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Jpouch - leakage at night only

Posted by janspons @janspons, Mar 1 7:56pm

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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Lisa Lucier, Moderator | @lisalucier | Aug 12 10:21am
In reply to @janspons "I have had a scope of my pouch, biopsies - don't have results yet, found a..." + (show)
Profile picture for janspons @janspons

I have had a scope of my pouch, biopsies - don't have results yet, found a polyp but did not remove. Then I had an anorectal manometry procedure to test my sphincter muscles & met with GI the next day. I have a MRI proctogram exam on the 28th, and a PT consult the next day. My GI wants me to try Tremfya, the injection pen since the antibiotics, azathioprine, metamucil & loperamide are not doing much. I don't have pain other than an occasional cramping, no blood, but I cannot for the life of me get my stool to bulk up. Daytimes are usually good, but nights are the issue. I have been on the same med regimen for over 10 years and has worked fine up until about Nov 2023 is when the night leakage began, and was really kind of random. Something that I tink may contribute some is my spouse got a cpap in Nov 2023, and was a horrible snorer, so I would wake up multiple times/night, and if I did I would get up and go to the bathroom. Now I sleep pretty sound, maybe too sound, I don't wake up until it is too late. Anyone have experience with Tremfya? Would love to hear from you.

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@janspons - you might also try starting a new discussion in the Mayo Clinic Connect Digestive Health support group on Guselkumab (Tremfya) https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/

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