16 Years of UC Might be Crohns ***

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New Member

Date Joined Mar 2006
Total Posts : 12
   Posted 7/29/2009 8:46 AM (GMT -6)   
So I had a colonoscopy last week and get a call from GI’s nurse wanting to schedule a small bowel follow through for my Crohns. I told the nurse I don’t have Crohns and she had better check on the follow through because she got my disease wrong she might have the follow through wrong. So my GI calls me this morning saying the pathology came back on one of my biopsies from the colonoscopy and it showed signs of Crohns. Needles to say I was a little pissed off and he was not to empathetic, I questioned the pathologists and he said I can seek another opinion on the pathology report, but that really wouldn’t help. So I told him to check my history, which I would have thought he would have done before calling me. I have had 3 scopes w/this guy in a 10 year timeframe and nothing like this has ever come up. I also told him I smoke and know that smoking is good for UC and not Crohns, but he told me it was the other way around, good for Crohns and not UC.
He then goes onto tell me I might want to get blood work done to check to see if it is Crohns. All of this is after he was telling me to get the follow through done first. Now I questioned what would the follow through show, and he told me it would show some sort of ucelers if it was colitis. I told him I had one done about 12 years ago and wouldn’t it be a good idea to look at those x-rays before jumping to conclusions. His response was that things could change. I said UC can morph into Crohns, he said NO.
I know there is indeterminate colitis, but to have my same GI for 10 years to classify it as UC and now say it might be Crohns is a little troubling and not to mention I was diagnosed when I was 13 now 29

Sorry for rant, but this is kinda scary to me, i know the diseases are similar in ways, but i always thought Crohns to be the more serious of the 2.

Previous GI- Dr. Victor Tsou
Current GI- Dr.Kelvin Hornbuckle

Need help and suggestions

Forum Moderator

Date Joined Feb 2006
Total Posts : 5698
   Posted 7/29/2009 8:53 AM (GMT -6)   
Your story is not that uncommon.  Sometimes the disease presents itself as UC and then years, sometimes many years later, Crohn's presents itself.  A small bowel follow-through will show whether Crohn's is visible in the small bowel.  Your change of diagnosis does not mean that any of your GIs have been negligent or wrong, it means that the diesease hadn't manifested. 
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Forum Moderator

Date Joined Apr 2004
Total Posts : 23551
   Posted 7/29/2009 10:59 AM (GMT -6)   
That is always my fear as well that my Uc diagnosis after so many years will change to Crohn's one day. But Sue is right. It could very well not have shown as Crohn's in all this time because it may be that it was limited to the large intestine which is classified as Crohn's colitis. It has all the same symptoms as Uc and the medications are the same.

But this doc is definately wrong about smoking. It is plastered all over the internet as well as the CCFA website that smoking is NOT good for Crohn's.

In regards to CD being worse then UC - it is in a way. One can have mild CD and one can have severe UC, you can bet that the one with severe UC is the worse off then the two. The main complication from CD is that the ulceration can actually cause preforation in the bowels or small intestine. UC only affects the mucousal lining of the large intestine.
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Regular Member

Date Joined Feb 2009
Total Posts : 226
   Posted 7/29/2009 12:42 PM (GMT -6)   
It can be hard to visually tell the difference sometimes between Crohn's colitis and UC unless either are very severe (when the differences become far more apparent). The drugs are pretty much the same, so if you've been under control with UC you'll probably remain under control if you now have Crohn's (or if it was misclassified before).
33 year old male
diagnosed severe pancolitis in 2004, unresponsive to all drugs
turned down recommendation to have j-pouch surgery
have been mostly symptom free since 2004 via diet modification (removed all carbs)

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 7/29/2009 7:34 PM (GMT -6)   
Smoking is (supposedly) bad for crohn's and helpful for UC but take into consideration when CD is affecting the colon, then smoking can benefit CD in that case (as is my situation with having crohn's colitis myself).

There are common differences (visually) between CD and UC and a good GI would know the difference, with CD there are skipped patterns of inflammation, with UC there is not (inflammation affects the entire area). With CD the inflammation often affects the many layers of the mucosal lining, with UC it remains on the surface of the lining only. The severity doesn't necessarily have any impact on the visual between the two either.

The only good news is that the same meds used to treat UC are also used to treat crohn's colitis as well, the obvious bad news is with having CD rather than UC you have to be prepared for the disease to affect any other part of your intestines as well (since UC is limited to the colon/rectom only) and getting your colon removed when you have crohn's colitis will not likely be a long term benefit for a CDer as it would for a UCer because the CD will at some point attack other parts of the GI tract.

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

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