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6 replies

Night time incontinence

L LooleyjuleMember
I have just joined this group and this is my 1st post on any related J-Pouch issue.
Hopefully, there'll be some helpful advice out there to help me.

My J-Pouch has been fully functional now for 16 months, however I am still experience night time incontinence. Normally only a few times a week, sometimes I'll go a number of nights with nothing, and then other times I'll have the incontinence every night for a few nights in a row. I'm so embarrassed by it, I don't want to discuss it with any friends or family. I have mentioned it to my doctor previously and he did put me on Flagyl, although he said because it wasn't happening every night it's unlikely to be pouchitis.

I was hoping to find out off others how common this is? Could it be diet related? Are there any particular foods that may contribute to this?

I experience severe burning & bleeding most days also - contributing to this is of course the incontinence but it's becoming quite tiresome, I hoped after 16 months these things would settle down. Not only is this inconvenient and uncomfortable, but the expense of the various aids I need is excessive - Depend night pants - Calmoseptine - various ointments to help with broken skin ;( Here in Australia, these items are incredibly expensive compared to the US, it's actually cheaper for me to buy from US & have it shipped.

Thanks for listening to me complaining, if there's anyone out there in J-Pouch Community land who can offer advice for the incontinence or even the treatment of my sore bottom, I would be extremely grateful.

Julie x
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Scott FScott FMember
Julie-
This certainly isn't normal, and it needs to be properly diagnosed and treated. Saying it's "not pouchitis" seems like an inadequate answer (heck, it might even be wrong). Has a competent doctor looked at your pouch? Felt the rectal cuff (with a finger) to evaluate you for cuffitis?

It's not crazy to try Flagyl, but if it doesn't work there are many other options. Even if it's pouchitis Flagyl doesn't work for everyone (it didn't help me at all).

If you're seeing a surgeon I think you might do better with a good gastroenterologist. Good luck!
TE MarieTE MarieMember
I agree with Scott about seeing a GI if possible. It sounds like you have cuffitis. That is inflammation and UC in the rectal cuff that can cause bleeding and acts very similar to pouchitis. I have chronic cuffitis and not pouchitis but this is what I've been told. It can be diagnosed without a scope by feeling it as it is right inside the anus and is where the j-pouch is attached to the rectal cuff. It feels inflamed and is where there is a suture line is. If you are going to check this for yourself I suggest you use a Medical exam glove with lubricant on it. It is usually treated with mesalamine &/or hydrocortisone suppositories.

Cuffitis is UC in the 2 cm of rectal tissue they usually leave attached to staple the j-pouch to so we don't become incontinent. Only a small percentage of us get UC here -- I think the booklet I got from my surgeon before surgery said 4%.

Hopefully your problem is something easier.

Take care.
MN Mark NMember
I used to have occasional incontinence issues like you and still do buy rarely. I try to eat dinner, my largest meal of the day, by 4:00PM, well ahead of bedtime. We used to eat at 6:30 or so with a 10:00PM bedtime. I also try to keep that meal light and then I take diarreaha (however you spell it!) before bedtime. On vacations we3 still eat late and eat too much so I have problems so I take some of those "adult" protective "panties" along on vacation ... Just in case!

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