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Vasculitis of the intestines

Posted , 9 users are following.

Dulcie1925
Dulcie1925

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.

1 like, 10 replies

10 Replies

  • dave170448
    dave170448 Dulcie1925

    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.

  • julie05982
    julie05982 Dulcie1925

    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.
    • bev41634
      bev41634 julie05982

      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.
  • Roni45
    Roni45 Dulcie1925

    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

  • margaret22116
    margaret22116 Dulcie1925

    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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