Does anyone have collagenous colitis?

Discussion in 'Fibromyalgia Main Forum' started by GinnyB, Sep 13, 2005.

  1. GinnyB

    GinnyB New Member

    Does anyone else on the board have collagenous colitis? It's a rare form of colitis, and people who have it often have fibromyalgia.

    Collagenous colitis is frequently misdiagnosed as irritable bowel syndrome. People with fibromyalgia often have irritable bowel syndrome.

    Does anyone see a connection here? Are we being misdiagnosed?

    GinnyB
  2. rhonda357

    rhonda357 New Member

    Hey Ginny,
    Yes I have had it for about 13 yrs now. Wonderful stuff don't you think. They told me for 8 yrs that it was irritable bowel, and I kept saying no it's not from all the info I read on I B. Finally found a Dr. that knew what she was doing, did 3 biopsies and bingo! C C. would love to talk to you about it.
    Rhonda
  3. cjcookie

    cjcookie New Member

    I was diagnosed about ten years ago.
  4. GinnyB

    GinnyB New Member

    Sorry to stay away so long--family reunion, medical tests. The drugs for collagenous colitis are the same ones used for Chrone's disease, starting usually with sulfasalazine and asacol. Prednisone's the best one to clear up symptoms quick, but the side effects can be deadly. My CC doesn't follow the usual course--constant watery diarrhea-- so the docs say my discomfort's from something else. Last week I tested positive for lactose intolerance and bacterial overgrowth. I'm on an antibiotic, Xifaxan, for the bacteria.

    But what I'm really interested in, is there any way we could get researchers to study CC and irritible bowel syndrome in relation to their connection to fibromyalgia. How are we ever going to get any new treatments if little or no research is done? I guess the problem is this stuff doesn't kill you, just makes you miserable for years, so the research money's saved for cancer, etc.

    Any solutions?

    Ginny
    [This Message was Edited on 09/19/2005]
  5. jenemc

    jenemc New Member

    I don't have colitis,but I do have crohns disease and my dr said that people with crohns sometimes have fibromyalgia also. Lucky ppl aren't we?

    jennie