ET Causing Ischemic Colitis?

[Jerrymohler]

Has anybody else with ET suffered from ischemic attacks? Could ischemic colitis be attributed to ET even with a platelet count under 500? My thought is that an MPN like ET might change the nature of the blood beyond just the platelet count.

[lindyloulou]

I have ET and am diagnosed with what was called microscopic colitis, and had irritable bowel many years before either diagnosis. Not sure if this is relevant to your question ?

[JediReject]

Hi Jerrymohler, , from my very limited knowledge of this I would doubt whether it is ET related especially with an above average but still modest platelet count, as it's associated with clotting. I suppose it's possible but it really lends itself to specialist advice. Have you had or are you suffering attacks and if so what is your consultant opinion?

It's certainly a very interesting topic though I believe IC is quite rare in itself and is connected to restricted blood flow pos due to narrowing of arteries.

Anyway you never know someone here may well unfortunately have it and be able to advise.

Good luck, Chris

[Nickyanne]

Hi Jerry

I have been diagnosed with ET for 13years now since the age of 25. I have been on hydroxycarbamide mainly but did have 3 years on interferon while I had 2 beautiful children.

[Nickyanne]

Reply cont......

I was diagnosed after many years of going back to gp with 'bowel symptoms' inc extreme abdo pain associated with severe diarrhoea to the point where I was fainting the pain was that bad & I can now compare the pain to being in labour! I have been incontinent & it got so bad that if I went anywhere I needed to find out where the loo was in case I needed to go. I am a nurse& can tell u it was really affecting my life. I then started passing blood

Went to my gp & demanded a blood test (after being told I was a neurotic nurse) I got a call the next day as my platelets were 1,800 & my Et journey began.

I was referred for camera test up my bum - it was all fine. I have suffered with the bowel symptoms on & off since. My platelets have been very unstable , even when low ish I have still had symptoms.I have been to see a gastro surgeon & he wanted me to swallow that little tablet/camera thing but at the time symptoms had settled a bit so I declined as I begin to feel fed up sitting in outpatients departments half my life.

I describe the pain as feeling like a platelet gets stuck in my gut & the blood supply gets cut off. It is excruciating pain. It settles when I have the diarrheoa. (Sorry this is all graphic nurse talk!) my haematologist is sympathetic but has been at a loss with if its my ET. I no it is. On the positive side I haven't had bowel symptoms for 6 months now.

But have been really exhausted, feeling awful over Christmas. I don't know if it's having ET, being on Meds, having 2 children, a husband that works a lot, working 30 hrs/week with shifts & wrks been difficult the last year. Never felt this awful in my life. I've hardly got out of bed/off the sofa. GP / consultant think I have a viral illness. I don't feel ill though. I'm 37 & don't have time for feeling like this.

I don't know if that helps?! Would appreciate any other experiences of bowel symptoms or exhaustion......

[Janlol in reply to Nickyanne]

Hi, Just diagnosed with ET after numerous years of bowel problems and being told it was Irritable Bowel Syndrome. After having 2 splenic infarcts in 3 months this lead to blood tests recommended by the consultant haematologist along with CT Scans after each infarct. Interestingly enough the scan results have now shown a mass in the small bowel which has never been picked up before. Have now been referred to the bowel surgeons as haematologist is recommending biopsies of the bowel. Not sure whether this is coincidence or not but will let you know once it is all done......

[Nickyanne in reply to Janlol]

Gosh what I nightmare. I really hope you get some answers soon.

Nicky