Not really sure yet what's going on. I saw GI #1 for 8 yrs and he did test after test and could never figure out what was wrong. GI #2 did a capsule endoscopy 5 yrs ago and dx'ed me right away based on ulcerations in my TI. I was put on Remicade after being very sick and ended up going into remission after several months. Remicade worked great until I developed antibodies and then had allergic reactions and had to stop it. I can't say enough BAD things about that GI, though, so I switched to GI #3 shortly after diagnosis and have been treated as though I have Crohn's for 5 yrs. Biologics are the only thing that work. I have been dx'ed with Crohn's related arthritis, which has gotten to the point where I've been told I will end up on disability if it continues to progress as it has been (and I'm 29).
Probably a month or two ago, rheumy wanted to take me off of Humira and try Enbrel because we are out of options on the arthritis. GI said no because Enbrel won't help the Crohn's any and my "Crohn's has proven difficult to treat in the past," so he didn't want to try other options. Saw GI again a couple of weeks ago and told him we were out of arthritis options except for Enbrel. He then said that we need to do some more tests to make sure I really have Crohn's and not "just IBS." This was all news to me...never had any idea that my dx had ever been in question. He basically said if it's not Crohn's we can switch to Enbrel for the arthritis. Now I am very confused. He said we are at the point where we have some big decisions to make. But, here are a few of my questions:
1. Why just question this after 5 yrs? If he had any doubt, he should have said something sooner and not kept me on risky drugs for 5 yrs.
2. Why would I have gotten better on the Crohn's meds if it was just IBS?
3. Why do I have Crohn's Related Arthritis if I don't have Crohn's (rheumy is saying it's Crohn's related)? And if it's not Crohn's related, why did I get arthritis at 21 yrs old?
4. If I'm in remission, will anything show up on my tests anyway?
Best thing is that the results of the capsule endoscopy that dx'ed me were "lost" according to the office manager when I first requested a copy of my medical records 5 yrs ago. Now that GI #3 is questioning the dx, I called GI #2's office today just to see if they ever found the results. And yes, they are there in my file...the report and pictures both, which were supposedly lost on the computer in 2005. So, they are sending me a copy and I'll have GI #3 look and see if I was originally misdiagnosed. I'm just very confused on why I've gotten better or "been in remission" if it wasn't Crohn's to begin with. Any ideas are greatly appreciated.