I was diagnosed with Crohn's disease a year ago following a video capsule endoscopy which showed bleeding ulcers in my small bowel. I also have other autoimmune conditions, and have 3 monthly injections of vitamin B12 and vitamin D. I take steroids and hydroxychlorquine daily and have 3 monthly injections of steroids by my rheumatologist. Azathioprine just made me vomit,so it was discontinued. I see my rheumatologist at one hospital and the gastroenterologist at a different hospital. I found out yesterday that despite my requests, they haven't actually communicated with each other so my gastroenterologist hasn't seen any of my test results for the past nine months.
Yesterday I had an appointment with my gastroenterologist who confused me completely. She said initially, that she had discussed my case with her colleague and felt that a lot of the issues might be functional. She then carried on by saying that because the Azathioprine hadn't been tolerated ,that maybe mercaptapurine would be better although she didn't want to use it yet.
She then said that she thought that I should probably have a full thickness biopsy of my bowel but added that because of my weight she wouldn't do that. She then said that she wished she hadn't taken my case on as it's so complicated.
So, now I feel even more miserable. I thought that 'functional disease" was basically when they couldn't find anything wrong?
My ESR and CRP are both high, my albumin is 27, Hb is 10.8 and I have macrobiotic anaemia. I just don't know what to do from here