GI Patient Questions - Scope & Hirschsprungs

dreams2bnurseco · Jul 22, 2010

Hi -

I am a 25 year old GI patient (and pre-nursing student!) w/ Hirschsprung's Disease, pull-through correction in 1988. I've had little to no issues since the correction, but over the past 3 months my docs (PCP, GI, even cardiologist - I have Tetralogy of Fallot, too) have been trying to figure out why I've been very anemic. I was admitted in May for a transfusion, and this seems to have helped a lot, but my Hgb is still low. I'm on OTC iron, B complex, carafate.

An upper scope revealed nothing, and a small bowel capsule endoscopy didn't work - the camera's battery wore out before it reached the end of my SI. Now I'm scheduled for an enteroscopy and ileoscopy in early August.

Despite not being able to speak with the GI doc face to face (very frustrating), I did meet with his NP to go over my concerns...but I'm not sure she was much help. They won't be doing the procedure, I'll be going to a larger hospital, so I'll be speaking with those docs that morning for sure.

Here's my concerns/questions:

1) I don't have a colon, so is there a risk as a Hirschsprung's patient with the ilesocopy? I mean, simply put, my plumbing is different, and the correction - I'm assuming - is near where the scope would go....am I at a higher risk of injury during the procedure because of these factors?

2) My small intestine - what they did see of it - showed areas of erosion, as did my stomach. They did not see any bleeding, though, so nothing was conclusive as far as being the culprit of my bleeding. Lab tests have ruled out Chron's and thyroid issues (to explain B12 deficiency), so what other hypothesis are there? A broken blood vessel? Could it be an issue with the surgical site made during my pull through?

3) Even though i'm on carafate for the stomach erosions, what should I be doing for the erosions in the small intestine?

I know that it's hard or impossible to make a diagnosis without seeing my records, and I know any response to this isn't official medical advice, just looking for some direction....

Thanks!