(Jpouch 10-2014)I watch what I eat, low sugar and dairy, don't eat after 7, eat small meals,take limotil, and I assume it all helps BUT I have severe problems with incontinence that I didn't used to have. I have to wear a diaper at night and pads throughout the day. And sometimes have to change 2-4 times a night. I have spasms and urgency but sometimes very little output when sitting on the toilet, then when I lay down, it oozes out while I sleep. I always treat with flagyl and ciprofloxacin for 10 days and its instantly better. I take vsl#3, between hours of taking anti biotics. Once I stop the antibiotics the urgncy and incontinence returns. I am also on Humeria. I hate how I feel on the antibiotics and know that they won't work forever. I have a hose attached to my sink that helps wash the area otherwise I would have to shower many times a day and night. I have to put ointment on the area as it is irritated and chafed from seepage and constant wiping. At this point I am going in for a scope with a surgeon who will diagnose the cause to see if anatomical. Would like to know why I always have pouchitis when not on antibiotics. Seriously thinking that an external pouch would give me better control over my bowels. Though I had a host of problems with my temporary one. It's almost as bad as before surgery.
Anyway I feel your frustration and I hope that you get better!