I am 13 years post-op on my three stage j pouch surgeries. For about the past 6 weeks I’ve had nighttime fecal incontinence - it’s typically more like a watery leakage than an actual BM. Really hasn’t been a problem all these years til now. I’ve tried lomotil and/or Imodium also various antibiotics; also tried not eating evening meals. I’ve taken a probiotic and consumed fiber wafers daily since 2012. Nothing seems to improve or worsen this new incontinence.
Has anyone else experienced this issue so long after surgeries? I have almost no issues during the day aside from the periodic urgency to use the restroom.
Any adivce, tips or hints would be much appreciated!
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I have had that off and on, and for me it is Pouchitis. From reading other posts - that could be the culprit. Have you been on Cipro and or Flagyl?
I agree with Doug - this is often a sign of pouchitis. Occasional nighttime “events” may not mean much, but 6 weeks isn’t occasional. If neither Cipro nor Flagyl have worked individually you could try them in combination. That’s what currently works for me.
One intervention that helps some folks is a small fatty “meal” at bedtime, like a spoonful of peanut butter. This won’t fix pouchitis, though.
Yes. I failed to add that I’ve tried a combination of cipro, flagyl with lomotil and Imodium. All those together made no difference. I suspect pouchitis as well, but not sure since multiple days on those antibiotics made no difference.
Not all pouchitis responds to antibiotics. It might be time for a visit to your GI, and a pouchoscopy if you haven't had one since this started. It’s possible that a mild case of an infectious agent like C. diff could do this, but it wouldn’t be my first guess. Depending on how troublesome you find the symptoms the next medication for pouchitis would likely be a biologic, I think.
Pouchoscopy last April. I have an appointment next Tuesday. Thanks
So sorry you’re struggling with this Chad! Don’t know the solution so hoping GI dr. has some ideas or some combo of antibiotics help. I set alarm for middle of night,mince or twice, when my system is messed up until things get remedied. Maybe that would help you through! Good luck!
I’m sorry that I am so late replying. I am 20 years post op and I am having the same issues at night. I’ve tried everything. I don’t think mine is Pouchitis because that is my only symptom. Maybe someone else could chime in on that. I started to try Cipro and Flagyl just to make sure but haven’t yet. I don’t take Imodium anymore because all of a sudden it game me horrible stomach pain so I’m scared to try it again, have you tried making sure you eat dinner early and take Imodium before bed?
Pepto bismal also thickens output, which generally means less likely to leak out. Not sure if thst hurts your stomach or not but I found it useful. I also took Metamucil capsule before bed and trued to avoid late meals. Not always possible!
Another suggestion that was most effective for me whether I was traveling, wanted to sleep or be out a longer was to use an enema bottle filled with warm water, no solution! Lubricate it with Vaseline or other and insert it, squeeze water into pouch and hopefully your pouch will be more empty and less likely to leak. It was necessary for me often due to a prolapse that often blocked output I was trying to evacuate. Same principle though, get your pouch empty before bed to allow longer sleep. I’d still set alarm for trip(s) to bathroom during night. Not great for sleep but preferable to me as opposed to accident/ leakage. Good luck! This is quite the challenging journey!
Sometimes the only symptom of pouchitis is nighttime incontinence.
Thanks to everyone for the comments. Turns out my issue was directly the result of a medication I started in early December 2024. We discontinued the medication and my nighttime issues ceased.
That is great news. Happy you are better.
Great to hear!