My C Reactive Protiens were elevated with pouchitis, and of course, inflammation was also evident upon scope. My Vit D levels were also low, although they don't know enough yet to know if low Vit D leads to inflammation or if inflammation leads to low Vit D.
Agree that diagnosis is pretty arbitrary. If antibiotics/diet don't help it suggests the cause of inflammation is not bacterial overgrowth in nature, so next they try using the IBD drugs, because it all looks, feels and responds (so far!) as if I have IBD of the pouch-technically the pouch is not large intestine, so technically they can't call it "UC" but at least for me, where there has never been any involvement in small bowel or above it also doesn't fit with "Crohn's per sey either. Doc said once first line pouchitis treatments fail they will treat me "as if I have Crohn's of the pouch" but I have never been given a "Crohns" diagnosis. I basically consider myself to have "IBD of the pouch." Those of us with "old" pouches that are now starting to flare up are kind of breaking the ground on this.
Agree-The treatment is more important than the diagnosis.