Has anyone been to the Univ. of NC in Chapel Hill for pouchitis? I am scheduled to go next week, June 5th, because the pouchitis won’t go away. Just wondering what experience anyone has had there.
Just curious how things worked out for you. I go to UNC and have been for this. My surgeon is there. They tried me on different antibiotics that gave some relief periodically. It never really went away and that was because it wasn't pouchitis at all. I had inflammation in my small intestine as well and am now being treated for a "Crohns like" disease. I was told this is incredibly rare (-10% of J-pouchers) but it does happen. So far I am responding well to the steroid and am scheduled for my first infusion of Stelara on the 3rd of July.
Dr Barnes at UNC put me on Augmentin which only seemed to dry me out extensively. I said no to Rifaximin because of the cost and I had read other reviews from this group that it wasn’t very effective. I’m on Vancomycin now which I thought was working but it only helped a very tiny bit. Like you I also have inflammation in the small intestine. Both my doctor at home and at UNC don’t think I have Crohn’s. I’m waiting to hear back from Dr Barnes for the next step which I believe will be either Prednisone or Stelara. Please Let me know how you do with the Stelara!!! I hope that all goes great for you!
Hi David - How did your infusion of Stelara go?
Hi Stephanie. Everything went just fine. Other than some tiredness I feel good. No other side effects that I can tell. The other meds have been doing their job as well so I feel better right now than I have in a couple of years.
How are you?
Hi David-I had to cancel my Stelara infusion because my mother became very ill and I couldn't leave town then. I thought I'd had an allergic reaction to Vancomycin but it was the combination of it and being in the sun so I wear more sunscreen now. Ended up going back on Vancomycin, mainly to control the diarrhea so I could delay the Stelara infusion a bit. She's doing a tiny bit better so as of today I'm waiting to hear from the UNC infusion dept. to find out when my infusion appointment is. I hope Stelara works because I've had this pouchitis for at least a year now!
How are you doing now?
Hey! Sorry to hear about your mother and I hope she is feeling better. Also sorry to hear you had to put off the infusion. I am doing great for a change. The Stelara seems to be working very well. My frequency has gone down. My stools are not water. I feel much better and am finally able to put some weight back on. I have to administer my first injection today. Hopefully it will continue to improve from here but I am definitely happy with the results. I hope you are able to get some relief soon!