I’ve had my j-pouch 6 years. Functionally, it really hasn’t met my expectations. Over the years, I had all the usual pouch and anal tests multiple times at Cleveland Clinic and UVA Digestive Health, plus months of pelvic floor therapy with biofeedback. There was some improvement but my frequency remains 10-12X per 24 hrs and that's not good for anal happiness.
Then a huge distraction. When I turned 65 three years ago, my PSA test result was a 14! Six months later I had a radical prostatectomy at CC. Unfortunately, the cancer was also found in my right seminal vesicle outside of the capsule. It was all removed. The next step for a person with normal bowels is radiation of the pelvic area to stop any potential spread. With a j-pouch you cannot do radiation so I was stuck with one option--hormone therapy. The side effects of ADT are worrisome to me, too. With my oncologist’s support, I decided on surveillance and interestingly, my PSA started to fall slightly each quarter for a year. Then an unwelcome surprise. This past August I had a routine pouchoscopy at CC. All seemed well until the biopsy results came in showing prostate cancer in my j-pouch! A PSMA PET scan followed and it too was positive.
My gastroenterologist said my pouch would probably need to be removed. My oncologist said he recommends the least-risk option, so he said it’s time for hormone therapy.
I can’t help but wonder if now is the time to excise the pouch while I’m strong and healthy. I’m close to 70 and my pouch already requires a lot of maintenance. In fact, I’m wearing a liner in my underwear daily and Depends at night just for security. I also have fissures and butt burn that never seem to heal or go away. Plus my diet is limited even though I've tried without success to add more variety. I know that I would be able to eat a greater variety of food and drink with an ostomy.
My question to you is, what would you do next? Would you keep the pouch and go on ADT as long as possible, or would you get the pouch out now while you’re healthy?