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

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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Moderator
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)
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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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phannenstiel | @phannenstiel | 3 days ago
In reply to @janspons "Looking for others with a jpouch just for general discussion. Mine is 29 years old. I..." + (show)
Profile picture for janspons @janspons

Looking for others with a jpouch just for general discussion. Mine is 29 years old. I have had minor issues, on the same medications for years, but in the last 1-1/2 years, I have started stool leakage while sleeping. I take 3-4 loperamide, Metamucil & an antibiotic in the evening, and still have leakage which I'm not sure if it is due to gas or if something else is going on. I am due for a pouchoscopy in a couple months along with a couple other tests to check muscle strength in that area. I know for some this is a normal thing, but has been frustrating and I seemed to just come on suddenly. Thanks in advance for any comments.

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@janspons
Just joined this group... 10 miserable years of living with UC, then Mayo changed my life. 3 surgeries later, Colectomy, J-Pouch, Takedown, I was SO MUCH BETTER. Actually, I was way better after the Colectomy, and would have been fine with that outcome, except for the full body hives, likely from the adhesive of the ostomy products.

Now, 14 years later, I'm still doing good. Really good, like the best years of my life! I still have hiccups and bumps in the road that are usually self-induced. Latest one was while on a bike trip in Croatia and I overdid it with figs and other local foods that were rich and unfamiliar to my abbreviated gut.

I use 2 generic imodium morning and 2 at night to slow things down and thicken the stool with Konsyl, a pure psyllium product that I get at Walmart and mix it up a little thinner than apple sauce after every meal (3x per day). I use calmoseptine when the butt burn rears its head, but this is relatively infrequent. I spend a lot of time outdoors as a fly fishing guide, XC ski guide and do a lot of cycling. I do a sigmoid pouch scope every three years, and there are minor lesions in the pouch, but no blood and the biopsies are always favorable. I'm really good at digging holes in the outdoors and always manage to get it done. This routine just works for me and I feel blessed to have come through the disease so well. Praying continuously that there will be no more big bumps in the road...

EP

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