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My rheumy thinks I have IBD arthritis but my new GI Doc doesn't think I have Crohn's? I had severe UC but my colon was removed 9 1/2 years ago. I always have ulcers on my anastomosis, this last one was over 1 cm, but I guess this is not IBD but rather compromised blood flow to that area. All I know is my life is not like it used to be. My shoulders and wrists hurt so bad today I couldn't pick up a phone, my toe joints are swollen, my low back is in constant pain, and I get massive migraines. My rheumy has loosely diagnosed me with Lupus but I think that was because my ANA and DNA was sky high after using remicade. He's hinted that he really thinks I have IBD arthritis rather than Lupus. Well, I was just told I don't have IBD. I don't get it? I take plaquenil, 10 mg prednisone, and topomax. I went into ovarian failure at 32 (41 now) from all of this crap too and take HRT. Can't take NSAID's for pain due to GI hemorrhages and transfusions. I take tramadol for pain but it really doesn't do much and narcotics slow my gut down too much due to the scar tissue. I feel hopeless right now, I don't get to this point very often but the lack of sleep from constant pain and feeling like I have no options and no-one really knows what's wrong is making me feel like I have no options. I'm even afraid to increase my prednisone because I almost died from my last GI hemorrhage and I'm not sure if the prednisone compromised my blood vessels. I guess I'm just having a bad flare and I need to toughen up....just getting old.
Here's the thing. You can have IBD related arthritis even though your colon is gone. It does not mean you have Crohn's. It is true that the more common form of IBD arthritis follows the bowel disease course. But the spondylitis form does not. It has an independent course. If you are willing to try, there are other biologics to try, Humira or Simponi, but you need to watch your ANA closely. There also is methotrexate. If this was lupus, you'd probably have a better result with the planquenil.

Here is a link to a good site with loads of information.
http://www.spondylitis.org/about/ibd.aspx

Jan Smiler
Jan Dollar

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