crohn's misdiagnosis?

I don't know what to tell you except to agree it's frustrating. I am the opposite of you. I have only one symptom (fissures) and was told by my GI it was crohn's although my biopsies, CT scan, etc were normal. I was also told  "you can get a 2nd opinion but I wouldn't trust anyone else in town", "your Prometheus test would show positive if you have the gene, but that doesn't mean you have crohn's",   just a couple things to cast doubt. So now I've been on Remicade for three years and I don't really completely believe I have crohn's! Plus the 'cade has never completely healed me so I believe there's a chance that it's wrong diagnosis/wrong cure.

I run marathons, for goodness sakes! How could I be that sick???

sorry, guess I'm off topic but you just made me want to open up about being frustrated.

thanks so much for all your responses. It helps to know that others are or have been through the same issue! It seems like this disease is almost one based on opinion rather than tests!! i know that something is going on in there, i just don't know what! Maybe it is IBS? I'm going off my medicine for 1 month to see how it all goes and if symptoms start up again. I sort of feel like i'm telling my new GI what he should believe is wrong with me. It's like he'll agree with whatever I say? He didn't even remember at first that this was my second time seeing him! He re-introduced himself! Something tells me to maybe listen to my previous GI who has a lot more years of experience over this new guy.

My doctor said not to be so quick to rule out crohns entirely because my previous GI is someone very respected in that field and he knows his stuff. Aaahh I just don't know!! I feel like an idiot having people think that I have crohn's when maybe all along I haven't had it? I know that tests can come back all clear but it doesn't mean that it's not there. It's just like a waiting game isn't it?

I remember when I saw my old GI he mentioned my 'supposed' crohns was in the small bowel and I still wasn't convinced that I have it and he's like well you can think that, but one day something will happen to make you believe and then he said you're still taking your medicine though right? so why would he put me on the stuff and tell me the biopisies were suss if it were not true?! It's not that I want to have crohn's it's just that I thought maybe I finally had an answer!!

Matthew, I think you and I had the same GI when we first got sick!  I had the ulcerative proctitis diagnosis first.  Well, duh, if you only use a sigmoidscope you can't see the rest of the inflammation!  New doc, better scopes.

Kiki, I think it is a pretty common experience to NOT have a "name" for your inflammatory bowel condition.  But I believe calling something "IBS" is just a cop-out.  It only means that the DR acknowledges you're miserable, but can't find any "disease" to point to.  So then you have a syndrome.  An irritable one, too.

I think it is important that there were biopsies done, that they were not conclusive but also showed some problems.  Also, that you feel better on the meds.

So I just got some news that I might have ankylosing spondilitis, which is an arthritis that comes with IBD.  I've been doing a lot of reading and guess what?  Some people get this in their ribs and it causes pain.  It is hard to diagnose at the beginning because you need to see bone degeneration on x-ray.

I hope your situation gets less frustrating soon!

We've all got some 20 feet of small intestine, most of which can't be viewed by any other method. Just because Crohn's USUALLY strikes the terminal ileum/ileocecal valve area first doesn't mean that's the only place it starts first - and don't rule out that ONLY the very end and very beginning of the ileum can be viewed by a scope. There's a vast "dark continent" between the two - and that vast "dark continent" coils over and around itself considerably. How else would 20 feet of "tubing" fit in our abdomen?