Hi everyone, thank you so much for your replies!
ipoop (love your name btw) - Yes I am also taking mesalazine and azathioprine. And since I am one of those 11% of people who metabolises azathioprine into another enzyme which is toxic for the kidneys, they added allopurinol to stop that reaction from happening. I remember when we added the allopurinol, it was the first time in months that I didn't have abdominal pain. But I was still on 15mg prednisone at the time, and when i tried to reduce I flared again... then we tried infliximab, got down to 5mg pred before having a very nasty flare-up in between the 3rd and 4th infusion... then we doubled the dose of infliximab (10 mg/kg)... it improved the symptoms to a similar level as now, but I could not get off pred, so that was why I made the decision to switch to entyvio. I actually felt better after the 2nd infusion, but at that time I still had infliximab in my system and was still on 5mg pred.. and now that both of those are out of my system, I have more problems...
I also take VSL#3 but my dr says he's not yet convinced that it helps
I have played with diet a lot (haven't we all?) and I find it nearly impossible to work out what helps and what does not... the only thing I am strict about
is being gluten-free. I could not follow SCD because I dislike or reacted badly to many of the foods she suggests...and skipping the carbs felt like starvation
Casey_LB, thanks I have tried mesalazine enemas (which did nothing) but not cortisone. That being said, I have severe osteoporosis in my spine after 2 years on prednisone, so I quite enjoy not having steroids in my system (although I know there are much fewer systemic side effects with enemas). It was my new dr who did the DEXA scan for the osteoporosis, that the last hospital never did. that's one of the reasons I decided to stick with him...
The fecal transplants are a clinical trial so there are some eligibility criteria for being admitted onto the study and I don't know if I qualify. Being a trial, I suppose there is also a chance of being administered placebo. That being said, it is comforting to know that it's potentially within reach, and indeed, I assume I can stay on my current medications for that.
Thanks again everyone
really appreciate it.