Gastric AVMs

I was diagnosed with having Gastric AVMs. I am was 66 at the time that they were discovered. I was finding blood in my stool and also had a GI Bleed. **A note on my previous history, I have Factor 5 blood, which is a form of blood disease that causes clots anywhere in my body. I can not have blood thinners and even if I have a little blood thinner then my AVMs act up. However, I need blood thinner sometimes because I get clots from the blood and when I do my AVMs start to bleed** I had the AVMs "removed" on April 29, 2010 in Cleveland OH at the Cleveland Clinic. I thought that I was AVM free. Well on February 18th, my leg swelled and I went to the R/R to have it checked. After being sent home a couple of times, they discovered that I have a blood clot that is from my groin to my lower calf in my right leg. After being admitted to the hospital, they decided to give me blood thinners to try and break up the clot. Well when they did that I started to bleed from my colon again and had blood in my stool again! They have determined that the AVMs are back! I was under the impression that they would not grow back because I was not advised that they could come back, just that they got them all when they did the procedure.

My question, has anyone ever had Gastric AVMs?? I know that this is not as serious as other AVMs, but it is so difficult to get them under control with my Factor 5 Blood Disorder. Any comments and suggestions would be great!

Hi, Sharon, I'm sorry you didn't get any replies to your question initially. There are some other members with gastric and intestinal AVMs, and you can look at their pages: Casper208, Brandymartin, Alice Mastello, Cynthia Parknavy, Shayna, Jill Calloway, Kate Pimblett, and Rae Bell. Gastric AVMs are plenty serious and seem to be an ongoing condition; at least, I haven't found anyone on this website who once had but no longer has them. I hope if you message some of these folks, you can share information. Best wishes!

Here is one more member with a gastric AVM…