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I have been having these bleeding episodes from lower GI tract. Mostly bright red blood and enough that I would need a pad to manage it. Pretty much the same level of blood as from a serious nasal bleed
More recently I could find dried blood (probably bled throughout the night) and a couple of times blood clots
No hemorrhoids and no anal fissures they can trigger, no constipation, the colon seems normal under a very fast colonoscopy.
The doctor performing colonoscopy had no idea of what… read more

August 20, 2024
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Answer Summary

Members responded to concerns about unexplained rectal bleeding in someone with essential thrombocythemia, sharing experiences of similar... Read more

Members responded to concerns about unexplained rectal bleeding in someone with essential thrombocythemia, sharing experiences of similar episodes paired with low ferritin levels, inflammation visible during colonoscopy, and difficulty getting doctors to connect bleeding to their MPN diagnosis. Several members offered practical guidance, including requesting iron studies and infusions if stores are low, seeking care from an MPN specialist rather than a general hematologist, and advocating firmly for interdisciplinary collaboration between gastroenterology and hematology teams. A recurring theme was the frustration of compartmentalized care and doctors unfamiliar with MPNs, with members emphasizing the importance of self-advocacy, finding providers who listen, and not accepting dismissive explanations when symptoms feel serious.

A myMPNteam Member

I am taking 75mg of aspirin daily and I did not see any changes in my bleeding tendency since I started taking this. If anything, bleeding during my period became less since I started the aspirin. And I had some memorable bleeding before diagnosis, when I was not taking aspirin at all, as I had undiagnosed ET for years on end.

August 20, 2024
A myMPNteam Member

This doesn’t sound right, and it frustrates me just to read that the GI doctor not only can find no cause, but normalizes the bleeding.

I have never heard of this.

You don’t say whether you are on blood thinners, but that would factor in.

August 20, 2024
A myMPNteam Member

You are right though Tta, that doctors work in compartments and often have very limited knowledge outside their specialties

August 20, 2024
A myMPNteam Member

Same for me, bleeding enough to fill a pad several times, low iron levels, other issues too, such as abdominal pain, so my GP sent me for a colonoscopy.
To be honest, as I was awake during colonoscopy and watching the screen, I could see a very upset part of my colon where blood vessels were so close to the surface, they could burst like a blood vessel in the nose that is too close to the surface would burst.
You are right about the link between MPNs and autoimmune illness, including GI autoimmune illness like ulcerative colitis.
The colonoscopy was done in such a rush, that there was no time for me to ask about inflammation.
Someone else who had these issues told me they have inflammation in the colon, and that it took another specialist to acknowledge those issues, as they were also cleared at first colonoscopy.

August 20, 2024
A myMPNteam Member

I’ve had some bleeding from time to time but I also don’t drink enough water. So being dehydrated doesn’t really help me at times. But I’m due for a Colonoscopy this year so hopefully it’s nothing serious.

August 20, 2024

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