Skip to main content

I have had my J-Pouch for 13 years now.  All in all it has been great.  Only a few cases of pouchitis.  However; the past year I have been experiencing night-time leakage.  It occurs between 3-4 AM, not every night but almost.  Not sure why now this is happening.  I have not had this issue in 12 years and now.... bang.  Any ideas??  Suggestions??

 

Original Post

Replies sorted oldest to newest

For me, Immodium has worked fine, never any cramping.  I also do kegels every day-not as often as in the beginning, about 5 sets of 10.  I am also only a little over 7 mos. from takedown.  The only other problem I have is gaining weight.  My primary care doctor saw me today and said to get some fat on me.  I really need to look at healthy ways to get that going.  My diet has always leaned toward less fatty foods in general, especially since my husband has to lose weight!  

Becky,

Scott F often mentions that this is a first sign/symptom of pouchitis. I was respectfully disagreeing with him last year when I started having this problem of nighttime  leakage. Otherwise, my pouch was fine. I came here looking for answers and didn't think I found a solution. More than 6 months later I had a CT scan  just prior to a surgery (unrelated to my jpouch). My colorectal surgeon came to visit me after my surgery and let me know she saw really bad pouchitis in my pouch. So there you have it, Scott was right! For me I guess I had simmering pouchitis without really knowing it. Nighttime leakage was my only symptom. Went on antibiotics for a few months, and things are back to normal again. 

21 year-old pouch still going strong!

Hope your problem gets resolved soon,

C-jay

p.s. Scott knows stuff 

I have cuffitis right now and deal with nighttime leakage. It helps to not eat late and to wear a pad in your underwear. Also, my leakage is worse f in extremely tired and sleep through the frequency and urges. It can actually be a relief also Bc at least my pouch is getting emptied if I'm having trouble emptying it. 

it will be 1 year next month since my takedown . i have always incontinence on most of the nights since then.i was diagnosed for mild pouchitis with pouchoscopy .My doctor prescribed me VSL3 and  canasa suppositories .it worked for couple of weeks but then stopped working .i do get couple of weeks when i dont get any leakage but then it starts again .usually i think it happens when i am constipated in day or when i sleep after a  super tiring day.I don't know how to handle this .its very embarrassing .

NISH123, you may have both cuffitis and pouchitis now. In that case, antibiotics would be appropriate. Also true if you have bacterial overgrowth.

If it has been a long time since you saw your doc, a new exam is in order. Otherwise, a phone call may get you a script for an antibiotic. If it is ineffective, then you may have more to discuss at a face-to-face appointment.

My GI doc is super busy, so he is very responsive to emails and calls.

Jan

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×