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. 

Thank you for the reply. And apologies to the admins if this belongs in the Ostomy section, I forgot about that after I posted. 

Of course many j pouches are just great but I am not discounting someday I may have to go back because of my Crohns. 

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. 

I had my in with a ostomy but developed diversion pouchitis.

so it was either take it out or go on a bio drug. I choose the bio drug Entyvio and hope this will stay working to avoid another surgery. 

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.