I haven't posted anything on this group page in a long time but want to say that this site is awesome! It has really helped me to find, share and post questions and get real answers.
I've wanted to ask this question for a while. As the saying says "If ain't broke, don't fix it" or " Out of sight out of mind".
I had J-Pouch surgery back in 1997. First, the initial surgery and then 4 to 5 months later the reconnection. After the reconnection, soon after within a month I developed peritonitis and was back in the hospital having my gut reopened to take care of the infection. Then things were great for a few years until I thought I had a bout of pouchitis. I went back to my original surgeon and he did a biopsy of the pouch by taking a piece of tissue for analysis and a few weeks later was back in the hospital with peritonitis again to open my gut up again and treat the infection. My family and friends concluded that the surgeon had possibly punctured a small hole in my pouch that temporarily healed over but eventually leaked toxins into the stomach. This is where I have PTSD. I was supposed to have 2 surgeries but ended up having 5.
Fast forward 20 + years "knock on wood" everything has been great!! No issues at all. Just a few scares with seeing blood and frequency but that resolved itself and I chalked it up to something I ate or "should've" not be eating. I'm a very active person. I run, hike, ski, climb, etc... everything I did before surgery and post-surgery.
I have recently connected with a Gastroenterologist mainly because my PCP suggested that I have someone who I can go to in the event of an issue. This is what I'm struggling with. She mentioned that people who have had J-Pouch surgery can possibly develop cancer in what she called the "cuff" tissue that was left after the initial takedown where the small intestine is connected to the rectum.
She would like to take a biopsy of the tissue to check it out but I'm extremely hesitant from my experience back in the late 90's.
Has anyone who goes to their Gastro Doctor had this cuff area check out, biopsied, or heard of anyone developing cancer in this "cuff" tissue or maybe the J-Pouch itself?
Thank you for reading this long post and hopefully get some feedback about this topic