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Metastatic Crohns Disease???

I was just diagnosed today with Metastatic Crohns disease of the skin. Apparently this is exceedingly rare, and there are only a few known current cases of this similar to mine. Anyone heard of it or have it? finding information online is sparse. It's similar to pyoderma gangernosum, but different.

I was initially diagnosed with cellulitis but after days in the hospital on IV antibiotics, the biopsy came back. The sucky part is Remicade is the typical treatment but I am severely allergic. I'm meeting with my GI tomorrow to discuss my treatment course. Thought I would toss this out there to see if anyone knows anything. It is extremely painful and nasty looking. But Im happy I at least have a diagnosis. Is there no end to the strange things this disease brings us?



Super Moderator
Hey Beth,

My kids don't have it but I have heard of it. I know what differentiates it from the other Extra intestinal Manifestations that appear on the skin is that the lesions are actually composed of the same type of granulomatous tissue that is characteristic of the bowel lesions. That is why it is called metastatic...the lesions have moved from one organ, the bowel, to another organ, the skin.

Hmmm...I would have thought that steroids would have been the first line of treatment but then I'm no doc!

Good luck! Sorry I can't be of more help to you. :hug:

Dusty. xxx
Beth, I know that your post is from February but I would love to visit with you. I have been diagnosed with Metastatic Crohns and then in remission for two years and now I think it is flaring up again. Please let me know if you are still part of this forum so we can visit. Thank you, Kari