I have had UC for 26 years. One hospitalization (caused by me discontinuing meds) and mostly managed disease. I was to the point of annual colonoscopy. In 2019, a partially obstructing tumor was found (even though scope was clear a year prior). Surgeon recommended colectomy (said my colon had been given a good run) and Mayo GI advised the same. I was 53 at the time and am still quite active. I just couldn’t quite get my head around a colectomy. I went to a cancer center and was accepted as a patient. I had a bowel resection and immediate reconnection. Surgeon felt there was enough healthy tissue to warrant saving. It wasn’t without problems, and I’m sure my UC made it extremely difficult. I had four surgeries and was in ICU. But I still have my colon and am now on Entyvio which seems to be helping. More importantly, I have zero regrets for fighting for what was best for me. I’ve met with several doctors at Mayo who still think I’m making a mistake, but this is what my choice was. It’s something I really felt strongly about, and I feel comfortable that my risk of cancer is the same as it was before.
One thing that came up in a recent appointment at Mayo was that I wasn’t the only patient with this mentality, and that research is showing risk may not be as high as initially thought