Ileostomy and Behcets

I was rushed into hospital in early October and had to have surgery to remove part of my small intestine, then given an ileostomy, it was not Behcets related however it then send me into a flare. So now back on high dose steroids.

I was wondering if there is anyone on here that has Behcets and an ileostomy, or vasculitis and how do you cope.

17 Replies

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  • I remember you posting before about rectal bleeding and assume that it was that which led to the ileostomy.

    Do they know that it wasn't related to the Behcets as it can cause ulceration in the small intestine which can lead to perforation of the bowel. What treatment are you on apart from high dose prednisolone?

  • I had a colonoscopy in September which only should slight inflammation, but no explanation for the bleeding. Odd thing was after having it I had a slight flare, which seemed to pass then this. They sent off the dead bowel for biopsy and said no vasculitis involved. They say my small intestine just dropped and twisted around itself, luckily for me it twisted tight enough not to leak as it died or I would have died my consultant told me! The Behcets did kick in after the op as shut down my small intestine and cause a range of issues with my liver and pancreas. Have slowly introduced my medications back. So increasing methetrixate slowly, colchicine back, hydroxychloroquine back, warfarin and many others, some in soluble form so I absorb them. Can only drink dioralyte as my main drink

    All seems a little odd that it happened so soon after my colonoscopy.

  • "All seems a little odd that it happened so soon after my colonoscopy"

    How soon? Not wishing to throw a cat in amongst the pigeons - but perforations during colonoscopies are not unusual.

  • Actually looking back it was 6weeks, I was in a lot of pain for a few days after, then went into a flare 2 weeks later.

  • That's just not true. Please quote your source for this. I am now having colonoscopy every year after 11 years of Crohn's and although they are prepared for this happening I've yet to hear of anyone, in the Bristol clinic, that has had any damage from colonoscopy

  • I am afraid PMR pro is right, it's a recognised complication of colonoscopy. As a former ITU nurse I looked after many patients over the years with this complication ( and from endoscopy as well ! ).

  • A very quick search yielded this

    ncbi.nlm.nih.gov/pmc/articl...

    Hospitals never publicise these things.

  • Can you provide any link to back up the percentage of those who have colonoscopy that have a perforation from it please ? The reason I say this is that I was bricking it when I first had colonoscopies and went into it on a miscrodcopic level. I asked so many questions and although it IS a possibility, it's so very rare. They'd had 1 person in the least 5 years and that person was in a very advanced state of ulcerative colitis.

    Yes, it can happen but it is a rarity and percentage wise is ridiculously low, not that percentages count if your that one person

  • Just because you don't hear of it doesn't mean it hasn't happened - they won't tell you as you sign your permission form

    Thank you, Keyes, for your link. This link

    patientsafetyauthority.org/...

    says

    "Colonoscopy is an important tool for colorectal cancer screening and diagnosis, but reports of the incidence of perforation, a serious complication, vary widely, and risk factors have not been clearly identified. Using meta-analysis and a qualitative literature review, the authors systematically assessed the incidence of and risk factors for colonoscopy-associated perforation. Data on 966,172 screening and diagnostic colonoscopies from 38 original studies was combined in random-effects meta-analysis. The overall perforation incidence was 91 (95% CI: 77 to 104) per 100,000 colonoscopies. Screening colonoscopy had a lower incidence rate (41 [95% CI: 8 to 75] per 100,000 colonoscopies) than diagnostic colonoscopy and studies with mixed indications for colonoscopy (102 [95% CI: 86 to 118] per 100,000 colonoscopies). No other risk factor was identified by this meta-analysis. Published evidence suggests advanced age, polypectomy/biopsy, previous abdominal surgery, gastrointestinal comorbidities, and hemodialysis may be associated with increased risk. Despite the widespread use of colonoscopy and the seriousness of bowel perforation, information on risk factors, especially modifiable risk factors, is limited."

    I think that 91 per 100,000 counts as a "not uncommon" incidence and the incidence can be expected to be higher amongst older patients or patients with pre-existing conditions. Experience of the operator is also crucial. But hear the ITU nurse's evidence - they see it.

  • Thank you. That surprised me. The Bristol clinic certainly didn't provide anything like that. I'm glad I never read that prior to my first one. I find them easy now and don't bother me st all.

  • No - they don't tend to broadcast a lot about unintended consequences! It's the same with a lot of drug side effects I suppose. But all sorts of such problems exist that the general public never know about - but those of us who have worked in the NHS are much more aware of these things for obvious reasons. It doesn't stop us having the procedures done - but maybe we go in their with our finger firmly crossed ;-)

  • Sorry to hear that.

    Have you discussed having regular injections of Bitamin B12? This is only absorbed in the ileum, so your body will no longer be taking it in.

  • Thanks for that I will mention it on Friday.

  • I have Crohn's and have so far been extremely lucky to avoid surgery but now have Wegeners/GPA. I think that once we have one autoimmune disease that we are more prone to more

  • Absolutely right - if you have one autoimmune disorder you are at a higher risk of developing another than someone who doesn't have one.

  • And yet the inflammatory bowel disease people are still arguing over the diseases being auto immune or not. When I have cut down the azathioprine the disease gets lively so I stick to it.

  • Probably depends what it is - but the experts say "The pathogenesis of Crohn's disease (CD) and ulcerative colitis (UC), the two main forms of inflammatory bowel disease (IBD), is still unclear, but both autoimmune and immune-mediated phenomena are involved."

    There is an element of it, they admit that.