How do u know now u would of had chronic pouchitis??
Both my GI doc and surgeon said that it was highly likely given how stubborn my inflammation was.
Mark I wouldn't let a flare go on for 5 years. In 32 yrs of disease never went beyond few months. How do u know a j pouch would fail??? It's ok to be scared. Don't think a surgeon would say you are going to die unless you were in hospital and they couldn't stop bleeding
My flare wasn't 5 years straight. I had break periods, but not true remission. Even though I suffered a lot, I'm in remission now and still have my colon so it was worth it. Others are not so lucky.
My surgeon said that more than 70% of people who get colectomies do it electively because they can't tolerate the low quality of life anymore. That means only 3/10 of people he sees are truly having their lives threatened by a flare. I was one of those 3/10 but I still chose to hang on and in my case it worked out.
Both my GI doc and surgeon said that there was high probability I'd have pouchitis because of my presentation. I guess they've seen enough cases so they know. Chances of pouch failure were high in my case which meant I would've ended up having many surgeries before ultimately getting a permanent ileostomy. So it was more worth it for me to try hanging on.
Back then I tried barely any alternative medicine, all I did was SCD and it wasn't working. Once I got some alternative therapies I got my life back.