Had my pouch done an John's Hopkins in Jan 2007, and it has been a rough ride since than. I had my take down this past October, and things just have not got right still. Last Monday I got admited to Hopkins, and after an MRI, CT, and enema X-ray was not only told that I had a fistula but that I may have been missed diagonsed and that I have crohns, and that they wanted to send me home on bowel rest with TPN for six weeks than bring me back and give me a permanent ostomy.

I got transfered over to the Cleveland Clinic in Ohio for a 2nd opinion on Thursday. They went in with a scope to take a look and said I didn't have crohns but a tear/leak at the reconnect site which has formed a canal/pocket outside the pouch area. They are hoping they can fix my pouch with little difficulty.

Anyone have any insight. Worried that I might have to have a bag again or forever. The doctors seem real great here but I'm still so scared.

Thanks for the feedback.

Kristy

I just went trhough this but it was 2yrs they said I had crothns so I beg them to fix my hernia's anyhow so I could try to work because finacially I could not make it anymore when they went in they found a mess and had to redo everything all over again... I had option to going to temp again . ask them if you can have it redone and have a temp... if thats what you want..

I don't have any real insight, but I think you definitely went to the right place. The doctors at Cleveland Clinic are really dedicated to doing the right thing by each individual, and they would probably try most anything before giving you a permanent illeo again. I was worried about potential pouch failure in the future, but both my dr.s there said they try very hard, especially with women where body issues can be paramount, to keep them bag-free if that is what they want.

Sounds like they found the problem- and you don't have Crohn's! So take a moment to breathe and relax- it will all work out!