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I have a temporary ileostomy and a j-pouch in terrible condition.  This year I've deal with perianal crohns for the first time, it is started to smell and I was told my white blood cell count it high.  

A couple years back I was going to have my jpouch excised, but the surgeon opted not to do it, and said I should go to Mayo / Cleveland Clinic instead.

I am scared what the CT scan will show.  If that pouch needs to come out, I will probably be referred to Mayo / Cleveland.  How does that work?  Assuming it gets worked out with the insurance, how do follow up visits work?  Surgery is one thing, but it will be very hard for follow visits.  Does the referring surgeon play any role?  What has been your experience?  

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C chiromancerMember

You need a qualified surgeon who has removed many J pouches, it can be a very tricky surgery depending mainly on the amount of adhesions you may have, and this something that is essentially unknown until surgery. If things go well the follow up could be done at a good hospital, with a CR surgeon in Peoria or Springfield. Even complications such as abscesses and such could be handled locally without much problem.  But for the basic removal I wouldn’t do it locally, though there may be a qualified surgeon(s) in Chicago I would probably go to Mayo or CC.

C

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