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Undiagnosed IBD

I have had “IBS-d” since I was 22, and I am 52. It’s been so severe, I have been hospitalized many times (up to 73 days one year). I am so sick and weak that I went from a public school teacher to bedridden on disability. Last time I was hospitalized, lab results showed positive stool lactoferrin, high sed rate and CRP. I also had blood in my stool during my entire 2-week stay and “colitis” in CT report, with no positive tests for pathogens. However, since no colonoscopy (and I have had many over the past 15 years) has shown any very specific results, my diagnosis and treatment has always been IBS-d. That continued even after last April’s suggestive findings.

I have tried every single IBS med, and nothing works. I have begun losing weight now because I cannot eat for 15 minutes without urgent diarrhea. How do I approach this problem? Why hasn’t a doctor prescribed Budesonide for me, seeing as it’s pretty safe and might work? Why would I have had “colitis” along with stool lactoferrin if I don’t actually have IBD of some sort? Could it even be undiagnosed Crohn’s after more than a decade of symptoms? If so, could it be that the inflammation is hidden in the small intestine?

  1. Hi .

    Have you had biopsies taken when you have had a colonoscopy in the past?

    Colitis on it's own simply means inflammation is present in the colon. Colitis and Ulcerative Colitis are different, as Ulcerative Colitis is a form of Inflammatory Bowel Disease, and Colitis can be caused by a number of things.

    I believe that Budesonide is actually thought to be better at treating inflammation in the small intestine, not the colon.

    Have you tried different diets to manage your IBS? I know a lot more about IBD than I do about IBS, so I'm not sure how much impact diet has, but I have read low fodmap is often recommended by a dietician.

    All I can really suggest is opening communication with your doctors. If you feel that there is more too it than IBS then you should push for more tests. You can find more info about Diagnostic Tests and Procedures here: https://inflammatoryboweldisease.net/diagnostic-tests-and-procedures/

    Good luck!

    - Sahara (team member)

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