MPN Voice

Ischemic Colitis/Messenteric Ischemia

Suffered for ten years. Factor V Leiden discovery put me on Coumadin in lieu of colon resection, but attacks continued. Heart attack added Plavix and 81mg aspirin to meds, but attacks continued. ET diagnosis put me on hydroxycarbamide. Platelets came down, and no more attacks for the last year and a half, thank God. Anybody else experience Messenteric Ischemia before MPN diagnosis?

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Hi Jerry,

No I haven suffered from the above. I'm glad to know that everything is ok for you now though.

It obviously must have been related to the ET considering the symptom free time that has elapsed since beginning Hydea?

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I had a Mesenteric ischaemia in December 2014. Unfortunately I had to have two feet of my bowel removed as a result. Although I was in a coma for over two weeks in ICU I made a full recovery and luckily don't seem to have any other symptoms associated with MPNs.

I had two clots, one in the Mesenteric vein and one in the Portal vein, which they thought had caused liver cirrhosis, but was later negative.

I was diagnosed as JAK2+ and pre-fibrotic myelofibrosis.

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My attacks were always Extremely painful right from the onset. How long did you go from onset to treatment? Or were they slow to come up with the correct diagnosis? My mother waited two days to seek treatment and didn't survive. I was longer in hospital once with an ileus and barely escaped the surgery.

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I started getting very bad indigestion and at first my GP thought I might have Gastroenteritis. It got worse after a couple of days so I went to A&E. They kept me in for observation but my condition deteriorated so badly that nine days later I had 3 operations in 4 days as part of my small bowel had to be taken out. I came round about two and half weeks later!

Once I'd been moved from ICU to the HDU and then onto the general ward they finally found out what caused my blood clots and that I was JAK2+

I had a BMB to make sure (that was fun). Since then I've made a full recovery but I haven't had any other symptoms with MPN's. I was also lucky in that I didn't need a Stoma.

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I'd say you're very lucky you didn't die from peritonitis and sepsis. God must have big plans for you.

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Hi Jerry, I too have Factor V Leiden which has in the past caused heart problems and also two small strokes. I wondered whether your haematologist has told you whether Factor V Leiden has any affect on the ET. I can't seem to find out any information. Anne x

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