Hi All - I am hoping you can share your experiences and help me. I was diagnosed with CD back in 2006 by my 2nd GI Doctor. My 1st GI was not able to make the dx but he suspected that it was in fact Crohn's. I have had multiple tests over the past 6 years, several ER visits for dehydration and pain, numerous in patient stays throughout 2005/2006, cholysystectomy, appendix removed, etc..... I have seen 4 different GI docs during this time. Each time they actively treat me for CD, I feel a lot better - then several of them will do the scopes, they will come back normal and they will then question the dx, take me off a lot of the meds and I bottom out again at that point........
I have never had a positive biopsy or scope - never. Twice, I showed some patchy inflammation but it wasn't anything too exciting and the biopsies were normal. Most doctors have been reluctant to actually diagnose it as Crohn's and treat it as Crohn's without that biopsy. My 2nd GI let me know that scopes cannot always get to the affected areas, the Doctors don't always take the biopsy from the right / affected areas, etc.....and that while many Doctors absolutely will NOT make the dx without the biopsy - there are other ways that he feels you can make the CD dx.....which is how he made it. He said that it can be in any layer of tissue, anywhere in the I tract, that it can move around and be hard to actually get a good biopsy but that doesn't change the fact that the disease is there and active.........
Here is the scoop:
* All of my ASCA scores have shown 2-3X the normal level of inflammation - they have all predicted CD with a 92-98% accuracy.
* Other markers have also been high
* C Reactive protein has been borderline positive
* I have had a few abnormal CT scans with mural thickening around the terminal ileum and several others over the years that look normal
* I have had 2 pill cams - one of which showed abnormalities - the other was normal
* I have had normal upper GI series - a few of them
* I have had normal biopsies from both the colonoscopy and the endoscopy - several times now
* I have a family history of UC and other autoimmune inflammatory diseases on both sides of my family
* I have all the classic symptoms of CD - severe pain, diarrhea, blood, trouble eating lots of foods, bloating, joint issues, nausea, fatigue, etc.....
* I have responded well to conventional CD treatments and have found an immense amount of relief with Prednisone and Humira.....
Based on a clear colonoscopy from last month & a clear CT scan from last month - my GI doctor is stating that he thinks I am either in remission or that my previous DX of Crohn's was not right and that I may not even have Crohn's?
I guess my question is this - if I am in remission - would I still have symptoms? I feel a lot better than I have felt in years but I am still very symptomatic - I would not think this is remission.......
Would my tests come out normal in remission? Could they come out normal if I am still symptomatic?
He is considering dialing back my Humira or maybe even stopping it at this point and that scares me. I have a lot going on in my life and I don't have time to backslide if we come off of it and then I get worse. While I still have issues and pain - I have come a long way from where I was 18+ months ago. I used to have no energy and I was fatigued all the time, I was unable to eat a balanced diet because all I could handle was soft, bland starches, I was heavier from the steroids and starches, I was always running to the bathroom,etc....
Now, I am eating better, working out, have a lot more energy, still have pain but a little less, have lost weight because I am able to work out and the Pred is way down, have less joint issues, less running to the bathroom, etc......I am just all around feeling a lot better and a lot more human.
I am afraid that I will get worse if he stops the meds that are working - this is the best I have been in 6 years.....I have also heard that once you stop a drug like Humira it typically doesn't work as well if you go back on it. I would hate to get a lot sicker just to try to spend another 18+ months to get right back to where I am now. I was not happy about going on Humira at all, I had always sworn I would NEVER take a biologic BUT I feel a lot better and I can't deny that it is helping me in several ways........I don't want to risk my progress.
Please let me know if you have had this type of experience? What you did and how you handled it?
Thanks in Advance!
**Taking Humira, Pentasa, Protonix, Pred, Percocet, Phenergan as needed.