So I had step 1 and step 2 in 2005. I just recently went in to have my jpouch revised and the my surgeon was unable to perform the surgery. grrr so frustrating. It was suppose to alleviate my night time leakage or more like full bms while i sleep. Now im back to trying different antiobiotics, probiotics, fiber intake, etc. anyone have any suggestions. im soooo frustrated over all of this.

I'm so sorry Lysie. I'm sure you've tried everything you can - imodium, lomotil, metamucil wafers, bulking foods at night (rice and bagels work really well for me).... The only other thing I can think of is setting an alarm clock for various times during the night to wake yourself up.

kathy

Where did you go for revision? In these sorts of cases, it really can make a difference. For pouch salvage/revision, you really need someone with specific experience in this. You may well need a second surgical opinion.

Jan

I had two successful J Pouch revisions in 1998 and 2000, albeit to deal with a different problem, that being incomplete evacuation rather than nighttime incontinence.

Lysie, as mentioned above the problem could be due to having a spasmodic pouch which can be controlled through lomotil and/or levsin and/or donnatal. I take one donnatal at bedtime every night and have no problems.

Jan, my revision sergury was performed by dr. fleshner at cedars sinai. he has a lot of experience with revisions. He said the problem was my jpouch has grown to some bone. he was not 100% positive it would have been successful. he said there could have been a chance he could cut a nerve and kill my intestine leaving me wiht a permo illeo. and im not ready for that.

Sounds like a very good surgeon. However, a second opinion in these sorts of cases always is a good idea. There are many good docs in the LA/San Diego area.

There's also USC (Dr. Beart and his team) and Scripps (Dr. Launer and his team) to name a couple.

Jan

Thanks Jan. I actually started eating a metamucil wafer before bed and I havent leaked in over week. I cant believe it. I am so releived and not so scared to sleep at night.

Great news that something simple is having such a profound effect for you. Fingers crossed that it lasts!!

Jan