Vasculitis of the intestines

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For the last few years I have been told I had Crohn's disease in the small intestine. However, after my last bowel resection I was told that it could be vasculitis of the intestine, but they couldn't be sure. Does anyone suffer from this, I am told the symptoms are similar to crohns, if so, what medication re you on? Thank you.

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  • Posted

    Hi Dulcie

    If you have vasculitis or even think you have vasculitis then you should really be seeing people at Addenbrookes (if you are not already) They have a specialist vasculitis clinic with over 1,000 patients. Best thing I ever did - they literally saved my life. Good luck Dulcie!!

    http://www.cuh.org.uk/vasculitis-and-lupus-service

    Emis Moderator comment: I have replaced specific names/details etc with a link to the CUH web site.

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  • Posted

    Hi -- not sure that I can really help but your story is of interest.  Please let us know how things go for you.  I was diagnosed with Crohn's disease or UC about 20 years ago and had a total colectomoy with ileorectal anastomosis since after 5 years of being on prednisone i started to have bleeding in my large intenstine that could not be stopped.  I was pretty much in good health until now --took no medication over the last 20 years.  However, recently, a strange red rash on my legs and then a biopsy indicate small vessel vasculitis.  They are trying to figure out how my body is being impacted by this.  Blood work indicates issues with the kidneys. I have not heard much of vasulitis of the intestines.  I hope things work out for you and that you find a med that is effective for managing this.
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    • Posted

      This is such a baffling disease, not only to us but experts.  I have had intestinal problems since diagnosis and it has been put down to medications as I did not have it before.  However, meds have been changed and still I have annoying bowel symptoms.  I have had colonoscopy and clear.  I now take immodium on a daily basis.  My specialist isnt sure this is the best route but he doesnt live with it.  I wont go out for days for fear I will have a soiling issue.  The immodium at least controls it.  Not sure for how long or if there are side effects but I cant become a hermit.
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  • Posted

    Hi

    I have severe Vasculitis affecting the right hand side of my body ( leg and arm). I was diagnosed in March after a nerve biopsy was taken from my right foot.

    Since March I am on a cocktail of medications including Prednisone, Methotrexate, CellCept, Bactrim.

    I see a Neurologist for my Vasculitis

    If you have any questions let me know

    Thanks

    V

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  • Posted

    I have vasculitis and have had bowel symptoms like Chron's disease. Some people get the gi problems with vasculitis and some people don't. Maybe you now have a full diagnosis but if you need to chat feel free to get in touch. 

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