Anyone had a diagnosis change from UC to Crohn's? also Humira?

After being diagnosed 2 year ago with left sided UC, I switched to a new GI (due to many things).  I have never achieved remission really and I have developed iritis (eye infection).  So, I have a new scope and she discovers that I have a stricture (narrowing) at about 4 inches from my rectum.  The inflamation is 9 inches total from rectum up.  I had a CT scan and my small bowel is fine.

Wait...because you have strictures your Gi thinks you have chrons? did he or she explain why? I had a ct and sig, they found stritures as well but he never mentioned not having UC. He told me that strictures were scarring from past flares and pointed it out in the sig. (i hate being awake but it was interesting)...He wanted me on remicade but my insurance wont' pay so we are trying imuran. From what it sounds like my Gi might not be telling me everything. Oh and my gi said humira isn't approved for UC but it is for chrons. So most insurance co's won't pay for UCer to have humira.

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Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, 15 mg pred. until immuran kicks in...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07
Prontonix once daily for acid reflux, zofran twice daily for nausea

Hey Kelly!  According to my GI, it is very rare for UCers to have strictures.  She said in fact, they usually present with the opposite a ballooning effect that can lead to perferation (sp?).  Anyway, she consulted the other GI's on her clinic (they are an Inflammatory Bowel Disease Clinic at Vanderbilt University) and she said the general consensus was Crohn's.  That said, I am not a doctor, but my issue starts at the rectum and is straight inflammation for 25 cms (about 9 inches) the narrowing halfway up- 4 inches.  She is worried that the narrowing could get worse and I would have a blockage.  It is not presenting as Crohn's and that has me baffled (I and think the doctors).

My diagnosis was also recently in question because I had symptoms very atypical for UC, namely very localized pain and discomfort on the RIGHT side. My GP thought I had appendicitis. A CT revealed "thickening of the bowel wall" on the right side, so Crohn's was suspected. My doc said it's not uncommon for IBDers to have their diagnosis switched in the first seven years or so. He also said new research indicates the line between UC and Crohn's is not so clear any more and there may be some overlap.

You may want to ask your GI about having the IBD Serology 7 blood tests run. Between the various blood tests and some specialized computer algorithm, the panel is supposed to be over 90 percent accurate determining Crohn's vs. UC. You can learn more by downloading this PDF:

http://www.prometheuspatients.com/PDF/PRM16038_DX_IBD_S7_client.pdf

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Diagnosed with ulcerative colitis spring 1999

The overlap is called indeterminate colitis.

I agree that we're at the mercy of our doctors....not all doctors are good or have their patients' interests at heart. 

Strictures do happen in UC, although not a high percentage of patients get them...it's imperative they are biopsied..for many can possibly be a symptom of early cancer.   However, it seems it happens more often in those who have had it for a very long time rather than newly diagnosed. 

One interesting factor that anyone who has strictures should be aware of.....high fibre is contraindicated, so the diet should be adjusted.

I found this article that might be of interest..it's 6 pages:

http://www.pubmedcentral.nih.gov/pagerender.fcgi?artid=1844640&pageindex=1

quincy

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Post Edited (quincy) : 10/11/2007 12:00:37 PM (GMT-6)

Thanks for the link, very intersting. I wasn't aware that I shouldn't be eating high fibre. That is usually what i do out of a flare...but this flare seems to be sticking around so I have been limiting fibre. My Gi has hardly mentioned the strictures besides telling me the biopsies were clean...i think he is more focused on getting this flare under control. Any insight into what questions I should ask at my next appointment (11/8)?

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Kelly, 29

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, Rowasa every other night, 15 mg pred. until immuran kicks in...
75mg Imuran starting 8/23/07---bumped to 100mg 10/8/07
Prontonix once daily for acid reflux, zofran twice daily for nausea

"Indeterminite" implies "we don't know which you have." The impression I got from my doc, a fellow at a world-class teaching hospital, was they're starting to explore the possibility that people might actually have both or that the two are not such separate entities... not a case of we haven't determined which one you have yet. I found it interesting because I've always felt instinctively that digestive illnesses are more of a continuum than separate conditions. I'll see if I can get some supporting information from him.

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Diagnosed with ulcerative colitis spring 1999

Very interesting.  Actually, I am scheduled on Monday for a blood test- must be the one you mentioned that she said would help determine although sometimes not 100%.  Hey- anything I can get!

 

I contacted Prometheus and they said if I pay in advance, the cost will be about 210 dollars from what I remember (give or take a few dollars).  That's without insurance for the Imuran test.

I doubt there is much of an "overlap" primarily because of this....

Dr. Kathrine Siminovitch and her team discovered (in 2004) one of the genes that predisposes development of crohns disease...The gene is located on chromosome 5 and normally produces a protein that sits on the cell surface and controls movement of specific substances in and out of the cell...when altered (scratched), the gene produces a protein that functions improperly, allowing toxins increased entry into the cell...

This gene alteration is primarily observed in crohns disease and so, as a direct result of Dr. Siminovitch's discovery, doctors can now use an assay (laboratory test to find and measure the amount of a specific substance) of this gene to distinguish between crohns disease and ulcerative colitis.


:)

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My bum is broken....there's a big crack down the middle of it!  LOL  :)

I'm currently in dispute with my insurance company over this. I have a bill from Prometheus for $650. My doc and I have both written letters explaining the need for the tests. We're sending everything back through, hoping it won't be denied. So, yes... check with your insurance company first.

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Diagnosed with ulcerative colitis spring 1999