I have been struggling with an Rv fistula for 8 months. i have been to university of Chicago and Cleveland clinic. Both great centers for IBD that gave me good information. A big question has been if an incorrect diagnoses of uc & had crohn's all along. Chicago thinks I don't have crohns and Cleveland felt due to location of fistula they weren't sure. Both centers recommended pouch advancement or pouch redo but Cleveland said if there was uncertainty of crohns i may not have as good outcome. I went through hell last year with emergency surgery and recovery and now this fistula. I hate to go through more surgery .My quality of life right now isn't very good but what if it could be worse? can anyone let me know if they've experienced pouch advancement ? Thanks!
Hi K78, I'm really sorry to hear you are going through this. I had a pouch advancement which was done in 3 surgeries. Unfortunately, it was not successful for me and my RV came back after about 2 months from second take down. It was emotionally and physically exhausting. I ended up having my pouch removed. My j-pouch was unfortunately nothing but a nightmare for me. I have a permanent ileostomy and honestly, I finally have my life back. Oh - and Crohns was ruled out for me. I think a j-pouch just wasn't meant for me.