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10 replies

Problems pooping the bed post j-pouch surgery

FM Former Member
I don't think many people like to talk about it, for obvious reason, but I'm going to assume I'm not the only person who has experienced this problem.

It has been 21 months since my final surgery and I still haven't found the magic conditions to keep me from pooping while I'm asleep. Some nights I do, some nights I don't, and I have yet to narrow down which conditions cause it and which ones help prevent it. There was a while there when I went for several months without any incident, and then follow that up with weeks of pooping everytime I sleep, even if I haven't eaten in 12 hours. Does anyone have any advice for counteracting this? Imodium? Certain foods before bed, or lack of certain foods all together? Any advice would be helpful.
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Scott FScott FMember
For me this turns out to be a sign of pouchitis, and it gets better if I treat the pouchitis successfully. Precautions vary - I'm fortunate that I haven't needed more than a big towel over the sheet, but others here use (to be blunt) adult diapers at night. I always have washcloths in reach at night. I take one or two loomotil at bedtime. Kegel exercises seem to help, too. Good luck finding a formula that works more reliably!
C CeeeeCeeeeMember
It happens to me when I sleep very soundly. Typically, I awaken prior to needing to make a trip to the toilet. It doesn't seem to matter what or when I eat that final "meal" or "snack". I just always am prepared. I wear a pad in my undies when I go to bed and keep a bed pad under me. Most of the time neither are soiled. I am ten years + post takedown.
CTBarristerCTBarristerMember
quote:
For me this turns out to be a sign of pouchitis, and it gets better if I treat the pouchitis successfully.


Same with me. Actually the only time I have had nightime leakage is with pouchitis and as soon as it gets treated it stops.

I think many unwary posters are expecting that pouchitis will hit them like a ton of bricks, like they will experience UC all over again. However pouchitis starts out very, very subtly, with these kinds of issues like nightime spotting/leakage, and can very slowly deteriorate over time. I was having pouchitis for a period of years in the 1990s before starting antibiotic treatment. In those days I was regularly buying adult diapers. It's been many years since I have had to wear any diaper because this is an issue that can be controlled.
PK Paul KnaapenMember
I'm only four weeks out from take down, so i haven't figured anything out yet, but I have the same problem. I've been wearing depends to make clean up easier. I had some depends inventory since I used to have to wear them to go across town when my UC was at its worst.

In my case, it seems like I can't get any good sleep for hours and then about 3 or 4 am when I fall into a deep sleep, I sleep right through the signal to go to the bathroom. I've tried some variations as to what and when I eat, but nothing seems to have had a positive impact yet. Doctors have me doing Metamucil, Imodium and hard cheese. On my own I'm doing probiotics and lactaid. Been doing that about a week or two with no positive results yet either.

Good luck, I'll check back in if I find something that works.
CdubCdubMember
Hi ArchAngelThomas - you're right, we don't talk about this enough (and certainly no-one warned me beforehand). Yes, it took a long time for this to stop happening to me. I dom't mean to dishearten you, but I think it was probably three or four years before it stopped happening to me, but every person is different. I would say (if you're not already doing this), try not to eat after 7pm, and try really hard to empty the pouch completely just before bed. My leakages also often happened in early morning, when I was just starting to wake up, so if you do feel the urge in your sleep, don't ignore it! Good luck, and I'm sure it'll start to improve.
kangaroo womankangaroo womanMember
I have this problem intermittently as well...usually when I eat salads or have only been consuming liquids. It usually happens in the wee hours of the morning. I sometimes feel it happening but am just too tired to get up. I think it's just something that some of us have to deal with, and it's not the end of the world. You live to learn with these things and just deal with it the best you can. There are worse things in life than a little leakage.
M MH2020Member

I don't think anybody has noted this. Sure motofen, limotil, and other drugs are good at settling your belly and prolonging times between bathroom visits...but if you are having a lot of issues and you feel it is uncontrollable, please speak with your doctor about Tincture of Opium. I've not used this is about 8-9 years, but the 4-5 years surrounding my jpouch surgery I always had a vial of that stuff in the event "normal" methods didn't work.

Tincture of Opium is basically a digestion paralyzing agent when in use. I know the word "opium" is scary but this was always an "as-needed" med for me to stop digestion issues. You don't get an altered state of mind, and it stops you up when needed. However, there are still slight withdrawals due to the type of medicine it is if you take it daily.



If other options have not worked bring it up to your GI doctor for intermittent use while you figure out ways to get things under control.

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