# colonic inertia



## 16710 (Apr 11, 2005)

Hello,I'm new here but have been lurking for a little while. I have had constipation for the past 8 years and each year it has gotten a little worse. I finally went to the Dr's a year and a half ago, had a colonoscopy and he put me on zelnorm, kristolose and senna. That worked for a while but last week he referred me to a colo-rectal surgeon who diagnosed me with colonic inertia. I had the musicale tesk done today and he said I need surgery to remove most of my colon. I have the x-ray on Wed. for the SITZ MARKER to see where the rings areâ€¦..â€™m just really frustrated I feel like heâ€™s rushing surgery â€¦.I never tried Miramax, in fact I never heard of it until I came hereâ€¦Iâ€™m just afraid that heâ€™s rushing into this. I know heâ€™s a very good doctor but this is big surgery to me and Iâ€™ve heard for some it doesnâ€™t really work. Has anyone had this surgery? What were your results? How are you NOW? Is there anything else I can try? Please give me any feed back you canâ€¦I go to see him again in 2 days and Iâ€™m terrified. Thanks


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## Kathleen M. (Nov 16, 1999)

Miralax works similar to the kristolose.I think we have had a few surgeries, but I don't recall the overall outcome ratio's but when nothing will move through the colon one way of doing it is taking a bunch of it out.With any surgery that isn't an emergancy, and removes things I think it is always reasonable to get a second opinion. Feeling rushed at least means you probably need a sit down with this doctor and do a good talking over things with. The what makes you a good candidate, what time frame is reasonable to wait, stuff like that.I think it does in some cases get to where there isn't much hope, but this is major surgery and you should ask a lot of questions and be fairly sure of what you are getting into (like what % get how much better, what the complication rate is, stuff like that)K.


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## SpAsMaN* (May 11, 2002)

You should go to :www.constipation.netWe all hate our bowel.What is the musical test?


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## 15827 (Apr 29, 2005)

Hello,This May 5th will be the one year anniversary of my surgery. I had colectomy w/ ileo-rectal anastomosis. I am so happy with the results. wish that my doctor moved along faster. But I went through a year of massive drugs, tests, hospital stays, hemeroids, and so on and so forth. I am very happy with the results. I had always been constipated but I suddenly with down real fast...pain, distention, 1 BM per month with the use of laxatives, nausea, weight gain...The only thing is that I don't like the scar but it does come in handy when I start becoming ungrateful for things that I have. At least now I do have my health. Sorry I was going off topic. Anyways if you have any questions let me know. By the way they said that the hesitation was because of two things. One was that the balloon test showed weak muscles but another test (I forgot the name but you go on a table and poop in a box thing...wow I forgot how horrible those days were) showed that my muscles were fine. The other was my age when I first got sick I was 23 and they said they are cautious when it comes to removing things on young people. Don't get me wrong I had one of the worst cases of colonic inertia and also one of the worst recoveries that I have seen in anyone, well even worst than what my own doctor had seen. But would I change anything...only to have had the surgery sooner. I am so much happier...anyways.Good Luck... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~I have lived to thank God that all my prayers have not been answered.~ Jean Ingelow


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## SpAsMaN* (May 11, 2002)

Read this:http://www.constipation.net/forums/viewtopic.php?p=367#367


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## 16138 (Jun 4, 2005)

Hello! I had surgery for colonic inertia in September of 2004 and my life is 10000000 times better now! My problems started at age 17. I remember lying in bed and feeling horribly nauseated. My stomach was as hard as a rock and it hurt to even breathe. I could not eat and began vomiting up green liquid (which I later learned was stomach bile). My mom could not figure out what was wrong with me. After a few hours we realized that it was because I had not gone to the bathroom in over a month. We called my pediatrician who immediately ordered me to take a laxative. Well that did not work. It took nearly 20 dulcolax to make me begin to pass some stool. I spent the night in the bathroom vomiting and crying and having horrible diarrhea.At first we thought this was a one time thing, but we were wrong. Soon after, I stopped going to the bathroom altogether. I would go 2-3 weeks without a BM, at which point I would have to resort to taking laxatives...a LOT of laxatives. My doc prescribed mineral oil, more fiber, more water, metamucil etc. NOTHING worked. Finally I was sent to a GI specialist who prescribed prescription laxatives (miralax and lactulose) which also did not work. She did a flexible sigmoidoscopy when I was 19 and it showed no gross abnormalities inside my colon. She told me there was nothing more she could do and I was back to square one. By this time I was 19 and in college. My life was hell. It is so hard to explain to friends what is wrong when you don't even know yourself! Plus, college dorm rooms are not ideal places to have bathroom issues! Finally my doctor sent me to a WONDERFUL GI at Beth Israel Deaconness Hospital in Boston. After 3 years of tests she finally diagnosed me with colonic inertia. We tried a gazillion different therapies and none worked. I was on Zelnorm way before it even hit the mass market. She finally decided that I need surgery to remove my entire large intestine and sent me to a colo-rectal surgeon at Brigham and Women's Hospital in Boston. Both my GI and surgeon explained that since colonic inertia is not very well understood at all there are very few studies about the disease and few treatment options. They wanted to run MORE tests to make sure that surgery was the correct thing to do. Finally in July of 2004 I was done with tests and the surgeon sat me and my parents down and told me that yes, I would need to have my entire large bowel removed to get any kind of relief from this disease. I remember crying because I knew what a difficult surgery this would be, but I knew in my heart it was the right thing to do. At this point in time I was taking 60 correctol once a week in order to have a BM. I had to take a leave of absence from work for 6 weeks. My work was incredibly supportive and I took a short term disability leave. I had the surgery on September 29th, 2004 at Brigham and Women's Hospital in Boston. I spent 6 days in the hospital on an epidural and a morphine drip and was sent home in early October. The first few weeks were rough: It was hard to walk, sit up and even breathe or laugh. But, in the end it was worth it! I now have 3-5 BMs every day and I have my life back! I get teary when I think back about all that I went through but it makes me so thankful to be where I am taoday! No more vomiting, no more laxatives, no more drinking gallons of pedialyte because of severe dehydration! I am now a happy, healthy 25 year old who is working full-time and going back to school nights to get her MBA. In short, I am SO SO SO SO SO glad I had the surgery. I look back at the way my life was and I can't believe I suffered for as long as I did.Best of luck to you if you do wind up having the surgery. It has been a godsend for me.-Maura


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## 16629 (Jun 7, 2005)

I have been diagnosed with colonic inertia after many, many visits to the Dr. It is a very embarrassing subject to say the least. I have 1 BM per month. I am so tired of feeling bloated and fat all the time! My options that I was given for this problem is to take meds (that do not work) for the rest of my life or have part of my intestines removed! Neither of the options really appeal to me...... but I need relief!!!! I do have a question... does anyone know how to get rid of flatulence? I swear not being able to do # 2 makes me have the worst gas imaginable. I try to stay away from gas inducing foods & I also take phazyme capsules & zelnorm but they obviously aren't working. I am sooooooo sooooooo frustrated with this problem. I feel like a goodyear blimp!!!!!!!!!!!!!!


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## 16138 (Jun 4, 2005)

Mandabell - Have you considered the surgery? It was frightening to me too but my life is 100% better now that I can go to the bathroom like a normal person! As for the gas - I have awful gas now aftr the surgery as well (had it before too) anbd phazyme/gas ex do nothing for me either


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## 16629 (Jun 7, 2005)

Mobee- Thanks for your reply. Yes I have thought about the surgery... but i am kinda partial to my insides & dont want to get rid of them!! BUT, I know it may come down to it. My doctor told me you are kinda invalid afterwards b/c you have to go to the bathroom soooo much. At this point there is no easy cure i will do whatever is necessary to be rid of this problem. I am miserable with the constipation & gas. What about the scar? and do you have to go to the bathroom a million times a day now?


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## 16138 (Jun 4, 2005)

Hi there. The scar IS big. But it is thin and fades to a white line after a year or two (mine is still pink right now). My scar runs from just above my pubic area to a little bit above my navel (7 inches long). Once it fades to white I will be able to wear a bikini again! YAY! And nope, I don't go to the bathroom a million times a day. Right after surgery I did go a lot, but then it evened out. Now I go anywhere from once to 4-5 times per day. But it is never an emergency where I HAVE to get to the bathroom ASAP or I'll mess myself. Nothing like that. But, everyone is different! Studies show that people with inertia who have the surgery - 80% are satisfied with the results. Definately something to think about, but exhaust all options first! For me, I just couldn't go on living like I did. I never went to the bathroom. I had to take 60 correctol and would spend the night in the bathroom vomiting and having so much diarrhea that I would become dehydrated and pass out. Then I had to get up and go to work like that! I couldn't go out with friends, travel or live the way a 24 year old should live, I felt like I was 80! I'm so glad I had the surgery. I was ready to have a bag if they told me that was the only option. I figured ANYTHING was better than the way I was living. But, IT IS a huge operation. I definately reccomend getting many opinions and trying every available therapy first. I suffered for 7 years before I had the surgery. We tried everything - even abortion drugs that increase contractions in the uterus and can sometimes increase contractions in teh colon as well. NOTHING worked. So surgery was my only option.I hope you get some relief too!


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## 16629 (Jun 7, 2005)

Sounds like we got alot in common! I have been suffering from this since birth (when i was a baby my mom would actually have to squirt baby oil in my butt and dig my poop out or i would lay there and scream!) I still feel like screaming sometimes... Isn't it awful just to want so badly to do what every "normal" person does almost daily? It sucks! I am 24 years old now and I dont want to grow into an old constipated woman!!! lol. Hearing your story has really helped me. I am going for yet another "test" next Monday. I just want it to be over, I am ready to do whatever is necessary. Thank you so much for sharing your story with me. It has helped me realize that I am not alone. I have felt like a freak at times being able to take laxatives, stool softners, fiber supplements, maalox, prescriptions, etc... and still not be able to ####!!!! I am definately more open minded about the surgery now. Thanks again!!


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## 16629 (Jun 7, 2005)

One more thing, how was your recovery? Could you feel a difference in your stomach? & did you lose any weight? I could sit and research on the internet about this all day but actually hearing from a person who has had the surgery helps me understand alot better!!! : )


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## atrain (Jun 22, 2001)

I was under the assumption that if you have your colon taken out you have to have a bag for the rest of your life. How does this surgery work so that this is not the case? Thank You


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## Kathleen M. (Nov 16, 1999)

Depends on what is wrong with the colon when they take it out.Usually as long as there is healthy tissue they can attach the end of the small intestine to a pouch they make out of what remains. this is inside your body and exits out the anus like usual.For colonic inertia they don't have to worry about diseased tissue and just remove a big chunk and attach what remains back to the rectum without having to reconstruct a rectum. In inflamatory bowel disease the rectum is often in really bad shape from the disease and there may not be enough healthy tissue to make an internal pouch so they have to do a bag on the outside.K.


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## 16138 (Jun 4, 2005)

Mandabell - my recovery was not fun but it was not awful either. I was home for 2 months from work. In the hospital for 7 days. After about 2 weeks the pain got better and I was able to go out and do some of the things I normally did. Yes - I lost about 20 pounds. I put it all back on within 6 months though! You can email me if you want and we can chat about howmuch colonic inertia sucks!!! lolmobee211###hotmail.com


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## 16522 (Apr 6, 2005)

I suddenly got something call pelvic floor dysfunction which had urological symptoms. I saw a special physical therapist for this and I was much better. Then I started developing bowel symptoms and was told I had IBS. I went to a nutritionist who put me on a doet and supplements, walked and drank water like crazy. I was much better for awhile and then everything started to get worse. I was told I was a bad candidate by two out of three New York colo-rectal surgeons because I have other G.I. issues. I have reflux and I also have abdominal pain. The Zelnorm works for me and so does mineral oil, but when I first started the Zelnorm I seemed better, not perfect, but more functionable. I should state that over the last year my symptoms of abdominal pain have changed and I also have rectal pain. This is something I don't see anybody talking about. When I first started the Zelnorm I was either going all day long or not going or just a little bit. Sometimes when I went too much, by the end of the day I had pain. I was also told by these doctors that you have less success with the surgery if you have other g.i. issues like I do(gerd,ibs, and the pelvic floor dysfunction.) and the surgery helps the constipation but doesn't necessarily help the pain. Recently in the last two weeks, my pain has gotten much worse and I'm notm sure if it could be the Zelnorm. Another problem is eating. I seem to start gettin the pain at the same time every day now, in the late afternoon or early evening, and so it's not from eating. But, once I get the pain, eating makes it worse, so I don't eat and now I'm starting to lose a lot of weight again. I haven't seen anyone post anything about inability to eat due to pain. I would love to hear somebody else's experiences with eating. The pain doctor gave me vicodin which I was rarely taking and only if necessary because it is constipating. But recently, I have been taking it more often and it doesn't seem to help which I don't understand since I wasn't taking it that often. I haven't taken it for the last few days. I have tried to bear it out.I have found enteric peppermint oil capsules help but sometimes aggravate gerd. I should also mention that I went to an alternative dr. and he some stool tests which showed I had clostridium in my stool and a lack of friendly bacteria specifically bifidiobacterium(spelling). He put me on probitoics and wanted to give me some herbal ingredient called berberine. He though I had SIBO especially since the pain got worse at the end of the day when the bad bacteria are most active. I was afraid to go on the Berberine and called my medical dr. who put me on Flagyl. The Flagyl kind of makes me feel nauseated and dizzy, but the doctor said to try to stick it out. I'm also taking probitoics which I read on one site that it can cause gas in the begining.I can't decide if I should stop the Zelnorm because I read it can make abdominal pain worse. It was better in the beginning. Does it build up a blood level. I should also mention that a new medication called Amitiza was approved at the end of January for chronic idiopathic constipation. I called the drug company but finding a dr. who will prescribe a new medicine that has just come out is very difficult and I'm sure it's very expensive. Right now my colonic inertis must not be so bad since stool definitely gets to my rectum but doesn't all come out at one time. I apologize for such a long post and thanks to anyone who read it. Any suggestions or helpful information would be appreciated. I feel like I'm going to die from starvation.


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## jodys (Apr 8, 2002)

Hi everyone, Just a few questions here since I am scheduled to have this surgery on Monday. Roberta, I also have reflux, but it is controlled by Nexium. Can you tell me why your Dr. said that the surgery wouldnt be as successful if you have reflux? Mobee, thanks for your info, needless to say, I have never been more scared in all my life wondering if I'm doing the right thing or if I should just keep on taking all kinds of laxatives every day???? I have been reading on the internet and maybe I shouldnt do that, but do you know if after you have this surgery if you always get small bowel obstructions and have to go in for treatment? I feel like im really chickening out and could use some advice. Thanks


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## 17176 (Mar 31, 2005)

Hello and welcome Amanda & Roberta


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## 16522 (Apr 6, 2005)

To Jodys,I was told that if you have reflux that you often have slow motility of your whole digestive tract. Have you ever had an esophageal motility test or an upper G.I. and small bowel series? I thought I had every test but never had these. I am going to be having the upper G.I. and small bowel series to see if there is any inertia or slowness in this area because if there is I would definitely not want to have the surgery. I also get bad abdominal pain from the IBS as I've been told, but it seems no matter what I eat or what diet i follow I still get pain. Is pain an issue for you? I was very disappointed because the Zelnorm worked and then after about 8 weeka, my pain got really bad so I had to start and can't find a doctor who will prescribe Amitiza because they say it's too new. I do move my bowels and pass gas but they are usually small bowel movements and after I feel like I'm filling up with gas and that is when I get bad pain. I was also told that the surgery doesn't always help with the pain, but helps more with constipation. I did see on a coupld of websites that one of the side effects of this surgery is abdominal pain and I'm just too afraid to get such a big surgery and still be in pain and then maybe have a problem with my upper G.I. tract. I don't want to scare you. Maybe I'm making a big mistake and the surgery would actually help me. Has anyone had bad abdominal before the suregery and how was it afterwards. Good luck to you. I feel for you.


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## jodys (Apr 8, 2002)

OMG Roberta, Thats really frightening. So if you have reflux you shouldnt have this surgery?? Mine is controlled by Nexium and I do elevate the head of my bed, but mine is more what they call LPR. I didnt really know i had reflux until I started to get a sore throat and was kind of loosing my voice. Did you have the transit study done? When I did that mine flew through the small intestine, but stayed in the colon. Anyone??


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## 16522 (Apr 6, 2005)

Jodys, What is LPR? I take protonix and it's strange but when the IBS gets bad and I have a lot of pain to which I think is trapped gas, my reflux gets worse, but I don't have to elevate the head of my bed and the relux doesn't keep me up at night.Can they really check the small intestine transit time through the marker test? Noone mentioned that to me and the stupud doctors are now just talking abouit me getting an upper G.I. and duodenal stuides. I saw a few different doctors in NYC and they basically told me pretty much the same thing except for one. What day did they check your markers for the first time, since every goes through your small intestine very quickly. I made a big mistake and one of the doctors in the city who said I was a poor candidate for the surgery recommend and ileostomy, but leave the colon in. He said without the feces running through the colon, I would feel much better and have a better quality of life. Well, I stil had pain and still had difficulty with eating. The ileostomy ws a nightmare to take care. The doctor that did the reversal said that even though there was co stool passing through the colon, the colon still had peristalsis and produced waste products and bacteria which since I wasn't using my rectum gave me great discomfort and the feeling of having an extreme urgee to pass stool or gas and of course i couldn't because of the ileostomy. It also effected my urological symptoms from my pelvic floor dysfunction. I always had burning and pain in the area which you need to urinate. After the reversal, the urological symptoms went away, but I still have the rectal pain and I thought I was doing better with the Zelnorm, but then it just get too intense and I was having a lot of unbearable spasms. I bumped into a G.I. doctor today who said that this is very common. He said I could try small doses for a week or two and then stop. Everytime, I have a bowel movement on my own, I get horrible gas pains afterards which lasts for hours. I lost 20 pounds oriinally, gined some back and now I'm losing weight again because of the pain.Your situation may be much different then mine.Mine is complicated because of the colonic inerta, the IS, and the pelvic floor dysfunction. Are you suffering much and loosing weight? Are we allowed to post doctor's names on this board? Did you get more then one opinion? wish you well and perhaps if you are so nervous and unsure, then maybe you cn postpone it for awile. There are people who are very happy with the aurgery and others who have had problems. It's very confusing, because I don't even trust all the thingss the doctor's say.I'm wishing you the very best of luck no matter what decision you make.


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## 2btrue (Jul 22, 2003)

Mobee,It sounds like you are one of the lucky one's. I had the surgery and have been in agony since and still have problems with constipation. I also have a lot of acid bile - do you have this problem? Would you mind if I e-mail you or you can e-mail me at for2day###aol.com


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