Any advice....please

[Oliver27]

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

[willow24 Administrator]

Im perplexed too as to why the gastro cant do a full thickness biopsy due to weight! and a quick look through research documentation/papers has not given me any answers either

mercaptopurine is a metabolyte of azathioprine. I, like many, can tolerate mercaptopurine and was on it for years, but couldnt take azathioprine, so hopefully this may be an option for you.

functional disease implies that despite tests the bowel looks normal - this is obviously not the case as the video scope shows ulceration! i can understand why gasto doesn't want to go by blood inflammatory markers alone if you have other autoimmune disorders, as these could be giving the high result.

a faecal calprotectin test would be useful if they do these at your hospital - this test identifies inflammation specific to the bowel. These can be done privately, although not cheap

to be honest if my gastro was that vague on giving specific answers I would get a second opinion. it might be worth your rheumatologist referring you to a gastro she knows. My gastro referred me to a rheumy she knows and my info is shared and they discuss my medication etc. IBD and rheumatology disorders are well known to be linked so surely the consultants should work together

Good luck x