Hey everyone. This is my first time writing as I normally just use this for support and knowledge. I need help now so any advice is great. I was diagnosed with severe ulcerative colitis when I was 20. I’m 37 now. After a billion meds and therapies( prednisone, biologics, mesalamine, etc), along with seeing polyps that could lead to dysplacia, fast forward to a year ago and my GI Doctor suggested I go to Dr Haas at Methodist in Houston to perform J-Pouch surgery to get this colon out of my body. It’s gotten better but not great. I recently came in and had another exam and now have found out that the cuff that they left is severely inflamed and hey strongly suggest pouch advancement surgery. I’m nervous. They say it’s more complicated and more risk, but Haas is still confident. Does anyone have insight with this? I got a second opinion from Dr Werner at Cleveland Clinic, and know he’s incredible but Dr Haas at Methodist in Houston is where I live. I’m scared nervous and don’t know where to go.
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A surgeon’s confidence is not a reliable indicator of his competence. Pouch advancement surgery is technically difficult to perform, and it’s an uncommon surgery, so very few surgeons have had much practice at it. At a minimum you might ask Dr. Haas how many of these he performs in a year, and whether he tracks his results. Does he suggest a mucosectomy along with the pouch advancement?
I traveled a long way from home to get my J-pouch surgery. It was inconvenient for a few weeks, but I’m very glad I made that investment. We live with our surgeries for the rest of our lives.
In the meantime, is your cuffitis being treated aggressively with medication? Many people prone to cuffitis can manage it medically, and only move to pouch advancement when optimal medical treatment is unsuccessful.
I don’t know if you’ve tried this or if you’re past this option but my severe cuffitis was successfully treated with Stelara (every 6 weeks instead of 8). My J Pouch clinician also prescribed Tacrolimus suppositories which i think seemed to help with my symptoms. The tacrolimus supps have to be compounded, btw. Also worth noting that my cuff is only 1-2 cm, the smallest they could make it.