Have had it ever since I've had my J Pouch, 2007. Dr. Remzi sees no pouchitis, or any reason, maybe just weak sphincters. Sleep with a extra long pad on and a few sheets of TP on top of that. Just my life, have gotten used to it. Since I retired last year, the accidents tend to get less and less.
My son is 15 months post take down and he is on chronic antibiotics and still has incontinence. This has diminished in the last couple of months but still happens. We cannot figure out why, nor find a pattern that relates to evening food intake. Interesting to hear Remzi's theory about sphincter muscles. Thanks. I wonder if Kegals could make a difference.
Right after my surgery, and probably the first year or so after, I'd hit occasional nighttime leakage, but that went away. I can't remember my last leakage time now.
If I'm travelling and eating out I occasionally have a little bit of leakage so I will put on a depends before bed. Usually I don't really need it but it saves me embarrassment if it should happen. At home I periodically put a hospital type pad on the my side of the bed if I'm having a period of leakage. Fortunately I don't have it too often!
I am seven months out and still have leakage. It has slowed some but I still have it. I am otherwise healthy. No infections. Bear with it. I do hold up hope that it will diminish and stop some time. Richard
I'm almost 9 years out and still leak at night if I don't eat right (low glycemic works for me). I've been able to stop wearing depends and use a Kotex instead.
I leak a lot at night and my doctor says no pouchitis. Around every 6 weeks he dilates my pouch because he thinks the pouch is too narrow and this is causing leakage. I'm also on constant antibiotics
I have occasional leaks, mainly depending on what I'm eating and drinking. My GI has told me I have chronic, low level pouchitis. I have never taken antibiotics for this. How I feel, and how often I have leaks does seem to go together. Less leaks now than in the years immediately following surgery (takedown 2007).
It took me a good year or two to completely stop leaking at night, but it did get gradually better over that time. I think a big part of that was my sphincter muscles tightening over time, and also learning to live with the pouch. Not eating or drinking too late in the evening helped, as did trying to make sure the pouch was really empty just before going to bed. And if I felt the urge in the night, I never risked it!
In the 17 years I've had my J-pouch this is this 1st time if seen someone post this; glad to know I'm not alone! I only really started having this issue in the last 5 years or so. Coincidentally or not, this is also when I started having multiple hospitalizations for dehydrations. No pouchitis, inflammation or anything else they could explain it. It seems to be better at times through diet.
I am only 3 months out, so still have hope that my leakage will end. It is minimal, but I do believe it occurs more when I eat certsin things like red sauce, ice cream, spicy and more vegetables/ fruits. I feel that Hyosycsmine stops the spasms and I go hours without any leakage. At night I set alarm on my phone for every 3-3.5 hours. If I get into too deep sleep without emptying, I would definitely leak big time. So, I get up 2x during night at least. I am trying to Eat my big meal earlier and just have small amount food at dinner time. Will see if that helps.
I never leaked at night for the first 2 1/2 years after takedown. I have leaked for the past year. My sphincters are in good shape so I think it happens when I pass gas in my sleep. I will say that this has happened since I've been off antibiotics.
Doctors not offering any suggestions on this really. A bio feedback PT said "liquid equals loose" but with a restricted diet and all of the acacia capsules-- his leaks are not liquid. His cal protectin level shows no inflammation. Also, for the last few weeks the leaks seem almost nightly. So have no explanation. He is a deep sleeper, so guess that could contribute. Very frustrating. Would love some suggestions.
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