# Long post but desperately seeking advice



## biswh (Apr 14, 2019)

hi all,

I'm not even sure if anyone will read/comment but I feel like I need to get this all out and to be honest I feel so lost on a daily basis that any advice would be helpful.

I'm a 20 yo female. As a kid, I think my stomach/digestion was pretty normal, but the last few years it seems to have changed. I was constipated a lot (in terms of straining on the toilet, clogging the toilet, etc) but went to the bathroom pretty regularly, multiple times a day. *At the time, I did not know that this was constipation. It was normal for me.* During my periods I'd have diarrhea and cramps. I knew that burgers and lattes made my skin break out and stuff, but I never really thought about it.

In December of last year, I lost my period and started getting horrific gas/bloating. In early January, I had a period of intense diarrhea and stomach cramping. Mid January, I went a week without shitting and then put out a massive log that clogged my toilet. Since then, I've been battling constipation to no end, but here's the thing: stool doesn't even reach my rectum. everything is sitting just below my belly button and in my sigmoid.

Late January, PCP suggested miralax, etc. She also suggested prunes, which I ate, and more fiber, which I did ( I tried psyllium husk, and lord help me the gas pains felt like pop rocks. Then, I just worried about food fiber, still didn't help me go.) However, I also began to develop a lot of anxiety about food and the bathroom. If I didn't go, I wouldn't eat. My coffee addiction, which was already pretty strong, became worse. I definitely freaked my gut out a lot.

February was the same. In march I had a streak where I was having semi-regular bowel movements, but then I messed it up when I ate a bunch of fried food at a japanese place-- mucus shits, then diarrhea, then back to constipation. This is the last time I can remember a poop that was not induced by medication or manual stimulation. After this incident I started low fodmaps, which seemed to help with the bloating some. However, throughout this whole period I've been losing weight, because I started restricting so much. By mid March, I was having three tiny, snack-sized meals a day. (Yes I know this was not healthy.) I have dropped over 25 pounds in 5 months and I want to cry when I think about this. I have no appetite. Over the last month or so I have adopted an eating schedule schedule: four meals a day, three to four hours apart. Nothing I eat gives me joy, and it seems like the more foods I cut out of my diet to help my gut heal, the worse everything gets.

As time has gone on, I think my gut has gotten more broken. I know that I am partially to blame for this, through the restricting and such. I started having excess mucus in my stools, more left-sided abdominal pain, etc. Earlier in May, I had a colonoscopy that came back clean and honestly I've felt even worse ever since. Even the prep was miserable. More bloating, more mucus. For the last month or so, the only way I've been able to have a bowel movement is by taking a significant amount of osmotic laxatives, performing incredibly intense abdominal massage, and then sticking a finger up my butt to relax my muscles and help the stool get out. (I also had to do this same process when I was prepping for my colonoscopy.) I tried linzess back in March/April (290mcg) and it didn't really help, unfortunately. It is a combination of gas from the osmotics and the stool being liquidy that lets it out right now, but I know that I am not evacuating completely. I do this process twice a day, because I am eating more now and I get incredibly bloated throughout the day as I cannot pass gas. I am pretty sure this is PFD of some kind. However, if I did not do this process, I don't think I would be able to mentally or physically cope with putting food in my body.

I have an endoscopy scheduled for June, and a meeting with a pelvic floor therapist in July as well as a followup for my endoscopy. I also want to get a sitz study done, because idk even what would happen if I stopped taking miralax or other osmotics. I know I need to explain all this to my drs, especially the GI but it's incredibly difficult to get an appointment and I also do not feel very supported by them. My PCP knows, but can't really do much for me-- she put in a referral to a university GI, but obviously it will take time to get an appointment with them as well.

​

Things I know about my body:

\- carbs increase my bloating, particularly rice, pasta, and potatoes. even low FODMAP carbs. I think I may have sibo? generally, the bloating wouldn't be so bad but I cannot pass gas at all throughout the day and my abdomen gets very hard and swollen. but carbs are also a very good source of calories, which I need right now. I also find it hard to build meals around the low FODMAP serving sizes that have enough calories.

\- dairy seems to be a no-go. I was doing lactose free milk but even cut that out, have cheese like once every two weeks.

\- I can feel fatty meals stay in my stomach longer, but I also know that I benefit from the added calories of fat.

\- low carb helps with bloating, but = I need to eat more in volume, which I think may also be an issue for me

I don't really know what my "safe" foods are. I know that if I eat something that isn't low fodmap tho, like a donut, I get increased bloating and pain. I've been avoiding anything that I don't know the ingredients for. What I am doing right now:

\- low fodmap, eating carbs for the calories. trying to deal with the bloating.

\- eating things (sometimes) that I know might irritate my colon so that I can measure my transit time and also to reassure myself that i'm not too backed up. (it takes about 12 hours for things to reach my sigmoid area. I do not know why it will not move to the rectum after that point.)

\- i take digestive enzymes and betaine hcl with meals, because I bought them and why not.

\- i take a multivitamin every day

\- i get exercise everyday in the form of bike riding and walking

\- i try to focus on my schoolwork and friendships as much as possible

\- i flip between taking a melatonin and 5 HTP supplement to help me sleep at night. (it kind of works.)

​

tests I've had done include thyroid workup, IBD blood tests, celiac test, blood tests for vitamin levels, blood stool test, fat absorption stool test, and enzyme tests. all of these came up normal. (also, I'm not pregnant, but still not having a period. I started a hormonal birth control for estrogen but also forget to take it some days so I don't think I'm getting the benefit of it.)

I also don't know what the point of this post is. But summer is coming up and without the distraction of college I feel like this is going to consume my time even more than it already does and I need advice or reassurance or *something*. I don't know if it's worth staying low FODMAP on veggies/fruits if some of them (like strawberries) give me intense abdominal pain when they get to the end of my digestive tract. I think paleo (no grains) or keto might help with bloating and irritation/mucus, but then how do I get my calories in? I also still don't know why I cannot go to the bathroom without this process of osmotics and abdominal massage.

​

I'm crying as I type all this out. I just feel incredibly lost and I'll be honest, most days I do not feel like living. Food, which used to be a source of joy and fun for me, has become something incredibly anxiety inducing and if I could never eat again, I would. I am seeing a therapist but it only helps so much. This community has helped me a lot in the past and I guess I really just need support and ideas. If you even made it to the end of this, thanks for reading.


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## annie7 (Aug 16, 2002)

hi

so sorry for all your problems. living with chronic constipation is miserable.

that's good that your PCP put in a referral for you to see a university gastro doc. university gastro docs are generally more knowlegeable, up-to-date and proactive about treating chronic constipation than other gastro docs. you can ask to be put on a cancellation list and hopefully that way you'll be able to get in to see that doctor sooner.

yes, it does sound like you have pelvic floor dysfunction and yes, possibly slow transit constipation constipation as well. it would be useful for you to have some tests done. a defecography will dx pfd as will an anal manometry and yes, the sitz marker will dx slow transit consttipation. i had all those tests and was dx'd with slow transit (colonic inertia) , pfd and some other problems as well. physical therapy and biofeedback can help with pfd. that's good you are seeing a pelvic floor PT in july.

and yes, it does sound like you could also have SIBO. the breath test can dx that.

about fiber--fiber can help with constipation if the cause of constipation is a lack of fiber to begin with. a lot of us here have found that fiber is not our friend. if your colon is already moving slowly, dumping more fiber in there only slows it down all the more and makes C worse. i found i did much better with a diet lower in fiber.

have you tried any of the other C meds out there besides linzess? there is amitiza, trulance and motegrity (prucalopriode). motegrity works differently than the other meds, which basically add fluid to the colon. motegrity is a prokenetic and helps push stool out. your PCP can give you scripts for these so you can try them out.

also--have you tried taking stimulant laxatives? they can be helpful. since none of the C meds available at the time worked for me, my gastro docs told me to take whatever i need to go, so for me that was stimulant laxatives--senna or ducolax. i found that these worked even better when i took them with osmotics (if you take ducolax and milk of magnesia, be sure and take these at least an hour apart or you'll get cramping.) a lot of C people here on the board have found that Dr Schultz intestinal formula #1 is a really helpful laxative.

re your diet: you might want to work with a nutritionist on this. they can really be helpful.

you might want to take a look at this thread. it has a lot of tips for dealing with chronic C:

https://www.ibsgroup.org/forums/topic/152106-the-great-list-of-remedies/

good luck with everything. i do hope you can find some relief. take care.


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## biswh (Apr 14, 2019)

annie7 said:


> hi
> 
> so sorry for all your problems. living with chronic constipation is miserable.
> 
> ...


Hi annie,

thanks for your reply. I have not tried amitiza or trulance or motegrity. I thought that linzess was stronger than amitiza? that's part of the reason why I haven't tried that one in particular. regarding motegrity I am not sure if I can get it prescribed w/o diagnostic testing, which is in the works but also (as I'm sure you've experienced) can take quite a long time to get sorted out.

I have used stimulant laxatives - senna, dulcolax - on occasion but I think 20 is a bit young to take them on the regular. I am also very afraid of developing a dependency (either mental or physical) on them. I know the research is mixed on whether this is really an issue or not, but I don't want to just start taking them regularly on my own because I do fear that my current GI would see it as a weight loss/eating disorder thing. Does that make sense?

diet wise I am reaching out to a nutritionist/dietician  so we shall see how that goes. what did your diet look like on the day to day? Part of my trouble is that I want to eat healthy and have fruits/veggies, it gave me lots of joy to eat those things in the past.

I know I have tests coming up, which is good, but I guess in the meantime I just feel very isolated and alone...I can no longer go out to eat with friends without worrying about my stomach and I feel that I spend most of the day in the bathroom. I also know that I've developed a lot of worry around how "backed up" I am at any given time (which is why I will sometimes eat food that I know will go through my tract undigested). I made a rule for myself that I have to eat, even if I don't have a BM, to avoid losing more weight. But when I have an unsatisfactory "session" in the bathroom it definitely ups my anxiety about it.


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## flossy (Dec 8, 2012)

Hi biswh -

Sorry to hear about all your digestive woes. Read this post whenever you have the time, it should answer a lot of questions (click on below link to read):

http://www.ibsgroup.org/forums/topic/325690-the-abcs-of-chronic-constipation-aka-ibs-c/

Good luck & keep us posted!


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## annie7 (Aug 16, 2002)

i've read a lot about motegrity and i have not read or heard anything that says you cannot get motegrity prescribed without diagnostic testing. you can ask your PCP to prescribe it to you. hopefully it will work for you.

that's good that your are seeing a nutritionist/dietician. he/she can help you work out a diet plan that works for you. good luck!

i've always eaten a regular, healthy diet. i eat fruit and vegetables, meat, dairy etc. i have GERD and interstitial cystitis so i can't eat acidic foods--that's my only limitation. i just don't load up on a lot of fiber. and yes, you're right--you do have to eat, even if you don't have a bm. you don't want to lose weight plus if nothing is going in, nothing comes out.

hopefully talking to your counselor about your anxiety and worry helps--maybe he/she will have some useful, supportive suggestions for you.


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## biswh (Apr 14, 2019)

annie7 said:


> i've read a lot about motegrity and i have not read or heard anything that says you cannot get motegrity prescribed without diagnostic testing. you can ask your PCP to prescribe it to you. hopefully it will work for you.
> 
> that's good that your are seeing a nutritionist/dietician. he/she can help you work out a diet plan that works for you. good luck!
> 
> ...


I might ask my PCP about motegrity, but I guess I also want to get the sitz study and such done as well before trying it to see what my body is up to. I know through looking at my stool and seeing what comes out the other end I know that my general transit time is around 12 hours, but everything comes to a standstill right at my belly button. (unless I go through the described process.)

all my appointments are essentially in July (I've asked to be put on the cancellation list for my current GI, but I'm not expecting for anything to open up.) I guess in the meantime I'm looking to minimize my symptoms and I'm looking for advice re: if my "routine". I know that people's definition of "regular" might only mean once a day or once every other day, but I don't think I could cope mentally or physically without what I'm doing right now (especially now that I'm eating more.)

Do you have any suggestions for decreasing bloating?

Also, is it normal to completely lose your appetite with CC? that's definitely one of the more upsetting things for me.


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## annie7 (Aug 16, 2002)

sorry i don't have any suggestions for the bloating other than get tested for SIBO. hopefully others here on the board can answer that question.

yes, it's normal to lose your appetite if you're backed up and constipated. i permanently lost my appetite years ago for some reason. i never get hungry. i just force myself to eat--you get used to it after a while. i am already too skinny and can't afford to lose any more weight. i also supplement my diet with boost .


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## biswh (Apr 14, 2019)

thanks annie, I will look into getting tested for sibo. right now, I'm dealing with bloat and such from carbs just to get calories in. I don't over eat, but it sure feels like I do when I look down at my stomach.

I know that this is a heavy question, but I struggle a lot with worrying about how backed up I am at any given point, particularly because I suffer from incomplete evacuation despite taking the osmotics :/ and I guess I'm just looking for advice about whether or not it's worth worrying about?


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## annie7 (Aug 16, 2002)

i know it's hard but please try not to worry so much about being backed up. worrying doesn't help. it just makes things seem even worse than they really are and it also tenses up your muscles--including your pelvic floor muscles. tight pelvic floor muscles make it even harder to go.

try to focus on the positive--you have an appointment with the pelvic floor therapist next month and that will help you a lot. also you mentioned something about an appointment with a university gastro doc. that will help a lot, too. and really, if you feel you have become too backed up--if it's been several days since you've gone at all-- you can always take a stimulant laxative to go . they are not addicting. that's what i've read and that's what my own gastro docs have told me. you don't have to take them every day if you don't want to--you can just take them occasionally to avoid getting too backed up so you don't develop an impaction. or you could try an enema.


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## biswh (Apr 14, 2019)

Thanks annie, I know it's a feedback loop but I guess I just needed reassurance. Right now I am able to go some each day, it just never feels like enough. I don't think I'm impacted, though I'm not really sure what that would feel like.

I have never done an enema before. Do they work if the stool isn't in the rectum, but further up instead?


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## flossy (Dec 8, 2012)

biswh said:


> thanks annie, I will look into getting tested for sibo. right now, I'm dealing with bloat and such from carbs just to get calories in. I don't over eat, but it sure feels like I do when I look down at my stomach.
> 
> I know that this is a heavy question, but I struggle a lot with worrying about how backed up I am at any given point, particularly because I suffer from incomplete evacuation despite taking the osmotics :/ and I guess I'm just looking for advice about whether or not it's worth worrying about?


Chronic constipation and incomplete evacuation go hand-in-hand, at least for most of us with IBS-C. I have incomplete evacuation every day.


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## annie7 (Aug 16, 2002)

biswh--i'm guessing that the small fleets enema probably wouldn't reach any stool that's higher up than the rectum. the big red bag enemas would, though. although i guess you could try using a couple of fleet enemas and see if that works.


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## biswh (Apr 14, 2019)

thanks Annie. good news, I heard from the university GI dept today, they received my referral and should be contacting me next week to schedule an appt.

When I told my PCP that I have to push on my stomach/abdomen to get stool into my rectum to have a BM, she suggested that we could do a CT scan with contrast. do you think that that test could show anything useful?


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## annie7 (Aug 16, 2002)

oh that's wonderful news that the university gastro department will be calling you next week to schedule an appointment!

yes, the CT scan with contrast could be a helpful test to have. keep us posted!


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## monsiepe (Jun 7, 2019)

Sorry you have all these problems... I lived in Spain, UK and Australia. Doctors have never helped me

the way I needed.

I think that constipation of this kind is due to hypothyroidism...!!! I was not treated for hypothyroidism until 5 years ago. Too late to have an effect on the colon behavior.

I was born with constipation 81 years ago. i have never been able to go without a domestic enema. I have had 29,000 enemas. Domestic enema is a rubber pear with a canule that you insert in the sphincter (always be careful not to push on the sides because it can cause hemorrhoids. You press, the water goes in, and the ###### comes out. Then, one can eat more things to be better nourished, knowing that the enema water will get the feces out. Is it possible for you to check your thyroid levels? That again can be a problem because doctors only 'read' the TSH result and do not take much notice of the FT3 and FT4 results. In USA there are some ways of finding out a kind of doctor more progressive. I know you have a lot on your plate and this thyroid thing may be too much for you to deal with... and the domestic enemas I buy online... You cannot go on like that, you need to eat better... I am an old woman and I have learnt after many days of trying this and that and the other to be well nourished... I had an gastroscopy last Thursday, 2 days ago. I have gastritis but this is another issue altogether.


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## biswh (Apr 14, 2019)

Thank you for your reply, I appreciate it. Unfortunately I did have my thyroid levels checked when the constipation started getting worse in January, and the tsh came back at .83, which is normal apparently. (I also lost my period at the same time, which was another reason to check them.)

Regarding the enemas you use, that sounds nice but would they reach stool that is not in the rectum? It seems like my stool accumulated around the sigmoid/belly button area unless I massage it down.


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## biswh (Apr 14, 2019)

Hi annie, thanks for your replies on the other thread. I also came across this one: https://www.ibsgroup.org/forums/topic/230273-liquid-stool-that-wont-come-out and was wondering if/how you managed to combat this problem?


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## annie7 (Aug 16, 2002)

no, i never did find a solution for it.....


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## biswh (Apr 14, 2019)

oh, that's too bad :/ I was hoping you may have suggestions because sometimes that's what I feel is happening with me? Whenever I am able to get stuff out it is soft, but it often just feels like it wants to sit in my gut.

I emailed my PCP today and set up an appointment for a couple weeks from now. She seems to be a better resource than my current GI, unfortunately. I asked her about motegrity so we'll see if she replies. I'm not even sure if my insurance would cover it, to be honest, but I'm willing to try. I also asked her about renewing my linzess prescription; perhaps I would be able to get it to work better if I took it closer to eating. Last time I tried it I took it in the middle of the night because I'd read so much about it causing diarrhea.

One of my other issues is that I feel like food 'sits' in my stomach for a very long time, which I think contributes to my lack of appetite. My PCP suggested I could try reglan, but I looked that up and it seems it's mostly for gastroparesis? I don't typically have nausea (except when it's brought on from anxiety) so I thought it was interesting she suggested it.


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## annie7 (Aug 16, 2002)

yes, your PCP does sound like a really good doctor.

if your insurance doesn't want to cover motegrity, ask your PCP to send them a prior authorization for it. this is what other people have done in this situation and, for the most part, it works. definitely worth a try.

yes, you might want to give reglan a try. or at least discuss it further with your PCP. it could be that you do have gastroparesis. there are tests to dx that. it might help even if you don't have GP. i remember another person on here posted quite a long time ago that even though she didn't have GP, reglan helped her go. and there have a few others who've said that as well.

good luck with everything.


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## fordatum (Jun 10, 2019)

Hi Biswh,

I'm also having problems - somewhat similar but my age differs a lot (I'm in my 50's) and my issues differ somewhat. However I also am trying to figure out what is wrong with me and how to feel better - ugh.

I'm also trying the Low FODMAP plan but I've tried to cut out dairy and gluten completely. This has actually started helping a bit...until I had some dairy (Intentionally) yesterday and afterwards felt horrible. I really thought at my age why would I develop food sensitivities but perhaps I have and perhaps you have also - from what I've read it can happen. I am trying a fairly restrictive diet - but it does allow for a fair amount of carbs so you should be able to maintain weight with it. My goal is to go for a few weeks like this and then gradually add back in things. I realize with Low FODMAP that a person can have dairy and gluten but it may be worth buying up some special dairy free/gluten free items and see if that helps with the bloating at least. It's definitely made a difference for me here in the short term. I am now curious as to whether just having that bit of dairy (it was in oatmeal made with milk) made me feel that bad.

Sounds like you're doing all the right things - great work with the doctor's appointments and testing. I find Miralax helps me - I take it 1-2x a day - and be sure and drink a lot of water with it. Keep us posted.


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## biswh (Apr 14, 2019)

fordatum said:


> Hi Biswh,
> 
> I'm also having problems - somewhat similar but my age differs a lot (I'm in my 50's) and my issues differ somewhat. However I also am trying to figure out what is wrong with me and how to feel better - ugh.
> 
> ...


thanks for your support fordatum. I am also taking miralax - lots of it, actually - but as I wrote in my original post, I think there's something else going on as well because no matter how soft my stool is, it doesn't come down into my rectum unless I go through the abdominal massage routine. At this point I'm spending a good portion of my day in the bathroom to try and get stool out and it still doesn't feel like enough









I have cut out gluten entirely as well, dairy I've been back and forth on -- I think some of the gums in dairy-free products might also be irritating to the gut, so I don't have it too often.

The problem with bloating after I eat is a) I never have an appetite and the bloating makes that worse,







bloating leads to gas, which I cannot expel throughout the day and is incredibly painful. I believe the trapped gas is also contributing to the excess amounts of mucus I'm getting in the stool that does come out as well.

Anyway, it's nice to know that I have some people on this forum who are rooting for me. I will check back in after my PCP appointment next week / if she messages me back about motegrity before then.


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## biswh (Apr 14, 2019)

No updates, but having a rough day today. I think I may need to take a laxative tonight. Im a little worried about doing so, though, because Ive noticed that when I do go the muscles up there tend to clamp up really quickly (I assume this is part of the pfd). Im worried that if the laxative works (sometimes in the past they have not) I will not be able to get all the stool out.

Does anyone have any comments/experience/advice with the difference between an oral stimulant and the suppositories? Is one better than the other?


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## annie7 (Aug 16, 2002)

sorry you're having a rough day.

in my experience, i had better luck taking a stimulant laxative along with an osmotic--the osmotic made the stimulant more effective. my fav combo was dulcolax and milk of magnesia although if you do use this combo, make sure and take them at least an hour apart or you'll get cramping.

for me, an oral stimulant worked far better than suppositories. the glycerin suppositories would just clean out the rectum and maybe stool a little further up. because they contain a laxative, bisacodyl suppositories were far more effective for me than the glycerin ones--they do burn a little but they move out more stool--but they still weren't as effective as an oral stimulant like dulcolax or senna.

good luck! hope you have a better day tomorrow.


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## biswh (Apr 14, 2019)

Thanks Annie.

If you dont mind me asking, how long did you take stimulant laxatives every day, and did they ever lose efficacy for you? I have read a lot of stories where people have to keep increasing the dose over time and dont want to end up like that if I ever have to take them frequently. (100% not trying to offend, but it is something I worry about a lot.)


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## annie7 (Aug 16, 2002)

oh no, i don't mind you asking--no problem.

i used stimulant laxatives daily for about eight years or so (on the advice of my gastro docs) and no they did not lose efficacy for me--i didn't have to keep increasing the dose..

https://www.ncbi.nlm.nih.gov/pubmed/12702977

https://www.ncbi.nlm.nih.gov/pubmed/15654804


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## biswh (Apr 14, 2019)

hi all,

Not sure how much the laxatives worked (I took a full dose of dulcolax) as it seemed like I still had to do digitation and massage to get stool out. good news is I have been able to evacuate a decent amount of stool over the last few days. still very bloated though, lol.

annie, I have a question for you: do you think your pfd caused your colonic inertia, or do you think the inertia came first and the pdf developed over time?

after the previous commenter mentioned it, I've been looking more into enemas recently. there is a site called reddit where, similar to here, there's forums grouped by interest, and I found one dedicated to pelvic floor issues. while looking in the archives I found this pdf: http://ltygblog.s3.amazonaws.com/Constipation-Anismus-Prolapse-Solution.pdf and on pages 26-onward they describe a technique that combines digitation and an at-home, medium sized enema bag as a way to help relieve constipation despite pfd. I think I'm going to ask my PCP about trying this out, but I was wondering if anyone here had any insights or comments on it? I guess I'm a little worried about being able to get all the water out, but if it's diarrhea by the end of the movement I feel like I could evacuate it.

sorry for the rambling, thoughts welcome!


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## annie7 (Aug 16, 2002)

that's good that you were able to get some stool out with the dulcolax. i always took 3 dulcolax pills. plus the milk of magnesia (taken at least an hour apart from the dulcolax). that worked well for me.

i had C problems since childhood. i think my colonic inertia developed first and the pfd developed immediately afterward (if not at the same time).

yes, i think that enema/digitation technique is worth a try. i used the large volume enemas (no digitation) successfully for quite a while until things got to the point that i could no longer get all of the water out. it would slosh around in there all day, which was very uncomfortable and would come out the next morning after i'd taken a laxative the night before. but that's me. besides, you'll be using a medium volume enema bag --and digitation--so you might not have that problem. it's def worth a try. good luck!


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## biswh (Apr 14, 2019)

Thanks annie. I've been taking a look at this kit from amazon: https://www.amazon.com/Aussie-Non-Toxic-Silicone-Phthalates-Cleansing/dp/B01DD5GUV6/ref=pd_ybh_a_1?_encoding=UTF8&psc=1&refRID=254SEG0FH33CACX16Y2B do you think a 2 quart bag would be large enough?


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## annie7 (Aug 16, 2002)

it should be effective. 2 quarts is the standard size.


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## Patrick ibs c (Mar 5, 2016)

or try fleet minral oil enema ,its only 4 oz


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## flossy (Dec 8, 2012)

An enema bulb...

https://images-na.ssl-images-amazon.com/images/I/41OvziucscL._AC_UL210_SR210,210_.jpg

is easier to use then the other kind, but doesn't hold as much water. I've tried both and like the bulb much better.


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## biswh (Apr 14, 2019)

thanks everyone for the input re: enemas! Flossy, it looks like the enema bulb wouldn't hold enough water for it to soften stool further up the colon, so I'm not sure that's what I want to go for.

I also have some updates, if anyone is interested: my university gastro appointment was finally scheduled; I have a nutrition consult on the 3rd and a motility consult on the 8th of July. I'm so relieved that they were able to get me in so quickly, hoping for the best there.

I also had an endoscopy done yesterday, and the dr noted "mild inflammation" in my stomach and small intestine. they ended up taking biopsies. I'm not sure how ultimately helpful it will be, but I guess I'm glad they found something?

I still have my PCP appointment for this week; hopefully I will come out of that with some more options and have some more success in the bathroom between now and my motility consult.


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## annie7 (Aug 16, 2002)

thanks for the update.

that's good that your university gastro appointment was finally scheduled. when is it? hopefully soon. i have a university gastro appointment coming up and they couldn't get me in til mid november (!) that was their earliest available.

and that's good that you have a nutritional consult and a motility consult coming up early next month.

and good luck with your PCP appointment this week.

and good luck with your biopsies.

good luck with everything! keep us posted.


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## biswh (Apr 14, 2019)

Oh I should have clarified: both the motility and nutrition appointments are through the university GI department! This gives me a lot of hope because it seems like Ill be working more with a team of people rather than just one doctor.

Im so sorry yours isnt until November, that is quite a ways out 

Of course Ill keep everyone posted, hopefully the days move quickly between now and then!


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## annie7 (Aug 16, 2002)

biswh said:


> Oh I should have clarified: both the motility and nutrition appointments are through the university GI department! This gives me a lot of hope because it seems like Ill be working more with a team of people rather than just one doctor.


oh that's great! you're right--it's much better to be working with a team of doctors.


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## biswh (Apr 14, 2019)

Hey all,

back with a brief update and some questions. My endoscopy biopsies came back normal, but they did find an ulcer in my duodenum...the nurse practitioner is suggesting I get on a PPI to help heal it and potentially help with acid reflux (which is what is presumably causing the inflammation they saw?). If my issue is SIBO, though, I'm a little wary about trying this out. I can't get tested for it yet because the GI dept. I'm at now doesn't offer the testing, but once I meet with the motility doctor in July I'd like to.

My PCP said that the enemas should be fine, but I still have some lingering questions about how to do them if anyone can answer. First off, when is the best time to do them, and how long do they take? Also, I bought a bunch of distilled water to use for it but I'm not sure how to go about warming up that much water at once. I've definitely gotten more well-acquainted with my behind since all this started but I am really nervous about doing it for the first time.


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## annie7 (Aug 16, 2002)

thanks for the update. sorry about the ulcer. it would be good to get that healed up so that it doesn't get worse. i understand about the sibo vs ppi thing, though. you should really talk to a gastro doc or even your PCP about all this because like i said, you really don't want to let that ulcer get worse.

i always did my enemas in the morning because sometimes it would take a while to get all the water out, at least for me.

sorry-can't help you on the enema water question. back when i was doing enemas, it never occured to me to use distilled water, although i can see why one might want to and that distilled water would be safer. i just filled the enema bag up with warm tap water.

good luck with everything.


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## biswh (Apr 14, 2019)

So I did my first enema this morning, and I definitely got all the water out...but not much poop lol. It felt similar to doing my colonoscopy prep. I don't think I held the water in long enough-- what's a good amount of time to wait? Also, I stayed laying down on my left side while waiting, and wasn't sure if there was a better position I could've been in to encourage the water to move further up my colon.


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## annie7 (Aug 16, 2002)

oh that's too bad---i wonder why not much poop came out? was there a lot of hard, dry poop inside of you? if you have a lot of hard dry poop in there, a mineral oil enema might be more effective. i've only done one of those. messy, but effective.

i've read that lying down on your left side is supposed to be a good position. i used to do mine in the bathtub using the classic "butt up" position. i know you're supposed to hold the water in there for a while but i was never able to do that. as soon as i had all the enema water inside me, i've have to get out of the tub and get onto to the toilet. i would go and water and poop would come out. sometimes more would come out a little later.

sorry it didn't work well for you.


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## biswh (Apr 14, 2019)

Well the water that came out was brown and some bits of veg that I'd had to eat recently-- it's just hard to tell if the brown water was actually stool or not. I also didn't take as much miralax last night, so it's possible that things stopped moving along a little sooner than normal - more on my right side than my left - and that's why the enema didn't work as well. I think I'll take my more normal amount of miralax tonight and try it again tomorrow.


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## annie7 (Aug 16, 2002)

i would think that if the water coming out was brown (especially if it was thickish and brown), that's poop. enemas tend to liquify your poop, depending on how hard your poop is.

that's a good idea about the miralax. good luck tomorrow.


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## Patrick ibs c (Mar 5, 2016)

good luck


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## biswh (Apr 14, 2019)

Oddly enough I got a lot of stool out last night doing my usual routine, so I guess I was right about the enema not really getting much. Had a similar experience this morning when I did the enema, lots of water but no real stool. Maybe evening is a better time for me to try doing them. It might work better with my roommate situation anyway, one of them is pretty judgmental and has expressed frustration about my bathroom time in the past.

In other news, I had some garlic bread last night because my coworkers were sampling it (I work at an italian restaurant) and the pain from gas was unbearable after--still not feeling well today and very bloated. I just wanted to feel normal  Hoping to get tested for sibo at the uni gastro. I'm wondering though how long the treatment would really last unless we were also able to address the underlying cause (ie constipation). At this point, I'd stick to any crazy diet I needed to.


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## annie7 (Aug 16, 2002)

hmmm--wonder why the enemas aren't working? i hope doing them in the evening works better for you.

that's a shame that roommate of yours is so judgemental. how would he/she feel if they were in your shoes.

so sorry about the garlic bread. oh yes--gas can be extremely painful. yes, hope your uni gastro tests you for sibo.


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## biswh (Apr 14, 2019)

It's been a weird living situation with her and I think she thinks I'm just hanging out in the bathroom rather than trying to go.

Annie, I think I've read somewhere here on the board that you were treated for sibo? Did you find it helpful/worthwhile? Any dietary changes you made after treatment?

I am considering trialing Trulance between now and my GI appointments, since I tried out linzess and that didn't really work. Does anyone on the board have experience with it or advice on how best to use it?


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## annie7 (Aug 16, 2002)

yes it sounds weird. why would anyone just want to hang out in the bathroom? be nice if you could just have your own place.

yes, i was treated for sibo. my insurance refused to pay for rifaximin (xifaxan) so my gastro doc prescribed augmentin (amoxicilliin clavulanate). it worked well. i felt better--not as bloated and gassy--afterward. my diet was pretty clean to begin with but i tried to cut down more on sugar. the sibo eventually came back so i went through another course of augmentin.

good luck with trulance. it can't hurt to try it. it is not a prokinetic like motegrity--it's more like linzess. it adds fluid to the colon. a lot of people here on the board have tried it so hopefully you'll get some answers from them. or you can do a board search on it.

good luck with everything.


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## biswh (Apr 14, 2019)

Thanks annie, I did a board search, interesting stuff.

re: diet, I'm finding myself a little burnt out and depressed about food recently. Do you or anyone have any suggestions for meals that I could cook up and maybe spark my appetite? I used to bake and cook a lot before all this happened, and losing that has been pretty depressing.


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## biswh (Apr 14, 2019)

update: apparently Trulance isn't covered by my insurance, and they want me to try amitiza or movantik first. Movantik is for OIC though, and I'm not on opioids...ha







Guess I'll be trying amitiza.


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## annie7 (Aug 16, 2002)

oh yes--my insurance company has made me jump through hoops, too (called "step therapy") before they'll let me try a new (and possibly more expensive) med. i find that frustrating because the meds they make me try first are never effective. but it's best to go ahead and do what they want and get it over with. i imagine they will want you to do the same thing with motegrity--they'll want to make sure that you've tried everything else that's available first.


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## jza (Oct 4, 2016)

biswh said:


> update: apparently Trulance isn't covered by my insurance, and they want me to try amitiza or movantik first. Movantik is for OIC though, and I'm not on opioids...ha
> 
> 
> 
> ...


Will they cover Linzess? My insurance carrier stopped covering Trulance but agreed to cover Linzess as an alternative. They're very similar drugs. I didn't notice a difference when I changed over about a year ago now.

I understand how frustrating it can be, especially at a young age. I was diagnosed with SIBO-C in my mid-20s and have been dealing with it for several years now. My doctor and I tried getting rid of with antibiotics which only worked while I was actively taking the antibiotics. We tried adjusting my diet with little change. The only thing that has helped is using Linzess once per day to empty out. It can really take a toll on your physical and mental health. I'm maintaining hope that they will find more effective ways to actually kill off SIBO rather than just treat the symptoms with drugs like laxatives.


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## biswh (Apr 14, 2019)

I guess I'm not as upset about the step therapy approach as I am about the fact my doctor's out of town for the rest of the week, so I have to wait until next week to try Amitiza.

jza: My insurance does cover Linzess, which I tried back in March of this year. I did not notice any improvement on it, even on the 290 dose, though I did not try playing with the "food effect" as Annie called it. Maybe it would be worth trying again though, I'm not sure.

Annie, I have a question about post-sibo treatment for you: I know lots of us with CC are advised to eat smaller meals throughout the day to not overload our digestive systems, while people with sibo are usually advised to fast between meals. Don't these pieces of advice conflict with each other?


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## annie7 (Aug 16, 2002)

so sorry your doc is out of town for the rest of the week. in the meantime, you might want to try playing around with linzess (if you still have some on hand) and the food effect. worth a try, IMO--might make a difference. it sure did for me.

i would never have been able to do the grazing thing because of my job. i always just ate three meals a day. if you are dx'd with sibo, that would be a good question to ask your gastro doc.


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## biswh (Apr 14, 2019)

Unfortunately I don't have any linzess left :/

I feel very backed up today, frustrated because I took some senna last night and miralax but nothing came of it today. Not sure why.


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## annie7 (Aug 16, 2002)

so sorry you're so backed up. how much senna did you take? i used to have to take 4 of the extra strength ex lax and a full cap of milk of magnesia.

i hope you can somehow get unblocked. i wish your doc was in town. you could call him/her for advice. or try another enema. you don't want to get too backed up for too long.

good luck.


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## biswh (Apr 14, 2019)

I took 3 of the regular strength senakot. The day before that I took 3 bisocodyl and while I got stool out in the morning with my regular routine, I dont think the bisocodyl kicked in til much later in the day and just left me with lots of painful cramping and mucus.


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## annie7 (Aug 16, 2002)

i'm really sorry about that.

the regular strength senokot never worked for me. i needed 4 of the extra strength. and milk of mag.

bisacodyl and other stimulant laxatives always took about 10 hours or so to work for me. one thing about bisacodyl--be sure and take it at least an hour apart from any dairy products (milk, yogurt etc) or antacids (like milk of mag, maalox etc) or you'll get cramping.

i wish you could get in to see your gastro doc sooner. and i wish your regular doc was in town. you could always go to urgent care if things get bad and see what advice they have to give.


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## biswh (Apr 14, 2019)

I might go to urgent care if things dont move along by tomorrow (I have work tonight). Perhaps they would be able to x ray me and like you said, give some advice.

Does cooking vegetables help with the fiber making things worse? Was going to have fish and green beans for dinner.


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## annie7 (Aug 16, 2002)

yes, do go to urgent care and get an xray done if things aren't better by tomorrow.

cooking vegetables does soften up the fiber. when i was really backed up, i'd stick to soft, squishy foods like soups, yogurt, eggs, cooked, pureed squash... yes, fish would be good but idk about the beans. maybe ok if you cooked them a lot to soften them up a lot...


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## annie7 (Aug 16, 2002)

i really feel for you--truly i do. it's miserable having to go through what you're going through.


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## biswh (Apr 14, 2019)

Thanks Annie for the advice, I actually have some squash as well so perhaps I will have that instead of the green beans.

The good news is that I have those appointments coming up...the hope I get from that helps get me through the day. As does workits always nice to get my mind off things, even though my coworkers struggle to understand why I am not as outgoing as I once was


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## annie7 (Aug 16, 2002)

oh good--glad you have some squash...

yes, you're right--you have those appointments coming up so that's wonderful--and hopeful-- and yes, it's good to be able to get your mind off things, too. that;s good that work does that for you.


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## biswh (Apr 14, 2019)

is it ok to take the laxative after eating? Or should I wait til later in the evening when my stomach is more empty?


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## annie7 (Aug 16, 2002)

oh i don't know--sorry. i used to take mine about a half hour before dinner because they took about 10 hours to work. just be careful not to take bisacodyl within an hour of an antacid, eating dairy.....


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## biswh (Apr 14, 2019)

That's ok. Was able to go a decent amount today but still feel like there's a lot hanging out on the right hand side (ascending colon). Not feeling too well. Thinking I will stick with soups and meats again today, actually boiling some carrots for carrot soup or sauce right now.

I wish I had a little xray that could tell me what was going on in there, ha!

edit: do you think bread (GF) would be too hard for my body to digest right now? not sure how to get my calories in.


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## annie7 (Aug 16, 2002)

that's good that you were able to go a decent amount today (yay!) but, yeah, i know what you mean about having a lot of stool still hanging out in the ascending colon. sounds like sticking with soups and meats again today is a good idea.

i would think that bread would be ok. and yes, you have to get your calories in.

oh yes--i used to wish i had a little xray to let me know what's going on in there. occasionally, when i was really backed up, i would call my gastro's office and he'd authorize an abdominal xray and then i could find out just how backed up i was.


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## biswh (Apr 14, 2019)

I ended up going to urgent care after work today, but honestly regret doing it. Not only did it take forever to get seen, but the doctor (older man) was very brusque and really just gave me the "you might have irritable bowel syndrome" speech. After hardly three minutes with him, he wrote me a prescription for sorbitol and sent me along. The pharmacy told me it would be a bit of a wait while the pharmacist was on lunch, and then when I came back they told me they actually didn't have it in stock or know when it would be arriving. Overall a waste of about two hours.

I guess it's just me and a bottle of miralax for the next couple days.


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## annie7 (Aug 16, 2002)

oh dear---so sorry you had such a bad experience at urgent care! that doc sounds horrible. he could at least have done an xray so you could see what was going on in there and how backed up you are. and sorbitol! i didn't know they even prescribed it that much anymore. that's probably why the pharmacy didn't have sorbitol in stock. plus sorbitol can be really gassy. it's always worth a try of course but don't know if that's something you'd want to be taking on a regular basis or not.

too bad he didn't give you a script for linzess or even motegrity.....


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## biswh (Apr 14, 2019)

Yeah, I think the sorbitol he prescribed was supposed to be a one-time thing. "An enema from the top," is how he described it (though I have my doubts).

I just feel exhausted. I want to be able to eat a bowl of pasta without worrying about it turning to stone in my insides.


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## annie7 (Aug 16, 2002)

"an enema from the top". yeah i have my doubts about that too. although hopefully it will help you--hopefully he's right..

to me, an enema from the top would be something more like drinking a bottle of magnesium citrate (horrible stuff) or maybe half a colonoscopy prep, which is what my gastro doc had me do once a week (in addition to the nightly laxatives) to keep me from getting too backed up. that was sure no fun.

yes, it is exhausting. i could never eat pasta because, yes, like you said, it would turn to stone inside me.

maybe you could try that laxative Flossy recommends--Dr Schultz formula #1. a lot of people on here have had success with it.


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## biswh (Apr 14, 2019)

I have looked at IF #1, it is similar to senna, no?

Annie, can you give an example of a typical day's meals for you?


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## annie7 (Aug 16, 2002)

IF #1 has more than just senna in it. cape aloe leaf and cascara sagrada are both laxatives. and there's other stuff in it too.

BOTANICAL INGREDIENTS:
Wild Harvested Cape Aloe Leaf,
Organic Senna Leaf and Pod,
Wild Harvested Cascara Sagrada Aged Bark,
Wild Harvested Oregon Grape Root,
Organic Hawaiian Yellow Ginger Root,
Organic Garlic Bulb,
Wild Harvested Habanero Pepper

well, i have an ileostomy now, so what i eat now is different than what i ate when i had a colon.


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## biswh (Apr 14, 2019)

Thanks for the ingredients list!

Of course, I have read you have a stoma now but forgot. But when you had a colon, what did you eat? The reason I ask is because I have always been able to eat a Standard American Diet until this began and now I am struggling to understand what to eat and what not. Like if bread is constipating, what do you replace it with? Sweet potato? But then that is high FODMAP. It's confusing.


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## annie7 (Aug 16, 2002)

just a note about the low fodmap diet:

what i've generally read is that it's suggested to follow the FODMAP diet strictly for approximately four weeks. after that, what you are typically supposed to do is challenge each group--one food at a time. Wait a few days and then if nothing happens try another food from that group.. and then go on to challenging another FODMAP group, food by food, etc.

everyone is different. some people can't have any FODMAPs at all. others find that it might only be one group that bothers them. others don't notice any difference on the diet. the FODMAP diet is meant to be a 4-6 week diet to determine your sensitivities, but you may also find that you need to be on it long term. essentially the diet reduces fermentable carbohydrates which provides symptom relief to many, but starves our good (and even bad) bacteria of the prebiotics they use for growth. That is why many people recommend challenging food groups later on, so that you can have any many prebiotics in your diet.

plus a strict low fodmap diet is too restrictive and therefore isn't nutritionally sound.

another thing that is important with FODMAP is quantity. many people --myself included--find they can eat a small amount of a high FODMAP food without problems. take broccoli for example. i can eat a half cup of it without problems but a whole cup of it gives me gas. i've seen lists like this too--which show some foods as being considered low FODMAP in small amounts but high FODMAP in large amounts.

when i had a colon i ate: for breakfast, oatmeal, milk, banana or blueberries if in season, maybe an apple. lunch, some roasted vegetables (carrots, sweet potatoes, parsnips, etc) and a chicken sandwich, dinner varied--meat, potato or some kind of starch and a vegetable.

.


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## biswh (Apr 14, 2019)

That all makes sense. Hopefully between the nutritionist and the motility testing we will be able to find something that works for me 

After you were treated for sibo did you find it easier to tolerate higher quantities of fodmaps?


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## annie7 (Aug 16, 2002)

biswh said:


> That all makes sense. Hopefully between the nutritionist and the motility testing we will be able to find something that works for me


oh yes--i think you will.

i've read that it's good to have a nutritionist work with you if you're doing the low fodmap diet. that way you can be sure you have a nutritionally sound diet.

no, i didn't find that being treated for sibo helped me tolerate higher quantities of fodmaps. but that's me---we're all different. it very well might help you with that.


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## biswh (Apr 14, 2019)

annie7 said:


> but that's me---we're all different. it very well might help you with that.


I think this is what makes IBS so difficult its such an individual experience, and even when you do all this research, theres no way to know what works for you until you find it :/

Going back to the IF#1 (and stimulants in general). I think a lot of what holds me back about them is that I am worried that GIs will see me as someone with just an eating disorder if I use them too much. Or that I will become dependent on them, and they will blame me for it.


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## annie7 (Aug 16, 2002)

earlier in this thread i posted some links from articles from the NIH that said that stimulant laxatives do not cause dependency.

my gastro docs both told me the same thing and told me to continue taking laxatives since none of the C meds worked for me. they said taking laxatives to keep things moving was far better than developimg an impaction.

i don't understand why you think your doctors will think you have an eating disorder because you use laxatives. none of my doctors thought that. i 've been reading this board and another board for years and i've never read of any laxative user's doc who thought that. people who have an eating disorder use extremely large amount of laxatives. they binge and purge. we're not doing that--we're eating normally and we're just taking the amounts of laxatives recommended on the box. we're not taking entire boxes of laxatives.


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## biswh (Apr 14, 2019)

annie7 said:


> i don't understand why you think your doctors will think you have an eating disorder because you use laxatives.


Mostly I think this because I have already had multiple doctors ask me if I have an eating disorder. I think this is because of my age, and because I've lost weight since all this started. It's already hard to be taken seriously as a young woman, but the associations between females, eating disorders, laxative use, etc make it even more difficult (especially since I live in a college town). Sadly, not everyone in real life is as openminded as the kind people on this forum


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## annie7 (Aug 16, 2002)

that's really too bad that your docs have chosen to sterotype you. shame on them! and they should listen to and believe your explanation of why you've lost weight (because of your C). really--any doc who knows anything at all about constipation should understand that, IMO.

it's totally natural for people suffering from chronic constipation to be underweight. it's hard to feel hungry and to want to eat when one is all backed up and C. i used to force myself to eat in order to maintain my weight (since i was/am already thin) plus i would supplement my diet with nutritional drinks like boost or ensure--which i still do because for some reason i still can't seem to gain weight.

however, if it were me, i'd be taking the laxatives regardless of what the doctors thought (and i'd find some new doctors) . because like i said, taking laxatives is better than developing an impaction. that's the last thing you want. and you're not abusing them like people with eating disorders do. you're just taking the prescribed amount so you can go.

it'll be good next month when you can see the university gastro doc and have your tests and everything--get a diagnosis. and hopefully your uni doc will prescribe motegrity and that will work for you.


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## nikki-m (Dec 14, 2018)

biswh said:


> Mostly I think this because I have already had multiple doctors ask me if I have an eating disorder. I think this is because of my age, and because I've lost weight since all this started. It's already hard to be taken seriously as a young woman, but the associations between females, eating disorders, laxative use, etc make it even more difficult (especially since I live in a college town). Sadly, not everyone in real life is as openminded as the kind people on this forum


this has happened to me too - so much so that my parents became convinced that I had an eating disorder and even though I was 26 at the time, had me in eating disorder based therapy and were wondering why I wasn't getting better - WELL DUH I don't have an eating disorder!!!! I have horrible constipation/GI/immune issues that when I eat the wrong foods, I get really sick. I want to eat foods, but it makes me really ill to do so. I totally get it it, and it is so frustrating.


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## annie7 (Aug 16, 2002)

Nikki--so sorry this happened to you! what a terrible experience. it's miserable enough to have to struggle with chronic constipation let along being totally misunderstood and accused of having an eating disorder and forced to go into therapy on top of it. i really feel for you. so sorry!


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## biswh (Apr 14, 2019)

It is really one of the worst feelings!

My situation did not improve over the weekend. I was passing strange, watery stool but still felt very backed up and like there was a band across my chest so I called my PCP this morning she is still out of town but they booked me with another dr for this afternoon to help figure out what to do.


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## annie7 (Aug 16, 2002)

so sorry you're still backed up.

that's too bad your PCP is still out of town but that's good you could get in to see another docter this afternoon. hope he/she can help.

good luck. keep us posted.


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## jza (Oct 4, 2016)

biswh said:


> I ended up going to urgent care after work today, but honestly regret doing it. Not only did it take forever to get seen, but the doctor (older man) was very brusque and really just gave me the "you might have irritable bowel syndrome" speech. After hardly three minutes with him, he wrote me a prescription for sorbitol and sent me along. The pharmacy told me it would be a bit of a wait while the pharmacist was on lunch, and then when I came back they told me they actually didn't have it in stock or know when it would be arriving. Overall a waste of about two hours.
> 
> I guess it's just me and a bottle of miralax for the next couple days.


If you have SIBO, many doctors who don't specialize in gastroenterology don't even now what it is.. let alone how to treat it. He probably prescribed sorbitol because it can work as a laxative in someone with a mild case of constipation. If you have SIBO, it can actually worsen the symptoms.


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## biswh (Apr 14, 2019)

Jza, thats a good point. I know sorbitol is a FODMAP so that makes sense.

Drs appointment was okay. They renewed my linzess prescription but didnt have much advice for what to do in the meantime and werent interested in doing an x ray because they were able to hear some sounds with the stethescope. Not sure what to do now.


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## annie7 (Aug 16, 2002)

well hopefully linzess will help you. try playing around with the "food effect." (taking it closer to eating, like i mentioned earlier).


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## nikki-m (Dec 14, 2018)

annie7 said:


> Nikki--so sorry this happened to you! what a terrible experience. it's miserable enough to have to struggle with chronic constipation let along being totally misunderstood and accused of having an eating disorder and forced to go into therapy on top of it. i really feel for you. so sorry!


Annie, it has been so awful. at least the eating disorder therapist recognized that i didn't have an eating disorder, so that's something! i'm actually seeing a therapist who specializes in people with GI conditions on Wednesday, as well as a nutritionist who works solely with people with IBS-type issues. I'm hoping that i can get some guidance on what foods to eat from the nutritionist.


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## annie7 (Aug 16, 2002)

well, i'm glad that the eating disorder therapist realized that you didn't have an ED. thank goodness!

and that's terrific that you will be seeing a therapist who specializes in people with GI conditions and also a nurtitionist who works with people with IBS problems. that ought to be really helpful.

good luck with your appointments. keep us posted.


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## biswh (Apr 14, 2019)

Passed only water this morning, despite taking dulcolax last night. I called my GI this morning and they told me to drink a bottle of magnesium citrate and if that doesn't work to go to the ER. Hopefully it works, my ER copay is $200 ha.


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## annie7 (Aug 16, 2002)

oh no--so sorry to hear this!

did the mag citrate work? hope so. i always had to take mag cit with 3 or 4 dulcolax to get it to work. hope you don't have to go to the ER.

i really wish that doc you saw yesterday had ordered an xray.


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## oceannir (Mar 6, 2012)

Do those Pico Prep colonoscopy preps work for you? I have always found them a very powerful last resort.


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## biswh (Apr 14, 2019)

Mag citrate didn't particularly work. Only had some mucus and flaky stool. Had an x ray done and then went over to the GI dept, because I wasn't sure what I should eat or do at that point. The office sent out a nurse, who gave me a packet on a high fiber diet from the doctor and that I could up my dosage of miralax. I wanted to scream. I politely told her that that's what I've been doing-- and that the fact that a 10oz bottle of mag citrate did nothing and I haven't had a proper bm in many days was concerning and I didn't know what to do. She went back, spoke to the dr some more, came back and said "your x ray looks normal" (I asked her what this meant but she didn't really answer-- I assume it just means I'm not actually impacted/blocked?) and then said, "the doctor said you could try having a salad tonight, that might help push things through."

And that was it. She said the NP may be able to call me in the morning to follow up, but that was about it. I wanted to punch a wall. I had to spend some time collecting myself in the bathroom (ie crying my eyes out) before my friend and I left. If they don't call me tomorrow I'm going to call them after my nutritionist appointment because this is ridiculous at this point.



oceannir said:


> Do those Pico Prep colonoscopy preps work for you? I have always found them a very powerful last resort.


I don't know-- my go-lytley colonoscopy prep worked, but as I recall that was a prescription I had to pick up and this dr doesn't really seem to be keen to help. I am also going to message my primary care back and see if she has any suggestions.


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## annie7 (Aug 16, 2002)

oh so sorry mag cit didn't work much. how frustrating. it wouldn't work for me, either, unless i took 3 or 4 dulcolax with it.

and so sorry that doctor and nurse were so very unhelpful! more fiber indeed! how ridiculous! really, i'd like to print out the article below and just shove it in their faces.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3435786/

yes, do call them back if the NP doesn't call you.

hopefully your PCP will have some suggestions for you. or maybe she could give you a script for some go-lytely.

here is one gastro doc's recommendation for using go-lytely on a daily basis (i don't care for her high fiber diet advice, though)

https://www.heritagevalley.org/media/W1siZiIsIjIwMTgvMDEvMzEvMTN5YWxjY2FhX0hWTUdfUm9zZW1hbl9Hb0xZVEVMWV9DaHJvbmluX0NvbnN0aXBhdGlvbi5wZGYiXV0/HVMG_Roseman_GoLYTELY%20Chronin%20Constipation.pdf

good luck with your appointment today with the nutritionist. keep us posted--thanks.


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## biswh (Apr 14, 2019)

Appointment went surprisingly well, even though I was a mess most of it. They have ordered a gastric emptying study for me (which I have now scheduled), as well as manometry. Hoping to get sitz and breath test done as well. My motility consult is on Monday, I should have more info then.

Called NP's office, they took a message. have not heard back from them yet.


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## annie7 (Aug 16, 2002)

that's great that your appointment went well and that they ordered some tests, too. what kind of manometry did they order---an esophageal manometry or an anorectal manometry?

hope the NP calls you back.


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## biswh (Apr 14, 2019)

anorectal monometry, because I have issues with not feeling urge to go and also straining despite stool consistency generally being loose or straight up water. I tried bringing up pfd with my previous GI and they wrote it off as a OBGYN thing, but this dr actually suggested it before I had the chance to bring it up like I was planning to! Very relieving.


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## annie7 (Aug 16, 2002)

yes, that's a very good, informative test to have.

i never felt the urge to go either. when i did the balloon expulsion part of the anal manometry, i couldn't even feel the balloon in there even when it was inflated to the max, much less push it out.


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## biswh (Apr 14, 2019)

annie, I found a post a while back somewhere on the forums of the starch content of various foods but am having trouble re-finding it. I think it was by tummyrumbles?


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## annie7 (Aug 16, 2002)

yes, i remember that post from tummyrumbles. here it is:

https://www.ibsgroup.org/forums/topic/230409-starch-content-of-common-foods/


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## biswh (Apr 14, 2019)

thank you Annie!


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## annie7 (Aug 16, 2002)

oh you're more than welcome! hope it helps.


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## biswh (Apr 14, 2019)

Hi everyone, I'm back with some questions! (Hope everyone in the US had a good holiday yesterday.)

I am struggling with how to tell when something constipates me. Annie, I think this may be a good question to ask you, but others can answer too! Since you took osmotics and stimulants everyday, I'm sure most of your output was fairly loose. In that scenario, was something that constipated you just something that made the medication less effective? Did it result in more incomplete evacuation?

How do people here handle eating out or having a social life? I'm not sure what to tell my friends or what to order if they ask me out to lunch.

(edit) oh I was also going to ask if anyone has taken linzess in the evenings instead of mornings? I am finding that I am able to go a decent amount in the AM but I feel rather full of it (lol) by the end of the day and was thinking of trying to take linzess around dinner or bedtime instead.


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## annie7 (Aug 16, 2002)

biswh said:


> I am struggling with how to tell when something constipates me. Annie, I think this may be a good question to ask you, but others can answer too! Since you took osmotics and stimulants everyday, I'm sure most of your output was fairly loose. In that scenario, was something that constipated you just something that made the medication less effective? Did it result in more incomplete evacuation?


sorry--i'm a little confused. are you talking about food here?


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## biswh (Apr 14, 2019)

yes! I know my baseline is "constipated" in that my digestion moves slowly. But I'm finding it hard to tell when a certain food may constipate me more. I know obvious culprits (like pizza) but it's also hard to tell when you're taking supplements/medications to help you go. Does that make sense?


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## annie7 (Aug 16, 2002)

oh yes, that makes sense. it would be hard to tell what foods makes one's C worse while taking laxatives.

actually, i figured out what foods made my C worse --like lots of fiber, doughy breads like bagels, etc-- long before i finally started taking laxatives.


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## biswh (Apr 14, 2019)

Oh, I see. I think part of the problem for me is because I've always been constipated in terms of stool consistency (I always had hard, difficult to pass stools, but I was able to do so regularly) it's hard to judge.

Any advice/experience with my other two questions?


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## annie7 (Aug 16, 2002)

biswh said:


> How do people here handle eating out or having a social life? I'm not sure what to tell my friends or what to order if they ask me out to lunch.
> 
> (edit) oh I was also going to ask if anyone has taken linzess in the evenings instead of mornings? I am finding that I am able to go a decent amount in the AM but I feel rather full of it (lol) by the end of the day and was thinking of trying to take linzess around dinner or bedtime instead.


i didn't have any problems eating out. i would just order whatever i wanted to eat. i really didn't have a lot of problems with food constipating me (just bagels and lots of high fiber food). at lot of times i wasn't really hungry but i could still eat.

i really didn't have any problems having a social life, despite feeling all backed up and miserable. i didn't tell my friends about my C problems. seemed a little TMI to me. i did eventually tell my boyfriends, though---once i got to know them really well.

sure, you can take linzess before you eat dinner (a half an hour or whatever before dinner). idk about taking it at bedtime, though, unless you had a snack after you took it . eating food after taking it is what makes it work.


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## oceannir (Mar 6, 2012)

annie7 said:


> i didn't have any problems eating out. i would just order whatever i wanted to eat. i really didn't have a lot of problems with food constipating me (just bagels and lots of high fiber food). at lot of times i wasn't really hungry but i could still eat.
> 
> i really didn't have any problems having a social life, despite feeling all backed up and miserable. i didn't tell my friends about my C problems. seemed a little TMI to me. i did eventually tell my boyfriends, though---once i got to know them really well.
> 
> sure, you can take linzess before you eat dinner (a half an hour or whatever before dinner). idk about taking it at bedtime, though, unless you had a snack after you took it . eating food after taking it is what makes it work.


Good post as usual Annie,

Glad you are still spending so much time spreading useful positive information.

Its an interesting discussion on how much people need to know about this disorder, I've often struggled with it because its a reasonable disability that really does interfere with your life, so by hiding it you're being somewhat dishonest. But on the flip side, its not really other peoples business, as everyone has their individual flaws. If someone has a bad temper or something, they don't usually disclose that.


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## annie7 (Aug 16, 2002)

oceannir said:


> Its an interesting discussion on how much people need to know about this disorder, I've often struggled with it because its a reasonable disability that really does interfere with your life, so by hiding it you're being somewhat dishonest. But on the flip side, its not really other peoples business, as everyone has their individual flaws. If someone has a bad temper or something, they don't usually disclose that.


Hi Oceannir!







how are you?

thanks for your kind words.

and yes, i agree with you on this. people do need to know about this miserable disorder. well said. good point.


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## nikki-m (Dec 14, 2018)

annie7 said:


> well, i'm glad that the eating disorder therapist realized that you didn't have an ED. thank goodness!
> 
> and that's terrific that you will be seeing a therapist who specializes in people with GI conditions and also a nurtitionist who works with people with IBS problems. that ought to be really helpful.
> 
> good luck with your appointments. keep us posted.


I'm going to be doing cognitive behavioral therapy with the therapist and she also runs a support group for people with IBS/IBD, so I'm going to go. I think it will be good for me to meet people who deal with GI conditions. Being on this board has helped me a lot on the emotional side, so I assume going to an in person support group will have a similar effect. The nutritionist was super knowledgeable and has suggested that I start making smoothies because they are easier to digest, and I think its a great idea. She suggested using coconut yogurt (I can't handle dairy) and collagen powder as a base, a nut butter for protein/fat, and using strawberries as a fruit. I love strawberries but haven't eaten them in a year so I am actually looking forward to trying her suggestion.

I'm seeing my integrative doctor on wednesday and will be getting the results of my stool test back (he did the Genova CDSA test) so hopefully that will give us some more answers. Based on my bloodwork, he does not think I am digesting fat properly (I have very low levels of all the fat soluble vitamins) so he said the stool test will either confirm that, or show that there might be another issue with the vitamin absorption.

Of course I'm supposed to be getting my period any day now, which only makes my IBS flare worse. I honestly feel so much better once my period actually begins. The time between ovulation and bleeding is the worst - all my bowel symptoms just become even more unmanageable! anyone else experience this?


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## annie7 (Aug 16, 2002)

oh that's good that you'll be doing CBT with the therapist and also that you'll be going to an in person support group. both of those things should be very helpful.

and the nutritionist's smoothie idea sound great --nutritious and easy to digest. Also easy to get down if you're feeling backed up and bloated.

that's good that your integrative doctor did the Genova CDSA test. he sounds very thorough. yes, that test should give you some more answers.

oh yes--i'm post menopausal now but back when i had my periods, my C always was the worst right beforehand--miserable.


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## biswh (Apr 14, 2019)

For the smoothies, did your nutritionist give any recommendations for the collagen powder or say why it would be good?

Im not sure if they have it where you are but there is a brand called COCOYO that makes a very good coconut yogurt without added gums/preservatives.

I have my first appointment with a motility GI tomorrow as well as a meeting with a pelvic floor therapist my PCP referred me to. Hopefully it goes well!


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## nikki-m (Dec 14, 2018)

biswh said:


> For the smoothies, did your nutritionist give any recommendations for the collagen powder or say why it would be good?
> 
> Im not sure if they have it where you are but there is a brand called COCOYO that makes a very good coconut yogurt without added gums/preservatives.
> 
> I have my first appointment with a motility GI tomorrow as well as a meeting with a pelvic floor therapist my PCP referred me to. Hopefully it goes well!


she recommended the Vital Proteins Bovine collagen. She said its loaded with protein/amino acids, and it can also help to heal my gut lining, which I think i desperately need to do. I got the collagen at whole foods and it was expensive ($30 for a tub of it) but honestly I will do anything to get my gut working again. My pelvic floor PT also mentioned collagen, so if two professionals are telling me to try it, that must be a good sign!

The brand my nutritionist suggested was Anita's yogurt - it's made in a small place in Brooklyn (I also got it at whole foods) and there were only two ingredients plus the live cultures. I need to keep a look out for the COCOYO brand - i just looked it up and the ingredients look great! Thanks for the suggestion I had never heard of it before!

I hope your motility appointment and PT appointment goes well! let us know!


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## annie7 (Aug 16, 2002)

yes, biswh--good luck with your appointments today! hope they go well.


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## biswh (Apr 14, 2019)

My appointments went well. Very well. The PF therapist did an external and internal exam and confirmed some of my suspicions. My muscles are too tight, and when I try to relax them to have a bowel movement, I'm actually contracting. The manometry will also confirm this most likely; I have 6 therapy sessions scheduled, and I might get more through my GI office. Honestly, I wanted to cry when I heard her say it, because I finally felt like I wasn't going crazy.

The motility appointment also went well. Basically, they agreed that in addition to the gastric emptying study and the manometry, the sitz was definitely in order, and they were willing to test me for sibo! I'm terrified for both of those tests because no laxatives/stool softeners/medication are allowed (obviously) but also felt really empowered because they were actually listening to me. They want me to try linzess for a longer amount of time (I tried it for a month), as well as amitiza. The GI even said that she has people on both of them at the same time, which sounds a little crazy to me. I don't really want to be on a cocktail of drugs, but I guess I kinda am at this point anyway so maybe it's a moot point lol.

In some ways, it's overwhelming to actually have things happening and have someone listening to me. Especially when I got a message from my previous GI saying he wanted to retest me for celiac (even though I did that ages ago). I feel pretty hopeful.


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## nikki-m (Dec 14, 2018)

having hope is so important, but it can be so hard. It is something I am currently struggling with.

I'm so happy things went well and that the doctors listened to you. I'm not going to lie, the sitzmark study was awful because i had to be off of laxatives (I completely botched mine too - I couldn't make it past day 3 because I was in so much pain). But power through it - the test will give your doctor info.


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## annie7 (Aug 16, 2002)

thanks for the update, biswh. that's terrific that your appointments went so well and that your doctors actually listened to you and that they'll be ordering tests plus you have the therapy sessions schuduled. you're finally on your way to getting some answers!

and yes, like Nikki said, taking the sitz marker test is pretty miserable for those of us who are laxative dependent but it's a very good diagnostic test to have. i didn't last past day three either because i was so backed up that i became unable to pee. the evening of day three i went to the ER where they pumped a liter and a half of urine out of me, did an ab xray so my gastro could see where the markers were (i hadn't passed any of them) and told me to go home and abort the test.

good luck with everything!


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## biswh (Apr 14, 2019)

annie7 said:


> and yes, like Nikki said, taking the sitz marker test is pretty miserable for those of us who are laxative dependent but it's a very good diagnostic test to have.


that's what I figured. but as one of my friends said, "it's definitely not ideal, but it probably won't kill you". LOL

will update with results of gastric emptying study after it's done on Thursday.


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## annie7 (Aug 16, 2002)

biswh said:


> that's what I figured. but as one of my friends said, "it's definitely not ideal, but it probably won't kill you". LOL
> 
> will update with results of gastric emptying study after it's done on Thursday.


 LOL

thanks for keeping us updated.


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## biswh (Apr 14, 2019)

So I am on my second and a half day of taking amitiza and about mid morning I am experiencing a lot of nausea and headache/sensitivity to light. I feel like a zombie, its horrible. Nausea was something I only rarely experienced before, so Im pretty sure to the medication. I know I wont be able to take it during the sitz marker so I wont be taking it next week, but my GI recommended trying it for 6 weeks before scratching it off the list. But if I keep having these side effects, I feel like thats a really long time? Also worth noting it hasnt really helped me have a bm. Im not sure if I should reach out to them sooner than the 6 weeks if the side effects continue.


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## annie7 (Aug 16, 2002)

sorry you're getting nasty side effects from amitiza and that it's not working. and yes, nausea and headaches are indeed some of the side effects of amitiza. from what i've read, amitiza is supposed to work within 24 hours.

i tried amitiza and it didn't work at all for me. no BM. i only tried it for three days because it wasn't working plus the side effects--in my case severe nausea, gas and bloating plus my ankles, feet and calves started swelling up (edema can be a side effect of amitiza)--were miserable. also, i get migraines and no way would i ever take any med with a side effect of headache. but that's me.

but yes, i agree--six weeks is an awfully long time to have to put up with those side effects, especially if it isn't working. of course, they do say that sometimes side effects will go away once you take the med for a while and get used to it, but still......anyway--that's my 2 cents worth.

oh--ps--there are two dose strengths of amitiza--8 mcg and 24 mcg. some people on here have said that the lower dose--8mcg--was more effective than the higher dose ("less is more", one person said) plus the side effects weren't as bad on the 8 mcg dose.


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## nikki-m (Dec 14, 2018)

I'm sorry you're not feeling good on the Amitiza - that is one I have not tried. My old GI gave me samples of it, but I never used it because of my experience with trulance (I was honestly scared, and after discussing with my mom, she agreed with me not taking the amitiza).

I got the results of my stool test back, and it shows high levels of fat in my stool (I seem to not be digesting fat despite the fact that I am so constipated - odd) but I also have no growth of the good bacteria, and a complete overgrowth of a bad bacteria. My doctor gave me cipro to take to try to kill it off. He also gave me a probiotic to start after a coupe of days on the cipro to start to repopulate the good bacteria. We also discussed a plan for digesting fats, and I'm probably going to start a bile supplement soon.

after some research, apparently low bile acids can cause chronic constipation and affect the motility of the colon! I'm feeling a lot more hopeful now that I will begin to feel better!!!!!!!

I'm a big "test, don't guess" person so while I was not happy to be doing a three day stool collection, I am now happy that I did it.


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## annie7 (Aug 16, 2002)

good luck with everything. hope your doctor's plan for you works! thanks for keeping us posted.


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## biswh (Apr 14, 2019)

Nikki, that sounds like great progress! If you dont mind me asking, was there a website or something you used to find your integrative doctor?

I am finding the amitiza gives me very liquified stool, which is (frustratingly) even harder to evacuate than what I was dealing with before. I will give it a little more time after my sitz study, but do not think this drug is helping me, especially with the pfd. This is where most of my struggle lies right now only being able to evacuate a little at a time is truly horrible, and the few enemas Ive attempted recently have resulted in a lot of retained water. Not sure if suppositories would be a better idea. I dont start biofeedback until late August, and if im being honest Im terrified it wont be successful how long do they have you try it for to see results? What happens if it doesnt work?

My emptying study came back normal, which is good news. I have been doing some reading on Gastroparesis and it sounds horrible. Still, the negative result also left me feeling a little broken down.

I have the breath test scheduled for next Thursday.


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## annie7 (Aug 16, 2002)

that's good your emptying study came back normal. GP is really a horrible condition to have.

as far as biofeedback is concerned-- it does help a lot of people. some people see results faster than others. because i had problems since childhood (for decades) , i was a tough case. i had a very long standing tight muscle memory and it understandably took a long time for my muscles to unlearn that and to learn to relax properly. i went through two four week courses of biofeedback and also bought a home biofeedback machine so i could practice with it every day at home. it took about a year but i was finally able to learn to relax my muscles. but unfortunately i was never able to learn to coordinate them properly. but that's me. please don't let my story discourage you. like i said, i was a tough case.

good luck with your breath test!


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## nikki-m (Dec 14, 2018)

biswh said:


> Nikki, that sounds like great progress! If you dont mind me asking, was there a website or something you used to find your integrative doctor?
> 
> I am finding the amitiza gives me very liquified stool, which is (frustratingly) even harder to evacuate than what I was dealing with before. I will give it a little more time after my sitz study, but do not think this drug is helping me, especially with the pfd. This is where most of my struggle lies right now only being able to evacuate a little at a time is truly horrible, and the few enemas Ive attempted recently have resulted in a lot of retained water. Not sure if suppositories would be a better idea. I dont start biofeedback until late August, and if im being honest Im terrified it wont be successful how long do they have you try it for to see results? What happens if it doesnt work?
> 
> ...


i found my integrative doctor through family recommendation, but i'm sure if you google "integrative doctor in area x" you might be able to find someone. I do pay out of pocket for him, but I feel that he is definitely worth it.

I take a combination of oxypowder/linzess that helps to liqueify my stools, which is actually easier for me to evacuate. However, it can take 7 or 8 trips to the bathroom between 5am and 9am in order for me to feel as if I went enough.

I'm glad the GES came back normal - mine did too.


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## biswh (Apr 14, 2019)

Yeah liquidy stool is good but if its too much, I cant get it to come down to the rectum via abdominal massage. the amitiza seems to give me straight up 7 on the Bristol and then it just sits in me all day :/


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## biswh (Apr 14, 2019)

Well, I am officially on my sitz marker study; I'll go back in on Friday to see where all the markers are. This should be an interesting week; I haven't not taken anything to help me go to the bathroom in over 6 months, so I'm not really sure what to expect. I also have to consume gluten/wheat products during this time, because my new GI also wants to retest me for celiac (with a more comprehensive panel than last time) because of some inflammation found in my small intestine during my endoscopy.

I also met with a nutritionist today. She was very nice, but not overly helpful. Even though I asked her about alternative diets like keto/low carb - which I have heard good things about from many people with ibs - she seemed more interested in a traditional "balanced diet". She also was not incredibly knowledgeable about FODMAPS (beyond a general concept of them) which was a disappointment. Still, it was nice to meet with her, and she said I could reach out in the future if I ever needed anything.

I guess one nice thing about doing the sitz this week is that I don't have to take amitiza and deal with the headaches it was giving me.

If I'm being honest, though, I'm really scared. Even after six months of this, I have no idea what I should and should not be eating and what I can eat that will let me go to the bathroom. I'm starting more regular therapy this week as well and I'm really glad because I'm sure I'll need it with everything going on.


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## annie7 (Aug 16, 2002)

sorry the nutritionist wasn't more helpful. you could always see another one for a second opinion--one who knows more about FODMAPS. i've read that there are nutritionists that specialize in GI problems--maybe see one of those. for example:

https://www.uofmhealth.org/conditions-treatments/digestive-and-liver-health/gi-nutrition-therapy

good luck with the sitz marker test.


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## biswh (Apr 14, 2019)

Thank you for that suggestion Annie, I think youre right. I might ask my primary care about that!
Also, I was able to go to the bathroom this morning!! Not a lot, but its better than nothing! Pretty sure I was able to see one of the little rings in there which was kinda interesting


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## annie7 (Aug 16, 2002)

yes, hopefully you can get a better nutritionist--someone who can answer your questions about what you should and should not be eating.

wow--that's amazing that you were able to go to the bathroom this morning! you're right--a little is better than nothing. hopefully you're not feeling too backed up and miserable.


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## biswh (Apr 14, 2019)

Oh Im definitely feeling backed up and miserable LOL; I also have a lot of pain on my left side and pelvis today. but Im feeling a little hopeful because if Im able to go some without anything, I think that tells me my biggest issues lie in my pelvic floor and the small intestine (bloating) rather than the function of my entire colon.


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## annie7 (Aug 16, 2002)

sorry about all the backed up misery. i felt that way, too, during my sitz. horrible. miserable.

i think you might be right about your biggest issues being the pelvic floor. the placement of the markers will show what the problem areas are. when do you have your first xray?


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## biswh (Apr 14, 2019)

So interestingly enough they only do day 1 and day 5. So I don't have to go back for another x ray until Friday. Which on the one hand is nice, because it's about a 40 minute drive to the hospital, but on the other is a little disappointing because I would've liked to see the progression of the markers throughout the week.


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## annie7 (Aug 16, 2002)

yes, i know what you mean. i felt the same way--it would have been nice to see the progression of the markers.


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## biswh (Apr 14, 2019)

So I had my first appointment with my new therapist this evening/afternoon. I was surprised to find that she also has ibs! (Though she is lucky enough (imo) to swing in the opposite direction of C.) But she was really quirky (in a good way) and seemed to understand what I was going through. I feel optimistic about having her as a therapist and going to therapy regularly.

Otherwise I feel gassy and uncomfortable, ha. The addition of gluten/wheat products that I've had to do I think is contributing a lot to it. Looking forward to the end of this test.


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## annie7 (Aug 16, 2002)

oh that's wonderful that your new therapist is so good and that she understands what you are going through. that's terrific!

yes, it's too bad that your GI doc is having you add gluten/wheat products to your diet right now, while your doing the sitz marker--what bad timing. you're miserable enough with the sitz and now you're having to eat gluten and wheat products on top of that. can you call his office and ask that this gluten/wheat thing/celiac test be postponed until you're done with the sitz?


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## biswh (Apr 14, 2019)

Honestly I probably could, but at the same time I kind of want to get it out of the way. In my eyes, the celiac testing is a little like a step backward. After the sitz, I want to clear out and just move forward.

No BM this morning. I look like I could be giving birth.


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## annie7 (Aug 16, 2002)

yes, i see what you mean about the celiac testing.

sorry about the no BM. that's miserable, utterly miserable. i felt the same way--so huge--just packed with stool. later on it just got weird--i had cramping and i could feel my colon trying to force it out but i just couldn't pass it, probably because of pfd.

try to drink lots of water if you can, to try to keep the stool stuck in there moist and keep it from hardening up too much. that's what my gastro doc told me to do.

good luck.


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## biswh (Apr 14, 2019)

Update: I had a bowel movement! Incomplete, but a little bit of relief. It was similar to that cramping feeling you described Annie, and then I thought I was going to pass gas but there was stool. Sorry if this is tmi, but the end was more hard and then it was a normal 4 on the bristol scale. This makes me wonder how long it was sitting in my rectum for before I felt the urge, or if I have delayed transit in just the rectosigmoid.

I wasn't able to use a bathroom with a squatty potty, which is why I think it was so incomplete. The pfd makes me want to scream-- I relax and relax as much as I can (I watched that video on how to not strain so many times) but then when it's time to go my muscles just automatically do the push. So my rectum is empty now, but there's still so much stool further up.

I guess I don't want this post to be entirely depressing though, so here is a cat gif to lighten the mood a little: https://i.imgur.com/sEDGOWi.gifv


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## annie7 (Aug 16, 2002)

yay!! you had a BM!! that's wonderful ! too bad it was imcomplete but at least that's better than nothing--like you said, a little relief.

yes, you're right--if the end was hard, it must have been sitting in the rectum for quite a while, i would think. my rectum was full of stool during my sitz marker test. in fact, that's where a lot of my markers were--piled up in the rectum and a bit higher up. there were some in the transverse and ascending colon, too.

sounds like the squatty potty is helping you somewhat--that's good. it helped me. too bad it wasn't there when you needed it today.

yes, i know what you mean about the muscles just automatically wanting to push. and then you only empty the rectum. for me, it took a lot of practicing to learn to do that "make your waist wide" like she says in the video and push from there. old habits die hard.

and yes, i absolutely hated that feeling of having all that stool packed in higher up.

thanks for the cat gif! cute!


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## nikki-m (Dec 14, 2018)

i feel like no one gets the whole "stool is suck higher up" thing - my doctor keeps telling me to do an enema, but it's too far up for an enema to do anything! i am absolutely miserable today.


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## annie7 (Aug 16, 2002)

oh i'm sorry. yes, it's such a miserable feeling.

i used to feel the same way--that the docs just didn't get it.


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## biswh (Apr 14, 2019)

Hi everyone, hope you're doing well today.

I had my breath test (lactulose) this morning. Pretty boring test. I don't have the official results yet but I asked the medical assistant her opinion on the readings and she said that my levels were low; so, I likely don't have SIBO. A disappointing dead end, but maybe a good one? I've heard mixed things about the antibiotics used to treat it and I'm sure they'd be quite pricey.

I had 2 bowel movements this afternoon. The first was kind of hard and I had to strain-- I was also in a public restroom, so no way to elevate myself. I had kind of felt the "urge" for this BM since last night, but couldn't get it out until this afternoon-- it kind of seems like it took a long time to get the part of my rectum where I could really feel the urge, if that makes sense.

The second one was about an hour later in the comfort of my own home and with the aid of my shoebox. I had some mild abdominal cramping beforehand. The stool started off kinda hard, but then I was able to relax and didn't have to strain at all!! And it was a good-size BM!! I'm still very full of poop (based upon the weight they took at the doctor's this morning) but I also feel really happy about this.

Some other thoughts I have: I've actually been forcing myself to eat normally (and maybe a little bit more than normal) during this test so I don't continue to lose weight. I am wondering if possibly eating more is making my body actually poop more. I'm still pretty bloated, but if I don't have SIBO I think I could mentally deal with the bloating as long as I can keep "going"!

Also, I have been doing a lot of reading from old threads on this board, and I came across this one: https://www.ibsgroup.org/forums/topic/187937-new-here-please-list-your-favorite-foods-to-enjoy-and-avoid/ I thought it was very interesting, but I have a question. Lots of people on that thread (and others) have similar "safe" vegetables. So I am wondering: what makes something a "safe" food? Is it one that doesn't cause you pain? One that doesn't make you bloated? One that doesn't make you feel more constipated? I know that cooked vegetables are easier to digest than uncooked, but it is unclear to me how people are able to more clearly find and define their safe foods.


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## annie7 (Aug 16, 2002)

it's good if you don't have sibo. you're right--rifaximin is very expensive. my insurance company refused to cover it and no way could i afford to pay out of pocket for it so my gastro doc put me on augmentin instead. and plus sibo has a tendency to come back after treatment. so you really don't want to have it.

wow--that's terrific that you had two bms yesterday. and today is your last day for the sitz!!! hooray! you made it!

well for me, a safe food is one that doesn't make me C or bloat me or give me pain. it helps to keep a food diary and note down which foods bother you and which don't.


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## nikki-m (Dec 14, 2018)

annie7 said:


> well for me, a safe food is one that doesn't make me C or bloat me or give me pain. it helps to keep a food diary and note down which foods bother you and which don't.


that is how i define a safe food too! I really don't have many and it is so awful.

question annie (which of course you don't have to answer if you do not want to) - with an ostomy, do you still need to watch out for certain trigger foods, or can you eat mostly anything now?


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## annie7 (Aug 16, 2002)

with an ileostomy, i have to be careful not to eat foods that can cause a blockage--for example--no corn, popcorn, nuts, anything with skins (can't eat potato skin but i can eat potatoes), i have to peel apples, plums, peaches, can't eat dried fruit, no mushrooms, no leafy vegetables like lettuce, no peas, not a lot of fiber, etc. some people with ileos can carefully eat some of the things on that list but i have a lot of abdominal adhesions from previous surgeries so i have to be more careful. people with colostomies can generally eat a larger variety of foods than people with ileos.

but i no longer have to worry about certain foods making me more constipated. and for some reason i don't seem to have as much problem with bloating and pain as i did before my surgery.


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## biswh (Apr 14, 2019)

Annie, Nikki, thanks for your input regarding safe foods. I still struggle though. Foods don't really give me pain, per se; I feel pain from trapped gas, and pain in my left quadrant, but not typically from eating. Most of my ibs pain is from having an actual bowel movement. And it seems like I'm always bloated, no matter what I eat. I keep a food diary but given those facts, it's hard to figure it out.

I went in for my last sitz x ray today-- I passed all the markers! The technician let me look at the slides and it was pretty interesting. I had a decent amount of stool/air in my descending colon, but if I passed all the markers during the test that must mean my transit time is pretty normal, no?


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## annie7 (Aug 16, 2002)

maybe you're bloated not from food but because you're constipated? i always felt bloated (and gassy) when i was backed up.

oh that's great that you passed all the markers! and yes, passing all the markers means that your transit time is normal.


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## biswh (Apr 14, 2019)

So my transit time can be normal, but I can still be constipated? That's confusing.

I just feel really frustrated (even though I'm happy I "passed" the sitz marker). I want BMs like I had on the sitz, but maybe a little more frequently. They were unpredictable, and not totally complete, but at least they were normal-- a 3 to 4 on the bristol. Amitiza and linzess (even if combined with OTC stuff) don't help with that-- they just give me gross, watery output that may or may not be actual stool and make me feel sloshy without clearing me out any.


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## annie7 (Aug 16, 2002)

yes it is confusing. maybe ask your doc about it. all i know is that i've read that if you pass all the markers, you have normal transit time.....

https://www.med-ed.virginia.edu/courses/rad/gi/procedures/transit01.html


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## biswh (Apr 14, 2019)

I will ask, thanks.

Since the sitz I have not been taking any medication and managing about 1-3 BMs a day with abdominal massage, digitation, and yoga.

However, I am still not satisfied, and am looking to get some advice. First, my poop is often very sticky/sludgy like mud. This makes it hard to evacuate (especially because it often breaks apart), leaves me feeling incomplete, and also means lots of wiping. It would be nice to have a slightly firmer consistency, but not too much. Does anyone have an idea as to what foods I might add to achieve this?

Secondly, I experienced a very strange thing last night while going. When I have a BM I often have a lot of pain just below my belly button, and - for lack of a better way to describe it - can feel the stool scrape its way from my sigmoid down through my rectum. Last night while this was happening I had a really bad set of abdominal cramps as I passed the stool and then a lot of anal spasming and pain after. Is this just part of IBS? Or is this a side effect of the pfd?? I wanted to cry it hurt so much, guess Im just wondering if anyone else had experienced this.


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## annie7 (Aug 16, 2002)

that's good that you've been able to go without taking any meds.

oh dear--so sorry all that anal spasming and pain that you had last night. sounds like this is the first time that happened? i sure do hope it doesn't happen again--sounds miserable. i've never heard about this being a side effect of pfd. i've never experienced this but maybe you'll get some answers from people who have. i did google "anal spasming and pain" and came up with proctalgia fugax and levator ani syndrome. we have some posts on the board about both conditions from people who suffer from them. and of course by all means ask your doc about it, especially if it keeps happening.

sorry i really can't answer your poop consistency question. i think maybe they recommend fiber for that? hopefully someone else can answer your question. or maybe your dietician can? i've seen posts on the board from people who have sticky stools... or you could post a seperate topic about it, so people will notice it more easily and can answer your question.


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## nikki-m (Dec 14, 2018)

Annie, thank you so much for answering my question about food. I really appreciate you sharing the information.

I just got home from my pelvic floor PT and she did some sensitivity training in my rectum with a balloon (kind of like what I did with the anorectal manometry) and she had the balloon blow up to the size of a lemon and I could not feel anything. It's so strange because I have the incomplete evacuation feeling, but mostly I feel constipated higher up on my left side. This is probably why.


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## annie7 (Aug 16, 2002)

i had the same thing happen. my pelvic floor PT blew the balloon up to the max while it was inside me and i couldn't feel a thing either. according to my anorectal manometry, i had rectal hyposensitivity---that's why i couldn't feel it, she told me. and that's what the manometry tech told me, too, after i had that test.

and yes, that's interesting because i had the incomplete evacuation feeling, too. i could feel stool in there but for some reason i just couldn't feel that balloon. and yes, like you said, maybe this was because the stool was higher up--i just don't know....


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## biswh (Apr 14, 2019)

annie7 said:


> that's good that you've been able to go without taking any meds.
> 
> oh dear--so sorry all that anal spasming and pain that you had last night. sounds like tIhis is the first time that happened? i sure do hope it doesn't happen again--sounds miserable.


It wasn't the first time this has happened, but definitely one of the more painful ones. I asked my primary care and she didn't really have a good answer as to why. Definitely going to ask my PT when I meet with her again.

I have my anorectal manometry scheduled for next Tuesday. I am wondering, what is the difference between what the manometry measures/diagnoses vs. an MRI defecography?


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## annie7 (Aug 16, 2002)

oh i'm sorry you've had that happen before. definitely talk to your PT about it.

here's info on the anal manometry and the mri defecography:

https://medicine.umich.edu/sites/default/files/content/downloads/Anorectal%20Manometry.pdf

https://www.radiologyinfo.org/en/info.cfm?pg=defecography-mri


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## nikki-m (Dec 14, 2018)

annie7 said:


> i had the same thing happen. my pelvic floor PT blew the balloon up to the max while it was inside me and i couldn't feel a thing either. according to my anorectal manometry, i had rectal hyposensitivity---that's why i couldn't feel it, she told me. and that's what the manometry tech told me, too, after i had that test.
> 
> and yes, that's interesting because i had the incomplete evacuation feeling, too. i could feel stool in there but for some reason i just couldn't feel that balloon. and yes, like you said, maybe this was because the stool was higher up--i just don't know....


yes - the balloon was blown up all the way and i could feel absolutely nothing! It's interesting how we both have such similar symptoms. I'm waiting to hear back from my GI about this. I hope he has some ideas.


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## annie7 (Aug 16, 2002)

oh yes, i do hope your GI has some ideas for you.

as far as rectal hyposensitivity is concerned, mine didn't have any ideas for me other than balloon retraining which of course didn't work because i couldn't feel the balloon.

here's an article about rectal hyposensitivity. there are also some topics on the board about it. we're not alone--other people have had problems with it, too.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3479250/


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## biswh (Apr 14, 2019)

Thank you for the info on the manometry and defecography, Annie. I appreciate it.

I asked my gastro about the results of the sitz marker. She said that passing all the markers did mean my transit time was overall normal, but that the moderate stool load in my descending colon is consistent with a "constipated" patient-- so I guess it's possible to be both "normal" and "constipated" after all! So strange how that works. I also told her about the nausea and headaches I was getting with amitiza and she said we could switch back to linzess, which is nice. I'm still not sure that I want to take it though, because I suspect if my stool consistency issues could be solved, then my bowel movements would be more complete and I could be not constipated. Wishful thinking? Perhaps.

I have been thinking about getting a food sensitivity test done. Has anyone had one done or something similar? Was it helpful?


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## annie7 (Aug 16, 2002)

i was thinking that yes, your transit time is normal but maybe the pfd was causing the stool load in your descending colon??? idk if that makes sense or not....

but yes, that's all really puzzling to me--how you can pass the sitz and still be backed up...


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## nikki-m (Dec 14, 2018)

annie7 said:


> oh yes, i do hope your GI has some ideas for you.
> 
> as far as rectal hyposensitivity is concerned, mine didn't have any ideas for me other than balloon retraining which of course didn't work because i couldn't feel the balloon.
> 
> ...


Annie thank you so much for this! You are such a wealth of information and I appreciate your kindness. I'm so glad I found this board.

The rectal hyposensitivity is so strange too because I have hypersensitivity in my intestines (I refer to it as the "scratchy" feeling - I can literally feel food moving through my digestive track).


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## annie7 (Aug 16, 2002)

Nikki--thanks for your kind words. i do appreciate it. i'm glad i've been able to help a little.

there is something called visceral hypersensitivity, which sounds like what you're experiencing in your intestines. i was dx'd with it --pain in the colon. although yes, it's interesting that we feel this in the intestines but we can't feel the balloon in the rectum..


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## nikki-m (Dec 14, 2018)

annie7 said:


> Nikki--thanks for your kind words. i do appreciate it. i'm glad i've been able to help a little.
> 
> there is something called visceral hypersensitivity, which sounds like what you're experiencing in your intestines. i was dx'd with it --pain in the colon etc. although yes, it's interesting that we feel this in the intestines but we can't feel the balloon in the rectum..


You are so welcome! It's crazy how similar some of our symptoms are. Question for you - did the ileostomy help with your visceral hypersensitivity? Besides the constipation, the visceral hypersensitivity is the most troubling of my symptoms (and the bloating too).


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## annie7 (Aug 16, 2002)

yes, we do have a lot of similar symptoms.

and oh yes, the ileostomy did eliminate the visceral hypersensitivity because they took out my colon. in other words--no colon, no problems. i don't have visceral hypersensitivity in my small intestine.

i don't seem to bloat as much, either, with the ileo. i get gas sometimes but it passes right away. before i had a hard time getting gas out.


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## nikki-m (Dec 14, 2018)

annie7 said:


> yes, we do have a lot of similar symptoms.
> 
> and oh yes, the ileostomy did eliminate the visceral hypersensitivity because they took out my colon. in other words--no colon, no problems. i don't have visceral hypersensitivity in my small intestine.
> 
> i don't seem to bloat as much, either, with the ileo. i get gas sometimes but it passes right away. before i had a hard time getting gas out.


Wow - I am so happy that you are pain free. That is amazing and I can only imagine what that is like! I have an extremely difficult time with gas as well - it doesn't even make it to my rectum and it causes so much pain. You are giving me hope that it can get better, and hope is something that is difficult to come by these days.


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## annie7 (Aug 16, 2002)

so sorry you have so much pain. i'm glad that i was able to give you some hope that it can get better. we all need hope---that what gets us through.

did you see these posts? it's good to know that pharmas are working to find drugs that will help relieve ibs pain and visceral hypersensitivity. some of the meds mentioned there are for people with ibs-d but there are a few of them intended for everyone with ibs--not just D.

https://www.ibsgroup.org/forums/topic/353586-new-treatments-in-development/

https://www.ibsgroup.org/forums/topic/354232-arena-is-looking-for-patients-suffering-from-pain-due-to-ibs/


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## biswh (Apr 14, 2019)

annie7 said:


> i was thinking that yes, your transit time is normal but maybe the pfd was causing the stool load in your descending colon??? idk if that makes sense or not....
> 
> but yes, that's all really puzzling to me--how you can pass the sitz and still be backed up...


yeah, this is my thought as well.

So I have an interesting development. I mentioned that my new GI wanted me to retest for celiac. Well, on the more comprehensive panel, the immunoglobulin A body came back at a lower-than-standard level. My GI said that this does not indicate celiac, but has recommended I follow a strict GF diet for a month to see if it improves my symptoms. I emailed her asking for more clarification about the results and what they might indicate, but I'm kind of wondering if this may have something to do with the inflammation that was found on my endoscopy.

Nikki, have you had the opportunity to test out the smoothies? I have been thinking about trying that idea.


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## nikki-m (Dec 14, 2018)

biswh said:


> yeah, this is my thought as well.
> 
> So I have an interesting development. I mentioned that my new GI wanted me to retest for celiac. Well, on the more comprehensive panel, the immunoglobulin A body came back at a lower-than-standard level. My GI said that this does not indicate celiac, but has recommended I follow a strict GF diet for a month to see if it improves my symptoms. I emailed her asking for more clarification about the results and what they might indicate, but I'm kind of wondering if this may have something to do with the inflammation that was found on my endoscopy.
> 
> Nikki, have you had the opportunity to test out the smoothies? I have been thinking about trying that idea.


hi biswh, no i have not had the opportunity to try out the smoothies. I really want to, but I have been trialing new medication, been on antibiotics, and I don't want to add in too much too soon. My doc and my nutritionist said to hold off on yogurt/probiotics until the antibiotics are done, and the coconut yogurt was going to be the base of my smoothie, so I have yet to try it out. I definitely want to though as I think it is a great way for me to get calories while also giving my digestive system a rest.

I have been GF for about two years (my brother and sister are also gluten intolerant) and it helped a bit with my symptoms. It is definitely worth a try, and there's so many GF options available now. A lot of the time I find that the GF foods taste better than the gluten-full options. Enjoy Life is a really great brand - their cookies taste better than "real" cookies and I think it is because they use real ingredients in their food.


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## biswh (Apr 14, 2019)

Thanks for that recommendation, Nikki! I hope youre doing well.

Yesterday I had my manometry. They had me do a fleet enema before the appointment, and that was the only thing I didnt really like. I think the solution really irritated my colon because late yesterday afternoon I had to pass a bunch of mucus. Fortunately, today seems to be better.

The nurse who performed it was very nice. I havent got the results back yet, but I am very interested to see them. When the nurse had me try to push the probe out, it took a couple tries for me to even feel like I was pushing at all she said it seemed more like I was squeezing.


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## annie7 (Aug 16, 2002)

thanks for the update.

yes, those fleets enemas can be irritating. whenever i used one, i would always pour the solution out and replece it with water. less irritating that way.

that's good you had the manometry. hopefully you'll get your results back soon.


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## nikki-m (Dec 14, 2018)

I have also had irritation with the enemas - i also find that i pass a lot of mucus with them as well.

While the manometry is not the most glamorous of tests, it is really important and i'm glad you were able to get it done.

I have most likely failed pelvic floor PT/biofeedback for the second time. I had ten sessions with my first PT and ten sessions with my new PT. I have had zero improvement and it getting very frustrating.

I spoke with my GI on the phone yesterday and he mentioned an ileostomy to me. Before I see a surgeon though, he still wants me to get into the University of Michigan to see a really sought after specialist. The specialist is on sabbatical until October though, and they won't start making appointments for him until the end of August. Going to UoM is going to involve planes and lots of traveling for me so I really hope going through all of this is going to be worth it. I honestly don't know what the UoM doctor is going to do, we seem to have exhausted all options at this point. I just don't want to be constipated/in pain anymore. I'm sure you guys feel the same way too, but I am sick and tired of taking laxatives all the time!!!


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## annie7 (Aug 16, 2002)

oh so sorry, Nikki, that you failed PT/biofeedback for the second time. i did that too and yes, it's very frustrating especially because we work so hard at it.

if you don't mind my asking-- is the U of M specialist that you will be seeing Dr William Chey? i live just outside of ann arbor and he's the doc i saw. he really is terrific. i felt very fortunate to be his patient. at the time, at least, he was the very best gastro doc they had there and he was also head of the biofeedback department and the U of M Bowel Control Program.

sorry this involves a lot of travel for you but it's worth a try.


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## nikki-m (Dec 14, 2018)

annie7 said:


> oh so sorry, Nikki, that you failed PT/biofeedback for the second time. i did that too and yes, it's very frustrating especially because we work so hard at it.
> 
> if you don't mind my asking-- is the U of M specialist that you will be seeing Dr William Chey? i live just outside of ann arbor and he's the doc i saw. he really is terrific. i felt very fortunate to be his patient. at the time, at least, he was the very best gastro doc they had there and he was also head of the biofeedback department and the U of M Bowel Control Program.
> 
> sorry this involves a lot of travel for you but it's worth a try.


It is actually Dr. Chey!!!! My gastro speaks very highly of him and I have read a lot of his papers - from what I can tell he seems to really know his stuff. My GI said it is worth the trip to Michigan (I'm from NYC - and I am very fortunate to have an amazing hospital/GI team here) because Dr. Chey may know of another drug/treatment that's in clinical trials that he does not have access to. My GI really wants me to try literally every option available before surgery, which I appreciate, but I'm also frustrated because I just want to get better.

I'm glad to hear that you have such great things to say about Dr. Chey. I know he's a busy guy, but I wish I could get in to see him sooner!


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## annie7 (Aug 16, 2002)

oh Nikki--i am SO happy you will be seeing Dr Chey!!!!! if anyone can help you, he most surely can. he's a truly wonderful doc--knowledgeable, caring, big on research and clinical trials, very easy to talk to and he totally gets this--he understands how miserably we suffer with all this. and his whole staff is terrific, too. you couldn't ask for better.

and yes, your GI is right--he very well may know of another drug(s) that could help you that is in clinical trials. in addition to zelnorm, which should be available soon, there are a number of C meds in the pipeline. if you haven't already seen it, check out this topic:

https://www.ibsgroup.org/forums/topic/225866-drugs-against-c-in-the-pipeline-with-updates/page-1

yes, i wish you could get in to see him sooner, too. too bad he's on sabbatical right now. when they do make your appointment, make sure and get on a cancellation list so you can get in to see him as soon as possible. good luck!


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## biswh (Apr 14, 2019)

nikki-m said:


> While the manometry is not the most glamorous of tests, it is really important and i'm glad you were able to get it done.
> 
> I have most likely failed pelvic floor PT/biofeedback for the second time. I had ten sessions with my first PT and ten sessions with my new PT. I have had zero improvement and it getting very frustrating.


I am so sorry to hear that you haven't found relief from biofeedback, Nikki.

It took a while, but I have finally received the results from my manometry. I could post the numbers as well, but the summary is pretty consistent with what I've been experiencing:

"The rectal sphincter resting pressure is* Above Normal*.The rectal sphincter squeeze pressures is *Above Normal*. Relaxation of the sphincter during the bear-down maneuvers is

*paradoxical*. Rectal pressure during cough effort: normal. Rectoanal inhibitory reflex is present. Sensorial perception is *abnormal (delayed)*.

My GI has placed a separate referral for biofeedback, but I am also working with a pelvic floor therapist in the meantime. In my second session, while I was generally less tense than the first time, I still struggled to tell when my floor was "relaxed".

I am still not taking any medications at this time, since my body doesn't seem to be responding to them. I have started doing 30 min - 1 hour of yoga a day, and I believe this has helped with my motility and relaxing my pelvic floor. I am definitely still constipated-- I think you were right, Annie, when you suggested that this was why I was bloated, though I also think part of it may be from stress/inflammation -- but I have been managing to have 1-3 large bowel movements/day, so I am never really sure how backed up I am at any given time.

I have learned that my body cannot really handle granola or mushrooms. They've been coming out the same way they go in.

I am seeing an integrative doctor next week, and I'm hoping they can give me more advice on diet and supplements.


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## annie7 (Aug 16, 2002)

thanks for the update. i was wondering how you were doing.

at least you are able to have 1-3 large bms a day without medication- even if it feels incomplete, that's better than not being able to go at all.

yes, sounds like yoga is helping--good idea!

biofeedback should be able to teach you how it feels when your pelvic floor muscles are relaxed. it took a while, but it did that for me. then it made it easier for me to do the pelvic floor relaxing exercises that my biofeedback PT gave me to do.

good luck with your appointment with the integrative doctor. thanks for keeping us posted.


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## nikki-m (Dec 14, 2018)

Hey guys - was away on vacation and then went to a wedding so I was kinda busy!

Just an update: i am finding that low fiber has been helping me. I am embarrassed to say this, but, I have been trying to eat baby food as opposed to just regular vegetables and the pureed pumpkin seems to be sitting well with my intestines. I am thinking low fodmap/low fiber/pureed stuff is the way to go. I really want to eat cantaloupe (one of my fave fruits - that happens to be lowfodmap and low fiber) so I am going to steam it and the puree it to try. I also brought baby food carrots and baby food green beans to try. I am hoping this way, it will be easier to get a more diverse diet because nutritionally, I am definitely lacking and I know that is going to begin to cause other issues.

I also have an official diagnosis of Joint Hypermobility Syndrome and at the wedding, my parents were at a table with another family whose daughter has JHS/Ehlers Danlos. My mom told me I had to speak with the daughter (who was also at the wedding) and WOW. It was so interesting to speak with her because we had so much in common and just all of my medical problems and my life started to make sense. The daughter told me to be prepared for an EDS diagnosis because of our similar symptoms and "party tricks" that we can do.

I am a religious person, and I am thinking my parents were put at this table by God.

I am seeing a geneticist in October (this geneticist specializes in JHS/EDS) so hopefully this will shed some light and I can get an official diagnosis. I know that the treatment of EDS is based off of symptoms, but it would be really validating to have something that would explain all of my medical issues.


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## annie7 (Aug 16, 2002)

glad to hear that your low fiber diet is helping. that helped me quite a bit. eating baby food and pureed food is a good idea. i remember posts from other people who said that eating baby food helped them.

so sorry to hear that you have EDS. i do hope you can find a good doctor who can help you manage it.

there's an EDS support on Inspire if you're interested:

https://www.inspire.com/groups/ehlers-danlos-syndromes/

good luck with everything.


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## biswh (Apr 14, 2019)

Nikki, good to hear from you! I am so glad that you are on your way to getting some more answers, and it is amazing that you were able to connect with someone who had a similar experience to you.



nikki-m said:


> Just an update: i am finding that low fiber has been helping me. I am embarrassed to say this, but, I have been trying to eat baby food as opposed to just regular vegetables and the pureed pumpkin seems to be sitting well with my intestines. I am thinking low fodmap/low fiber/pureed stuff is the way to go. I really want to eat cantaloupe (one of my fave fruits - that happens to be lowfodmap and low fiber) so I am going to steam it and the puree it to try. I also brought baby food carrots and baby food green beans to try. I am hoping this way, it will be easier to get a more diverse diet because nutritionally, I am definitely lacking and I know that is going to begin to cause other issues.


I have also been doing the pureed (or at least very well cooked) vegetables thing for some time now-- about the only fiber I consume raw are fruits like blueberries and strawberries, and smaller amounts of granola/brown rice. I do think it is easier to digest. I have even found that I can consume small portions of things like beans without feeling more bloated than usual if they are refried (ie more "mushy" and without solid pieces of bean) and take a digestive enzyme. I still can't have too much because then I get gassy, but small things like this have allowed me to enjoy stuff like mexican food again, at least for now.



annie7 said:


> good luck with your appointment with the integrative doctor. thanks for keeping us posted.


The integrative doctor was a lovely woman. We are going to start with a stool analysis to see how my bacteria is doing and if I am digesting things properly. One big thing I haven't tried yet is probiotics, and while I know that the evidence is mixed at best, I'm thinking it might be worth a shot. She also recommended an acupuncturist to me, for both my anxiety and as a possible way to help my digestive issues.

Yoga has been a game changer, honestly. It is a great way for me to stay active during the summer, as it gets quite hot where I am and makes it hard to get outside and move around.

I follow along with a youtube channel called "Yoga with Adriene" for 30-45min every morning after breakfast-- it gets my heart pumping, puts me in a good mood, and sometimes I even have a BM after! (lol.) Another thing I have learned is that laying on my stomach on the floor and twisting my hips side to side is both a good way to get things moving and helps to get rid of a lot of trapped gas.



annie7 said:


> at least you are able to have 1-3 large bms a day without medication- even if it feels incomplete, that's better than not being able to go at all.


oh yes, I agree, absolutely. I am finding that without osmotics/medication, my BMs feel more...real, I guess? Obviously the incomplete evacuation and continuing constipation is very frustrating-- and if I ever get the urge outside of my house, using a public bathroom with pfd is a nightmare -- but overall I definitely prefer this experience to where I was at a few months ago...I was taking 3-4 doses of miralax a day. Tbh, I hate miralax.

anyway, sorry for rambling. so glad to have this group here to talk to.


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## annie7 (Aug 16, 2002)

thanks for the update, biswh. i'm glad that your integrative doctor was so helpful and that she is going to have you do a stool analysis test. that should be useful.

and yes, do give acupuncture a try! that's a great idea. i go to acupuncture and it's really helped my migraines and well as some other problems iv'e been having. and yes, it can be effective for anxiety and well as ibs and other digestive problems.

that's great that yoga is working out so well for you!

have you started biofeedback yet ? hopefully that will help.


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## biswh (Apr 14, 2019)

annie7 said:


> have you started biofeedback yet ? hopefully that will help.


yes and no-- I'm still waiting for the PT referral from my GI to go through, but in the meantime I've been working with a pelvic floor physical therapist that my PCP referred me to. She doesn't do rectal biofeedback or balloon training (she's not certified in that), but she does internal vaginal stretching to help relax my pelvic floor muscles. She has also been having me practice "bulging" properly while her finger is inserted so that she can give me feedback on how my muscles are moving. She also has a biofeedback machine (that is inserted vaginally). We've used this a few times-- sometimes it's helpful to see what "relaxing" vs "contracting" feels like, but I think the internal work has been more beneficial for me. I am improving, in that I am at a lower resting tone (less tense), but I'm still struggling with consistently being able to relax and bulge properly.


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## annie7 (Aug 16, 2002)

that's too bad that it's taking so long for your PT referral from your GI to go through. but it's good that you've been getting some benefit from working with the PT that your PCP referred you to.

have you seen this video about how to have a bowel movement without straining? it was made by a pelvic floor PT and the tips and advice she gives are a lot like the ones my pelvic floor PT gave me. especially important is her advice to "make your waist wide" and push from there, not from your rectum


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## nikki-m (Dec 14, 2018)

biswh - My integrative doctor did a stool analysis to check the bacteria and how my digestion was doing and it was quite useful information. However, the probiotics that he gave me only made my constipation worse. But any time I have tried a probiotic, it has done that to me. I hope you are different and have success with them. My brother had big constipation issues (that the integrative doctor fixed) and the probiotics helped him a lot. Everyone is different!! My brother takes a couple of supplements, and his constipation is cured. He eats whatever he wants and has no issues anymore. Which is very encouraging. I really, really hope you begin to see success!

I have been having a lot of difficulty. My constipation seems to be getting worse and mag citrate - my rescue med as I call it - seems to be becoming an every day med which really scares me. I take magnesium oxide (oxypowder) at night and linzess in the morning but the linzess seems to be less and less effective. I do not take a whole bottle of mag citrate, just like 1/3 of it but I still feel as if that is a lot. Today has been very difficult (I am ovulating, which is probably why) but I'm still suffering. I contacted my GI doctor and asked him what to do.

I have been having great difficulty getting in to see Dr. Chey, so my GI referred me to Dr. Wald at the University of Wisconsin (Madison). A nurse from his office just called me back and took a complete history that she is going to discuss with Dr. Wald so that way he can determine if he can help me. I don't want to fly out to Wisconsin only to be told "keep doing what you're doing." I think that would emotionally destroy me to be honest.

What's also scary is that the thought of getting an ileostomy almost seems liberating. The idea of never having to take linzess or oxypowder again and to never be constipated again is such a happy thought. Considering I have an extreme fear of anesthesia (I broke my jaw in the 9th grade and refused to have surgery for it because of my fear, I also need my wisdom teeth removed and have not done that due to my anesthesia fear) even the fact that I'm considering surgery is huge for me. I have not seen a surgeon yet and I know that it's a really huge step. I'm also realistic to know that an ileostomy is not all unicorns and rainbows, and that I'll most likely be trading my current issues for new issues. It's just a lot to mentally grapple with.


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## annie7 (Aug 16, 2002)

Nikki i am so sorry to hear that things are getting worse for you.

have you tried taking linzess closer to eating breakfast--like 5 or 10 minutes before breakfast or even with breakfast instead of taking it 30 minutes before as prescribed --the "food effect" as it's called. generally speaking, the closer you take linzess to eating, the faster it works and the more D you have. when i took it with breakfast, i had D on and off for about four hours. definitely not ideal if i had to go anywhere but it did work.

i do hope your gastro doc has some answers for you. Dr Chey had me doing half a colonoscopy prep every week in addition to taking laxatives daily just so i wouldn't get too backed up.

i forget--have you tried motegrity (prucalopride)? and zelnorm (tegaserod) is now available. you could try that. that worked for me.

sorry you're having trouble getting in to see Dr Chey. hopefully Dr Wald can help you.

that's too bad you have such a fear of anesthesia. i don't suppose this helps but i've had a number of surgeries and procedures and have been under anesthesia a lot of times with absolutely no problems. have you talked to your doctor about your fear? maybe he/she can reassure you.

feel free to PM me (or we can talk on the board) if you want to discuss getting an ileostomy. it certainly did give me a much better quality of life.

i do hope things get better for you. take care.


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## nikki-m (Dec 14, 2018)

annie7 said:


> Nikki i am so sorry to hear that things are getting worse for you.
> 
> have you tried taking linzess closer to eating breakfast--like 5 or 10 minutes before breakfast or even with breakfast instead of taking it 30 minutes before as prescribed --the "food effect" as it's called. generally speaking, the closer you take linzess to eating, the faster it works and the more D you have. when i took it with breakfast, i had D on and off for about four hours. definitely not ideal if i had to go anywhere but it did work.
> 
> ...


Hi Annie - thank you for the long response. No, I have not tried motegrity or zelnorm. My GI doesn't think they will work for me (I have no idea why he thinks that). I really trust my GI so I'm just going to go with his opinion on the medications. I usually wait 25 mins to eat my breakfast after taking linzess, this morning I waited 20 minutes so I will see how that works.

I had a colonoscopy and endoscopy under the anesthesia/sedation and each time before the procedure I was shaking and panicking over the anesthesia, not the procedure itself! I have been lucky to have had amazing nurses who have helped to calm me down before that. I am also a type A personality who likes to be in control of things so I think the whole just letting someone else have total control over me in such a way also freaks me out. I have spoken about this with my therapist and this is something I am working on.

Even though I'm 27, my parents are very much involved with what is going on and they are very against any type of major surgery. There is still a lot of stigma surrounding ostomies and since they are in their 50s they very much think my life will be completely over if I get one done. I have tried explaining to them that it may only help me live a better life, but they are very stubborn people.

A nurse from Dr. Wald's office called me and spent 35 minutes on the phone with me taking a very detailed history. She was absolutely wonderful. She said she was going to bring it to Dr. Wald so he can make a determination if he can help me or not. That made me feel good because I don't want to make the trip out to Wisconsin for nothing.

Thank you for offering and being so open about your ileostomy. I have a lot of questions, and I am going to message you! I so appreciate your offer to help.


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## annie7 (Aug 16, 2002)

Hi Nikki

i really don't understand your GI's attitude toward motegrity and zelnorm. i would think he'd at least give you some samples to try especially if he's talking ileostomy. you'd think he'd want you to try everything first before going that route. and besides, they really might help you. zelnorm helped me. they are prokinetic meds--they act much differently than linzess, trulance and amitiza. hopefully Dr Wald will have you try them. when i saw Dr Chey, prucalopride (motegrity) was not yet available here in the states so he was willing to write a script for it for me so i could buy it from a canadian pharmacy.

good luck with linzess. if 20 minutes doesn't work, try 15 or 10 or 5 etc...

that's good you're working on your fear of anesthesia with your therapist. hopefully that will help.

i'm sorry but i think that's really a shame about your parents' attitude toward an ostomy. there is no stigma in having one. would they rather see you continue to suffer like you've been doing for the rest of your life?? i just don't understand that--i really don't . they obviously don't understand how wretched it is living with chronic constipation.

that's good that Dr Wald's nurse was so helpful. and yes, hopefully he can help you.

good luck with everything.


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## aries_wmn (Apr 28, 2019)

I live in Madison WI, my ex-GI dr was at the University of WI Madison Health Digestive Health Center. It was not a Dr. Wald though. TBH it was not a great experience. But it's a big digestive health center, but you may have better luck with a different doctor. If they go there I hope they can help you.


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## nikki-m (Dec 14, 2018)

annie7 said:


> Hi Nikki
> 
> i really don't understand your GI's attitude toward motegrity and zelnorm. i would think he'd at least give you some samples to try especially if he's talking ileostomy. you'd think he'd want you to try everything first before going that route. and besides, they really might help you. zelnorm helped me. they are prokinetic meds--they act much differently than linzess, trulance and amitiza. hopefully Dr Wald will have you try them. when i saw Dr Chey, prucalopride (motegrity) was not yet available here in the states so he was willing to write a script for it for me so i could buy it from a canadian pharmacy.
> 
> ...


hi annie - i'm glad to hear that the zelnorm helped you a lot. I have really poor reactions to certain types of medications, maybe that's why my GI is hesitant to have me try the motegrity or the zelnorm.

I tried eating 20 minutes after taking the linzess instead of my usual 25 minutes, and that did seem to help with some of the effectiveness! I'm going to do the 20 mins again this morning.

I do really well with lamb chops so yesterday I brought ground lamb to make myself lamb burgers and about 2 hours after I ate them I started having tremendous gas that was painful and after dinner I was extremely bloated/in pain. I was laying on the bathroom floor crying. it was awful and I don't understand why I did fine with the lamb chops, but not the ground lamb. I'm so confused and discouraged by this because the lamb burgers were so delicious!!!! I have always loved the taste of lamb so I was really happy to be eating a different variety of it.

I have been doing better with the low fiber baby food, but I am getting push back from my parents about it. My nutritionist suggested eating pureed foods because it is easier to digest, and I have been eating pumpkin and a pumpkin/spinach combination that actually tastes good (another thing I love is the taste of pumpkin). I was eating sauteed spinach every day and I think that was the big culprit behind my daily trapped gas. I know greens/fibrous foods can cause that in normal people, let alone someone like me who nothing seems to move through.

Do you have any food suggestions? I have baby food versions of green beans, carrots, and butternut squash to try next. I have a fear of eating new/different foods due to the intestinal issues so it really takes a lot of brain power for me to overcome some of this. It's such a battle every day.

I'm really hoping to hear back from Dr. Wald's office and I hope that he can help. My GI gave me the name of a surgeon to contact, and from his bio on the NYU Hospital website, he seems to be the "tough cases" colorectal surgeon. I'm going to make an appointment to see him just to get his perspective on things as well. Maybe he might have another suggestion or thing to try before we go the surgical route.

My parents just want me to be "normal" but the thing is, my body is not normal and it will never be normal. Once I stopped chasing normality, I feel like I have been mentally better. It took a long time to accept it but once I did, I emotionally felt better. Due to my limited diet, we have not been able to go back to Italy (my fam is from there) and yesterday my mother blamed me for the whole family not being able to go. I love Italy, its probably my favorite place and not being able to travel there has been heartbreaking. They have very poor attitudes towards ostomies like "they are only for old people, you're too young, no man will want to marry you, etc" - all of these things I know are not true. Honestly, I can't even think of getting married/being in a relationship right now because I feel too sick for it. Not only am I battling my own body, but I am battling them as well. The whole thing is exhausting.


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## annie7 (Aug 16, 2002)

oh i'm glad to hear that taking linzess 20 minutes before breakfast has helped. hope that continues. there definitely is a "food effect" with linzess. i read about it in the prescribing information online and tried it for myself and then i talked to Dr Chey about it. he had done lots of research on linzess and ran clinical trials on it and agreed with me about the food effect.

oh i'm really sorry all the pain and bloating with the lamb burgers--that's terrible! and yes, i wonder why that happened when you did so well with the lamb chops--it doesn't make any sense.

that's good that you are doing better with the low fiber baby food. so sorry your parents have been giving you push back about it. really, to me it seems that they should be happy that you found something you can eat that agrees with you. your nutritionist's idea about eating pureed food is a good one. baby food is pureed, so it makes sense.

as far as food suggestions--well i found that eating a diet low in fiber helped me. i ate vegetables but i just made sure they were well cooked--no raw food or salads for me. . and i did better with meat like chicken, ground beef and tender meat and tried to avoid tough, really fibrous meat. your baby food carrots and butternut squash should agree with you. i know some people say that beans give them gas. for me baked beans did, but not green beans but that's me.

yes, i do hope you hear back from Dr Wald's office soon and that he can help you. and yes, that's a good idea to make an appointment to see that C/R surgeon and get his opinion. another thing you might want to do is make an appointment with an ostomy nurse (WOCN--Wound Ostomy and Continence Nurse) if you have questions and want to discuss what having an ostomy is like and what it involves. that's what my gastro doc suggested i do. these nurses are terrific! mine was so easy to talk to and she explained everything to me and was very supportive and helpful. your C/R surgeon can refer you to one. another nice thing is that (for some reason) there is no charge to see an ostomy nurse--it's free.

oh yes--accepting the fact that we'll never be normal is very freeing.

oh that's terrible that your mother blamed you for the whole family not being able to go and visit italy! how very unfair of her!! just because you can't go (and i know you want to) doesn't mean the rest of the family can't go, for heaven's sakes!

and yes, you're right--ostomies are not just for old people and it won't keep someone who loves you from marrying you. Inspire has an Ostomy Support Board and i've read plenty of stories from young people who had to get an ostomy because they had pelvic floor dysfunction and/or colonic inertia (or cancer) and fell in love, got married, had kids--the whole nine yards. they are living happy lives.

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

i really do wish your parents would support you on all this. and yes, of course having to battle them is exhausting especially on top of everything else you're going through.


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## annie7 (Aug 16, 2002)

oh, Nikki--one other thing i should mention re ostomies. you can decide to have a temporary ileostomy instead if a permanent one. with a temp ileo the surgeon creates an ostomy but he doesn't remove your colon. that way, if you should decide at some point that you don't want the ostomy after all, you can get it reversed and go back to the way you were before...


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## nikki-m (Dec 14, 2018)

yeah my parents give me tons of push back because they are scared I am going to lose a lot of weight again. Last year in May 2018 I was down to 95 pounds (I'm 5'5") and we were all very scared. I don't think they can understand the severity of it. Even though they come to doctors appointments with me, they think I'm just constipated. I feel like no one gets it (including most doctors).

I do really well with chicken breast and ground beef too! I also do well with lamb chops. Those seem to be the three main proteins that are agreeing with me. My nutritionist said to eat the chicken twice a day and the red meats once because the red meats can cause constipation. My family is also giving me pushback on this because the red meats have more calories in them so they want me to be only eating red meats. I am slowly trying to incorporate what the nutritionist wants me to do but my family just kills me. I'll stop complaining about them now LOL.

I had no idea there were special ostomy nurses! I am also going to check out the ostomy support board on inspire. I feel like I should also watch some youtube videos from vloggers (I am sure someone who has an ostomy is vlogging about it) just to learn the terminology and such. This is a whole new world for me and I feel like even if I don't go through with surgery or anything, I want to go into my appointments prepared.



annie7 said:


> oh, Nikki--one other thing i should mention re ostomies. you can decide to have a temporary ileostomy instead if a permanent one. with a temp ileo the surgeon creates an ostomy but he doesn't remove your colon. that way, if you should decide at some point that you don't want the ostomy after all, you can get it reversed and go back to the way you were before...


Annie - I had no idea about this. I feel like I have so much to learn and I feel like I need to do a lot of research before I go and see the surgeon so I can have a list of questions ready to ask. Thank you so much for sharing this with me. I thought the colon had to be removed. This makes it feel less permanent and kinda almost like a "trial run." - it's a little less stressful than just getting a colectomy immediately!


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## annie7 (Aug 16, 2002)

you're right--- most people don't really understand what it's like to suffer with chronic constipation unless they've experienced it for themselves. and yes, a lot of doctors don't get it either. i was lucky--both Dr Chey and my other gastro doc totally did understand it and really tried to help me.

i really wish your parents would listen to what your nutritionist has to say regarding your diet. after all, she is a professional. she knows what she is talking about.

oh yes--the ostomy nurses are truly wonderful! as far as ostomies go, there is nothing they do not know and no questions they cannot answer. and they are so positive and supportive. if you decide to go ahead with surgery, definitely see an ostomy nurse beforehand. mine answered all my questions and gave me an ostomy "home skills" kit put out by the american college of surgeons--a little book on ostomies and a dvd that showed you how to put the bag on, take it off etc as well as a stoma practice model (ie a fake stoma) as well as some ostomy bags to practice with and stoma supplies like a measurement guide, marking pen, scissors, etc. it was pretty helpful. and then of course, after your surgery, your ostomy nurse will visit you in the hospital and get you fitted with the proper bag, show you how to apply it, etc. and of course your ostomy nurse is there for you after your surgery as well--any questions or problems that come up, you just give her a call and if necessary make an appointmenr to go see her.

i started reading the inspire ostomy support group about a year before i got my ostomy, when my C become unbearable and i saw the handwriting on the wall. it's a very informative, upbeat and supportive board. i learned a lot. and yes, i've heard that there are osotmy utube videos out there which are very helpful, too..


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## biswh (Apr 14, 2019)

Nikki, if you want to watch a young person with an ileostomy on youtube, I can highly recommend Hannah Witton! She got a stoma for UC, but she has lots of videos about life with her stoma and they are all pretty positive.



nikki-m said:


> I do really well with chicken breast and ground beef too! I also do well with lamb chops. Those seem to be the three main proteins that are agreeing with me. My nutritionist said to eat the chicken twice a day and the red meats once because the red meats can cause constipation. My family is also giving me pushback on this because the red meats have more calories in them so they want me to be only eating red meats.


have you tried chicken thighs? They are a bit fattier than chicken breast, which means more calories, but are still easier to digest than red meats. Or maybe some kind of fatty, nutrient-dense fish, like salmon?


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## nikki-m (Dec 14, 2018)

biswh said:


> Nikki, if you want to watch a young person with an ileostomy on youtube, I can highly recommend Hannah Witton! She got a stoma for UC, but she has lots of videos about life with her stoma and they are all pretty positive.
> 
> have you tried chicken thighs? They are a bit fattier than chicken breast, which means more calories, but are still easier to digest than red meats. Or maybe some kind of fatty, nutrient-dense fish, like salmon?


Thank you for the suggestion! I will look at her videos!

I have tried chicken thighs - they may be too fatty for me because for some reason the chicken thighs made me bloat like crazy! But that was over a year ago I last had chicken thighs, when I wasn't on all these laxatives. I haven't had salmon in forever, but I do want to eat it again. I also want to try sardines because they are easily transportable. Thank you for these suggestions!

I'm a teacher and the school year has started up again. I have had crazy trapped gas the past two days and I don't know why because I am eating low fiber and I'm eating foods that should not cause gas! It is so miserable and I feel like a blimp and I have no idea what to do! I don't know if my gut bacteria is worse after two rounds of cipro to get rid of SIBO (I have not been able to handle the probiotics my doctor suggested I take) or if it's just because of the nerves/excitement of being back at work.


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## nikki-m (Dec 14, 2018)

annie7 said:


> you're right--- most people don't really understand what it's like to suffer with chronic constipation unless they've experienced it for themselves. and yes, a lot of doctors don't get it either. i was lucky--both Dr Chey and my other gastro doc totally did understand it and really tried to help me.
> 
> i really wish your parents would listen to what your nutritionist has to say regarding your diet. after all, she is a professional. she knows what she is talking about.
> 
> ...


Thank you so much for all of this information Annie! I still need to call the surgeon that my GI recommended to me. I feel if I call the surgeon and make the appointment, this becomes very real. I know it will just be a consultation, but it still makes me very nervous.


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## annie7 (Aug 16, 2002)

oh yes, i can understand why calling the surgeon and making an appointment for a consultation could make one nervous. you could just wait awhile until you feel a little more ready to do that. although like you said earlier, it would be good to get his perspective on things and he might have another suggestion or thing to try before you go the surgical route.

have you heard anything from Dr Wald's office yet? i sure hope he can help you.


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## biswh (Apr 14, 2019)

nikki-m said:


> I have tried chicken thighs - they may be too fatty for me because for some reason the chicken thighs made me bloat like crazy! But that was over a year ago I last had chicken thighs, when I wasn't on all these laxatives. I haven't had salmon in forever, but I do want to eat it again. I also want to try sardines because they are easily transportable. Thank you for these suggestions!


That's too bad about the chicken thighs. Sardines are great, though! That's how I got into eating more fish, actually-- I'm a college student so when money is tight I know that I can rely on sardines and chicken for protein. I think soups really help me too, maybe you could try something like that? (I know it's summer and pretty hot out, but I've been sick so I've been having some soup recently). I feel like the sodium and cooked vegetables - stuff like carrots and zucchini - help hydrate my stool.



nikki-m said:


> I don't know if my gut bacteria is worse after two rounds of cipro to get rid of SIBO (I have not been able to handle the probiotics my doctor suggested I take) or if it's just because of the nerves/excitement of being back at work.


Stress definitely plays a part for me-- I've been moving house recently and I can tell it's taking a while for my bowels to get comfortable in the new space.

On another topic, I have received some negative news-- the biofeedback my GI referred me to is not covered by my insurance plan. My GI is currently out of town, but I left a message for her asking what our next step/any alternative could be. I'm not sure if this is the sort of thing I can appeal to my insurance company or not. I guess the good news, though, is that my current pelvic floor therapist says I'm making good progress at being able to relax my muscles-- I am still not really able to coordinate them properly, but she did say that I'm not really contracting anymore when I "bear down", which is good! I'm hoping though that my GI has some suggestions.


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## nikki-m (Dec 14, 2018)

annie7 said:


> oh yes, i can understand why calling the surgeon and making an appointment for a consultation could make one nervous. you could just wait awhile until you feel a little more ready to do that. although like you said earlier, it would be good to get his perspective on things and he might have another suggestion or thing to try before you go the surgical route.
> 
> have you heard anything from Dr Wald's office yet? i sure hope he can help you.


I have not heard back from Dr. Wald's office yet, I'm going to call them again next week.

I have been trying to get into see an EDS doctor since June and the office called me and said they had a cancellation for October 9th!!! It just so happens I am off that day from work for Yom Kippur so I don't even have to take a day off, and I am getting in to see this doctor much sooner than expected! I hope she will have some GI related suggestions on how to help me, and will be able to give me a more concrete diagnosis (my current diagnosis is Joint Hypermobility Syndrome). So that is some good news I desperately needed!


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## nikki-m (Dec 14, 2018)

biswh said:


> That's too bad about the chicken thighs. Sardines are great, though! That's how I got into eating more fish, actually-- I'm a college student so when money is tight I know that I can rely on sardines and chicken for protein. I think soups really help me too, maybe you could try something like that? (I know it's summer and pretty hot out, but I've been sick so I've been having some soup recently). I feel like the sodium and cooked vegetables - stuff like carrots and zucchini - help hydrate my stool.
> 
> Stress definitely plays a part for me-- I've been moving house recently and I can tell it's taking a while for my bowels to get comfortable in the new space.
> 
> On another topic, I have received some negative news-- the biofeedback my GI referred me to is not covered by my insurance plan. My GI is currently out of town, but I left a message for her asking what our next step/any alternative could be. I'm not sure if this is the sort of thing I can appeal to my insurance company or not. I guess the good news, though, is that my current pelvic floor therapist says I'm making good progress at being able to relax my muscles-- I am still not really able to coordinate them properly, but she did say that I'm not really contracting anymore when I "bear down", which is good! I'm hoping though that my GI has some suggestions.


I really want to try the sardines!! I have never had them before, but my dad loves them! I am actually going to be cooking sole tonight for me and my grandmother. I like sole a lot and it is a very light fish so it seems to work well with my intestines. I have actually been making my pureed pumpkin and chicken into a soup and it has been delicious! I have pureed carrots and green beans to try as well.

I'm really sorry about the biofeedback not being covered. Insurance companies are so incredibly frustrating. At least you are making progress with the pelvic floor PT!!! I was never able to make any of that progress, but I am so happy it is working for you!


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## annie7 (Aug 16, 2002)

Biswh---so sorry your insurance won't cover biofeedback. my biofeedback PT told me that, in her experience, my insurance wouldn't have covered it either so she coded my pfd as a "muscle spasm"--which it is--and that way my insurance covered it. it's all in the coding, i guess.

that's terrific that you are making progress with your current pelvic floor PT and that you have learned to relax your muscles! good for you! i was finally able to relax my muscles but i never was able to coordinate them.

Nikki--so sorry you haven't heard back from Dr Wald's office. yes, do call them next week.

oh that's wonderful that your EDS doc had a cancellation! hooray! hope your visit goes well.


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## biswh (Apr 14, 2019)

annie7 said:


> Biswh---so sorry your insurance won't cover biofeedback. my biofeedback PT told me that, in her experience, my insurance wouldn't have covered it either so she coded my pfd as a "muscle spasm"--which it is--and that way my insurance covered it. it's all in the coding, i guess.
> 
> that's terrific that you are making progress with your current pelvic floor PT and that you have learned to relax your muscles! good for you! i was finally able to relax my muscles but i never was able to coordinate them.
> 
> ...


thank you both for your kind words, they are much appreciated! And annie, thanks for that tip about coding; I am starting the process of trying to appeal for coverage, so hopefully that will pan out (even if it takes some time).

My current pelvic floor PT is a lovely woman, very encouraging and cheerful.

I can also report that cutting wheat/gluten has definitely had an effect...I had some last night by accident, and I am definitely much gassier and bloated this morning.


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## annie7 (Aug 16, 2002)

thanks for the update, Biswh. good luck with your insurance appeal--hope you win it!

and that's great that eliminating wheat/gluten has been helping reduce the gas and bloating--what a good idea that was!


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## annie7 (Aug 16, 2002)

Nikki--have you heard anything back from Dr Wald's office yet? i do hope he can help you.


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## nikki-m (Dec 14, 2018)

annie7 said:


> Nikki--have you heard anything back from Dr Wald's office yet? i do hope he can help you.


I have not heard anything back yet - I am going to call them this afternoon to see what is going on.

I saw my GI doc and he said to continue my current treatment regimen (magnesium oxide, magnesium citrate, and linzess) and if I cannot get in to see Dr. Wald, he said to try Mayo Clinic in Minnesota. He really wants me to get a second opinion before an ileostomy surgery. He did explain to me about how they can create the ileostomy without removing the large intestine, so that made me feel a little bit better.


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## annie7 (Aug 16, 2002)

good luck with the call back. i do hope Dr Wald can help you.

and oh yes, mayo is a great idea. that's good that your GI doc wants you to get a second opinion before having surgery.

and yes, you can always get a temporary ileostomy so you can have it reversed if you want to. good luck with everything.


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## nikki-m (Dec 14, 2018)

annie7 said:


> good luck with the call back. i do hope Dr Wald can help you.
> 
> and oh yes, mayo is a great idea. that's good that your GI doc wants you to get a second opinion before having surgery.
> 
> and yes, you can always get a temporary ileostomy so you can have it reversed if you want to. good luck with everything.


both of my parents came to the appointment with the GI and they were very supportive and them hearing about how the temporary ileostomy can be reversed if needed eased their fears about surgery as well. They also want to come with me to either Dr. Wald or Mayo, so it is good to have the support (even though they can be quite irritating at times). It was also great for them to hear that my GI believes all of my issues are very real. He explained to them that not only do I have the pelvic floor issues, but that my colon is not contracting properly. My GI is a really great doctor.


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## annie7 (Aug 16, 2002)

oh yes, it does sound like your gastro doc is a really great doctor. so happy to hear that he explained everything to your parents and that they finally understand what your problems are and that they are real and that he also eased their fears abpout surgery. that's wonderful!


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## nikki-m (Dec 14, 2018)

My GI has me drinking a homemade electrolyte solution (sugar, salt, baking soda, and potassium chloride) because I am so dehydrated from the linzess and magnesium citrate. I have stayed away from sugar for a really long time now because I know it is a trigger. My brother takes digestive enzymes (different ones from mine) and his had an enzyme in it that could digest sugar. I took my brother's enzymes last night with dinner and I didn't have the bad gas/bloating that I had been experiencing all of yesterday.

However this morning, it was so hard to go to the bathroom even with my normal laxative routine. I have also felt inflamed all day, and the only thing I did differently yesterday was take my brother's enzymes. Enzymes have bothered me in the past - I was given pancreatin and that severely constipated me as did Creon (basically the prescription version of pancreatin).

I feel like I can't win here. I did find a different enzyme that is similar to my brother's on Amazon but it is less potent, so I am going to try that. I hope it works because it is actually a lot cheaper than the enzymes I am currently taking!


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## annie7 (Aug 16, 2002)

so sorry you were having problems going today. that's miserable.

good luck with the new enzymes. hope they help.

yes, it is important to keep your electrolytes up. Dr Chey had me taking half a colonoscopy prep once a week to keep from getting too backed up. one time i got too dehydrated after doing this and ended up in the ER and then overnight in ICU with an electrolyte crash. definitely not a fun experinece. after that i started drinking pedialyte whenever i took the prep. pedialyte doesn't have a lot of sugar in it. you might want to give that a try if the homemade electrolyte solution has too much sugar for you. good luck with everyhting.


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## nikki-m (Dec 14, 2018)

annie7 said:


> so sorry you were having problems going today. that's miserable.
> 
> good luck with the new enzymes. hope they help.
> 
> yes, it is important to keep your electrolytes up. Dr Chey had me taking half a colonoscopy prep once a week to keep from getting too backed up. one time i got too dehydrated after doing this and ended up in the ER and then overnight in ICU with an electrolyte crash. definitely not a fun experinece. after that i started drinking pedialyte whenever i took the prep. pedialyte doesn't have a lot of sugar in it. you might want to give that a try if the homemade electrolyte solution has too much sugar for you. good luck with everyhting.


I will look at the pedialyte next time I am at the supermarket - I didn't know that it didn't have a lot of sugar in it. Thank you for the suggestion annie!


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## nikki-m (Dec 14, 2018)

hi everyone, just wanted to post an update since it has been a while.

in august, my nutritionist suggested that i add collagen peptides to my diet. I took half the serving, it made me super nauseous (I have a fear of vomiting so this was not good) and I kind of wrote it off as being something that didn't work.

about a week and a half ago I decided to start off super slowly to add some collagen into my pureed foods. I started at 1/4 teaspoon. I don't want to jinx anything, but I think it is helping me! I have noticed my digestion seems to be a little better - I am feeling less heavy and bloated after eating most of the time since I started taking it. I am so happy for this minor success!

I do think that the collagen is dehydrating me though and I do not know why. I do take mag cit at night and linzess in the morning, and am drinking an electrolyte solution that my doctor told me to drink. But since adding in the collagen I have definitely been more dehydrated and that has really been bothering me.


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## annie7 (Aug 16, 2002)

thanks for the update. glad to hear that the collagen is helping a bit. i'm not at all familiar with it. did you talk to your nutritionist about it dehydrating you? maybe she'll have some ideas to help with that.

any news from Dr Wald's office yet? have you decided to go to mayo for help? good luck with everything.


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## nikki-m (Dec 14, 2018)

annie7 said:


> thanks for the update. glad to hear that the collagen is helping a bit. i'm not at all familiar with it. did you talk to your nutritionist about it dehydrating you? maybe she'll have some ideas to help with that.
> 
> any news from Dr Wald's office yet? have you decided to go to mayo for help? good luck with everything.


hi annie. i called Dr. Wald's office yesterday, and still did not hear back from them. I feel like I am basically begging people to help me, which is exhausting. The Mayo might be our best bet, but their only appointment for the rest of 2019 is 11/25, which is the monday of thanksgiving and I don't know if I want to spend my thanksgiving at mayo. It's all so difficult. I wish my GI would just send me to a surgeon.


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## annie7 (Aug 16, 2002)

what a shame about dr wald's office. especially when it all started out sounding so promising--the nurse spending a lot of time with you on the phone and taking down your history etc...

and right--spending thanksgiving at mayo doesn't sound like much fun plus flying out there would be a nightmare that time of year. and they're so booked up it takes forever to get an appointment.

it would nice if you could get an appointment for a second opinion with a gastro doc who is closer to home....i think you said you live in new york? there have got to be some good gastro docs there who could give you a second opinion.

or yes, like you said, maybe your GI could just send you to a surgeon....

so sorry it's all been so hard. good luck. hope it gets better.


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## nikki-m (Dec 14, 2018)

annie7 said:


> what a shame about dr wald's office. especially when it all started out sounding so promising--the nurse spending a lot of time with you on the phone and taking down your history etc...
> 
> and right--spending thanksgiving at mayo doesn't sound like much fun plus flying out there would be a nightmare that time of year. and they're so booked up it takes forever to get an appointment.
> 
> ...


yes i am in new york and i am surrounded by great hospitals and such but my gastro i think wants me to see the best people in the country before i go to a surgeon. i appreciate it, but it doesn't seem to be working. it's just so incredibly frustrating. My GI is the best in NY and he sent me to the best pelvic floor specialist doctor in NY (that doc didn't do anything except send me to a different PT, who didn't help me either).

yes, i too was so hopeful about Dr. Wald's office because of how wonderfully I was treated by the nurse who spoke with me.

I am seeing a doctor for joint hypermobility/ehlers danlos on wednesday 10/9. maybe she will have insight because people with EDS tend to have a lot of gastro issues as well.


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## annie7 (Aug 16, 2002)

good luck with your appointment with the EDS doc. you're right--i've read that EDS people have a lot of gastro problems..... hope this doc can help you. keep us posted--thanks.


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## nikki-m (Dec 14, 2018)

So here is an update:

I saw a geneticist today and he diagnosed me with Hypermobile Ehlers Danlos Syndrome (hEDS). I met all of the strict clinical criteria for a diagnosis. The dr. is running a lot of genetic tests to rule out the other 12 types of EDS as well as a panel for cystic fibrosis. Apparently cystic fibrosis can cause a lot of the digestive and sinus issues that I have, so they want to see if I have it (I was born before the newborn screening, so I was never tested as an infant).

I had no idea cystic fibrosis could cause tremendous GI issues - I thought it was just a horrific lung disease. The geneticist said that there are less severe types that don't have a lot of pulmonary involvement, but have big GI involvement. The geneticist also gave me the name of a motility specialist in NYC. I think I am going to go and see her first before I try to go out west for treatment - NYC is home so I would much rather see a motility doctor here than have to take a plane somewhere else.

While the geneticist said that they don't know why there is so much GI involvement in EDS, it is honestly relieving to have a diagnosis that can explain my symptoms. I now have clinical proof that this isn't all in my head and that is a relief.

I am still taking my collagen supplement and I do believe that it is helping me. I also saw my functional medicine doctor today and he said that the collagen was a great thing to be taking, considering my blood work shows I am deficient in some amino acids. He is also going to start me on another SIBO antibiotic, since I told him I feel better when taking antibiotics.


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## annie7 (Aug 16, 2002)

thanks for the update.

so sorry you have hEDS . i understand what you mean about it being a relief to finally have a DX but still i'm sorry you have it. i do hope that you don't have cystic fibrosis as well. your doctor sounds like he is being very thorough with all the testing.

i so glad that your doc gave you the name of a motility specialist to see in nyc so you won't have to travel so far.

good luck with everything. hope the nyc motility specialist can help you.


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## biswh (Apr 14, 2019)

Nikki, thank you so much for the update. Like Annie said, it sounds like your hEDS doctor is being really thorough, which is always good!

I have been pretty busy recently, which is why I haven't posted much. School started back up about a month ago, so I've been swimming in homework. I had to take about a month off from my physical therapy due to scheduling, but I'm finally back in. I didn't lose any progress in the last month, which is awesome, and when my therapist does internal work and we practice bearing down she tells me I'm not contracting at all! Even though I still have to digitally stimulate, it is much, much easier to let stool and gas out. My stool consistency and form has been a little wonky at times, probably due to stress, and I still suffer from incomplete evacuation, but on the whole I feel much better than I was feeling this summer.

I have also joined a support group at my university for people with chronic medical conditions. It's been helping a lot to have other people to talk to about the struggles of everyday life.

Finally, I saw my GI earlier this week. Interestingly, even though I came back negative on the few blood tests we ran already, she would like me to consider doing an even more comprehensive test for celiac's disease. I guess this is all based upon the fact that there was some inflammation on my endoscopy-- even though I've been gluten free for a few months now, I guess she wants to do it as a way to help really determine if I am celiac (besides doing a gluten test and another endoscopy). The test may or may not be covered by my insurance, so I'm still on the fence about it. I mention this because it seems similar, Nikki, to your doctor testing you for cystic fibrosis-- apparently celiac's symptoms can be fairly mild and not make you super sick, but can still mess with your GI tract.

sorry for such a long update, lol! Life's been busy. Annie, I hope you're doing well.


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## annie7 (Aug 16, 2002)

thanks for the update, Biswh.

that's wonderful that you've making such good progress with physical therapy and that it is now easier to let gas and stool out--good for you! so glad to hear that you're feeling much better than you were this past summer.

and that's good that your GI is being very thorough with the celiac testing. i do hope that your insurance will cover it.

good luck with everything!


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## nikki-m (Dec 14, 2018)

annie7 said:


> thanks for the update.
> 
> so sorry you have hEDS . i understand what you mean about it being a relief to finally have a DX but still i'm sorry you have it. i do hope that you don't have cystic fibrosis as well. your doctor sounds like he is being very thorough with all the testing.
> 
> ...


I really hope that the cystic fibrosis panel comes back negative - I am in agony waiting for the genetic testing to come back (it takes 2-3 weeks but it has only been a week so far) .

I hope the motility specialist can help me too. The geneticist knows her, so I am assuming that she has worked with people with hEDS before. I have been doing a lot of research on hEDS and it seems a lot of people with this have severe constipation and motility issues. It feels good to not be alone and to finally be understood/have an explanation, but it still doesn't change my pain/motility issues. It's so frustrating!


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## annie7 (Aug 16, 2002)

yes, i do hope that the cystic fibrosis panel comes back negative. i really hope you don't have it.

and yes i hope the motility specialist specialist can help you, too. do you have an appointment set up with him/her yet?


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## nikki-m (Dec 14, 2018)

annie7 said:


> yes, i do hope that the cystic fibrosis panel comes back negative. i really hope you don't have it.
> 
> and yes i hope the motility specialist specialist can help you, too. do you have an appointment set up with him/her yet?


yes, the appointment is for march 4th, which is a long time away but it gives me time to work with the hEDS doctor to see if she has any ideas on the gastro stuff. she runs like the only EDS clinic in the NY area (I'm so lucky I got in to see her thanks to a cancellation - I only had to wait like 5 months) so I am just assuming that she has experience and can think differently than regular GI docs. She was amazing when I met her and had my first appointment. My second appointment is november 6th.


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## nikki-m (Dec 14, 2018)

biswh said:


> Nikki, thank you so much for the update. Like Annie said, it sounds like your hEDS doctor is being really thorough, which is always good!
> 
> I have been pretty busy recently, which is why I haven't posted much. School started back up about a month ago, so I've been swimming in homework. I had to take about a month off from my physical therapy due to scheduling, but I'm finally back in. I didn't lose any progress in the last month, which is awesome, and when my therapist does internal work and we practice bearing down she tells me I'm not contracting at all! Even though I still have to digitally stimulate, it is much, much easier to let stool and gas out. My stool consistency and form has been a little wonky at times, probably due to stress, and I still suffer from incomplete evacuation, but on the whole I feel much better than I was feeling this summer.
> 
> ...


the support group sounds like an amazing thing - I was going to a support group for people with chronic GI issues over the summer, but due to work I cannot attend the group anymore. I wish I could because speaking with people who get it is just mentally healthy. I am glad that you are feeling better and making progress! That is amazing news and I am so happy for you!


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## annie7 (Aug 16, 2002)

so sorry you have to wait so long to see the motility doc. hope they get a cancellation so you can get in to see them sooner.

and i do hope that the hEDS doc can help you with the gastro stuff. good luck!


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## biswh (Apr 14, 2019)

Hi everyone I hope you all are having a good holiday season. I wanted to come back and update this thread because its been a while.

I have been doing much better, mentally and physically. Yesterday, I was officially discharged from pelvic floor PT! I have maintained the progress Ive made and I have also gained a lot of confidence I was sorely lacking before. To keep up practice at home, my PT suggested I use a vaginal dilator. This is usually used by people who have pain with intercourse, but she thought it might help me get good feedback at home and it has! In addition to stretching my muscles, using the dilator while practicing the bulge/bear down position allows me to feel the dilator moving out of my vagina if I am doing the motion correctly. I can always come back to PT if I feel im regressing, but for now I am doing well. Ive even made a few short trips and except for missing a BM on travel days, I see to be adjusting okay.

I do keep up with the threads people are posting, but I wanted to take a moment to say thanks for all the support you all have given me. It means a lot!


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## annie7 (Aug 16, 2002)

thanks for the update! i was wondering how you were doing.

and congratulations on being discharged from pelvic floor PT--that's wonderful that you have made so much progress. yes, i've heard of people working with a vaginal dilator. that's good that it is helping. so happy for you!


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## sjtoole (Jul 11, 2017)

Have you been tested for H. Pylori infection? I went undiagnosed for years.

Even after the h. pylori was eradicated, I suffered for over a decade with severe, debilitating bloating. (so bad that I had high blood pressure and chest pain.)

I tried every antibiotic and probiotic known to man, along with every FoDMap diet imaginable, and nothing helped.

I discovered by accident that antihistamines helped a bit, particularly Pepcid and Tagamet, but still had bad bloating.

I finally discovered that non-prescription digestive enzymes largely resolved my bloating and constipation.

There are many brands available on Amazon and at health/vitamin stores, and they all pretty much contain the same enzymes in different combinations. (Ex. Protease, Peptidase, Lipase, etc.)

I have had good luck with a brand called HUM Flatter Me, available on Amazon.

They are basically the same enzymes that your stomach and pancreas produce normally, and are relatively cheap.

I take them before and immediately after I eat a meal, and they DRASTICALLY reduce my bloating.

My H. Pylori infection may have damaged my stomach's ability to produce these enzymes. I am really disappointed that none of the GI specialists that I visited even suggested this as a possible treatment!

The anti-histamines still help, but not nearly as much as the digestive enzymes.


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