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Gastrointestinal AVMs

I am looking for others with bleeding stomach and intestinal AVMs. Mine has been particularly bad this last year. Had 20 cauterized only to have them rebleed. I get three weeks of iron infusions every three months or sooner right now. Are there others out there like me?

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Latest Activity: Aug 26

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Thalidomide and GI AVMs

Started by Madere (dancermom) Jan 26, 2014. 0 Replies

Here are some links to resources about thalidomide and GI avms:http://clinicaltrials.gov/show/NCT00389935…Continue

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Comment by Alice (Allie) Elaine Mastello on August 26, 2015 at 7:22pm
I had the dieulafoy lesion. Do look it up, sounds like what you had. They took out that part of my stomach and it was full of avms. I get regular iron infusions and get along fine. Hopefully you will also.
Comment by WinningJane on August 26, 2015 at 6:27pm

Hi Leslie,

I have intestinal AVM's and recently had a Dieulafoy bleed. I had 7 transfusions. I have had 5 episodes of bleeding AVM's but in my intestines. There is nothing you can do to either cause or prevent these bleeds. It may not have shown previously during an endoscopy because it was showing itself yet. I am told that I am probably bleeding a little all the time from the AVM's. I need periodic iron infusions. There are only problematic when they bleed heavily. I truly understand how you feel living under this cloud. Most of the time I don't think about it anymore. I try to just live my life and deal with a bad bleed if and when it happens. The odds are your AVM's are in your digestive system. You may be lucky and not have any more bleeds. Good luck.

Comment by Leslie Sexton on August 26, 2015 at 5:20pm

No one mentioned a Dielafoy lesion. I'll have to google that term

Comment by Leslie Sexton on August 26, 2015 at 5:19pm

Comment by Alice (Allie) Elaine Mastello on August 26, 2015 at 4:57pm

Welcome Leslie! I wonder if you had a Dielafoy lesion in the stomach from the AVMs. I had that in 2005 and hemorraged also, very fortunate to be alive. I go for more iron tomorrow. I will write more later or tomorrow....Welcome to our group[!

Comment by Leslie Sexton on August 25, 2015 at 5:29pm

I had never heard of AVM until I had one 4mm) burst 3 weeks ago in my stomach. I lost 6 pts of blood and had transfusions. My iron is now back to normal and I am feeling almost "normal". My concern is recurrance. My gastro doc said there was nothing I did to cause the bleed and nothing I could have done to prevent it. He said it is a congenital condition. I have had previous endoscopies. Why wasn't this AVM noticed before? Could it have been cauterized and the bleed prevented? I don't like living under this cloud! Are there precautions I can take proactively to lessen my chances for another episode? If it happened in my stomach could it happen in other places as well?

Comment by WinningJane on August 5, 2015 at 1:42pm

The heat is brutal. I am staying mostly inside. I hope that everyone is doing okay.

Comment by Alice (Allie) Elaine Mastello on August 4, 2015 at 1:26pm

Hope everyone is surviving the heat these days. Really wipes you out!

Comment by Alice (Allie) Elaine Mastello on July 25, 2015 at 1:28pm

Thanks for the note. Everything is a "trial and error" and it is hard to find a dr that is willing to work with you, I think mainly because they don't understand what we have. If you can't just write an RX for it, they want to walk away.

Comment by WinningJane on July 24, 2015 at 2:51pm

We are out here. I don't have any stomach bleeds. Mine are all in the intestines. I have had 5 episodes of bleeding that required hospitalizations, transfusions and cauterizations. Periodically, I also need iron infusions. I often have bleeds that just require iron infusions because they are slow. It is not easy to live with this always hanging over our heads.

 

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