Hereditary hemorrhagic telangiectasia (HHT)

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charlie

Hello, has anyone heard of/diagnosed with HHT. Apparently there stat show that 1/126 people with ileostomy are diagnosed with this. Anyone out there have any experience with this?

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AlexT

Had to look that up. It appears to be a genetic mutation so I'm not sure why it would affect ileostomates more. &zwj

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gentlejohn

Yes. This is similar but not the same as having having arterio-venous malformations of the GI tract. Unfortunately they can bleed without warning. Anything that interferes with clotting would not be a good idea (aspirin, Advil and NSAIDs. blood thinners etc. ). The problem is locating the site of bleeding if there should be major bleeding. Follow your doctor's instructions.

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