update -- actually spoke to the GI dr today

DH and I had a post-colonoscopy appointment with my GI doctor. For whatever
reason, I found him much more approachable this visit, and we were able to
have a pretty decent Q & A session.

Here's the scoop.

I do have Crohn's. The biopsy showed granuloma, which is a definite
indicator. I'm lucky with this, because the biopsy doesn't always show
the granuloma, which then makes the condition harder to diagnose. There
was also another indicator that is more commonly found but also slightly
ambiguous -- structural changes in the lining of the cecum. Between the
two, the diagnosis is definite.

My case of Crohn's is about as minor as it gets. There is only one spot
that he found, which is in the cecum, and the damage level is very low.

What this means to me:

I shouldn't take NSAIDs (advil, aleve, etc). I can take Tylenol,
though. It's okay for me to take NSAIDs very occasionally, but I should
avoid it.

I should take the medicine he has prescribed, Asacol, every day for
the rest of my life. He admitted that other GI doctors would only
prescribe it during flare-ups, but he feels that lowering the
inflammation is the best way to prevent further damage. The medicine
itself doesn't have any side effects I've noticed; it's a form of
aspirin that affects only the colon.

No more tests in the near term. Unfortunately, studies show that
there's an increased risk of colon cancer after living with Crohn's
for several years, so eight years from now, I will be looking at
yearly colonoscopies. As I recall from a website somewhere, about 10%
of Crohn's patients eventually have colon cancer. I'm hoping that the
extremely minor form mine took somehow implies a reduced risk, but I
don't think there's any data to support that.

No surgery. As mentioned, my case is extremely minor, and he says that for
Crohn's, surgery is the last thing you want to do. He says surgery is only
indicated for extremely, extremely severe cases. There is no reason to expect
that I would need it.

Um, what else ...

I can keep doing all the things I do (mountain biking, hiking, etc) -- in
fact, they really want to keep me as active as possible. Since stress is such
an obvious trigger for me, I should certainly find ways to minimize it. He
isn't aware of any cases, ever, in which Crohn's just disappeared, although I
happily volunteered to be the case that launches him into GI stardom. But
having Crohn's does not necessarily mean having the symptoms all the time. My
goal, then, is to find ways to prevent the symptoms from recurring.

He recommended www.ccfa.org as a great source of information.

He said that while he would never argue with a low fat, low alcohol, etc diet,
it's not likely to matter much to this disease. He says that all dietary
studies so far have been inconclusive, or not specific enough to be helpful.

That's about all I can think of right now.

--
monique, who spoils Oscar unmercifully

pictures: http://www.bounceswoosh.org/rpca