I am so confused!!!

[Nell Bell]

I was diagnosed back in July with crohns following a colonoscopy which showed inflammation in the cecum and iliem (sp), tried a bunch of different meds and now doing remicade. I went back to the doctor today because I was in the hospital a few week ago and they did another colonoscopy this time taking biopsies in the colon and iliem and I was told today that I may not have crohns... How can a doctor be so sure I have the disease enough so that He put me on remicade and now tell me that it might not be crohns?!?!? WTF???? Now I have to go do a capsule camera thing, which is fine, I just don't get how you tell someone they have a disease treat it for 6 months and then say I want another test (after 1000's of other test already, that have showed inflammation and other things) because you might not have it?!? By the way i was in the hospital for 5 days due to a supposed ileus (blockage from inflammation)... FRUSTRATED!! Has this happened to anyone else?

 

[xJillx]

Hi Nell Bell,

My situation is similar, actually. I had minor symptoms (basically just passing mucus) back in the summer of 2010. My first GI suggested a colonoscopy right off the bat to save time. Inflammation & ulcers were found in the TI and rectum, and though biopsies were negative, my GI was about 90% sure it was Crohn's. I started Lialda, and things only got worse. I switched to a highly regarded GI and did many, many, many more tests. All were pretty much normal (one flex sig did so mild inflammation with biopsies of 'acute colitis') with no positive IBD biopsies. So, my GI has retracted my diagnosis and stopped my meds and gave me an IBD diagnosis.

I have been doing pretty well (knock wood) and I think Lialda was responsible for a lot of my problems. But did it help address my inflammation giving me clean testing results? I guess only time will tell. But I am pretty confident I have more than IBS.

So, like you, my diagnosis was taken away. However, it sure does sound like you have IBD. I mean, you were in the hospital for 5 days with a blockage. What else could explain that?! What is his reasoning? But you make a good point, if there is a small chance you don't have Crohn's, why did your GI want you on Remicade?

I sure hope you get some concrete answers soon, Nell Bell.

 

[Nell Bell]

It's crazy, I mean it's not like I was happy about the crohns diagnosis but at least it was answer, my doctor determined crohns due to biopsies that showed the disease and of course other tests. I'm just mad because he thought I had it enough to treat me for it and now it's just IBS?!? Really?!? I asked him well if it's just IBS how do you explain the going 30 times a day, waking up all hours of the night to go, the inflammation, blood, the ilieus due to inflammation?!? He then said "we may need to start some steroids." and I again stated if I have IBS I don't need steroids because there should be no inflammation. The whole appointment was weird and it didn't feel like the same doctor that I had put so much trust into in the first place. He contradicted everything he said right after he would say it. Also if it was IBS remicade would not help it because it's a syndrome not a disease and I have had massive improvement with this med... No more blood, the most I go in a day now is 5 times and the vomiting is better also.

 

[David]

I'd get a second opinion. Just me

 

[Nell Bell]

I believe you are right David... I just really thought I had a good doctor and a trusting relationship with him... Now I just don't know.

 

[David]

You may very well have exactly that. But based upon what has transpired, if it was me, I'd like a second set of eyes looking at the info.

 

[Nell Bell]

Agreed! I'm going to do just that, I drive a hour and a half to Naples to see this doctor because I loved him, this last appointment was not like the man I have been seeing... We are also planning on moving back home to Michigan which will be fantastic because I can go back to my doctors at U of M, it was a really good team there.

 

[Nell Bell]

I guess my biggest question is will it always be back and fourth like this?

 

[Rebecca85]

Surely the fact that you have no signs of IbD at the moment means the treatment has worked?

 

[Nell Bell]

Surely the fact that you have no signs of IbD at the moment means the treatment has worked?

Exactly my point... If it were IBS remicade would have done nothing for me.