I was just diagnosed with two non-bleeding AVMs in my intestine...what now?

I had a perianal abscess 7 years ago but no further issues. However, I have had mild gastrointestinal problems (gas, occasional diarrhea, excessive wiping) for over a decade. I have had extensive investigations for Crohn’s (two colonoscopies, one capsule endoscopy, one MRE, fecal calprotection, blood tests, etc. etc.) and everything always comes up negative. I was shocked when the capsule came up negative, as I thought for sure I had it, but it turns out the abscess was cryptoglandular. Anway, my capsule endoscopy found two non-bleeding AVMs. My doctor did not mention it when she gave me the results, she just said it was normal with no inflammation. However, when they sent me the results in paper form it showed two non-bleeding AVMs. She seems unconcerned enough to not tell me. Is there anything I should do? Can the AVMs be causing my gastro issues? Is it possible for Crohn’s to be mistaken for non-bleeding AVMs? I have been told that the capsule was the final test and completely rules out Crohn’s, but I’m still having gastro problems. Anyway, just looking for opinions. I am terrified of suddenly bleeding out and requiring massive resections. Thanks!

AVM’s can be misunderstood by many doctors. Your current doctor may have never seen an avm and therefore just doesn’t have the experience to help or even to know where to refer you. Many of us have went through the same and it took many years and confusing time wasting appointments until we found a vascular specialist that could finally give answers that actually made sense and developed a treatment plan.

I recommend searching for one or group of doctors that specializes in vascular anomalies. Some hospitals have a vascular clinic or unit where a team of doctors work with patients with AVM’s anomalies. Since AVM’s can affect many body functions depending on their location and size. They will need to specifically look at the AVM’s and determine if and how they are affecting your GI.

Best wishes on finding answers that make sense and I hope when you do get an answer that there is an easy fix.

Also, based on my experience (facial avm), I recommend getting copies of your medical records with results and images of any tests you have gone through already. Some doctors (Boston&NY hospital) will look at them even without an appointment and give you their interpretations for free. It’s good to have and it will help the local vascular doctors to learn more of your avm before your first appointment and you can get the ball rolling on resolving your problem.

Let me know if you need those links for Boston and NY. It’s been years since I’ve used them.

Thank you! They said that they are not sure of the medical significance of non-bleeding intestinal AVMs since they are rarely encountered (since most people don’t have capsule endoscopy), so they suggest a “watch and wait” approach. I hope this is the right thing!