on health boards are negative doesn't mean it won't work for you--or at least help in some way. ...









maybe i'm lucky...i started dealing with all these bowel problems back in the early 70's long before there was internet or health boards to influence me...it is good to be able to research things on online on factual websites. and the support from other people is wonderful. but all the personal opinions of other people can get in the way...just my 2 cents and i'll shut up now







lol...


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## ksl2017

Annie- haha thanks for the feedback. I am certainly going to do the biofeedback and physical therapy like I said and I WILL go in with an open mind. My surgeon's nurse suggested trying warm water enemas now and she is also going to see what my surgeon suggests about prescribing me lactulose since the Miralax is becoming unaffective. I know exactly what you mean about everyone's opinions. You have to take them with a grain of salt because we are all different individuals. Now I for one am not a quitter and I know I'm going to keep trying everything first before I consider anymore surgeries. Do you use enemas at all or have suggestions for them?


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## annie7

i used to use enemas years ago but--and NOT to discourage you- they stopped working for me for some reason--i started retaining too much water. they are successful for many people. bijoux bloat (and there are others) over on agmd is a big proponent of them. you could do a search on her content from her profile page and her journal. she's full of tips, encouragement and advice.









definitely worth a try--wishing you all the best.


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## Miss Beany

Hi Kymberly!

Sorry for taking so long to reply - worked all weekend and am getting slammed with internship work for our alcohol screening day this week. I'm not doing super well balancing everything, and with how i am feeling, it is making it worse.

In terms of medications I was on before I had my colon removed - i was taking Linzess 290mg daily, miralax, and senna 2-4 pills each day. Since surgery, I have not taken any form of laxative. Things do move through me, sometimes slower, sometimes faster. Typically after I eat, or when i am eating, i have to run to the bathroom and have notoriously had accidents, often not knowing about it. On the opposite end, I am having trouble evacuating when I try, and am constantly straining, and often feel like there is incomplete emptying, which i had before the colectomy. The straining and incomplete emptying I am guessing is due to PFD - my entire right side is all compacted and super tight, my therapist said. My sphincter is also shot, as numerous doctors have told me, which is i think why i keep having accidents. I think there are surgical options to tighten the sphincter muscles, which i plan to ask my surgeon about when i see him this friday for my flex sigmoidscopy. I also feel like there tends to be blockage where i am reconnected as i literally have to push down on that area to get things to move - like pressing deep in my stomach to get things out...does that make sense or has that ever happened to either of you? It may sound awful, but it literally is what i have to do. I really don't get it. I'm supposed to do the biofeedback today in therapy, so will definitely let you know how that goes. i've done the exercises she gave me, though i really don't feel like they have done much..but i also haven't had enough time to do them every day like i'm supposed to thanks to my ridiculous schedule.

I have been getting nauseous again after i eat - don't know if that is because of my ulcers or if there is something going on with the flow int he small intestine. I talked with my GI doctor yesterday about the ER incident on Friday and the pain. If I am not feeling better by next week, he is going to consider sending me for an MRI of my small intestine. I also am going to ask about a repeat endoscopy when i see him at the end of April to be sure those ulcers are healed. I am still getting awful pains that come and go - wish i knew what they were and why they are happening!

My diet has been pretty poor, particularly since i started working at the restaurant. often times i don't get home until after 10 or 11, don' have dinner, and because of my accidents, the only thing i ill consider eating is frozen yogurt. I really don't even want to eat - whenever i do, i don't feel good, and i always deal with the urgency issue and accidents, even on the Bentyl my GI doctor gave me to slow things down. It's so weird having the mix between the accidents and struggling to go. Does not make sense!!

In terms of enemas - they hurt me to use and i dread that i have to use two of them before my flex sig on friday. They never really did a good job of emptying much out of me and i think i did retain a lot of water from them, like Annie.

I hope you are both doing okay in light of everything. i apologize if this response is not as bright and cheery as i usually try to be. Definitely think i am just frustrated and feeling a bit hopeless with things at this point. My parents are frustrated and are losing faith in my doctors, even though i still think they are trying to do their best. Kym - i am so thankful you have such a huge support system behind you in light of the difficulties you are experiencing. Have you thought that maybe there is scar tissue narrowing a part of your right-side small intestine? That was something my nurse friend suggested to me at my connection site since i said i have to push down on it to move things through. Might be something to ask your doctor?

Hang in there - thinking of you both and sending warm thoughts your way!

Gina


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## ksl2017

Gina

Wow it is so ironic that you say that about pushing down on your right side! Because I do that too to try to get things to move more into my rectum. I always have incomplete emptying and never ever feel completely empty so it is hard to keep eating when it all gets backed up again. I had a temporary ileostomy on that right side too along with appendix surgery and the laproscopic scar so i DO believe that there is narrowing and scar tissue going on in that area with all that surgery commotion. I want my small intestine checked out for motility too because when things get to the bottom (and especially on my right side) things just come to a screeching halt with lots of cramping. And when I use Miralax now it really just gets stuck inside me again just like the colon did. So I am wondering about motility issues at the end of my small intestine just like the colon. I really want them to check this out. I have read about some cases when surgeons opened the patient up for surgery that they also found dead small intestine areas,,,...I really feel like I have that going on because my surgeon left all of my small intestine in. And when I think about it, all the golytle prescriptions could have stretched it out too or something.

Now ironically just TODAY my surgeons nurse said that she thinks Mayo Clinic misdiagnosed me with Pelvic Floor Dysfunction and that my issues sounded higher up from the sounds of my symptoms (everything I stated about the right side issues and how my temp ileostomy never really functioned ever to produce output and I felt like i had blockages all the time). I think this is because I told her I was confused about how I passed a Defoctogram and an Anal Manometry at CC before my colectomy surgery too. She actually really listened to my symptoms and was great to talk to. I know she wrote it all down for my surgeon. They want me to come see a GI motility specialist there and so I said okay. Now she will be getting back to me with an appointment sometime this week, I do not know what they plan for testing wise, but I do know I will be asking about something that can assess the motility on that right side. My surgeon is out of the office all week though too. I'm just kind of at a stand still I feel because Miralax really isn't working. And I too have experienced worsening symptoms from using an enema because I just retain more water in my small intestine now.

Annie-I will have to look at the recommendations from inspire on how to use different ones. I think I will be getting a different opinion too from Cleveland Clinic because I don't want to spend tons of money on biofeedback programs if I still have another issue in my small intestine too.

PS: I saw a post about people using natural calm and cayenne pepper supplement capsules to help motility and peristalsis....either of you tried this??

We keep fighting and staying strong!

Kymberly


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## ksl2017

PSS Oh and another question, I'm going to ask if anyone has been prescribed Bethanechol for helping to urinate?? Its supposed to help you urinate more. I don't have any spasms or pains urinating or emptying my bladder, I just get so much fluids trapped in my intestine still when I drink and can't get it to move to my bladder even. i feel like this may also be because of my suspected small intestine issues.


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## annie7

Kymberly--oh yes--like i said before on AGMD, i think another opinion and more testing is a great idea! so glad you'll be doing this.


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## ksl2017

Yea my mom and I are just basically wanting to rule out everything, and honestly I've had every other test it seems like, so one more invasive test with my small intestine (specifically the ileum part of the bowel) will not kill me. I am tough and I'd rather rule it all out. I think this is even more interesting because it would make sense as to why my temp. ileostomy on my right side was never really working. I never got it to work right before my reversal even.

Gina-did they mention anything about part of your small intestine being effected the same way as your colon was? Just curious.


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## Miss Beany

Hi Everyone!

Kymberly - I continue to have to push on my left and right side to move things through. it is the weirdest thing ever, but i did tell my surgeon today and he said that is a result of my pelvic floor dysfunction. I guess my body has trouble getting things to move down to the rectum, then evacuate at all or completely. It sounds like you may have some significant scar tissue on your right side, likely from the ilestomy that might be causing some form of blockage. I would definitely want to get that checked out soon so they can work on repairing that - though, maybe your body, like mine, just reacts very badly after surgery. My surgeon said today I am still pretty soon after surgery, which could be why I am having complications - but at the same time, he does know a lot of this is a result of what we feared all along with my pelvic floor dysfunction.

When you push, does that allow you to move things? Usually when I push, I feel it come to the rectum and sometimes it just then like pops out of me (sorry, sounds gross). I agree too though that it might be a part of your small intestine that is slow transit, much like your colon was. That was something my GI doctor suspects in me, but even with that, he is trying to bulk things up and slow things down because things do move through me rapidly and then i have no control over it because of my pelvic floor dysfunction. As my physical therapist said this week, it is almost like my muscles get too tense, then relax too much, and there is just no coordination. Hopefully the physical therapy exercises and biofeedback will help things out; if they don't at the end of this all, my surgeon and I will seriously discuss moving to Interstim treatment to give that a try. It's a new surgical procedure that implants basically a stimulator to control the nerves and muscles in the pelvic floor to help with emptying and preventing incontinence. We talked about that today - I am going back to see him after I am done my round of physical therapy. Annie - how long did your pelvic floor physical therapy run?

Kymberly - I am so thankful you were able to have a helpful and informative discussion with your nurse. Sometimes you just need to have someone hear you to get the message and ball rolling. It sounds like this may have been a way to start things along that process for you! I am hoping you had a better rest of your week and that things might have improved even a little bit by this point?

I never used any natural calm or cayenne pepper to help me. The only things I used were Senna, Linzess, Miralax, and Ducolax. The thing with your bladder does sound like it might be related to pelvic floor dysfunction. or, did you have a catheter for your surgeries? And if so, for how long? I know my bladder reacted very poorly after my 1st and 2nd surgeries, so much so I had to wear a leg bag for over a week both times. it might just be a complication with that - definitely run that past your nurse/doctor and ask if that could be from the catheter if you had one.

My GI doctor suspects some slow motility in my small intestine too, even though things move pretty quickly after I eat, but then again, that is because the small intestine is so tiny compared to the large intestine. I did find out that my surgeon also removed a bit of my small intestine - I did not know that. I also did not know he also removed my appendix during the colectomy - interesting! I guess it's good though, one less organ to have something go wrong in!

In my discussion with my surgeon today, he was puzzled as to what happened with me last Friday to send me back to the ER. He seemed pretty convinced I had some form of obstruction to cause my symptoms and luckily things just worked their way out. I am guessing any time I get pain like that, not to hesitate to call the doctor/GI to run it past them, because I know obstructions can be really bad, especially if it causes a rupture. Crazy hearing that was likely what happened last week though. Also even crazier that the chief of emergency medicine who was treating me missed that, didn't look for it, and didn't call in any consulting GI or colorectal surgeons.

I hope you are both doing well. I know I have been having a really hard time keeping my head up lately. I felt like things were so great after surgery, and it just feels like since i had the hiccups with teh stomach ulcers a month ago, things have been on the downswing. I know I need to be positive and hope for the best though, and at least knowing there is an alternative treatment to my pelvic floor dysfunction and incontinence if pelvic floor physical therapy doesn't work that isn't an ilestomy does make me feel a bit better. I was a bit relieved that my surgeon had me coming back after the therapy was over so that i wasn't left just hanging with this all. He also said that my GI doctor had talked to him and he is determined to help me deal with this all. Definitely comforting in light of this past month from hell, basically.

Thank you both for listening and advising along the way, and sharing your experiences. It has truly been a godsend and I am so thankful to have met two wonderful individuals like yourselves!









Warmly,

Gina


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## ksl2017

Gina- I have tried pushing on my left and right sides now to get things to move, but I too have that same issue of getting things to my rectum and not emptying completely. When you say push, do you have any certain technique you do? Not to be awkward or too personal, but at this point i feel comfortable asking these questions with you two as you have really been my go to individuals with this disorder. After learning more about this Pelvic Floor Dysfunction, I actually do believe I have these issues now. I can get things down okay after eating and then they just stop at the end when it comes time to eliminate. Sometimes I find that when I'm full and stimulate more intestinal motility by eating, it pushes whats down there to the rectum actually. This is discomforting though too because I hate feeling full all the time still just like prior to the colectomy. I have never heard of Interstim for PFD, but now I will certainly be looking into that as well. I have to say I feel lucky half the time because I get to hear advice from you typically when you have procedures done before me! Then I get to hear your feedback on it. Please let me know how the biofeedback and physical therapy is going. I'm contacting my surgeon tomorrow as she was gone from the office for a week to see what Cleveland Clinic does for treatment and things for PFD and what the next steps would be if biofeedback didn't work. Did your surgeon say anything about a J Pouch even? I was curious to that treatment too. I did have a catheter in when I woke up from the surgery in December from my colectomy because my bladder needed the extra help. But I have to really drink loads of fluid before my bladder will empty because like I said I fee like it gets trapped in my intestine when my food doesn't move to the rectum. I had a rectopexy performed with my surgery too because my surgeon noticed my straining and overlap of the rectum from my defoctogram. I honestly feel like I am having semi prolapse again of the rectum when I try to go. I'm guessing I will need another defocogram after I tell my surgeon about this. I will keep you posted. A woman on another blogging website gave me the name of a PFD physical therapist in Green Bay that she highly recommended so if after I speak more with Cleveland Clinic and they approve of the biofeedback I will most likely be getting in contact with her. And Gina it is completely understandable about your frustrations and feeling down because I honestly feel the very same way about this all. Its a tough pill to swallow that's for sure, but I have to believe that our doctors and staff are going to do everything they can to help us because we need to have a better quality of life and get this figured out so we can move on with our lives. We have been struggling way too long with these medical issues and I have to stay positive that my surgeon and staff won't just give up on me and tell me I'm going to have to live with it the rest of my life. I just can't accept that level of defeat or thinking.

Annie-how has your biofeedback been coming along? Any more news from doctors about treatments or future appointments?

Always thinking of you both and wishing you well!


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## ksl2017

Gina- I have tried pushing on my left and right sides now to get things to move, but I too have that same issue of getting things to my rectum and not emptying completely. When you say push, do you have any certain technique you do? Not to be awkward or too personal, but at this point i feel comfortable asking these questions with you two as you have really been my go to individuals with this disorder. After learning more about this Pelvic Floor Dysfunction, I actually do believe I have these issues now. I can get things down okay after eating and then they just stop at the end when it comes time to eliminate. Sometimes I find that when I'm full and stimulate more intestinal motility by eating, it pushes whats down there to the rectum actually. This is discomforting though too because I hate feeling full all the time still just like prior to the colectomy. I have never heard of Interstim for PFD, but now I will certainly be looking into that as well. I have to say I feel lucky half the time because I get to hear advice from you typically when you have procedures done before me! Then I get to hear your feedback on it. Please let me know how the biofeedback and physical therapy is going. I'm contacting my surgeon tomorrow as she was gone from the office for a week to see what Cleveland Clinic does for treatment and things for PFD and what the next steps would be if biofeedback didn't work. Did your surgeon say anything about a J Pouch even? I was curious to that treatment too. I did have a catheter in when I woke up from the surgery in December from my colectomy because my bladder needed the extra help. But I have to really drink loads of fluid before my bladder will empty because like I said I fee like it gets trapped in my intestine when my food doesn't move to the rectum. I had a rectopexy performed with my surgery too because my surgeon noticed my straining and overlap of the rectum from my defoctogram. I honestly feel like I am having semi prolapse again of the rectum when I try to go. I'm guessing I will need another defocogram after I tell my surgeon about this. I will keep you posted. A woman on another blogging website gave me the name of a PFD physical therapist in Green Bay that she highly recommended so if after I speak more with Cleveland Clinic and they approve of the biofeedback I will most likely be getting in contact with her. And Gina it is completely understandable about your frustrations and feeling down because I honestly feel the very same way about this all. Its a tough pill to swallow that's for sure, but I have to believe that our doctors and staff are going to do everything they can to help us because we need to have a better quality of life and get this figured out so we can move on with our lives. We have been struggling way too long with these medical issues and I have to stay positive that my surgeon and staff won't just give up on me and tell me I'm going to have to live with it the rest of my life. I just can't accept that level of defeat or thinking.

Annie-how has your biofeedback been coming along? Any more news from doctors about treatments or future appointments?

Always thinking of you both and wishing you well!


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## annie7

yes i also often have to push to get stool out but i push with my abdominal muscles instead of my hands. for some reason this works better for me than using my hands--maybe it's because i keep my stools fairly liquid-y with all the laxatives i take. they're easier to get out that way. while standing, i use sort of a pilates maneuver pushing down with my abs. my abs are pretty strong because of all the ab exercises i have to do for my back. and i also use both regular and dulcolax suppositories to help. my abs push it down and the dulcolax supps kick it out--lol...usually but not always...

Kymberly--good luck with your upcoming conversation with the Cleveland clinic. i'm sure it will be helpful. please keep us posted. and i do hope you haven't developed a rectal prolaspe again. i worry about that myself. things sure do get complicated don't they...

also--you might want to look into botox injections for pfd if you haven't already. ask your surgeon. if biofeedback/pelvic floor physical therapy doesn't help--or help much--sometimes botox injections work. botox helps relax those muscles. the injections have to be repeated every few months or so but some people have reported success--there was a botox success story here on the board a while ago...and there's this link to a study done on it (it refers to puborectalis syndrome which is another name for pfd). i pan to look into botox if more bioefeedback and the balloon retraining doesn't help:

http://www.ncbi.nlm.nih.gov/pubmed/10733120

i haven't started biofeedback yet. still trying to find out which place around here offers the rectal sensory balloon retraining in addition to the regular biofeedback. the balloon retraining is, i guess, supposed to help with my rectal hyposensitivity.

i am still practicing with my home biofeedback machine and have made more progress with getting the sensor down (relaxing).

yes. i too find that eating sometimes-- if i'm lucky --stimulates a bit of peristalsis which sometimes (again if i'm lucky) helps me go. and yes i too hate that constantly full, bloated, plugged up feeling...

Gina--in answer to your question the biofeedback i did last summer--it lasted for about seven sessions. it was cut short due to my cecal volvulous suddenly developing and subsequent emergency surgery. my university gastro who runs the biofeedback program told me the sessions they have at the hospital usually run about ten weeks. it is tailored to one's individual needs---you keep going as long as you are making progress. when that stops, it's over.

and Gina--that's good your surgeon has a plan for you with the interstim device if the biofeedback doesn't help. i've read that the interstim can be quite successful with incontinence. so that's good there's a backup plan in place.

good luck to both of you. yes it is hard struggling with all this but it sounds like you both have an excellent medical team working with you. and both of you--and i (lol) --- are fighters! we will get through this! take care, annie


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## ksl2017

Well here I am again flying by the seat of my pants! Cleveland Clinic called and said they had an opening for me to meet with Dr. Samita Garg there who specializes in motility and pelvic floor disorders. They had a cancelation this Thursday at 8am so I packed all my bags & paperwork tonight and will once again be traveling to Ohio to meet with her, explain my case, go over my records and tests, and then she will order tests from there.

Annie-thanks for that great informational post. Its really nice to hear your optimism with your biofeedback and training. Also its awesome hearing about your strong abdominal muscles. Now that I have to say is a plus! I certainly haven't had that strong feeling in mine for a long time due to the constipation issues throughout my life.

As always I will keep you girls posted with my tests, results, and future plans! Hugs and warm wishes!


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## annie7

oh Kymberly--that's wonderful news!! so happy for you that you can get in so soon.







Dr Garg sounds terrific especially since she is a specialist in motility and pelvic floor disorders---just what you need. you will be at an excellent facility in the hands of an exceptional doctor.

oh yes do keep us posted. sending lots of hugs and warm good wishes your way annie


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## Miss Beany

Hi Everyone!

I hope you are both doing well in light of the trials and tribulations you are currently battling. I think of you both often.

Kymberly - I have the exact same problem getting things down to the rectum. Once things do get there, it's like it explodes out of me, sometimes painfully so. As I am understanding this and the fact that i have huge issues with my pelvic floor, both structurally and internally, i'm guessing that's why. I also have incidents then too where I leak and have accidents -- makes no sense to me, but i am again guessing that the PFD just causes everything not to coordinate or work. I almost feel like more testing needed to be done before I had this surgery, but I did reject the idea of going for pelvic floor physical therapy when i first met my surgeon to discuss the surgery in september, merely because i had no time to do it between work, internship, grad class, and teaching. But, even with that being said, we also know my colon was definitely not working.

I am sorry that you too were diagnosed with PFD. it is a frustrating diagnosis to have, particularly after having gone through that surgery. I have actually had 2 rectopexies for correction of rectal prolapse. My first was last january, my 2nd was last June. i haven't relapsed yet, but know it is a real possibility since i am still straining to go to the bathroom. If you feel like something is coming out again - i had this sensation before mine came back - i would honestly talk to your doctor and even bring a mirror into the bathroom to see if something comes out. I know that sounds awful, but that was how i saw mine, which then progressed to being complete rectal prolapse again.

I will definitely keep you posted on everything wtih my PT. I haven't noticed any changes so far, continue to have accidents, and continue to strain. After I finish with the therapy, I go back to my surgeon. He actually has me keeping a diary of the accidents i have so we can keep track of it. It is also useful info to have for when i give weekly updates to my GI doctor. I have a feeling the interstim will be a real possibility for me...but that's the negative part of me thinking PT will do no good or not fix my issues.

I guess the important thing for us all is to keep our heads up and not give up. Definitely hard to do though in light of our difficulties!

Warm hugs to you both!

Gina


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## Miss Beany

PS - Annie - thank you for the info on the length for the PT. I do my exercises daily, even though it definitely does hurt or is uncomfortable. I have sessions scheduled through mid-May for now. I have to skip next week because the times keep conflicting with my classes, which i can't miss. Definitely will keep you posted though!


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## ksl2017

[I copied and pasted this into the blog because for some reason last time I tried to get onto the website it wasn't working so I just sent Gina a personal email...but here was the email....the blog is working again for me so I will post again and update]

Hey Gina,

I am emailing because I just tried to go on our blog and read the recent posts because I have been working and gone for a while, but when I went to search for it, it didn't show up? Is this occurring for you and Annie right now too? Anyways, I went to the Cleveland Clinic and met the GI motility Dr. Samita Garg. She ordered an MR Enterography scan for me to see about scar tissue issues or other things that might be going on, but she noted for the radiologist to check for small bowel dysmotility. So this Thursday morning I have to go in for that. Sadly I got back from my trip to Ohio and worked Friday, Saturday, and Sunday evening at the restaurant I waitress at. Needless to say I was exhausted trying to eat and drink small things still. I went to bed Sunday and woke up at about 3am with this terrible terrible cramping by my ileostomy reversal sight and went to the ER where they gave me pain meds and did X-rays where they found just a lot of stool and fluid build-up (like usual because I still don't go to the bathroom without excessive laxatives). Well my Miralax and bisacodyl were just not working and I hadn't gone for like 3 days so you can imagine where all that buildup was going again and now only in my small intestine .....so they gave me enemas at the hospital, but the buildup was higher up because it never reaches my rectum like I was saying on the blog. So they discharged me and sent me home with a colonoscopy prep solution and told me to drink that to clear it and call them if it didn't work. So I did that today which caused so much chills, spasms, and the shakes until I finally was emptying out. I slept from about 4pm until now when I woke up and had to take some of my Tramadal because I was having more cramping pains on my right side. I feel so ill from this continuing to occur and my mom was on the phone demanding I get my MR Enterography as soon as possible so we can send it to my GI doc at Cleveland Clinic. We discussed doing a SmartPill exam then to test for dysmotility after she gets the results back from the MR Enterography. If I am really not doing well again, my surgeons nurse said we could come back to Cleveland and have me admitted to the hospital there. At this point my mom is really just considering this because I am in so much pain anything I eat or drink anything. My pelvic muscles are just so soar and all my lady parts down there feel like they are being squished and pressurized from my bowel backing up always. Its just very consuming and stressful on my body. And that colonoscopy prep is always so hard for me to keep down in itself because it makes me nauscious, but at this point it was the only thing that cleaned me out. My belly went from looking pregnant back to flat after I took that prep. And I also only took half of it because I don't have a large intestine anymore so I could really only handle half of it. I'll keep you posted on my status, but I had to tell my boss I'm not going to be able to work until I get this figured out. Its just too exhausting and traumatizing to my body.

How are things with you?! Have you started biofeedback? Did you have more doctors appointments? Please give me and update as I enjoy reading your replys when I am at home resting with my heating pad on my belly most days. Take Care!

Kymberly


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## ksl2017

Update 4/18/14

I just completed my MR Enterography Thursday morning. My results from that, my Xray from the ER on Sunday AND CT scan from my ER visit on Tuesday are also being sent to Cleveland Clinic. Now I am just not doing very well at all and things have gotten worse. Miralax & bisacodyl basically have NO effect on me. I am hurting even more by my ileostomy reversal site as it has almost fully closed. I am experiencing backup on my left side now too and I'm really not sure if this is from internal scar tissue, healing, or if I just have small bowel dysmotility too. My mom was calling our hospitals in Green Bay because we need to find a plan of action for me as I really cannot eat or drink anything without it severly getting stuck in me and not being able to get it out. I told the doctors I cannot keep going back to the ER every time this happens. I feel severely malnourished and tired and just in pain anytime I eat or drink....not from being allergic to anything, but from it basically not moving throughout my digestive tract to my rectum. I too have experienced blow outs from the colonoscopy bowel prep which was the only thing that got me unimpacted the last time I couldn't go to the bathroom for 3 days in a row  This is just extremely frustrating and miserable. I heard my mom calling my nurse at Cleveland Clinic today saying that she cannot just sit by and watch her daughter be in pain daily and not be able to eat or drink and that I need to be in a hospital until they figure out what is wrong with my insides and all my organ down in the pelvic area. I would understand the pelvic floor dysfunction diagnosis more if I felt like things were getting to my rectum even, but they stop in my belly before I can even try to expel anything. Which just complicated things even more.

Gina I completely agree with you and I feel exactly what you are feeling with dating and hopes of ever leading a normal life. I know I will have to talk to my surgeon about this once she gets back from out of the country because I can't imagine she hasn't had other complicated cases like mine. It is the Cleveland Clinic so I'm sure they are used to collaborating on special cases and mine certainly seems to be that. At this point I really feel like I should be on some sort of TPN nutrition and fluids and my mom has also expressed this because of my bathroom and digestive issues. It is Friday and I know we probably won't be getting any results until Monday now because of the offices closing and such, but I will continue to update when I can.

Hugs and Prayers!


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## Miss Beany

I am posting my reply/update that I sent Kymberly in an email too so that others have access to it and can see what we are both going through at this time. No one ever said this process would be easy, but boy did God give some massive battles for individuals like us to fight. Kymberly, I just read your reply - my thoughts are with you and I do think you should be on TPN until things reegulate. You need nutrition. I know I am half tempted to talk to my GI doctor about that if i keep getting nauseous whenever i eat because this is just not working for me. I don't ever want to eat because of the process it takes on my body, how sick i feel, and that i fight with my pelvic region to get anything out or to stop leaking out of me uncontrollably. None of this makes any sense!!!! at any rate, below is my reply to Kymberly's first post on 4/18 today:

Hi Kymberly!!

I still see the ibs blog and our posts so I'm not sure what's going on? Have you checked again lately?

How did your test go on Thursday morning? Did they find anything put yet or have any explanations for what is going on with you? I am so sorry you are going through this all. I know my recovery hasn't been easy or flawless but I can only imagine how I would feel if it was the same if not worse with constipation and getting things out of me as before surgery. Granted I'm having a heck of a time emptying completely, have to keep pressing on my stomach around the belly button around nd left side where there are hard spots I'm guessing full of stool in order to get it to move to my rectum. Now I'm also experiencing a feeling of pressure in my vagina when I strain. It feels like something is bulging in or getting tangled up. I see my GI doctor on friday next week so I guess I'll have to tell him about that and see what his thoughts are. I've Google the symptoms and it comes up as a rectocele or enterocele. Whatever it is is getting worse and interrupting the ability for me to empty. Probably will also ask my physical therapist. So over this. I just want yo be able to live a normal life but I feel like that's never going to happen.

Have you gone to the ER again with any pains? They seriously need to figure out why you're still having pains where you had the ilestomy be it scar tissue or whatever it is. I'm sure it's frustrating for you to not understand what's going on - I know it is for me with my situation but it's definitely not as severe as yours it seems.

I know working for me has been exhausting. My physical therapist said she doesn't even want me lifting anything because of the fact of my pelvic region being such a mess. But unfortunately I need money. The exhaustion I experience after working my shifts never goes away, likely because I have no time to re cooperate with Grad classes and internship. Needless to say I never seem to feel good. I am nauseous after I eat, particularly a real dinner meal which only happens once or twice a week anymore because I can't eat while I'm at the restaurant working because I can't be running to the bathroom ever few minutes nor can I have accidents. So I usually have frozen yogurt when I get hone, whenever it is. My diet is definitely not good - was better initially after this surgery but due to my system abd it's lack of ability to control or regulate itself, I just don't know what else to do.

So I reallu don't feel like I'm doing too well. I'm frustrated and tired of everything. At this point I don't think I'll ever date again. I have accidents most days of the week and have to wear a pad daily. With the pressure and feeling like something is bulging or prolapsing I worry - I've already had 2 surgeries to rectify rectal prolapse. But i realize with straining as much as I do, and literally feeling like I need to suck air into myself to expel anything, I'm guessing some form of prolapse is doomed to happen. With not feeling good after I eat I'm frustrated and tired of taking nausea medicine that makes me drowsy. I need to be able to do my school work, but it's difficult to focus. I as bless almost fall asleep when driving bsck from school since I commute an hour both ways. This is just not a good quality of life for someone who is 28. I'm really starting to feel hopeless.

Let me know how you're doing - I've been thinking of you and praying.

Hugs,
Gina

Wishing everyone warm thoughts this weekend...<3<3


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## annie7

Kymberly--so very sorry to hear all this. and worried. i do hope you can get in the hospital so they can take care of you and get some nourishment (TPN or something) i hope and pray things get better for you.

keeping you in my prayers and sending postive healing thoughts, annie


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## annie7

keeping you in my prayers as well, Gina. so sorry for all you are going through. i do hope and pray things get better for you.

and you've got so much going on right now with your job, grad school, interning etc. all on top of constantly having to deal with your chronic health problems. it's a lot to bear. you are a strong and admirable woman to be handling all this but still...i worry about you.i hope some of your obligations let up soon so you can at least catch a break from all that.

and i really do hope and pray your docs will get to the bottom of your health problems soon!

please do take good care of yourself.

many prayers and healing thoughts, annie


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## ksl2017

I have to agree. I literally am so sick of my GI doctors in Green Bay who have no clue about motility disorders or pelvic floor dysfunction continually telling me I just need to eat and quit stressing about it and my body will heal. Clearly I would have already been over this issue back about a month after surgery in December if that was the case. I WANT to eat, but the pain and complications that come with it and having to worry about getting it out of my body afterwards are just really taking a toll on me. My mother was so angry this morning that she said well we will keep coming back to the ER every time I am in pain then if the staff here cannot understand that I need medical attention and that my case is serious. I will see what happens on Monday this week if I can survive the weekend without having to go to the ER again. It is just unbelievable. My symptoms have really gotten worse with trying to disimpact myself from my motility and pelvic issues. I DO want to fight for my life and I just desperately want a better quality of life than this. As you said Gina, we are YOUNG and our doctors need to find a solution for us to be able to live a somewhat normal life. I pray for that day!


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## ksl2017

Hey girls, I hope both of you had a wonderful Easter weekend with friends and family. I actually ended up working and I enjoyed it because we got to enjoy some buffet leftovers and mimosas for our hard work. I didn't indulge too much considering my medical complications, but it was nice to enjoy my favorite dessert Carrot Cake!

Anyways, I just found out today that the doctors and staff at my hospital and Green Bay performed the wrong test in the radiology department for my GI motility doctors orders from Cleveland Clinic! Absolutely unbelievable. But I'm so happy I have my Aunt who as I have mentioned is a healthcare solutions provider so she knows the ins and outs of dealing with situations like these. Somewhere along the line, whoever read, interpreted, and ordered my test for last Thursday did NOT read it correctly for they made me perform an MRI and as my nurse at Cleveland stated today on the phone that I needed an MR Enterography. Needless to say my mother was quite upset not only for this mistake, but for the fact that we now have to call tomorrow and figure out more scheduling and how long I will have to wait to get the right test done and where I can get it done in Wisconsin because our hospital in Green Bay does not actually do the test. I felt defeated today hearing this news. What makes matters worse is that my staff at Cleveland Clinic has been nothing short of amazing and caring for me, saying they would schedule all my testing in 1-2 days in a row if need be so I don't have to keep traveling and interpretations would be made and a plan of action would occur. BUT their services are out-of-network so my Aunt and my Mom keep saying we cannot just go there and do testing if the tests can be performed in Wisconsin somewhere because of insurance reasons obviously. Its taking me a lot to just remain calm and professional with the doctors in Green Bay who don't seem to take my case and symptoms seriously even.

I apologize for the rant, but I just needed to vent a bit of my frustrations from finding out this news today. Regardless, my Aunt said she will be making sure we are not charged for this expensive mix up and that we work with the hospital to correctly and quickly get me scheduled for the right test. I'll see how this week goes with getting things in order.

How are things with the both of you?!

K


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## annie7

Kymberly--so sorry to hear this. how frustrating!!! and please don't feel you have to apologize for a rant--it's not a rant--you're just telling it like it is. who wouldn't be frustrated at this mistake especially after all you've been through plus you're feeling so ill on top of it all...

thank goodness you have an aunt who is so well versed in and connected to the health care industry to help you and guide you through all this and be your advocate. . at least that makes things a bit easier than if you'd had to do this on your own.

i do understand what you mean about out of network costs. i'm retired and there is absolutely No Way i can afford any out of network costs at all. not a bit. the money just isn't there.

and i understand your frustration with your local doctors. omg--how can they NOT take your problems seriously???? and i really feel for you and your frustration with the out of network costs. cleveland clinic sounds like they are now trying to get on top of things and make it easier for you travel-wise. i wish they would give you some kind of price/cost discount for your extra time and trouble due to their mistake. i wonder if they have some kind of financial plan/discount for those with high insurance fees? again, thank goodness you have your aunt. i wonder if there is some kind of social worker or other type of liaison to help negotiate fees etc.

i know sometimes to raise money to pay for medical expenses people start a "fund me" page online askin for donations. there are many different sites. NG1031 on AGMD inspire has one on gofundme.com:

http://www.gofundme.com/nicolen

i do hope things get all sort out quickly for you. please do keep us posted. i know it's hard but stay strong , don't loose hope. once you get through all this testing you'll finally have a correct diagnosis and then the docs can figure out a treatment plan for you so you'll not only feel better but get better.

sending prayers and positive healing thoughts your way, hugs, annie


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## ksl2017

Thanks Annie!

Your post really made me feel a lot better today after hearing this discouraging news. I truly hope that by this summer things are finally figured out from testing and I can get a quality of life back where I'm able to manage my symptoms and feel better by Fall so I can go back to school and get on with my life! Some may think that dealing with this for a year isn't really that bad, but when you are actually in our shoes going through the struggles each and every single day for over 365 days a year time goes by so slowly. Especially waiting for tests and things. I'm currently working on a report with my Aunt to document the incident and figure out where the orders for the test went wrong because we are definitely NOT going to pay for something that wasn't our mistake.

Thanks for the link about a way to raise donations! That's a neat idea and I'd have to probably get in contact with a friend who is more tech savy with things like this for me haha But my parents and I did discuss holding a benefit for me this summer on our lake within our community once I get all my testing, a proper diagnosis, and treatment for the issues that are going on currently. Can't really hold a fundraiser without the diagnosis though obviously.

Just taking it one day at a time as always. Thanks again for your support!

K


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## Miss Beany

Kymberly I am thankful you were able to work this weekend and didn't find yourself bsck in the ER! I am however so sorry and frustrated for you with your doctor's and running the wrong tests! Enough already! I'm thankful your aunt knows about medical stuff enough to direct you as to how to handle this appropriately. The reality is you need answers so they can get to the bottom of this once and for all and figure out how to bring you much needed relief! Please keep us updated. I will be thinking of you and hoping and praying for the best and a quick turn around with testing and results!

I got some not so great news from my physical therapist this week. I asked her what her prognosis or hope that this pelvic floor physical therapy would help me...and she was honest and said she really didn't know if it would help and that "I'm a very complicated case." I feel even more defeated right now and have literally found myself so tired of pushing myself to do these exercises. I haven't done them in 2 days merely because I'm exhausted by the end of the day and feel like what's it worth to push myself to do an additional 15 minutes of these if it'd not going to help? I know some of this I'd like utter disgust and ultimately stubbornness taking over, in addition to burn out from the end of my semester and end of internship but I am literally so tired of fighting. I cry and then find myself feeling so numb to everything and hopeless with rhis all. Then I wake up the next day, continue to strain or have accidents (none of this makes any sense!) And find myself burying myself in my school work and helping others as it distracts me from the utter reality of my situation. I apologize for my lack of positivity with this all but I literally am zapped of energy and feel like I am losing hope. My physical therapist wants me to talk to my GI doctor at my appointment this week with the symptoms I've been having (feeling a pulling sensation in my bsck or rectum similar to what I felt before my prolapse came bsck this time last year) and now feeling a bulging sensation in my vagina when I strain, which is I'm guessing either a rectocele or my small intestine bulging down there. I don't know what kind of tests would be done to look at this as I'm too afraid to bear down for a doctor ad I'm afraid of having an accident and feel I can't really demonstrate this unless I'm actually trying to have a bowel movement. She also wants me to talk to him about seeing a nutritionist as she feels my diet is awful and in light of my past with eating disorder just wants to be sure I'm getting adequate nutrition.

Again I'm sorry this is a post full of negativity and complaining. I think I'm just exhausted from school, internship, work, and from my condition, whatever it is. Like you kymberly, I just want a life again and not to fight with my body daily to have something so many people take for granted - having a normal poop! I knoe that will never be normal for me since I don't have a colon but this one extreme to the next is foe the birdies. Rant done.

This forum is my saving grace. I literally couldn't wait to finish holding a review session tonight for my students so I could come on here and be with people who understand the battle we deal with every day of our lives. I seriously don't thinj anyone could understand what we deal with unless you take away their ability to poop or poor normally for even a few days. One of my best friends said to me tonight I don't know how you deal with it--she couldn't go to the bathroom for 2 days this weekend and was miserable. She said she couldn't imagine dealing with this day after day indefinitely. Welcome to our world huh?

Love and hugs,
A feeling hopeless Gina


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## annie7

Kymberly--oh i so glad you're feeling a bit better today. and yes i do think your docs will get this all sorted out by the end of summer if not sooner so you can feel better--and BE better--and be able to return to school in the fall and get on with your life. and i would think your docs at the cleveland clinic will now be very very motivated to be much more careful this time after all that terrible mixup and be especially especially motivated to get to the bottom of it all and help you.

oh yes--it is so hard struggling with constipation and all this each and every day --and yes the endless waiting to get in to see the docs, to have the tests, to get the results from the tests etc etc on and on...yes--you're right--take it all one day at a time....

i'm glad you liked the idea of the fund raising website. if you get one up and running, be sure to let us know here and also post it on the board on AGMD like NG 1031 did. it sounded like she got a lot of contributions from people on that board. and even though some of us can't afford to give a lot, every little bit counts and it sure does add up. i think i remember reading she actually reached her goal, too.

and the idea for the community fund raising event is even better! people who know you, people in the neighborhood will be more than happy to help out. a long time ago we had a fundraising bake sale at work --just a bake sale--for someone with leukemia and we made a surprisingly large amount of money. people donated much more than just the cost of the baked goodies because they wanted to help out so much, and the community fundraisers for people with various illnesses that go on in the small town where i live also do quite well..it's a great idea







.

Gina--so sorry you are feeling so defeated with your PT and everything. but please don't give up. i'm a complicated case too they told me since my constipation problems and pelvic floor problems have gone on for so long--50 years--so i have a very long term tight muscle memory to unlearn. and i have other problems as well--slow transit, megarectum , rectal hyposensivity. and yes it is hard to find the time to do the exercises especially with your grueling schedule coupled with the fact that you're exhausted and not in good shape from not eating right, but if you possibly can, please don't give up just yet--really it's early days as far as your therapy is concerned--and please try to find time to do the exercises if at all possible. even if you can't find the time do do all of them, try to do what you can. fit them in whenever you have little snippets of time here and there.

in my case i was told it will take a while to get results since my problems have gone on for so long. i took bio/pt last summer, been doing the exercises ever since and bought a home biofeedback machine in february so i could do more. and --insurance willing--lol--i'll be going back for more bio/pt this summer. not giving up yet!! i have read several accounts from women on AGMD who worked for almost a year with bio/pt and finally got results. i did make some progress last summer and i feel it did help a bit and now with my home machine i'm making a bit more progress. little by little. "anything is better than nothing at all " is my motto--lol...









Gina please do take good care of yourself. you have so much going on--all the pressure and stress of your schedule plus the bowel and migraine and other health problems on top of it all. i do hope you can go to see a registered dietician or nutritionist. being able to eat better will give you more energy. and then you'll feel better mentally as well as physically. believe me--i know... .

keeping both of you in my prayers--always, sending hugs and hope, annie


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## ksl2017

Gina-Its very ironic you mention the back pain and the possibility of the small bowel bulging down in your abdomen on your other organs. I expressed these exact same symptoms with my GI motility doctor at Cleveland Clinic. I actually told her that it really feels like I have dysmotility in the end of my small intestine now similar to feelings of slow transit that I had in my colon. When food gets down to the bottom of my belly I can't get it to travel to my rectum which seemingly is causing a lot of back and pelvic pain from fecal buildup. As for the nutritionist comment you made, it turns out my sister is actually a dietetics major and will be graduating in May with her degree. She has been working with me over the past summer to try to help "cure" me with diet and nutrition, but once she found out more research about my condition she realized that there really wasn't a diet that could fix a motility or pelvic disorder. I still follow the GI soft diet so I don't ever have a major obstruction and I honestly think about foods that will easily work with absorption of miralax. And to tell you the truth I feel like I'm just causing more damage and stretching to my small bowel when I have to use so much miralax just to get things to come out. Its a vicious cycle. I appreciate your honesty about your symptoms. I feel that being honest about things will help others too because they will really be able to get a sense of how we are feeling not just physically, but emotionally as well. It's been difficult to put on a good face for friends and family myself during this period of my life and its increasingly harder to try to work with these symptoms too. When I get home from a day of waitressing I usually just want to crawl under my covers and sleep, but I know I have to eat cuz my body is so deprived. Then the hassle of getting it out comes after that. Sometimes I have to designate a whole afternoon or evening where I know I can be by a bathroom. Scheduling my life around work, nutrition, and my bowels has just been quite the roller coaster. I couldn't even imagine going to school like you are right now taking all this on! When will you be discussing symptoms next with your GI doctor? Are you still considering the interstim? I know that when I talked to my surgeon before my colectomy even she said the interstim was an option, but in her opinion she has seen too many cases where it failed on the colon because eventually the body just rejected it. Now I know this isn't for the colon anymore cuz we both had ours removed. So perhaps its a better option now. I just want to say I admire your efforts of trying to go to school, work, and complete your internship. Like I said, I barely am making it through trying to work and do the laxative regime. When I'm not working, I'm honestly contacting hospitals about my bills and making sure things are taken care of with that so I'm not sent to collections and stuff. Its just all exhausting! It makes me even more sad thinking about things because I just recently finished filling out my yearly scholarship application for pharmacy school, other native american scholarships, and had a friend ask me about my housing plans for pharmacy school in the fall because she wants to room with me. I feel this way because I cannot even give a 100% guarantee answer to my friend that I will return to school in the fall if I don't have this under control. Not to mention the fact that I have a full-ride native american scholarship at school waiting for me upon my return. I worked extremely hard for all of this and I just get upset thinking about how my life could turn from having it all, to a complete 180 with this illness.

Annie-how did you get diagnosed with megarectum? That bring curiosity to me. You are just such a positive and wonderful person, always cheering people up and having faith when things seem hopeless! I cannot imagine going through these symptoms for 50+ years. I'm barely handling it at age 23 going on just over a year of it! Its a bit discouraging seeing all my young friends out living their happy, fun lives exercising, working, going to school, eating, and having fun social lives while I'm in a constant battle with my body and health daily. I think I will give NG 1031 a personal message and ask her how she went about fundraising online.

Thanks for your honesty and support,

K


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## ksl2017

Well here it is ladies via several recommendations from friends and family....check it out! My very own donation website....hopefully this helps my family and I out with some of my financial issues....thanks again Annie for the advice!

http://www.gofundme.com/8la0qg

K


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## annie7

HI Kym---oh you are SO beautiful!!! totally LOVE your gofund me site!!!








i just got to the link--going to start reading it now and yes i will donate today (anonymously) soon as i wake up a bit more--lol... so glad you started it up! another step in the right direction and a very positive hopeful move. my other motto regarding all this bowel angst is "hope springs eternal""---that's always the way i feel--have to---never ever lose hope---youare going to DO this , you're going to get through it and get better and go on to school in the fall!!!

about megarectum- both my anorectal manometries dx'd this. my U of M gastro told me based on my defogram he didn't think it was severe which is good

gotta go read your fundme page now.....take care!


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## annie7

oh wow--it's terrific! it's very very well put together and well thought out. and you already have one donation!! hooray!!!!! how exciting!!!!

love the photos--great photos! they make it all so real to people who might not otherwise truly understand all that you've been through. and you have been through so very much especially for one so young.

sending lots of enthusiastic, hopeful, healing hugs, annie


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## ksl2017

I just received a message from TeamInspire saying the following:

Hello,

We have removed your post. Though we know this is for a good cause fund raising of any kind is against our rules.

Thank you for your understanding, 
TeamInspire

I am very upset  I will have to find a way to get the word out somehow. Any ideas?! I already posted it on my facebook page, my school of pharmacy page, and sent an email to send it around to some of my undergraduate professors to send to UW-Stout. I have started receiving donations already which is fantastic!

Hugs,
K


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## annie7

yes--i noticed earlier this morning that your post had been removed and couldn't believe it! i was stunned. and what i really don't understand is that they still left NG's post--at least one of them from her journal--up and also she has her fund me link posted on her profile page. i wonder if you can post it on your profile page like she did and not get into trouble? not sure...maybe e-mial NG about that? the inspire mgmt don't seem very fair in all this. their censorship seems very hit or miss. they must have missed NG but spotted yours? also someone else this am had posted on the inspire board a link to a different contribution site for her 15 year old daughter--although her link was put in the post and not in the topic title at all. no reference to it in the title of the topic which is something like "need advice for bowel resection". it is still up. not fair--not right! they should be consistent will all this.

yes posting the link on any and all social media you belong to is good and asking friends to "like" it seems good too--and maybe put a link to it on their FB etc sites. . i'm not on FB or any social media so i couldn't "like" it. maybe family and close friends could also post your link on their social media pages. the pharm school website was a good idea too! i'll keep thinking about it all and will post if i get any ideas...

yes so glad you are getting donations already!!!!! hooray!!!!!!!!









hugs back!! annie


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## annie7

maybe e-mail your friends on inspire with a link to your fundme page? explain what happened--that you'd posted it and it got removed and you just wanted to get the word out...

and maybe put all your info etc and link on your profile page here on this board.

how about churches? if you and or family members, friends etc belong to a church, temple etc--maybe see about getting word out about your site to the church membership...getting your link put in the church bulletin especially if there's a section in there for prayers needed etc. maybe the minster would have some ideas.


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## ksl2017

Annie-thanks so much for the ideas! I did put it on my profile page and didn't mention anything about it to prevent from getting in any trouble...shh! haha....but I will have to take your advice and email all my friends on inspire too so they can see it and pass it along! My pharmacy admissions director also said we could actually hold a fundraiser in the fall for me to raise money through friends and community members since he knows i'll be getting more medical bills from hospitals these next coming weeks too! The church idea is also great! How creative and thoughtful you are 

K


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## annie7

oh good--and yes--shhh! about your profile page







. and yes, i'm sure all your inspire friends would like to know too--to be able to help out and just to know about everything. . there have been quite a few posts on there from people who are more than fed up with the censorship on that board...

that's super terrific what your pharmacy admissions director said about the fall fundraiser!!!!! wonderful news!!! and yes do hope your church can help as well. churches are wonderful resources.

you mentioned earlier about a fundraiser in your neighborhood lake community. that's also a great idea. is there a neighborhood association that you could notify regarding your fundme site? does the neighborhood have a newsletter or a community center-type building where you could post your information on a bulletin board?

you've really been working hard to get this all together and up and running! fingers crossed, prayers said that the donations and support come pouring in!

love the collage you added to your fundme site. (they sent me an e-mail update about it







)

hugs!


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## annie7

...just saw your inspire post on your "new diagnosis" topic----brilliant!!!!! that's the way to do it--lol!! you are one smart lady! but we already knew that, didn't we







.

and really--your story on your fundme page is so well written. it's truly inspirational! all you've been through --especially for one so young--all you've accomplished despite your debilitating bowel problems--so inspirational. reading your story would just make people want to help, i should think...


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## ksl2017

haha thanks Annie ...gotta find the loopholes in things as my Aunt has said! She is really helping me tagteam all my insurance providers and such so they do not send me to collections and what not with my bills....I am setting up a payment plan that I can afford and she really has a special way with words and her patient advocate services. I honestly do not know what I would do without her help as I was literally not one bit savy with insurance or medical bills about a couple months ago! She is even trying to get me credit from my school for her basically teaching me "health insurance 101".....what a lucky lady I am!

K


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## annie7

oh yes --gotta find those loopholes!! i do so agree! and you and your aunt are super terrific at that! and oh yes --one does need a special way with words too.

SO glad you have your aunt's wonderful and knowledgeable help with all this mess. insurance stuff truly is a maze. i've fought battles with my insurance company--they're a tightfisted hmo. you have to know all the ins and the outs and then some.

Health Insurance 101 --and 911---lol-- is truly a class we all need to take. sounds like you have your PHD in it.


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## Miss Beany

Hi Everyone!

How are you? Kymberly any new developments or information? Annie - how are you feeling?? Been thinking of you both as always.

The end of semester is upon me and taking over every ounce of free time between that and work, but just trying to hang in there. It's amazing how hard it is to balance everything now with my exhaustion levels getting so high likely because of the huge surgery I had in december. Even though I have these symptoms everyday and the scar that serves as a visible reminder of what I went through in December, it's surreal how I forget just what a big deal that was. I think I have lost sight of that at times and feel like my body should magically be better by now. But that's just an unrealistic hope on my part I think. I apologize for my negativity in my last post - it's easy to get discouraged but remembering why I opted to take the step to have the surgery in the first place and the 2 other surgeries I had last year should be a wakeup call to me to be thankful I'm still here and have a hope at doing better someday...even if right now it doesn't seem that way.

I had some major hiccups on Wednesday of last week - severe aabdominal pain, nausea, dizziness. I called my GI doctor seeking help and he started me on Xifaxin, an antibiotic to reduce bacteria in the small intestine as he felt I probably had too much in there since I don't have the colon anymore which absorbs other bacteria in our system. So I picked that up and slept off the pain, felt a bit better Thursday, then went to my apt with my GI doctor friday. He started me back up on Protonix for the ulcers as a preventitive bexause i still have a lot of upper GI pain and constant nausea. He also has me continuting to take Bentyl whenever i eat to slow my system down and attempt to make less liquidy stools and diarrhea. He also had ne try taking immodium, which i did for work after eating lunch Saturday and Sunday; the bad thing with that is I got entirely backed up and saw I started to retain fluid in my belly and legs again. So I've decided I'm just going to have to deal with having to run to the bathroom at work because I think I'm more uncomfortable being backed up and fluid logged and having abdominal pain from it. Ultimately my GI doc knows I'm discouraged but keeps reassuring me he and I will work on this all and that if I continue to feel the pulling sensation and bulge when I strain, that he wants me to alert my surgeon rather than waiting until PT is done. He also said he wanta to focus on thr control issue and diarrhea right now before we move to treating other issues because he wants to make just a few changes at a time so we know what works and doesn't -- which makes total sense. I also told him that my PT didn't give me much hope that it will help; he said that may very well be the case given the complexity of my situation but that it certainly wouldn't hurt and to keep up with it. So I definitely am trying to keep up with it though I have really been slacking on my exercises in the past week. I probably do about half of them, but hopefully once this semester is done I can really focus on that more. We also talked more about interim and he said that would be only for incontinence treatment but that we would cross that bridge when we have to. It's not something he wants me to move forward with right now because it's still early after surgery, he says. So we will see what happens in the coming weeks between PT and a Lil less of a hectic schedule with my internship being done until September. I have one more week of classes, finishing up with teaching assistant work this week. Have my ear surgery next Friday which will give me a week off from everything. Then summer classes and teaching starts May 19.

I did go to the ER friday evening as I almost collapsed at work. I got very dizzy, my viaion was comoletely distorted and i couldnt focus. My heart rate also was very slow and then wouldvstart racing. It was crazy. When i got to the hospital the only thing that was off was my blood pressure, which was low. Other than that They're not sure if it was a medication reaction or what. I also just went to a local hospital by work that doesn't have any of my files--huge mistake. They just gave me a bunch of fluids and sent me home. I felt crappy all weekend but pushed through as best as I could.

That's a bit of a convoluted update for now. I know I've said this before but thank you for everything. This battle is far from over but I will continue to fight until the end and am so thankful to have listening eyes and support from you.

Kymberly - I read your story on your fund site - I was crying but can completely relate. If I ever get some free time I may think about doing something like that as my medical bills will likely outweigh my worth and school loans for the rest of my life. Thank you for sharing and thank you annie for your suggestions, support and guidance. You are both amazing and I am so thankful to have met you!

Must leave for school -- hugs!
Gina


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## ksl2017

Hello,

Today I am messaging you from Cleveland Clinic! I actually got a last minute appointment with my surgeon and GI motility doctor. They made me do ANOTHER anorectal manometry because they didn't trust Mayo Clinics....and I passed it here. So they do not believe that I have pelvic floor dysfunction as I suspected myself because my issues lie higher up. They also did a flexsigmoidoscopy and my anastamosis and my reversal isn't causing issues. So my surgeon and GI doctor both said they believe I have small bowel dysmotility. They ordered me a small bowel follow through (I've had this done before, but it was back in June and my symptoms have gotten worse after the major surgery even). Also I am having the SmartPill test done at Froedert hospital in Milwaukee. So I am glad this is finally being addressed! My surgeon said that I was a rare case and she has never had a patient seemingly have good small intestine motility before the surgery, but then have complications afterwards. I did hint at what would happen in terms of treatment if I do have this (as we suspect). She said she has patients on TPN....but then there are options if it is localized and not in my entire small intestine. I can only hope for the best. This journey has been so long, but I think it makes me feel better just knowing it will be coming to a close with a diagnosis here soon. I am scared for what the treatment options could be, but I just know I need to get a better quality of life so I can get back to school and work and not be constantly be in pain when I eat.

Gina-I am glad to read your positive posts and also am glad to hear you are getting the proper care. One thing I am thankful for I think is that I don't have complications with my stomach. I too think I have some type of bacterial overgrowth going on so I think I'm going to try to get back on a probiotic. Also I was just diagnosed with a yeast infection currently which has been bothering me lately and I've been dealing with that on top of it all :S........And yes you are right, its only been a little while since our surgeries so giving our bodies time to heal is necessary. Like I said, I think I'd rather be on TPN even so I don't constantly have to be in pain & worrying about using laxatives. I will see where we go from here!

Love and hugs,

Kymberly


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## annie7

Gina--so sorry about all the ER visits and your continuing problems. you have sure been through a lot. i do hope it all gets better for you. and good for you for staying so positive through it all. you are a very strong woman and will get through all this and on to brighter days.

Kym--so glad you got your tests and that now your docs know what it going on. and good luck with your smartpill test. that's good you can have that done in milwaukee. you as well have been through so much. you're such a strong woman staying positive through it all. like i said to Gina, you will get through it and on to brighter days ahead.

keeping both of you in my prayers. sending hugs and positive healing thoughts, annie


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## ksl2017

Hey, just checking back in with you both to see how things are going? I am currently just waiting for insurance to process my order for the SmartPill test. I've been working a lot to keep my mind off things. Still struggling with eating and nutrition, but hopefully I can do my test pretty quickly once its approved.

Thinking of you both,

hugs,

Kym


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## annie7

Hi Kym

hope your smartpill test gets insurance approval real soon if it hasn't already. waiting around for all this insurance stuff sure gets old doesn't it. hope you can tested right away after that and that your test comes out ok--keep us posted, please, when you get the chance.

good for you for hanging in there--it's tough isn't it. hope you can somehow manage to keep your nutrition up.

sending hugs and prayers and positive healing thoughts your way--annie.


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## Miss Beany

Hi Everyone!

I had some trouble logging in last week, though I wonder if it was just brain fart remembering my password after my ear surgery lol. At any rate I am happy o hear they are going to do the smart pill test for you and I do hope your insurance company has approved that by now! How are you feeling kym? Any improvements?

I had to take senna last week because I was incredibly backed up between constantly taking bentyl and then the pain meds from surgery. I couldn't get over how constipated I was again! I was retaining a ton of fluid in my belly, legs and ankles again. My physical therapist had noted the swelling and wanted me to call my GI doctor. He wasn't overly concerned and told me to stay on the bentlyl...i got frustrated and tired of it enough it to stop taking the bentyl (now haven't taken it for over a week) and to take the senna to get relief.

This week has been much better. I feel pretty good other than tired. Still straining to have bowel movements each time I go. And the frequency of going, even with no pain meds or the bentyl has slowed down significantly. I maybe go 1-5+ times a day...which I dunno if that's good or not but we will see when I go to my next apt with my GI doctor first week of june.

PT is going ok, she said I felt much better this week with tightness than I have but is attributing that to me being on medical relieve from work until next week. I also have this week off before summer class starts Monday.

I am considering dating again, even though I am still having accidents 3-6 per week, and not knowing it. I want to date and live a normal life in the worst way but am still terrified. We will see.

Sending you warm and happy thoughts!

Love and hugs,
Gina


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## ksl2017

Awesome news Gina, I hope you do start dating again....I'm STILL waiting on my SmartPill authorization from my insurance....just working like everyday basically waitressing and bartending....still struggling with nutrition...some days I don't eat at all because I'm so busy at work and then I'm just tired when I get home and don't feel like dealing with trying to use meds....my weight isn't taking a hit though oddly...I'm still sitting at 120 lbs...which is good for me atleast since I was down to 100 when I was sick.....give me an update when you get a chance ladies!

Hugs,

Kym


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## ksl2017

Going to do my SmartPill exam tomorrow in Milwaukee at 7:30am....insurance finally approved...i'll keep you posted afterwards


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## annie7

Kym--so glad you finally got approved! good luck tomorrow. i'll be thinking of you. sending hugs and prayers, annie


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## Miss Beany

Kym--

I am so relieved your insurance finally authorized this. Do they have any idea how long it will take to get the results back? I hope they are able to get to the bottom of this all for you asap.

My system has been getting slow, but not near the extent to yours. I can only imagine how you must feel in light of both surgeries you underwent. I'm praying for you.

Let me know how things go.

Hugs
Gina


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## ksl2017

Hey girls,

I just completed the test this weekend and I'll explain how it went.....I swallowed the pill at 8am Wednesday (not allowed to use ANY laxatives...AKA my Miralax cuz that's all I use now cuz nothing else works). I was supposed to eat normal until I passed the pill....well it practically took me 3 days to pass the pill (thankfully it did pass)...but I was really constipated and uncomfortable...feeling pregnant looking just like before my colon surgery....and i did call my GI doctor at CC to inquire what I should do about if it didn't pass as the nurse who gave me the pill to swallow at Froedtert said I should go to the hospital if I was very uncomfortable and it didn't pass in 3 days...well when I called my GI doc she explained that we were doing this test to see transit time and why I'm still feeling constipation issues....normal transit in the stomach is 4 hours and the small intestine is 6 hours....well I believe that this clearly identifies my very slow motility in my intestines as it took me almost 3 days to pass it and that's WITHOUT a colon even.....so I do not believe I have the pelvic floor dysfunction as I passed the anal manometry at CC they made me redo (had 4 of these done now!)....but more the issue resides in the extreme slow motility of my small intestine now too....so I hope to get some results back from my CC doctors once they get the results back from the SmartPill...I'll let you know when I get that feedback. How are you doing Annie? Still doing PT for PFD?...Gina have you gone on some dates?....funny thing I dropped off a bunch of my old supplements I tried to use to cure me when I was sick last year to my good girl friend who has Crohns Disease (never worked because I had the colon issue I realized so absorbing stuff is super hard with the slow motility) and her older brother was there and when I left she texted me saying he thought I was cute & wanted to take me on a date hahaa...that felt good, but I joked back with her and told her....I'm not sure he realizes I have pooping issues lol...I like to make jokes about my issue these days to help me stay sane about it as God knows I've spent way too many nights crying over it and wishing I could eat and go to the bathroom like normal people my age....Gina how are your intestines doing?...I hope they aren't getting slow as mine are :/....looking forward to hearing an update from you both....I have been waitressing and bartending like crazy picking up extra hours to keep myself occupied but I am feeling burnt out lately...I try to be superwoman, but my mom says I need to take it easy because that certainly doesn't help my condition since I'm not getting proper nutrition....Its just hard for me to sit around cuz I've always been a hard worker....and like I said I really want to get back to Pharmacy school in the Fall with a solution to this all!

Hugs and Love,

K


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## annie7

Kym--and Gina

thanks for keeping us posted. been thinking of you --and Gina too --and keeping both of you in my prayers.

Kym, i do hope that the test will tell your docs what is going on and that they'll have a successful treatment plan for you so you can get on with your life! you are so smart and so compassionate--you are going to be a terrific pharmacist!

and yes-- another thing you are is a superwoman--both you and Gina are--but i do worry about both of you trying to do so much and both of you not getting proper nutrition due to all the bowel problems. i know it's hard to rest--i've always been a hard worker too even thought now retired--lol--many days i'm busier than when i was working! but yes you do have to try and rest especially because of the nutrition problem . i worry your health will suffer even more if you run yourselves too hard.. that's what the "burn out" feeling is--your body telling you "i need rest"....sorry-- i know i sound like a mom, don't i...but hey--we worry!

i'm still working with my home biofeedback machine and start up again with my PT from last summer in mid june. if all this doesn't help i'm going to ask about botox. never give up, that's my motto--lol..

keeping you both in my prayers! sending hugs and healing thoughts, annie


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## Miss Beany

Kym--

I am sorry to hear the pill took so long to go through your system. I am sure it was frustrating. I remember that was how I felt the entire week when I went through the 4 day gastric emptying study. I wasn't allowed to take anything for over a week, and that was completely awful. Please let us know when you get your results back. Has your doctor talked about what the next step would be if they find your small intestine to have this slow transit as well?

Annie - I am happy to hear you are doing well and are keeping with the biofeedback and PT for PFD. I am curious, what type of work do you do with the biofeedback? My therapist only has me doing certain squeezes, quick flicks, and puts a band around my knees and has me squeeze. I think she is only doing this to see if there is a change with the readings as we have only done it a total of 3 times since I started PT back in the beginning of March. She usually starts by rubbing my lower back on the right and sometimes left, sometimes does internal work to loosen the muscles, and then has me do a few of my exercises and I leave. She said she does all of these things to put me in the right position, but everytime I go back, I need to be readjusted. It's like whatever she does is undone by the time I get back - essentially talking about that my right side - my hip, internal parts are all crunched up? I dunno. It just seems weird that I always revert back to that...btu I guess if you have been this way for so long, it's hard to undo the pattern.

In terms of me - I go back and forth with this constipation. I had to take a laxative again to get things moving because I was so uncomfortable, bloated, and was only passing little drops and little tiny pieces of stool - definitely not emptying at all. I go to my GI doctor tomorrow,which should be interesting as I haven't taken the Bentyl in probably 3 weeks because i felt like it was just backing me up more. He probably won't be happy with that, but given he suspected slow motility in the first place, i don't think it's a good idea to keep having me take something that slows things down more. Granted I know he was trying to bulk up the stool so it wasn't always diarrhea and hoped that would reduce the number of accidents I had...but i think i would rather deal with that and wearing a pad all the time than this. I am still having accidents - a few a week. Sometimes I know, sometimes I don't, so I always wear a pad. It sucks but it is what it is.

In terms of dating, I haven't been on a date yet...but do have one setup for Wednesday night. I'm nervous, but at the same time, I know I am just going to be open and honest about my situation and what i've been through. He doesn't know any of that yet - I figured it best to save it for a face-to-face discussion so that he can see I am a living, breathing human being who just happens to have encountered one huge obstacle to overcome in her life. I haven't thought about what will happen if things progress from there and he and i hit it off...inside i am definitely worried about that...but i guess because it is a distant thing right now, i am trying not to stress too much.

I can relate to the feeling of utter exhaustion and burn out. And Annie is right - we are both pushing ourselves entirely too hard. We are in the worst possible line of work for having these colon issues. My physical therapist tells me everytime I see her that I really need to find another job because this is going to prevent me from recovering, between exhaustion, lifting, being on my feet all day/night, not eating properly, etc. Unfortunately, I need to make money to survive... and the cycle continues!

Well I must try to finish some reading in the remainder of my TA hours before class starts at 6.

Keep me posted!

Love and hugs!

Gina


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## annie7

Gina--re the biofeedback. is your PT having you work with the biofeedback machine yet? last summer, Pam, my PT started me off with about two or three sessions practicing the exercises--the gentle squeeze and the quick flicks and doing colon ,massage and just talking to me etc --i asked lots of questions. and then we started working with the biofeedback machine. i practiced my exercises every day at home. i really want to work hard at all this because i have so many years--a lifetime really-- of tight muscle memory to unlearn.

an important thing about this type of therapy is that it isn't cookie cutter--it's not the exact same for everyone. the PT's tailor it to fit the patient and her needs.

and then my bio/pt got interrupted by my developing the cecal volvulous, needing emergency surgery, subsequent long hospital stay and even longer recovery period.

i do continue to practice my exercises daily . and i've been working with my home bio machine since mid feb. i'm to start up this summer's bio/pt mid june. i'd like to try the balloon explusion training with Pam. i talked to her on the phone about it in april and she thought we could give it a go.

good luck with everything. please do try to take good care of yourself with your hectic schedule. hugs, annie


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## ksl2017

I agree I know that I am pushing myself too hard and this line of work is probably the most terrible for trying to recover, but true, I have a ton of medical and school bills so I have to work essentially to pay these things off because my parents cannot help support me at all....it is a viscious cycle yes....but I do rest on my days off...I don't go out to much these days....can't remember the last time I've ever even been to a movie because I just work about 4-5 days a week and then rest at home on my days off waiting for medical tests and results. We shipped the device and my journal back to Milwaukee today so I'm guessing they won't really have results and things sent to my docs in CC until next week.....the usual waiting game.....in the meantime I will be working all weekend again. I have a nice 3 day break here and don't work until Thursday again so I'm just going to be filling out more documents and applying for funding assistance through programs. Haven't had a chance to get a lot of my paperwork things filled out. Let us know about your date and how your GI appointment go Gina!

Haha and yes Annie, my mom says the same things about worrying and me getting burnt out....she feels bad about me having to work to afford my bills and things through this condition, but like I said, she supports me and helps me deal with all the medical side of things when she can...we are hoping to get some results and treatment options after the results of this test get to my GI doc and surgeon at CC....my docs haven't said much of anything to me about treatment....they said they needed the test results first.....I'm sure they tend not to reveal potential treatment that may involve more surgery or anything until they have definite results as not to scare patients.

My parents just put in our pontoon boat too for the summer so I can't wait until the weather stays nice and isn't raining so I can relax out there and just read for enjoyment. I am a bit concerned about summer getting here and staying hydrated because even when I drink fluids I get such slow transit and constipation...so I hope to hear back from my doctors soon so I can express these concerns too.

K


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## ksl2017

Hey girls,

So updates: I have a gastric emptying study Monday because my GI doc said the SmartPill showed some results, but it didn't correlate with my last gastric emptying transit study done back in March so they want it done again....thankfully I can do it in Green Bay and it was ordered asap....I usually still eat one meal a day cuz I get so full just from that....and I take about 6 doses of Miralax a day to keep my bowels empty.....its a hassle really cuz of my motility, but I'm just still trying to get by until they recommend treatment when they get this last test (hopefully last one!) done. I have been working a lot lately so I don't eat much and I'm on my feet a lot so I don't use Miralax when I know I have to waitress or bartend because I don't have time to be running to the bathroom. My GI doc said once I get this test done they will be able to recommend a treatment plan. My mom spoke with my doctor when she called our house last Thursday (because I was at work) and my mom expressed how sick I was and that I really needed a better quality of life than this. I haven't committed to going back to school in the Fall yet because I still didn't know if I was going to have another surgery or what was going to happen. I haven't signed a lease in Madison yet because all of this medical stuff is putting it on hold. So my mom expressed that to her and she heard us loud and clear my mother said. So I really hope to have some news next week after we get the test results from Monday sent to Cleveland Clinic ASAP. How have you both been doing? I try to enjoy the summer weather when its nice here. But as I said I work a lot because since I don't eat much, I need to find ways to occupy my time while I wait for tests. Luckily I actually have off this whole week and my Aunt got me free tickets to Country USA (a big country festival of music in Oshkosh, WI). So I will be there Tuesday-Saturday each night enjoying some country music with my friends. I have been looking forward to it because as I said I have been working basically every day for the past few weeks with a day off here and there. Let me know how you both are doing!

K


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## annie7

Kym--thanks so much for the update. i've been thinking about you and wondering how you are doing and what your doctor thought of your smart pill tests results. good luck with your gastric emptying study tomorrow. i'll be thinking of you and praying --and praying that your docs will finally be able to come up with a treatment plan that will help you.

oh yes--you really do need a better quality of life than this!!!! no one should have to struggle with such health problems.

and i do hope and pray it all gets resolved soon so you can go back to school in the fall!

i worry about you working so hard and barely able to eat. so that's another reason why i hope it all gets resolved soon, so you will be able to eat again and regain your strength..

so glad to hear you have next week off and will be able to enjoy it at Country USA! so glad you're finally getting a break from work and a chance to just relax and be with friends.

please do take good care of yourself! hugs and prayers, annie


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## ksl2017

Annie,

Thanks so much. I really do try to keep you both updated as I get results, but we all know how long waiting takes per usual with tests and results. I registered for classes and have scholarships waiting for me so I really do hope that I can get this figured out before school starts otherwise I know it will be a struggle trying to do school and dealing with medical things.

K


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## Miss Beany

Hi girls!

Kym I am so sorry to hear you are still having such difficulty with everything! I had really hoped that by now something would have kicked in and started to work again. Did the smart pill test indicate slow transit constipation or inertia in the small intestine? I hated the gastric emptying study so much when I had that done. I had to be off all laxatives for over a week before it and during the test. I am guessing because you only have the small intestine, you only have to go back for 1 or 2 days at most? I know mine was a 4-day gastric emptying study, but that was because I still had the colon and they needed to see if it was just getting held up in a particular part of my colon, or if it was global...which it was. Please let me know how your study goes and what they plan to do in terms of fixing this situation. I can only imagine how frustrated you are! And I am sure working all of the time and not getting adequate nutrition is not making you feel any better or helping your body...but at the same time, I know it is so much better to bury yourself in work so you don't have time to think about all that is going wrong with your system. (hugs). I really hope and pray they have an answer and soon.

I am also sorry to see you are not sure about going back to school yet until this is all sorted out; however, I think that is probably the best thing to do. It was entirely difficult and exhausting for me when I was battling with this all during grad school, plus work, plus internship, plus being a teaching assistant, and commuting over an hour each way to school/work. Definitely hard to keep a smile on your face in light of this all..I know mine was very practiced, but behind that smile was a scared young lady who felt awful and just wanted to cry. Even now I still have times when I feel like that as my system is still not working all that well. I keep telling myself, things will sort themselves out, but I really don't know if they will ever get better than this.

In terms of me, I had to go to the ER again last Saturday after I had episodes of rectal bleeding, then paired with rectal bleeding and vaginal bleeding. It didn't add up when they both happened. My GI doctor sent me to the hospital, they did bloodwork and pelvic and rectal exams, which confirmed bleeding. My blood count was lower than usual, but not enough to keep me. So they sent me home and told me to follow up with my GI doctor. His solution was to add miralax every day, use the hydrocortisone suppositories, and follow up with my gyn. If the rectal bleeding started up again or got worse, I was to call him immediately. He seemed concerned, but not enough to see me and give me a direct answer of what the heck happened. I asked if it was an internal hemmrhoid, he said probably. So I don't know. As I stressed to doctors and my GI when this came up and they asked if I strain, I said I strain every single day of my life. That's the only way I get things out, between that and pushing down on my stomach, or sucking air into my body. It's crazy. One good thing that has happened over the last few weeks is I haven't been having accidents (knock on wood), which is a huge relief. It is so nice to not have to wear pads or panty liners 24-7 like I was since December.

I am still going to pelvic floor PT, actually just had to have my surgeon renew my prescription for it. My PT therapist was not happy about the rectal and vaginal bleeding and said my GI doctor should have done a scope or something to figure out what it is then and there - that my case is too complicated to just let it go. I think I have a gyn appointment next month, so figured I would just wait until then to discuss it with her and see what is going on there too. This isn't the first time it has happened. I guess all of those areas int he pelvic region are fairly connected thouugh so it could be anything.

Please keep me posted with everything! I am off this week from class, and then have another 5 week summer class starting on July 1. I'll have about a month off before I start up with classes and internship again...definitely looking forward to some down time!

Love and hugs!

Gina


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## Miss Beany

Ps - I almost forgot to tell you both! I am doing my first 5K to support colon cancer and colon disease. I ended up making my own team, the "Never Give Up" team, since so many of my friends and coworkers seemed interested in doing this with me. I was never much of a runner, but I am trying to train for this. The Colon Cancer Alliance has also asked me to work with outreach and registration the morning of the event since I told them my story when I called asking about how to start a team. So I have to somehow find time to work with this all, but all the same, I am really excited for it all. I am going to post the link below just so you can see the story and what it is all about. I am sure they have events all over the US too!

http://support.ccalliance.org/site/TR/5K/UndyNEW?team_id=37861&pg=team&fr_id=2020


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## annie7

Hi Gina

thanks for the update. so sorry about the ER visit and the bleeding. that must have been scary. i do hope that hasn't started up again. and i agree with your PT--i wish the doc had scoped you right then and there . yes--your case is very complicated! and i know from being a complicated case myself--lol--that it's best to get things figured out right away whenever possible.

good to hear you had this week off-you've been working at such a tremendous pace. hopefully you've been able to get a bit of rest although i'm sure you're still busy. i'm the same way when it comes to feeling miserable and ill and staying very busy to help keep my mind off it. it helps and getting things done despite the pain helps me feel better mentally if not physically.

that's great you're doing your first 5K! congratulations! and what a wonderful cause to support! love the name of your team--Never Give Up--that's always been my motto! i'm going to check out your link.

take good care--sending hugs and prayers your way, annie


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## ksl2017

Gina-sorry to hear about your complications as well







....things just seem to get more complicated for us even though we've had these major surgeries...I hope they take things more seriously with the bleeding because that really is a major concern....I checked out your link and its great! Such a good cause....you really are inspirational (I couldn't imagine partaking in any time of long walking or running event in my condition right now since I barely have energy to do simple daily tasks).....I hope to do something like this too when I get better!

I had a conference call with my doctor, my mom, and Aunt Monica today. My GI doctor basically said they were collaborating on my test results right now and my surgeon has been out of office for a while, but she is returning next week and they will be getting in contact again too. They want to know if it is a stomach AND small bowel motility issue or just one or the other.....before they provide treatment options. My recent SmartPill and gastric emptying study showed delayed stomach emptying (which explains feeling full easily and some chest pains I get if I don't chew my food really good or when I'm full from eating earlier in the day. Also explains why I'm probably not absorbing mostly anything I eat if there is slow transit in my small intestine coupled with delayed stomach emptying). They will be letting me know next week if I need to come back to Ohio for further testing (or if anything can be done in Green Bay) and for collaborative treatment to be provided (this is a breath of fresh air knowing there is collaboration on my case). She said I was a rare case certainly. (Can't be too rare if I have heard/read/researched stories about this condition though. So on a positive note I'm not like THE only person on the planet that has ever had this although it often feels like that right now at my age). Just some small updates for now. And on a lighter note too she expressed concern that I was so young and that they wanted to see me get better and be able to provide treatment options for me. So I look forward to hearing back from them next week. As always, I try to keep you all updated when I know things. Thanks for your support! I am really starting to appreciate being a patient with care providers at Cleveland Clinic. They seem to be providing me with more options than Mayo Clinc who basically just said it was PFD. I read another story on the Inspire board about a girl who was getting a multivisceral transplant of the stomach, intestines, and pancreas from Cleveland Clinic and she is sounded thrilled with her treatment thus far at CC too. I really love their approach to collaboration among professionals and specialists because that is exactly what complicated patient cases need!

Also on a side note, I am going to see Florida Georgia Line and Carrie Underwood this weekend at a Country USA festival in Oshkosh! Even though I am tired, I muster up the energy to go out for a bit and listen to some music with my friends because it helps take my mind off the malnutrition and digestive issues as you know. Also my sister (AKA my best friend) is coming to visit so I cannot wait to spend time with her. I'll keep you posted and do the same for me with your ongoing conditions!

Take Care,
K


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## Miss Beany

Hi ladies!

I hope you both had an enjoyable weekend! I worked the majority of mine and am tired, but enjoyed the beautiful weather at least. Kym, how was the concert? So happy to hear you were able to go and enjoy some time with friends and at a concert that sounds like it would be so much fun! I know how nice it is to have distractions away from the every day hustle and bustle of working with the public in serving/bartending...plus battling with your condition. It is definitely disheartening at times and it is always nice to have pick-me-ups along the way.

I hope you will be getting some answers and a plan of action soon that hopefully does not involve more surgery. Please keep us posted!

Thank you both for your support with my 5k run! Some days it is so difficult to run, like today, so I am just taking it easy. My body is telling me it does not feel up to running unfortunately.

My second session summer class starts tomorrow...cannot believe it. I am hoping to get through this class without any hospital visits, though i think i have been to the ER once every month since my surgery...hoping July is non-eventful!

Hugs to you both!

Gina


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## ksl2017

Hey girls,

Country USA was very fun and distracting....a good reason for me to get out of the house and do my hair and makeup (often days I don't feel like doing that when I'm ill). But my sister came home too and went with me so that was even better. The both of us house sat at my Aunts while she was up north. We had a relaxing time.

Recent news from my GI doctor and team at Cleveland Clinic: after collaborating with other officials they have diagnosed me with functional dypepsia in the rest of my GI tract (so stomach and small intestine)....which is why everything seems to work really really slow and I have severe motility issues with nerve damage.....my GI doctor finally addressed the fact that it was most likely caused by the severe viral infection I suffered last March 2013 when all of this began (which I already believed was the cause of all these digestive disorders).....anyways, I am supposed to be starting a new medication that works on the nerves and muscles and we have to "try" this out first as a conventional method. I know that is the protocol for things these days. However, I am also having a consult/meeting with an intestinal transplant surgeon at CC sometime this month (his secretary will be calling me next week to set up an appointment). Kind of scary, but I told my doctor if this medication doesn't work, I would really like to discuss TPN or what the next option would be with her because my main focus is being able to have some way to sustain my energy while I'm in school if I return in the fall. She said their main goal is to get me better. Its just been a long road I'm sure the both of you know.

I had a great, relaxing weekend with my family for the 4th of July. We just watching fireworks on our lake, took our boats out pontooning, and I actually went swimming for the first time since my 2 surgeries. So those were all positive things 

How were your holiday weekends?

Hugs,

K


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## annie7

HI Kym

thanks for the update. glad you had a good time at Country USA and a relaxing holiday weekend.

your docs at CC sound very competent, caring and thorough. so sorry about your dx . at least they've figured it out now and can go on to getting you better. fingers crossed the new meds work for you.

yes it's been such a long road for you.you are very brave and strong--you are a fighter . it's good you have such great docs to help you through it all. you are in good hands and they will get you through this, one way or another so you will get better, be able to move on with your life, and be able to continue your education and get your PharmD.

. sending lots of hugs and prayers and positive healing thoughts, annie


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## ksl2017

Annie-thanks so much for the kind words....always appreciate them! The transplant staff has already been emailing me asking for release of medical records and such and said I should expect a call from one of the nurses this week to set up a consult.

K


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## ksl2017

Hey girls,

Just emailing to see how July is going for you?.....Got a call from my nurse coordinator saying the surgeon is looking over my files this weekend....so fingers crossed i'll get a call this coming week.....thinking of you two and how you are doing.......Send an update please!

Hugs,

K


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## Miss Beany

Hey ladies!

I somehow must have missed the last set of replies! I was wondering how things were going for you Kym! I'm glad they are taking this all seriously and I hope they have a quick solution to this all. I'm sure you just want to feel good and move past this awful period in your life. I know you're strong and will get through this, but all the same I know it must also be heart wrenching having gone through all you have to this point. Please let us know what the surgeon says!

I've been doing ok, but am now mixing Miralax in my drinks every day again. I'm straining a ton, feel backed up a lot, and have trouble going. I've been having accidents again sporadically which makes no sense because I had a good month in there. My PT is almost done. She said my contractions are still off and I have different resting tones each time. I had to call my surgeons office again for another prescription to continue the PT - been going since march. I also made an apt with him for the 2nd week of august to touch base. Though I honestly don't know if I should or shouldn't go...i really don't know what he can do. I don't think j there's any treatment for constant straining. Any advice?

I have been seeing someone for a bit now and I have to admit it's not super comfortable getting intimate. I'm constantly worried about having an accident and it also can hurt. I dunno if this is from all the trauma to my system or the pelvic floor dysfunction. But figured I'd put this out there as I know this was something I always worried about and still do.

I have an apt with my gyn this week as a suggestion from my GI doctor as a way to figure out why I have both rectal and vaginal abnormal bleeding occur simultaneously when it's not that time of the month. I also know pelvic ultrasounds from April and May and even last year indicated I have a ton of follicles on my ovaries...she thought I had a condition called PCOS though I don't fit criteria at all. Will keep you posted.

1 more week of class then I have my summer break finally for a month before class and internship starts up again.

Hope you are both doing well

Hugs and love!
Gina


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## annie7

Kym--thanks for the update. so glad you have such an excellent medical team taking care of you. yes, you are a strong brave woman--a fighter ( both of you are!!







) and you will get through this and be able to get on with your life. thanks for keeping us posted.

Gina--about straining and how to help with all that. have you tried baclofen rectal (and vaginal) suppositories? i've read posts both on this board and on another board (and also from googling) from people who say they really do help. baclofen is a muscle relaxer. these suppositories relax those tight pelvic floor muscles muscles and help people have a bm without straining. baclofen supps are a compounded med--glycerin and baclofen. and there are other combinations available as well--baclofen and valium for example..

if you want to try them, ask your gastro doc or surgeon-- whichever doc dx'd you with pfd--to prescribe them. not sure but maybe your pfd PT could also prescribe them???

sounds like some docs haven't heard of them. if you doc is one of these it might help to do an internet search so you can provide him/her with some info. here is a link for a compounding pharm that makes them:

http://www.mcguffpharmacy.com/CompoundedProducts/CompoundedSuppositories.aspx

and there's other info online as well about them.

often people find that when you're sitting on the toilet, elevating your feet on a footstool or whatever--squatty potty etc--helps so they don't have to strain. i use a shoebox. it straightens out the anorectal angle and allows a more complete evacuation. i imagine your PT has already mentioned this?

have you worked at all with balloon expulsion training as part of your biofeedback? that can help with teaching you how to evacuate without straining. i'm supposed to start that up next week. ask your PT about it if she hasn't already tried that with you.

i bought a home biofeedback machine (not cheap but well worth it) and have found that working with it daily does help me a bit with the relaxing--keeping the numbers down. this is where i got it:

http://www.lifematters.com/u_control.asp

both of you-wishing you all the best of luck with everything and keeping you both in my prayers.....hugs!!


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## ksl2017

Hey girls,

Thanks for the update! Good news, I officially got a call from Cleveland Clinic today from the intestinal rehab/transplant center nurse coordinator from the doctor whom I will be seeing. I am meeting Dr. Kareem next Thursday August 8th! Thankfully I don't have to wait forever for the appointment after he looked over all my files.

Gina, I hope they figure out your bleeding issues. That is definitely not normal. I stopped having my menstrual cycle last March 2013 cuz I lost so much weight and was sick, but it still hasn't come back even since I haven't been able to eat normal. I hope the doctors have some answers for you!

Annie, thanks so much for your support as always. Your kind words and willingness to always research and help find solutions to our problems when doctors arent very helpful is truly a blessing.

Hugs,

K


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## annie7

Kym--oh so happy for you that you don't have to wait too long for your appointment--that's wonderful news! you've had to wait so very long as it is for everything...

keeping you in my prayers and especially on aug 8 th! sending hugs and prayers and positive healing thoughts, annie


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## Miss Beany

Hi Ladies!

Kym - good luck tomorrow! Please let me know how it goes!

Annie - thank you so much for all of the ideas and resources, as usual! You are truly amazing! I have been using hydrocortisone rectal suppositories off and on, especially when i have a ton of rectal pain or sensitivity. I will definitely ask my surgeon on Wednesday about the other ones. My physical therapist really doesn't do a whole lot with the biofeedback, just basically uses it to get a measurement of how i am doing with incontinence. I saw her this past Tuesday and she felt I was doing much better in that area; however, she said it is still a huge issue that i strain all the time, and that is something my doctors need to work on with me.

I did see the gyn last Wednesday...and that was a totally disheartening appointment. I have only seen her once before as I had to switch doctors after my original gyn lost her practice. They did an internal ultrasound, which didn't show much except that my bowel was right on top of my ovaries. Don't know if that matters or not. She then addressed the issue of rectal and vaginal bleeding simultaneously, and said she should really take a biopsy of my uterian wall...but that i'm too much of a high risk and shouldn't undergo anymore surgery. She also said that i look healthy and am beautiful so i should just forget about it, and that i wouldn't want to go through it. I also told her about the pressure I have in my rectum and vaginal when i strain, and she said again that i should just let it go unless i am feeling really sick because i won't like the treatment, and saying again i'm too high risk. She told me i was welcome to get a second opinion by one of her colleagues, but that i should just let it go... While I would love to ignore this all and move on with my life, i fear developing the prolapse again, not to mention, this was not supposed to happen after my colectomy. I called my GI doctor to let him know what she said and he was appalled and said he felt like she just didn't want to deal with me. He strongly urged me to get a 2nd opinion and said I could wait and talk to my surgeon about it at my appointment, but that he thinks it's important to get to the bottom of it because i am such a complicated case. So I am going to talk to my surgeon about this all on Wednesday and see what he suggests and if he has any recommendations for who to go to. I also told my PT therapist and she said the same thing as my GI doctor and that hopefully my surgeon will have some suggestion to make with doctors he knows and who are specialized in this type of surgery... Realistically, I don't know what the issue is or what treatment might entail. I'm trying not to think of it right now, but do want this to be resolved. I just don't know if it is anything that can be fixed.

Hope you are all doing well! Cannot believe it is already August!

Love and hugs

Gina


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## ksl2017

Girls,

(Gina I sent this message to your inbox too as I have your personal email, but i will post it too as I have sent this email to a ton of friends and family who have been following my medical journey.)

Friends and family,

Wow, so recently, Thursday August 7th, I traveled back to Cleveland Clinic and finally met with Dr. Kareem (my new intestinal rehabilitation/transplant surgeon). He is truly amazing and has a wonderful bedside manner to start off with!

After going over all my symptoms with him, my several GI tests, xrays, ER visits, etc. He did not hesitate to see that I was basically right with saying that my digestive tract has lost ability to transit food and fluids....I was officially diagnosed with "generalized intestinal dysmotility." It was amazing just to hear him finally say it and to get the diagnosis as I have been dealing with this for about 1.5 years now with previous doctors telling me it was all in my head or that I had an eating disorder and so just eat more.....Dr. Kareem understood entirely how I was feeling and said it wasn't his "first rodeo" with patients who have had this chronic intestinal pseudo obstruction symptoms and dysmotility.....to make a long story short, he understood that the symptoms were consuming any quality of life I have had and hope to have in the future.

Now for my plan of action: I will be trying 2 motility medications for 2 weeks to see if they make any drastic changes for me.....and if not, I will have the option of having the rest of my small intestines removed to relieve my body from the constant pain of blockages, constipation, pain, laxative abuse, malnutrition, etc.....in which they will then begin TPN nutrition.

He said that this is the process for my condition.....I have to attempt TPN nutrition and have complications with TPN before they consider me for an intestinal transplant.....it does suck that this is the process, but I know its for the best if I hope to have a better quality of life in the future. He actually said, quote "we will take care of you....you are in the right hospital now so do not worry".....I literally started crying right after he said that! I have never had a doctor take me seriously and really see me as a suffering individual although I may look okay on the outside, my insides are always suffering and he totally understood me.....that was an amazing feeling. He also said to my parents (who were with me in the room) that if this had happened to his daughter, he would recommend this exact treatment and plan of action.

I am very happy with the trip and the future plan. I know its going to be a journey from here on out, but atleast I know that I have an official diagnosis now and plan of care. That is the best feeling ever. He also said that there isn't any reason I still cannot pursue my goals of becoming a Pharmacist and that I should live my life to the fullest since I've had to put things on hold for so long. He said TPN will give me relief from the struggles right now and allow me to sustain nutrition for as long as it can. I just emailed my Pharmacy program director about all of this too (he has been so understanding of my medical condition and also so supportive and I know the school will work with me to help me pursue my goals....heck I'm sure the college would like to do a segment on me too with the program since my condition is so rare and the university is always up for any research that leads to cutting edge technology such as stem cell research for motility disorders).

I am not afraid of the future and I know I have to stay strong and brave for what will come. Quality of life is so important and its an amazing feeling to finally have a doctor who acknowledges this!

I look forward to hearing back from you and just wanted to update anyone who I have ever contacted and kept in touch with about my medical journey!

P.S. my friends mother said she would be contacting her contact with the Dr. Oz show and nagging them until they get back to her so she can see about getting the story about intestinal transplants and different rare disorders to have a segment on the show! Wouldn't that be great? All good things to look forward to 

My family and i just got home from Cleveland (12 hour vehicle travel!) but I wanted to email everyone right away because I was so anxious to let you all know the news. I will be sleeping in tomorrow because i am exhausted....talk to you all soon!

Hugs,
Kymberly


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## ksl2017

Gina,

I would highly recommend you seek a second opinion! As I have learned, you cannot give up hope when one doctor closes the door on you and tells you to simply live with the condition.....if it is affecting your quality of life, then it matters! I believe everyone deserves a quality of life....and especially you because you are so young still! I feel blessed to have found my care team at Cleveland Clinic and as I said, it took me a while to finally get doctors to believe in my symptoms and my condition, but it was all worth the battle to finally have an official diagnosis and treatment plan. I wish you the best of luck and I'll be keeping in touch with my new treatments to come!

Annie, bless you for all your support, kindness, words of wisdom, etc.....where would I be if it weren't for all your recommendations and simply just your company and having someone to talk to!...that goes for both of you! I really have enjoyed our blog as a comforting place to seek advice, vent, gain recommendations from, etc. It really has meant a lot to me and has helped me emotionally to deal with my condition. I look forward to our continued future contact.

Hugs!!

K


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## annie7

Kym---i am so very glad you have such a truly compassionate, knowledgeable and caring surgeon as Dr Kareem! honestly, there were tears in my eyes when i read your post. Finally you have a doc and a team of medical professionals who truly understand, care and have a sound treatment plan for you! really--you have been through so very much--such a long long road---especially for one who is so young. you are so brave, strong, intelligent and truly a fighter--never giving up. you are an inspiration...

and fingers crossed the motility meds will work but it is so good to know that if they don't, there is a backup plan for you and your surgeon will not let you down. and yes--like he said--you will be able to get your life back and achieve all your goals --what a relief it must be to hear this!! you've had to put your life on hold for so long--now you finally have a plan of action and can get on with things!

thanks so much for the update and for keeping us all informed. and that's so exciting about Dr Oz and also your university....

Gina--omg--so sorry for all your continued problems and for the totally uncaring and dismissive way your gyn treated you---telling you just to forget about it!!! i think not!. how would she like to have to struggle with all your problems on a continual daily basis.

and her saying you "look healthy and beautiful"---and i'm sure that's true BUT as a doctor she of all people should know that what looks good on the outside does NOT mean it feels good on the inside---really! doesn't she know that when we're sick like this we make a real effort to LOOK good---despite how wretched we feel. oh i could go an and on about that one--lol...when people tell me "well, you don't LOOK sick" i just smile, look them in the eyes and say " thanks. i work hard at that".

yes, do get a 2nd opinion like your PT, surgeon and Kym said! and hopefully you can find a much better gyn too--one who cares, understands and is proactive.

BTW--how is it going with the 5K you were planning to do? i think it is so wonderful you are doing this. a while ago i mentioned you and your 5K on a thread on the general discussion board when someone ask about walkatons etc for IBS and digestive problems. it's so impressive what you are doing to help:

http://www.ibsgroup.org/forums/topic/183978-does-anyone-host-walkathons-to-raise-money/

both of you are such brave, courageous, intelligent and inspirational young women! you have both been through so very much yet you never give up. keeping both of you in my prayers and sending lots of hugs and positive healing thoughts your way







annie xx


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## Miss Beany

Hi Everyone!

I just wanted to take a few minutes and give everyone an update since it has been some time since my last post. Kymberly and I have been in touch, so she definitely knows more of what has been going on.

I saw my surgeon back in August and he said he wanted to do another flex sigmoidscopy to take a look inside and make sure internally I was okay, since I still have the rectal and vaginal bleeding sporadically. He also said he wanted to inject hemrrhoids if he found them when inside. I initially scheduled that to do in the office...then started thinking more about it and how uncomfortable I have been and how uncomfortable I was before when I had it done. I called the office back and asked if it was possible to do this all when I was not awake or aware...and he immediately said he would do it under general anesthesia without an issue. So that is being done this week on Thursday, September 18 at Bryn Mawr Hospital. Hopefully that will shed some light on what has been going on.

Additionally, he referred me to a gyn specialist that he is particularly buddy-buddy with. I saw her the last week of August. She listened to my symptoms and wanted to try switching me off the birth control pill and onto a patch as a way of seeing if perhaps my body just isn't absorbing the pill w/o my having a colon. I start the patch in 2 days. We will see what happens then throughout this month and the next; if the bleeding persists, then we will go from there. Also upon examination and telling her of my rectal symptoms and pressure and pain in teh rectum and vagina when I strain to go to the bathroom, she found a rectocele. She said I am high risk to treat this and while she does treat these surgically, she feels I am best to go to a urogynecologist surgeon as I will likely need mesh to fix this in a way that reduces the likelihood of recurrence. She offered me a referral and I go to him next Tuesday, August 23.

Initially I felt pretty defeated after hearing about the rectocele and began to feel like "will this ever end"? Then I remembered my pledge to NEVER GIVE UP and that I would get through this too if another surgery was necessary. I don't like what I am reading about the surgical approaches with this, particularly that they can go through the vagina for repair...but i am sure that is something i can talk to my surgeon about when I meet with him. For all I know he might refuse to treat me or say it's not a big deal, even though I would rather have this fixed now before it gets any worse. What are others thoughts on this?

I have had good and bad days, but more recently over the last few weeks have developed some stabbing sharp pain in my upper right abdomen. I saw my GI doctor this past week and told him about it, and he is sending me for an upper abdominal ultrasound tomorrow...can't eat or drink anything at all after midnight. He suspects I may have gall stones or an inflamed gallbladder...but we will see. It has been happening on and off for a few weeks, can go from lasting a few minutes to hours to days. I notice it happening more after eating or eating bad stuff (as rare as I do). I also vaguely remember an ER doctor mentioning I would need to keep an eye on my gall bladder 5 years ago when I had kidney stones...who knows. I know Kym has been through it and definitely knows how it feels.

Finally, this past weekend I did my 5k for the UNDY in Philadelphia for the Colon Cancer Alliance. I had gotten a call from the directors last week asking me to be their survivor speaker...so I did the opening speech before the race began on Saturday. I ended up finishing in 33:04 and placed 2nd in female survivors. It was such an amazing and emotional day...I encourage anyone who suffers from colon disease or cancer to get involved in something like this - you are surrounded by people who have been down the road and know what you are going through...who are there to support you and show you that you are not alone. I am going to attempt to try to add the video of my speech to this post, but if not, will work on getting a link to it as I really feel it may be helpful for others to hear.

As always, the road ahead may be tough, but we are strong and we will survive and get through these challenges.

Love and hugs,

Gina


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## Miss Beany

Here is the link to my facebook profile for my survivor speech presented in Philadelphia at the UNDY 5k Run/Walk on Saturday, September 13, 2014:




__ https://www.facebook.com/video.php?v=761738722845


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## annie7

Gina--so sorry for all your problems. it is hard, isn't it, when we keep having pain and more pain and the docs keep finding more and more problems-- more surgeries...so sorry.. it's very hard---quite a challenge...we just take it one day at a time and like we always say here on this thread never ever ever give up.

i stopped thinking "will this ever end" quite a long time ago...makes things easier that way.

we're strong and we're fighters and we do go on and live our lives as best we can despite it all.

i have a rectocele. it's medium size and my c/r surgeon said it didn't need surgery. it really doesn't bother me. i keep my stools loose with all the laxatives i take so maybe that's why i don't have trouble with it...don't know.

do all the research you can on rectoceles and surgery and talk to your surgeon. you could even get a second opinion if you want. it's good to be able to make an informed decision.

thanks for the link to your speech, what a very moving and amazing speech! you are truly and inspiration!

wishing you all the best on everything. and keeping you in my prayers and sending lots of positive healing thoughts your way, annie


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## ksl2017

Sorry I haven't responded in a while, I kind of forgot about this blog when I started my full time classes! Gina and I are on a texting basis these days now with updates and advice and news about our conditions. I know that's really been helpful for me 

Annie-I do want to say too when you mention your rectocele and that your c/r surgeon says its medium and not necessary for surgery you may want to seek a different opinion because Gina did mention to me that she was recently told that hers was "minor and surgery was uneccessary" only to find out later that it was definitely more than just a minor problem and could highly be contributing to her issues.

We both discussed the importance of a better quality of life. I found physicians who are willing to offer me a better quality of life and although some of the options may seem radical to some physicians who are not familiar with it or have very much knowledge of it, that doesn't mean its not a good option. Sometimes you just have to keep searching for that one doctor who is going to get to the bottom of the case and be an advocate for your quality of life.

So to update, I am going back to Cleveland October 3 to discuss moving forward with plans for my generalized intestinal dysmotility diagnosis, asking questions, signing a surgery contract, and scheduling the surgery for mid or late October. I'll be getting the majority of the rest of my small bowel removed, having some retained with a jejunostomy, and supplemental TPN. This is to improve the quality of my life and to not have to take horrendous amounts of laxatives to clean my bowels. If I were much older, I probably wouldn't consider the surgery & I would just accept my state, but I'm only 23 and I cannot foresee myself being able to manage this for the rest of my life when I already struggle as it is right now. I barely have energy to leave my house most days and not being able to get out and exercise and be in class, etc. has really been taking a toll on me these past 2 years. I know in my heart this is the best decision as I trust my care team immensely and I'm willing to take this chance for a better quality of life. Somewhere down the road I'll likely have to have a transplant as my surgeon said TPN isn't a life-long solution, but nothing major right now.

Hope all is well!

K


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## annie7

Kym--thanks for the update.

sounds like your team of docs have put together a good treatment plan for you. you are in good hands, with a
terrific team of docs to help you through it all.

you are very brave and strong--you are a fighter. and with this surgery , as you say, you'll be able to move on to a better quality of life.

and quality of life is so important no matter how young--or how old--we are. that's why--regardless of age--we all keep fighting.

wishing you all the best and sending lots of hugs and prayers and positive healing thoughts, annie


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## Miss Beany

Hi Everyone!

Once again I know it's been some time since my last reply, but I'm doing my best to keep myself together with my almost full time internship, 10 hour weekly commute, class, work, and still struggling with and fighting with my body each day.

I did meet with the urogynecologist surgeon at Riddle hospital back on September 23. He was a complete and pompous ass hole who had the gall to say to me that I do not meet HIS textbook definition of someone who could have possibly had rectal prolapse for 10 years yet at all and that all imaging and defocograms were misinterpreted, that I probably never had colonic inertia that multiple tests suggested and showed, and that again I couldn't possibly have a rectocele because I did not have children or meet HIS textbook definition that he wrote. He told me "your doctors obviously didn't know what they were talking about. You probably didn't need any of your surgeries." What an ass. I was forewarned by my gyn and surgeon that this guy was full of himself and pompous; but I decodes it was worth a shot. Total waste of my time except to find out I wouldn't trust a word out of his mouth. My surgeon referred me to another urogynecologist put of the University of Pennsylvania that I met with October 1 and meet again with next month. My surgeon alap referred me to another colorectal-surgery specialist out of the university of penn who specializes in PFD. Unfortunately, given I already had a colorectal-surgery doctor from upenn, they would not let me schedule with a different doctor. The urogynecologist at upenn could not really treat me or determine my rectocele significance when I saw her because I could not strain d/t pain from just getting out of the hospital. My old upenn surgeon also confirmed the rectocele but said he was unable to treat me as he didn't specialize in this.

In terms of my gallbladder ultrasound--my gallbladder was packed full of stones with a slight thickened wall. I schedules surgery to remove it for October 14...on September 27, I was admitted to the hospital for extreme pain and nausea. Another ultrasound showed my gallbladder wall had significantly thickened and was showing early signs of infection. So I had emergency surgery on September 29. I was in the hospital for 5 days for this whole thing. My bladder shut down and I was pretty sick. Glad it's over now, but it definitely wasn't fun!

At this point, I'm back to my usual straining, only it's getting worse. My GI doctor started me back on linzess 290mg to see if that would help ease the straining. It has not. I take it as prescribed, used to have a feeling of urgency shortly after I took it - now nothing. I am having increasing trouble evacuating or evacuating completely. It's like my rectum blocks stuff from exiting. (The next stuff will sound graphic but I need advice). I spend hours in the bathroom during the course of a day. I know I have to go to the bathroom because my stomach is swollen and I feel ungodly uncomfortable, so I strain or push on my stomach and abdomen and start the process. Somewhat formed hard stool or food particle comes out. Then it's like everything inside of me goes into knots. I'll suck air into my vagina, trying to expel something, and liquid will come out of my rectum and anus. If I push on my stomach during this, a food particle or something solid may come out. If I continue to suck in as much air as possible, liquid will leak out, as if it was caught in a bubble and I penetrated it. Some solid or food particle may also come. If I suck air in and quickly expel, sometimes another blob of liquid or hard stool or particle may come out (very small piece). By the end of this, I'm exhausted, heart pounding, and still do not feel empty. I'll go away from the bathroom, only to run back in minutes to half hour later. At the very end of the day, usually over 12 hours or more after I take linzess, I'll have a hard stool come out of me that I need to strain to get out.

I notified Mt GI doctor of this all last week, in addition to feeling as of my prolapse is coming back or is back already. Multiple times I have felt something small protrude from my rectum, usually when there is blood and mucus upon wiping. I also have a heavy and pulling feeling every time I go. I literally feel something drop down out of my vvagina and have in fact felt it with my own hand - tissue, a bulge -aka I'm guessing my rectocele. I have vaginal and rectal discomfort all of the time. I'm exhausted and tired of this all and at the end of my rope. This is what my PT said would likely happen and that unfortunately PT wouldn't solve because it's been going on for years. My diet is already whag they consider ideal. I'm already on the linzess paired with miralax, just like I was BEFORE I had my colon removed. While things move more freely and I don't have a ton of waste backed up, this process can't be good, normal, and likely will only make my condition worse. This is no way to live. If I could stay inside everyday and crawl up in a ball on the floor...I would.

Any advice you may have about how to get it across to my new urogynecologist and surgeon that I need the prolapse repaired if it's back (be it internal or mucosal) and that regardless of the rectocele size, it is causing blockage and obstructed defecation. I'm pretty devastated and embarrassEd and feeling like there is no hope and that this is what I will always have to do...which makes me never want to date or be around anyone.

I'm sorry for being not so positive avout this all, but I'm tired. Kym and Anni I know you understand. ..Always appreciate your feedback.

How are you Anni? Kym and I talk daily but I do wonder about you! Kym and I say it often, we will meet some day. It's amazing how sharing common struggles and finding people who REALLY get it is one of the best forms of medicine you can give someone.

Love and hugs always, 
Gina


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