Severe Lower GI Bleed: Question: None... - Hughes Syndrome A...

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Severe Lower GI Bleed

ndstephens49 profile image
4 Replies

Question:

None of my three children, ages 32-38, have been tested for clotting disorders. There was no need as none of them seemed to have a problem.

Now, my oldest(38), has had two episodes of lower GI bleeding over last 4 years.

The most recent episode was so severe that he was hospitalized in order to administer fluids and 2 units of blood.

He had both upper and lower GI scopes which did not reveal a cause for the massive blood loss.

He was released from the hospital without determining a cause for this severe bleed. There is no treatment plan except ‘watch and wait.’

I did a little research online and discovered that clotting disorders can be a little recognized cause of severe GI bleeding.

Have any of you all experienced GI bleeding with APS? Knowing the answer to this will help us determine how hard to insist he be checked for APS and other clotting disorders.

Thanks in advance for your help!

Nancy in West Virginia

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ndstephens49 profile image
ndstephens49
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4 Replies
HollyHeski profile image
HollyHeskiAdministrator

We are more prone to clotting than bleeding, but I did read a paper recently that indicated that there is reason to believe there is a link between occlusion's, clotting, liver or pancreas pain/problems can lead to GI bleeding. It was suggested that anyone with APL and GI pain or other symptoms should undergo further tests, I see no reason why the reverse should be applied to your son, as he is having severe bleeds, therefore I agree with you that your son should be tested.

I cant remember the paper but if you think it will help I can do some searching?

ndstephens49 profile image
ndstephens49 in reply to HollyHeski

HollyHeski, I really appreciate your information. Don’t search yet because I found some info on GI bleeding due to portal vein occlusion and also due to microvascular clotting in vasculature of lower GI tract.

I was wondering if anyone had a personal experience with GI bleeding.

You all have been so helpful to me.

Thanks.

Nancy in West Virginia

Wittycjt profile image
Wittycjt in reply to ndstephens49

Wish I could help but haven’t heard of f this, sorry,Cindy

Peecue profile image
Peecue

As well as having APS o have been prone to having Thrombocytopenia known as low platelet coint. Normal range 150 mine 6. It came up as severe vruising and blood blosters in my mouth and pin prick bruises on my neck. Went to GP who said oh its mothing. Bybthatvtime beuise was a wwk old an black. All i had done was sl knock itvin a corner of a table at work. So he said i suppose touvwant me to do a blood test. -yes. No aapo8ntmnet for a furthe 4 days. So took that one as nurse hadnto do. Delayed at work that fri eve when i got home 4 phone calls from GO and Reception staff saying please abswer your phone its urgent, you ned to go to hospital. When i saw GP next morning sat i was putvon 50 mg prednisolone with hospital appointmenf on mon. 8 weeks later finally off steroids platelets normal. Then i had kidney problem. Back on steroids

Short story- everytime i try to come off steroids i get thrombocytopenia. So am on Steroids for life. When platelets hit low, i have to stop warfarin but as they inceease i have to go back on again.

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