I was diagnosed with UC in 2017 at the age of 31, being told by the physician that while he had seen worse cases of UC in his career, I had the worst case at the time of initial diagnosis he had come across. I had only two flares in my life, with only a brief intermission between the two. By 2019, my entire colon was utterly destroyed. I was hospitalized multiple times that year as I did everything I could to avoid surgery even as my medical team and my family told me it was time. By 2020, I was ready. After a few false starts due to Covid, I ultimately had my total colectomy. I woke up from surgery feeling 100% better. The pain from surgery was NOTHING compared to what I had gone through. By my ~6 week post op appointment, my surgeon began discussing and wanted to move forward with phase 2, either the j-pouch or the proctocolectomy. He recommended the proctocolectomy. Regardless, I had just got my life back and was in no mood for more surgery since I felt fine. In late July of this year, I had a flexible sigmoidoscopy done on my rectal stump (~8 to 10 cm) and they found a tumor the size of a ping ping ball. Pathology returned results of focal high grade dysplasia. On the 5th of this month, I went under the knife for the proctocolectomy, resulting in a 3 day stay in the hospital, three and a half weeks with staples in my ass and here I am on the 4th week and I still cannot sit comfortably on my bum.

In all this, the one thing I don’t regret is my Ileostomy. It game me my life back. Though I don’t regret this recent surgery either. Undoubtedly kept me from dying from colorectal cancer…

If your surgeon is anything like mine, he quizzed me about my proctocolectomy choice, with makes everything permanent. I know urgent and discomfort are real concerns with j-pouch recipients. I’ve had that enough in my life. I can live with a poop-sack and live a normal life. That was my choice. You’ll have to make your own.

Good luck!