I had a long televisit with my Doctor today, this because I was exposed to a coworker who is Covid positive and they didn't want me coming to the actual appointment. We just converted it to a televisit via the PMD App. Anyway one of the things my doctor told me is that there is emerging opinion that these post J Pouch cases of chronic inflammation developing at the J Pouch inlet, afferent loop and neoterminal ileum are no longer being viewed as Crohn's Disease. They are either a Pouchitis variant, or a new form of IBD. In any event they don't know, and we then advanced to the more important discussion of treatment.
He told me he considered taking me off Remicade and putting me on Stelara, but he thinks the downside risk is greater than the upside which is likely the Stelara working no better than the Remicade.
Therefore he has concluded as did SteveG above that we need to bring back an antibiotic into the mix, but a new one. And that new antibiotic he wants to try is Vancomyocin. Although normally used to treat c-difficile, he said he has had great results using it on his Pouch patients for their pouchitis. So I am going on Vancomyocin immediately, weaning off Entocort, and staying on Remicade. We will scope in 6 months. He said I need at least 6 to 12 months on Vancomyocin because it has both antibiotic and immunologic properties. So that seems like a long time but if I will be scoped in 6 months we will either see results or not.
He also thinks I may need to be dilated again in the future, but time will tell on that.