Posted 6/22/2013 5:37 PM (GMT 0)
Well, to be fair, a lot of people with Crohn's have multiple health issues, but perhaps not quite as much as you do :-/
I'm still a bit confused as to what the Remicade, Pred and azathioprine is for. Just for Crohn's or for other things as well? I'm hesitant to recommend surgery if it still means you will be on that cocktail on meds. But on the other hand, if surgery gives you the chance to get off them, I would take it, even if it won't help your non-Crohn's health issues.
For the pulmonary fibrosis and joint pain you definitely need to see other doctors. It's worth remembering that Crohn's can cause bad joint pain in its own right. Even though theoretically Remicade should help with that, medications can have unpredictable effects, occasionally having the opposite effect to what is intended. Remicade did that to me. It might well have been coincidence, but I did end up in hospital with the worst flare-up of my life a month after starting it. (If other people read this and are alarmed, that's rare. Remicade is, most of the time, the best drug for Crohn's hands down and nearly everyone who takes it benefits from it.)
Anyway, I hope the specialist doctors can help. It is demoralising, being in pain or unwell and not knowing what's causing it. The best of luck to you.