I am currently taking Stelara for my pouchitis. It works really well for me.
So you went through all the surgeries just to end up on a biologic anyway?
Yes, I knew the risks (about
7-10% of us end up with CD or Chronic Pouchitis) prior to having surgery. Living with pouchitis is completely different than when I was living with UC flares. Pouchitis responds rapidly to treatment and doesn't affect my life at all.
I chose a biological because I did not want to continue to take antibiotics. Antibiotics are very effective on pouchitis.
I don't have any regrets about
my surgeries other than waiting for so many years to have it. I needed my hip replaced because of long term steroid use to treat UC.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.
Keith, did you have uppers before surgery and they were always clear? How long after take-down did the symptoms appear? I have read that CP is more common in men, but i don't know if it's true. https://www.ncbi.nlm.nih.gov/pubmed/26446071