There is a person on the ostomy board with CP who is on stelara, and tried antibiotics I think, and she's not having luck getting it controlled. It's nice to think, and hope, that if it happens to us, we will fall into the % that it's "easily manageable" but we have to be realistic, some people do lose their pouches over it. I hate to be negative, but i don't want to paint a false picture about the seriousness behind the decision to have surgery.
I've been thinking about
this post for the past 24 hours or so. It might be bad math but ~25% of UC patients have surgery and a smaller % of them have j-pouches (say 80% - total guesstimate) so that leaves about
20% of UC patients with J-pouches. So 10% develop CD/chronic pouchitis which would be 2% of overall UC patients (me being one of them). Say that 25% of them need their pouches removed due to pouchitis, cuffitis, construction issues or other. That would be .5% of UC patients but an even smaller % for pouchitis. I'm not trying to minimize anyone's issues here but the % is so small that it shouldn't be debated too much. Yes, it is one of the worst case scenarios for a j-poucher.
If I could go back in time I would tell my younger self to have surgery sooner, knowing what I know now about
living with chronic pouchitis.