Double Balloon Endo/Results Confusing

[bunnygirl]

I was diagnosed in June 2014 during exploratory surgery following 2 years and 10 "ëpisodes" that turned out to be SBOs. Had a foot of jejunum removed @ same time. Surgeon said SB damage is extensive. Drs. @ Cedars-
Sinai recommended Remicade, so I went through all the prep for it. Just had a double balloon endoscopy where they opened a stricture w/balloon, took biopsies and tattooed/marked areas for surgery. Dr. said there is so much damage from adhesions that bowel is rigid with scar tissue, not inflammation, so not recommending Remicade. Also wants to do retrograde DBE to tag any other areas that need surgical intervention. We all agree that there is 40+ years of damage - never diagnosed, despite EXTENSIVE testing on and off since I was 11 and first had pain. My question is: Why would Remicade not be indicated to prevent future inflamation? Insurance company denied it because I didn't fail on other drug classes first. Currently tapering off Pred (1st time taking it). Tried Pentasa. Is it a medical call, or don't want to fight Anthem Blue Cross? I've been on full liquid diet since June...

 

[DJW]

I'm on remicade to prevent further damage (and deal with my current flare). It won't help scare tissue that's already developed.

 

[Daisy123]

I am in a similar position. I am waiting for a double balloon Enteroscopy (how did you find it by the way?). If it is stricturing, then dilation and/or more surgery. If inflammation, then Remicade. They won't do Remicade if it is scarring as it will make it worse. But they should be able to start Remicade with you after surgery.

 

[DJW]

I didn' t know that. I started post surgery.

 

[Daisy123]

That is what I was told, but I am in the UK and it might be different. I would rather try Remicade than more bloody surgery, perhaps, but my problems are mainly from too much surgery I think.