Vascular malformations/small bowel angiodysplasia in my 20s?? Anyone else?

[BureaucraticNightmare]

Anyone out there have a pillcam for obscure GI bleeding? IE your docs didn't suspect Crohn's but needed to figure out why you were anemic or were seeing blood in the stool?

Anyway, apparently the only pillcam diagnostic finding more common than Crohn's (besides NSAID lesions) is angiodysplasia/small intestinal vascular malformation. But these vascular issues are almost exclusively found in patients over age 50, from everything I've read. I'm only 26, and apparently I've got the small intestine of someone twice my age -- these vascular things are in several places in my small bowel. While it's almost a relief to know a) it's not Crohn's and b) I'm not crazy -- that red stuff in the toilet HAS been blood all this time and no, contrary to what three GIs said, it wasn't from a hemorrhoid -- this is all still weird.

Just wondering if anyone's heard of anything like this, especially anyone in the under-40 range.

 

[Malice67]

I have something similar (Gastric antral vascular ectasia - GAVE), but in the stomach, not the intestines. Mine was seen both by endoscopy and PillCam. Like you, I also about 25 years younger than the typical patient. Mine was also discovered while trying to find reason for anemia without other classic Crohn's symptoms.

For me they did find "inflammation consistent with Crohn's" in the small intestine (PillCam) and ileum (colonoscopy and PillCam), so still not sure how much of the anemia was due to the GAVE and how much to the Crohn's.

What is the treatment plan for you? Have you been at least medicated out of the anemia for the time being? Are they looking at treating medically or surgically? Do they feel it will be chronic or curable?

My hematologist wants to keep me on 8-10 week lab checks for anemia and when the anemia returns (apparently it is a given it WILL return) have more iron infusions. My GI suggested that we do argon photocoagulation of the vascular abnormalities when the anemia returns. He said not to do it now as it is not a permanent cure, it will eventually have to be done again. I guess I have until whenever the anemia returns to figure out which path to take...

Does this sound anything like what you have been told?

 

[BureaucraticNightmare]

Well, the good news on my end is that I'm not anemic. My presentation was an "overt obscure" bleed -- no iron deficiency or anything (although to be honest, I haven't been tested in a while), just repeated visible blood in the stool.

As for what any of this means and what's to be done about it, your guess is as good as mine! I haven't been able to get my doctor on the phone to explain any of this, and the earliest I can get in is weeks away, so all I have is the report from the pillcam, which was administered by another doctor at my GI's request.

On the bright side, I guess the fact that no one's in a rush to explain what any of this means is a sign it's not anything too serious?

Still freaking me out though. Now that I actually have a copy of the pillcam report itself, I realize there are quite a few of these malformations, at least 5 or 6, and they're scattered pretty much throughout the small bowel. There's also some pretty gnarly looking lymphoid hyperplasia at what must be the ileum (based on the time stamp next to the image -- the stamp is about 10 minutes before the camera is recorded as entering the cecum.)

Argh. I'm so lost. I had to BEG to get this pillcam done in the first place. (No one believed I could possibly be bleeding from anywhere besides a hemorrhoid without developing serious anemia.) Turns out I was right about my small intestine being messed up, but that's not much consolation when you've got diarrhea 27 of the past 30 days and no one to explain why there's blood in it. Sigh.