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

Howdy folks! I have the exact symptoms as you described here. I just posted a new feed on it before seeing this one. I'm on no meds at the moment relating to Pouchitis. It started 2 years ago. Every morning now I wake a hude mess. Had my pouch since 2000. Been doing Kegel exercises and deep breathing to strengthen the pelvic floor and rectum. No improvement so far. I'm thinking it might just be age and weakening in that area... Looking at a permanent ostomy at this point put it will be a huge surgery for me.... Anyone have any luck with this?? TIA

@gtm501 I'm sorry your are going through this. I had my j-pouch removed in 2002 because of chronic pouchitis, fistulas, abscesses, and leakage. It turned out (in 2015) that I actually had Crohn's Disease not UC and I started on Humira then.

I've had really good success with my ileostomy - I am 64 and I hike, do yoga, lift weights, swim, scuba dive and travel.

When they removed my j-pouch they also did a hysterectomy and oophorectomy, so it was a really big surgery. But I was in pretty good health going in and the recovery was unremarkable.

Do you have a colorectal surgeon or GI you are talking to currently?

@susanf8 - I do have a GI at Mayo and have an order on file to see a colorectal surgeon but havent't scheduled anything yet. The colorectal surgeon that I had for my jpouch may not be there anymore, I have not had any surgery related issues since my jpouch in 1996. Currently just trying to wrap my head around the idea of a possible ileostomy if this pouchitis & incontinence continues.

@janspons Yeah, going to an ileostomy was never what I really wanted, but my quality of life is SO much better.

I did find that the permanent ileostomy was much easier to manage than the temporary ones I had.

@susanf8 - always good to hear some positive experiences.

@annpeters The cleaveland clinic does KPouch

Since my May 3, 2026 post I have improved. Before I was taking pepto every time I had a BM in an effort to change diarrhea to regular BMs. It never worked, hence incontinence. Since then I have started taking prednisone (15 mg) daily for high ESR and CRP, and my GI thinks now I have ulcerative colitis so I am on 2 mesalamine tablets twice a day. Things seem to be better all around. I am making a long story short; there were a lot of blood tests, anemia and iron transfusions. But the changes has resulted in much less diarrhea.

@lisalucier - I do sleep on the pads as well, just in case, so I don't have to get up and change bedding, I haven't had an accident that bad yet. I usually wake up about every 2 hours during the night, sometimes good, sometimes not so good. It is exhausting, I usually get my best sleep from about 5am - 8am. My new GI wants me to stay on the vanco (plus the Tremfya) until I go back for another scope this fall. Its weird because I don't have any pain or blood, I do have some cramping occassionally and daytime is not really a problem, I wear pantiliners. But just can't get the nightly incontinence under control, it is so frustrating.