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Ok, so I was browsing the forums and saw people who had their J-pouch removed. 

I am just a little curious, but how many of you still have the J-pouch sitting in there but have a permanent end-ileostomy as well? 

Does the pouch left behind leak? Do you feel like you have to "bear down" or get cramps like you have to "go" even though there is no stool? Do you have to pass mucous out of it daily? How often?

Some here have the "barbie" booty, totally closed up, no rectal stump or no j-pouch. Does that give problems of it's own, does it eventually heal totally? Do you still feel like you have to bear down or get cramping in the anal canal? In other words, does the sensation down under we all know as "GOT TO GO" gone after the removal, and stool passes out the ileostomy instead?  

Thanks 

Last edited by ian337
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I have had my pouch removed.  Once in awhile I get a slight sensation of a need to use it.  But overall nothing.  I have had zero problems down there.... and I am very.. very happy to say that.  It just completely heals and seals.  I have had no leaks or anything down there.  It doesn't even feel weird in my case. 

My pouch was taken out just for the reason that being in there it will still cause problems.  My surgeon would not give me an ileo if I didn't agree to have my pouch taken out at the same time.  And now I see that having that still hooked up to my rear end would just be another bothersome problem to deal with.  I'm glad it's gone.  I had absolutely zero happiness with it. 

Now... You need answers from people who left it in and have an end ileo.  I am interested in the answers.  But I bet we get some not so good stories.  May get a few.  But with me I don't think I want that end open and have an end ileo too. 

Richard. 

Your welcome.  

I don't think people with Pouches that are doing well come in here.  I wish they would.  

I wonder how many pouch surgeries are performed a year and what the success rate is? I wonder if it is even kept track of.  I wish mine would have worked.  But I tried and it was definitely not for me.  Looking back I see that now.  I am in a good place now.  No regrets. 

I wish you the best with yours.  

Richard. 

HI Ian,

I have  diverted pouch and end ileo. I got diverted 6 years ago. My life is definitely improved without the pouch. Usually pass mucous every day - for the first 4 yrs this wasn't a big deal. Although the last year or more I have increased pelvic pain and discharge from the pouch - from diversion colitis. I am currently on the fence about pursuing surgery to have the pouch permanently removed. The discharge is tolerable, but the pelvic pain is the annoying thing as I take more pain meds than I would like to. The problem is no one knows with confidence if its actually the pouch giving me that pain, or adhesions or gynaecological issues.

I am taking prednisone for arthritis now - so aiming to finish that before any surgery.

My surgeon has patients who have long term diversions - without full pouch removal. But I guess if you make that choice there is a chance you may want the 2nd surgery to remove it later on.

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