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?