I would want to know about the strictures. What risk do they pose for obstruction?
Diaphragm-like strictures are said to be pathognomonic for NSAID enteropathy; do you know if your first doctor saw something like that?
http://www.jscimedcentral.com/Orthopedics/orthopedics-2-1011.pdf
You wrote "The biopsies done in the area of the two strictures in the small bowel did not show granulomas."
In terms of granulomas, many biopsies in Crohn's don't find granulomas.
I wonder if a specialized pathologist could review the biopsies and give an opinion.
You ask such good questions. Thanks so much for the insight.
Of course the biggest issue the GI's bring up is the danger of complete obstruction. The one who thinks it's NSAID enteropaty and recommends surgery said the strictures won't be healed by medication. The one who says it's IBD and recommends meds didn't address that (and I didn't think to ask at the time). He's the one who gave the rubber glove analogy.
I wish I knew what kind of strictures the GI who did the DBE saw (not one of the two above). I didn't know enough back in October when that procedure was done to know there were different kinds of strictures. I saw the guy for maybe five minutes after I'd come out of general anesthesia when he gave me the information that I have constrictions and ulcers and he'd taken biopsies and tattooed the strictures so they could be found by the surgeon. Then in walks the surgeon he'd asked to come talk with me about cutting that section out immediately. The GI guy left.
After I was home I came up with all kinds of questions for the DBE GI guy, some very specific about the nature of the strictures. Not the form as I knew nothing about NSAID enteropathy at the time, but just were they elastic, rigid, swollen, etc. Why did he stop at the second stricture? I couldn't get an appointment to see him until Dec 9. That was one day before I was scheduled to see the IBD specialist so didn't make the appointment with the endoscopist. I figured it would be a waste of time because he wouldn't remember what he'd seen two months prior. I didn't, and still don't know if they store images of the exam.
Now that I know a lot more, I've thought about making an appointment with the GI who read the pillcam (not the same as any of the 3 above). I don't know how long they keep those images, nor do I know if any strictures were seen - he didn't mention it in his report. He did note that the camera hung up for a while but eventually moved on. Now we know why.
The GI appointment I have in February (with the 1st GI I saw-the one who did the colonoscopy & EGD) is to get a third opinion on diagnosis and how to treat the strictures and ulcers. Those hadn't been found when I saw this guy in June. I didn't see him after the procedures he did in July. He's not an IBD expert but maybe that's what I need - someone to look at the data without a preconceived notion of what it is.
I've often wondered whether one can get a second opinion on "tissue" removed, i.e. a different pathologist looking at it. I've never pursued it.