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J-pouch leakage at night only: What helps to control it?

Posted by janspons @janspons, Mar 1, 2025

I have had a jpouch since 1996, basically in remission since. I have had a couple hiccups - bartholyn cyst, recto-vaginal fistula but no hospitalizations since the surgery. For the past 15 months I have had fecal incontinance, but ONLY while I am sleeping. I have 97% control while awake during the day. I cannot figure out why this is happening only at night. My meds have not changed, though maybe they need to. I was prescribed suppositories but they really didn't do anything. I am wondering if I need to try some newer meds. I have been on the same ones for about 10 years or so - azathioprine, cipro/flagyl rotation every 2 weeks, OTC loperamide, metamucil powder & gummies. I am at a loss. I know some have things way worse than I do, but this has thrown me for a loop, and I can't seem to control it. Thanks in advance for any input.

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Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 17 4:42pm
In reply to @gtm501 "Hello everyone!!! I've had a pouch since 2000. many bowel obstructions. 2 surgeries to fix adhesions...." + (show)
Profile picture for gtm501 @gtm501

Hello everyone!!! I've had a pouch since 2000. many bowel obstructions. 2 surgeries to fix adhesions. Currently have mild to moderate pouchitis, which is my norm. I'm 61 and the last few years, im getting accidents at night. sometime horrific ones. Wearing depends barely contains it... So incredibly tired of it all. Its looking like an ostomy on the horizon. I will be a major surgery for me because of all the scar tissue from all the BO's. Over 100 at this point. I've tried all the new drugs. Skyrizi worked perfectly for a month and a half and then just stopped one day. I know if I get the ostomy, they will cure colitis a year later.... I'm just reaching out for any help or news on a possible fix for UC or my accidents that started for no apparent reason. Thank you everyone.

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@gtm501, like @piki (I hope you saw her helpful reply to you), I believe @davem @susanf8 had a J-pouch removed and a permanent ostomy. Read more here:
- J-pouch Removal? https://connect.mayoclinic.org/discussion/j-pouch-removal/

I can imagine you're tired of the accidents. I know the prospect of getting a permanent ostomy isn't what you hoped for and surgery risks have to be considered. Have you discussed the surgical risks with the surgeon vs the quality of life benefits? What concerns do you have?

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gtm501 | @gtm501 | Jun 17 5:57pm
In reply to @piki "I had to get a permanent ostomy because of strictly physical problems, but it's not the..." + (show)
Profile picture for Darienne @piki

I had to get a permanent ostomy because of strictly physical problems, but it's not the worst thing in the world..a urethral catheter might just be it for me! (I have a suprapubic catheter now...100 x better.) I had the ostomy at 83 years old so you, being still a spring chicken, ought to have no problem bouncing back. (Good heavens, you are the same age as our youngest!) all best to you @gtm501

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@piki
Thanks for the response! I'm scheduling the Ostomy currently. I just cant do it anymore...

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Mentor
Susan F, Volunteer Mentor | @susanf8 | Jun 17 6:18pm
In reply to @gtm501 "@piki Thanks for the response! I'm scheduling the Ostomy currently. I just cant do it anymore..." + (show)
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@piki
Thanks for the response! I'm scheduling the Ostomy currently. I just cant do it anymore...

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@gtm501 As.Colwen mentioned,.I had my j-pouch excised in 2002. It wasn't what I would have hoped for, but it's been a good couple decades.

I found I had better wear time with a permanent (end) ileostomy.

When do you think your.surgwey will be?

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