quote:Do the people with chronic pouchitis have inflammation also as a symptom - as measured through calprotectin, CRP or sed rate?
Inflammation has been seen on my scopes every year since 1995 and it is measured with visual descriptions in my reports like mild, moderate, etc. The inflammation has been in the pouch, at the pouch inlet and just above the pouch, but what is just above the pouch has been characterized as an irregular swath inconsistent with Crohn's and consistent with "backwash stool" and SIBO.
My docs have always been more concerned with where the inflammation is (location) and what the biopsies of the inflammation show. I have never heard of the measuring tools you mentioned in conjunction with my own case; they may be fairly new.
As I mentioned previously, I don't know if the diagnosis is particularly important when the treatments are going to be the same regardless of how the inflammation is characterized. What is most important is finding a treatment that controls the symptoms and the inflammation. If nothing else is working, people with either Crohn's or chronic pouchitis all end up taking biologics, so in the final analysis, the diagnosis is kind of irrelevant. There are a lot of people who go nuts over the distinction and I really don't get it. It seems to be a colossal waste of time, money and energy and I know that it was in my case.
What you should be asking the doctor is this: "if you determine it is Crohn's as opposed to pouchitis, is the treatment plan going to be any different?" And see what his/her answer is. A long time ago I asked my GI this question and he said, "we are treating you as if we are dealing with Crohn's." Yet 15 years later, I am still taking all the meds that are the "first line of treatment" for patients with chronic pouchitis (antibiotics), and they are still working. Possibly the only difference that might be made by a definitive Crohn's diagnosis is that they will be quicker to use biologics. But if the first and second line treatments are not working for someone with chronic pouchitis, guess what, they too get put on biologics.