Retrograde Balloon Enteroscopy, is it worth it?

[Keralin]

I was diagnosed with Crohn's Disease in August via Pillcam results, and have been on Asacol and Entocort since then with no improvement in symptoms. I got referred to a tertiary hospital and had a second colonoscopy/endoscopy which showed that the little bit of colitis and gastritis that was present during the last set of scopes had mostly cleared up, but the new GI doc was unable to find any evidence of Crohn's even scoping 13 inches into the TI. He reviewed the pillcam study and told me based on the timing, it looks like they were just short of reaching the ulcers. He wants to do a retrograde balloon enteroscopy. My understanding is that I'll have to go under general, and the procedure will take upwards of 3 hours. This concerns me quite a bit, as I had a difficult time recovering from my last one hour long conscious sedation (propofol/versed) when I had the endoscopies a month ago. I've lost even more weight since then, putting me in the dangerously underweight category...my bmi is hanging somewhere around 13. I'm under the care of a cardiologist now, too.

Has anyone had a double balloon endoscopy? And do you think the benefits outweigh the risks? I honestly don't know what they're hoping to discover. I'm almost thinking they should do another pillcam just to confirm that the ulcers are still there before I undergo such an involved procedure. I'm pretty sure they are, since I'm still having pain, but it seems like the best way to go about doing things until I can get a little weight back on. I don't know if I'll make it through another prep... :ybatty:

I'm considering telling them where they can shove that scope...I've about had it with tests! :shifty-t:

 

[Keralin]

After much deliberation, I've decided to go for it. The kicker is, the doctor wants to take me off of Entocort just to make sure it isn't masking anything, AND wants to wait 4 weeks before doing the procedure. I guess he wants to get a diagnosis confirmation via scope and biopsy so we can treat more aggressively. My primary GI Doc agrees with this decision also, so I guess if it's being backed by two doctors, it's probably the best route to go. Hopefully the biopsies come back conclusive this time!