What's wrong with me?

I had a follow-up with a GI doctor on Friday.  She told me I definitely do not have IBD.  When I questioned her closely about the ulcers I had in my colon last August, she told me they were most likely caused by NSAIDS (even though I had not taken any NSAIDS for 8 or 9 months prior to the colonoscopy).  After thinking about it, I think that's entirely plausible 'cause I've read that ulcers can stick around for long periods of time with no treatment.  I guess I'm just one of those people who cannot tolerate the NSAIDS at all.  Anyone else here sensitive to them?  I'm sure you are, Erin, because of your crohn's.  But are any of you who don't have IBD sensitive to them?

It feels good to eliminate IBD as a possible dx, but then again, I still don't have an answer to what's wrong with me.  I'm so tired of hanging in limbo on a dx.  I know that only symptoms can be treated anyway, but it still helps to have a label.

Enough whining for the week,

Elcamino

hey "el"

you know what, i'm greatfully relieved that so far inflammatory bowel disease has been ruled out.

but what i was thinking...ulcer disease could fall into a different categorie.  people have peptic ulcer disease but that's not part of IBD  (for all reading this who are unfamiliar Inflammatory Bowel Disease [IBD] and Irritable Bowel Syndrome [IBS] are 2 COMPLETELY different things; IBS being almost comletely benign but with major symptoms and upsets and IBD being chronic and progressive in nature).

so what i'm thinking is you could have an ulcer disease affecting parts of your colon significant enough to cause problems but categorily not falling into IBD...but perhaps IBS.

again, ya never know.  with one AI issue there can arise many others.  be vigilant with your GI problems and keep track of them.

hah, funny you mention me & nsaids.  they make me bleed bleed bleed.  but now, i really want to take an ADVIL instead of steroids! i hate steroids.

hang in there my friend.

Thanks Curley and Erin.  Erin, my GI doctor told me I probably had IBS, but as far as I know IBS cannot cause ulcers anywhere within your GI tract.  When I brought that point up, she came up with the NSAID theory.  Then, she promptly dropped me and told me not to come back because she has really sick patients!  Admittedly, people with IBD can be very very sick, but not all of them.  Nevertheless, I won't be going back to see her.  If I need another GI doctor I'll have to continue my search.  This lady I went to was an expert in IBD at Johns Hopkins, so I'm sure she has a patient list a mile long.

I think a lot of people are sensitive to NSAIDS whether they have IBD or not.  Both of my parents were.  My father has IBD/Ulcerative Colitis, my mother did not.  Both had problems, however, with upper and lower GI systems in connection with NSAID use. 

Erin, you also mentioned that enbrel can treat IBD?  I've heard it's not very effective for that--both remicade and humira are much much better.  That being said, perhaps it's better than nothing in comparison to what and IBDer would feel like without taking it.

Elcamino

elcamino,
We meet again! Digestive Disease Week is an annual event where the world's leaders in gastroenterology meet to present the latest findings, studies, etc. DDW 2006 just ended last week. One of the interesting abstracts of a program presented there dealt with being able to differentiate Crohn's from NSAiD-enteropathy by using the capsule endoscopy. Some excerpts from the abstract:
"It [CE] also appears to be the investigation of choice for the diagnosis of NSAID-enteropathy, which affects over 50% of patients receiving these drugs long-term. Furthermore NSAID-enteropathy is associated with serious outcomes (bleeding, perforation and obstruction) as frequently as NSAID-gastropathy. Indeed it has been suggested that certain NSAID-induced small bowel damage may be indistinguishable from that of Crohn's disease."

"Conclusions: CE images of the small bowel show that NSAID-enteropathy has a similar range of pathology as seen in patients with Crohn's disease which further corroborates the importance of the small bowel in the overall gastrointestinal damage of NSAIDs. In the absence of a clinical history experienced CE image readers arrive at an incorrect diagnosis in 20% of cases. "

This evidence shows just how much damage can be caused by NSAIDs. In fact, that was what was thought to be the cause of the erosions initially found in my terminal ileum. I have not researched the treatment of NSAID-enteropathy, nor what happens if not treated. Frankly, I hope that it is/was NSAID problems not IBD that caused your aphthous ulcers.