Arthritis help

So, I feel really stupid now, because I have tried to be in denial about CD for so long that I have not been able to establish a long term GI, or other doc for that matter; and since I was diagnosed at 17 and no one seemed to think it was important to explain anything to me; I now, at 36, have NO clue whatsoever about what I'm supposed to be doing for the extra-intestinal symptoms that I've had pretty much consistently since my first flare. The best I ever got was a GI office telling me that if I had joint pain I should not move that joint. That was all good until my hips, knees, and ankles started to hurt.

Anyway, to make a long story short, I finally went to my Primary dr. To ask about the arthritis: what am I supposed to do and not do, what type do I have and how can I possibly exercise when I'm always hurting? He comes back telling me, joint pain and CD are unrelated. He gave me some song and dance about how my quality of life will be better if I just keep moving through the pain, and how my knees are so bad, I probably won't be able to walk in ten years.

So I'm doomed to an amigo in my mid forties!????? I can't really accept that. The RA tests he did came back negative so I'm not sure what to think. Anyone have an exact name for the type of arthritis we usually experience and how to treat it? I have a hard time because my problems come both when I use the joint a lot AND when I'm sedentary for a period of time. (So confusing....)

I appreciate any help...I'm really scared to think that I have or I will unknowingly make things even worse and become disabled at such a young age!

Thanks, Laura

Laura,

I'm sorry you are in so much pain. That really stinks.

The best thing to do right now is find a rheumatologist. Yes, joint pain and Crohn's often go together (about 25% of people with inflammatory bowel disease have joint pain that is related to their illness) but to find out if that's true for you, a rheumy should eliminate other things first. The kind of arthritis that comes with IBD is commonly called enteritis arthritis and it is not damaging to joints. There is also ankylosing spondylitis, which is a degenerative disease and occurs in conjunction with IBD. Most people with ankylosing spondylitis are carriers of a specific gene, but that is not always true.

There are meds you can take to treat both the Crohn's and the joint pain - I take sulfazine and it has worked well for me. I have also adopted a gluten free diet and that has helped too.

How is your Crohn's right now and what meds are you on to control it?

Hi Laura,

The two most certainly go together! You could either be experiencing extra-intestinal symptoms related to your Crohn's (what my GI called inflammatory arthritis) or you could have developed a form of arthritis concurrently, like RA.

There are a lot of struggles with doctors regarding diagnoses and treatment, just like with Crohn's. I've been in a weird limbo recently because after years of being treated under the assumption of having inflammatory arthritis, including some pretty hardcore meds at times, my current GI says that my joint issues are "obviously" not related to my Crohn's because, if they were, the meds I'm on (Remicade, prednisone previously) would have helped the pain. He says my joint pain--which has been significantly debilitating this year in particular--is simply due to my hypermobility (i.e., I'm double-jointed) and the best way to deal with it is to be active. I wanted to tell him to shove off, since I had ended up in urgent care from chest pain (which he includes as a part of my joint pain) earlier this year after running.

The best thing to do is find a team of doctors (GI, Rheumy, etc) who you trust and listen to you about what's going on in your body and are willing to take the time to figure out what's going on. Good luck!