I am new here. I was so happy to find this community but realized there are very few people who have dealt with a @GastroIntestinal AVM. Honestly I am glad. I wouldn’t wish this on anybody. My diagnosis felt like a never ending bad dream.I am just grateful this community exists because it makes me feel less alone. I bled for 23 days because my AVM was in lower GI, after being bounced around from telemetry and ICU because I was so unstable I finally got my double balloon enteroscopy and they found a tumor. Everything I experienced was unreal. I had such a terrible experience at community hospital before my transfer to USC. I’m just happy to be 2 weeks no bleeding after my bowel resection. I’m a 24 year old college student and AVM took my grandmother 1 year ago. I like to think she saved me because for her it was too late. I feel that after figuring out how to use this site I will have much more to say.
Welcome! It is great to hear that it sounds like your recovering well. I’m a brain AVM person so quite different but many of experience similar things in our journey’s. I was fortunate, or unfortunate, that I have no recollection of being told I had an AVM. I had no idea what one was, and even once out of hospital recovering with some memory issues had to keep asking my wife what it was called.
You are certainly right in the GI AVM not being a common AVM type. Great to hear your experience at USC, I know UCLA is well known in the brain AVM realm. My son had a bowel resection at 6 1/2 months old due to Hirschsprung Disease, he is now 19 years old and at 17 won the provincial powerlifting championship. He does still need to pay attention to his diet, particularly associated to fiber. A little difficult for a super active 19 year old college student.
I look forward to hearing your progress, and thanks for your work in your community and with youth!