Are we having fun yet?
I agree that you should definately get a second (or third?) opinion to make sure. I sure wouldn't want to take drugs if it ended up I didn't need to! Yet, a lot of people here are mild and have done very well on low dose drugs with their Crohn's. I'm not saying one way or the other on taking drugs or not, but I currently am not. The only reason I am choosing this is that I found a Naturopath who has Crohn's and I chose to be treated by him for a year, and then see what a colonoscopy looks like and how the disease is doing. I think you are smart to only do this with the approval of your doctor. I would never suggest anyone stop any meds without a doctor watching over!
How is your food? What are you eating? I know that some docs say diet doesn't matter, but my diet has made a HUGE difference in my symtpoms, even before I was being treated. Could something you are eating be causing some of your distress?
I would ask for the capsule endoscopy (pill cam) as well. I went for 8 yrs before they diagnosed me and had every test the GI could possibly do, twice, including removing my gallbladder. Colonoscopies did not show anything. All they could see on CT scans, etc. was some fluid in my pelvic region (so I also had surgeries for endometriosis to see if that was causing my pain). I was told to see another GI for a second opinion. I was told it could be IBS or all in my head. I went to see another GI, he did the capsule endoscopy and found ulcers in my terminal illeum. He also did the Promethius test and it showed UC (so my original diagnosis was indeterminate colitis, as I had symptoms of both Crohn's and UC). He started treating me with Remicade, which saved me from having to be hospitalized and tube fed and ended up putting me in remission.
Over the years, I've noticed that my diagnosis has changed to Crohn's. When I was trying to get into the clinical trial for Cimzia a few years back, the clinical trial dr. almost didn't let me in the trial because he said he doubted I even had Crohn's, since my colonoscopies had never shown anything and because I don't have D. I'm on my third GI, who has Crohn's himself, and he doesn't doubt I have it. So, it takes the right dr. and the right test.
Post Edited By Moderator (Nanners) : 10/11/2011 7:45:57 PM (GMT-6)