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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?

Members: 22
Latest Activity: Jul 25

43 Cauteries last time

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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 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.

Comment by Bacu on July 23, 2015 at 5:00pm

Great news Allie! Being on an even keel sure makes a difference. I'm waiting (waiting all week) for the results of a Breath Test. Have been having some discomfort and they are checking for SIBO that the resection could have caused. Originally thought the symptoms were from the Sandostatin but they have continued for too long after the drug was stopped.

Comment by Bacu on July 23, 2015 at 4:48pm

Comment by Alice (Allie) Elaine Mastello on July 22, 2015 at 1:25pm

Wanted to share, my hematologist has been trying a different approach and giving me iron infusions every 4-6 weeks. She draws the blood just prior to the infusion. So far, I have been able to build some iron stores and feeling more even keel.

Comment by Clicker625 on July 2, 2015 at 5:07pm

Hi Vera! I've only had cauterization and blood transfusions. This occurs about every two years. A doctor said I had slow bleeds. I don't have a specialist.

Comment by WinningJane on July 2, 2015 at 4:40pm

Welcome Vera. The only treatment I have had is also cauterization and blood transfusions. I asked about Sandostin Lar Depot but my GI doctore said it is inconclusive if it works. The thing I hate most is having to prep for the scopes. Last time I was in the hospital, I had to prep 3 times. It took 3 tries for them to "get" the bleed. That was in April and I am keeping my fingers crossed. I have been hospitalized 5 times since June 2008 when they discovered the first major bleed. Sometimes I bleed but not enough for hospitalization but enough to need iron transfusions. I guess we all just live in hope that we will stop bleeding.

Comment by Bacu on July 2, 2015 at 4:25pm
Vera, welcome to the site. I hope you find it helpful. Please brouse the site as Allie advises. There is a wealth of info for you. My AVM's started bleeding in Nov of 2013. After 11 scopes, 42 units of blood, numerous scans, and a 4-1/2' small bowel resection and 1 year of monthly injections of Sandostin Lar Depot I have been bleed free! The resection was done 3 months after the first bleed and the medication continuted for 10 more months. I don't know if I stopped bleeding from the resection or the medication. Please question us about anything. Go back to the original posts and browse forward. Lots of info. Keep us updated.
Comment by Alice (Allie) Elaine Mastello on July 2, 2015 at 1:38pm

Welcome VeraS! We do all understand your frustrations. I personally have not tried any of the medications. Others have in the group. Please brouse around the website and through the conversations. We are here to help each other.

Comment by VeraS on July 2, 2015 at 1:33pm

Hello, my name is Vera. I'm glad I found you all. Not only do I have AVM's all through my GI tract, I also have a colostomy. The only treatment I've had for them is cauterization and blood transfusions. I hate and resent the scopes that I have to go through for them to cauterize those darn things. What other treatment is out there? I know there is medication, but I can't afford the $500+ monthly cost. Any information will help.

 

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