Thanks, Bill! These do not get discussed often, I agree. I will ask about them if the second pouch is awful. But there is nothing so good for UC/FAP as a well done J pouch and proper anastomosis the first time, and next best is to save that initial pouch.
I used to know a guy training as a resident who had FAP and j-pouch done before going to med school, after his father died early from colon cancer. Other than being slender, he did not seem any different than the average ortho guy. I wouldn't have known if we had not been at a group dinner once, and I saw the difference in how little he ate vs his colleagues at a Brazilian buffet. He told me then, and I never thought it would be a problem to have this after seeing him. 2 years later, I was somewhere else, getting one myself, under very different circumstances.
With a well done pouch, you really can lead a normal life. That guy is an orthopedic surgeon at a top-ranked academic center.
Here's hoping it's not too late for the rest of us to reach something better.
I happen to love the title of this thread... how many times have I said this, especially over the last two years? But life gets better,even with a badly done pouch, for a while anyway.
2 chronic leaks have created a big mess for me--hence my suggestion that problems be diagnosed and treated early--but it isn't too late for you, Erica!
I cannot state enough that, in our fractured healthcare system, patients have to look out for ourselves.