Skip to main content

Reply to "How did you decide it was time for surgery?"

None of the biological drugs was around when I had to have surgery, but the main reason for my decision to have surgery was dysplasia and my then conservative long time GI doctor recommending it and a surgeon in New York City he said was the best in the USA. And from the time that diagnosis was made until surgery happened was around 9 months due to a variety of factors, and in that time I deteriorated BIG TIME. When my colon was finally removed my surgeon told me it dissolved in his hands from all the inflammation as he took it out. That colon could not be preserved for all of the post surgical stuff they usually do with it. They just threw it away. He told me I was very close to the dreaded toxic megacolon, and my surgery, while elective, couldn't have really waited any longer. At the time I was taking 60 mg of prednisone daily which obviously was not working. Other meds that had been attempted and failed at that time were cortisone enemas, azulifidine and Imuran. Remicade, Entyvio, Stelara didn't exist at that time. Because I have had good success with Remicade now and it's also being used to treat UC, I suspect if it had been around in the late 1980s and early 1990s, it might have saved me from surgery. But it wasn't and it didn't.

I think in retrospect I probably should have made the decision to have surgery earlier than I did. Then once I made the decision, which I dragged my feet on, logistical issues happened: having to finish law school and take and pass 2 bar exams; getting recommended to the best J pouch surgeon in the USA at that time and then waiting for months to get an appointment with him; and then waiting more months to first lose the weight he had mandated I lose, and then get surgery scheduled. A lot of people here do not understand how rapid deterioration can happen when meds are not working. You don't have to feel like you are going to die to be on the verge of toxic megacolon. I didn't - and I was. So my concern is always there when I read posts by someone who says no meds are working. Once you reach the end of the line with meds things can get dicy quickly, and I found this out when I had surgery "just in the nick of time."

Last edited by CTBarrister
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×