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Missed Crohn's Diagnosis?

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Posted 7/12/2014 3:58 PM (GMT 0)
I'd like some insight on how Crohn's ends up being misdiagnosed as UC from those who have experienced this first hand. The suggestion is important to me because my UC symptoms are atypical. I don't have urgency issues. My problem is more loss of motility due to swelling and the associated pain of chronic constipation and an injured colon.

Reading the advice that those opting for surgery must be absolutely sure they have UC vs Crohn's has me wondering how the misdiagnosis happens. Does Crohn's have the same symptoms and clinical presentation?

If you think you are at the point of needing surgery, how does finding out you may have Crohn's change the options available? Are there different drugs that would be tried to get the problem under control beyond common UC drugs?
Posted 7/12/2014 4:35 PM (GMT 0)
I haven't experienced this first hand but, in case you didn't know, Crohns can effect the entire digestive system from the mouth or throat on down. UC is only in the large intestine. Unfortunately, or fortunately, Crohns can sometimes be located in only the large intestine in a particular individual and that's where most of the confusion comes from as they can have almost identical symptoms. Even the medical professionals can sometimes have a hard time figuring out which is which. Most UC and Crohn's treatments are similar. Some can have both UC and Crohns. If you definitely have UC only then surgery can be the cure (I hate that word in connection with surgery). But, if you have Crohn's in the large intestine only and then have surgery, it can still rear it's ugly head in a different part of the body and you might be back to square one all over again, minus your large intestine. Some Crohn's patients have to have surgeries to removed badly damage sectionss but it will never be the cure that it is for UC.
Posted 7/12/2014 4:42 PM (GMT 0)
Well i was diagnosed with UC first then later it was changed to crohns. This was all based on how my colon looked. The inflammation was spotty and that's crohns. In UC I think it is solid. It definitely made me less likely to get surgery since crohns could just move somewhere else. I'll fight to keep my colon now when I had been considering surgery when I thought I had UC. I think the symptoms are pretty much the same but vary from person to person.
Posted 7/12/2014 5:02 PM (GMT 0)
When you say mouth, I often get cold sores in my mouth when I'm flaring. Not a lot. Mostly on the inside of my lower lip. Is that a sign my situation might be more than UC?
Posted 7/12/2014 5:26 PM (GMT 0)
Well, I haven't experienced a misdiagnosis first hand but my experience may be of interest to this thread. My GI is not giving me a diagnosis because he really isn't confident in saying its one over the other. On my first scope I had no inflammation in the rectum area, only further up. (UC wouldn't skip and leave healthy tissue, it would be continuous) and I've also never had bleeding (though not mandatory, is usually present in UC and less likely in crohns). My second scope two months later only had inflammation in the rectum, very much looking like i had ulcerative proctitis. but, hard to say if my upper colon was only healed and kept in check because of my asacol. My blood tests always come back with normal level results, so no info there. I'm being monitored closely by the GI and he is evaluating how this progresses before he labels it. I am headed for an MRI of my small intestines as the next piece of the puzzle. So, according to my GI, when crohns is only in the large intestine it's hard to truly say its crohns or UC UNLESS you have some indisputable crohns evidence (fistula, etc) but as soon as there's evidence of inflammation outside the large intestine it's obvious. My GI said he has enough evidence to "suspect" crohns, but not enough to diagnose it. He says he doesn't want to call it crohns unless he knows for sure, because once you have a crohns diagnosis nobody will ever question it again. (Meaning if you had UC all along and only ever have UC symptoms doctors will see your crohns diagnosis and just assume its only active in the large intestine for now). My understanding is a crohns diagnosis, or even a strong possibility of crohns and the j pouch option is out. In crohns they prefer to do bowel resections, cutting out only the most diseased area until there's not enough worth saving and then they go to an ostomy. In UC they won't do resections, but they will remove the entire large intestine and you're "cured".

I know both diseases are horrible and one isn't necessarily "better" than the other, but I'm really hoping my GI discovers it to be UC.
Posted 7/12/2014 6:29 PM (GMT 0)
I have crohn's colitis (CD affecting the colon) always have (it's never been in full remission in the 23 years now of having it--even being on Humira since this February, still no full remission) BUT when I first got sick my DX was easy for my GI, I had the perianal crohn's skin tags on the outside of my anus and that along with my other symptoms was a dead give away.

Also, when I first got DX my CD was also affecting my TI and rectum and colon and anus all at the same time and my inflammation was patchy (which is indicative for CD, not UC)

I've often wondered how anyone can be misDX between the two since there are some pretty clear differences between the two, especially the patchy inflammation with CD versus the complete inflammation with no patches with UC...along with location.

The only time I suffer with tenesmus is when my CD is affecting my rectum, so tenesmus doesn't generally happen just because there's inflammation in the colon alone.

Often with CD there is a need for surgeries in the small bowel (that's why it's known as the "cutting away disease") but many CDers end up with an ostomy as well (my GI already threatened me with that option--not happening far as I'm concerned, I'd rather be dead).

There is also the 2% of IBDers that suffer with both UC and CD, now that I can understand being a little tougher to DX for the docs.
Posted 7/12/2014 6:47 PM (GMT 0)
There is no test that can differentiate between Crohn's and UC. It's like working a jigsaw puzzle for your GI. They can do a number of tests but the only true test is pathology of the colon and that can only be done after the colon is removed. And even then one can be dx with Crohn's down the road.

Sue
Posted 7/12/2014 7:30 PM (GMT 0)
Actually, there is the prometheus blood test which supposedly differentiates between the two but many consider it unreliable and few insurances will cover the test. My GI actually believes it to be more reliable than unreliable, due to his experience. I'd also like to comment on the patchiness difference between the two diseases. It is my belief that once certain treatments have already started (oral mesalamines for example) that UC can change from being a constant line of inflammation to becoming patchy - due to the topical meds hitting some areas more than others. So, if you have already started these topcial meds before the diagnosing colonoscopy, it could theoretically throw a monkey wrench into that diagnosis.
Posted 7/13/2014 5:34 AM (GMT 0)
Colonoscopies are used to help GI's try and determine which type of IBD a patient has, so they use it to look for patchy inflammation (CD) or non-patchy (UC) as well as locations of inflammation.
Posted 7/13/2014 2:28 PM (GMT 0)
In addition to the differences already identified here, I also think Crohn's affects tissues deep in the wall of the colon, whereas UC is typically the surface layer. I'm sure, though, that if UC gets really ulcerated the disease can go deep, but Crohn's to my understanding is always multilayered.

I've also never gotten an official diagnosis. I've had inflammation in the rectum, cecum and ileum so I behave and make decisions with an assumption of Crohn's. Not that it matters much for me practically.
Posted 7/13/2014 2:45 PM (GMT 0)
Yes, the saying is that Crohn's is "gum to bum". UC is the large bowel (colon) only.

Crohn's can feature 'skip lesions'.
Posted 7/13/2014 5:10 PM (GMT 0)
UC can backwash into the small intestines so there can be some inflammation in the small intestine and you can still have UC.

Biopsies can help determin if you have UC or CD.

I recently had surgery and my GI said that they have come a long way in the last 5 years in determining which IBD it is, he said there are more tests now including genetic tests.

They were always pretty certain that I had Pancolitis but confirmed it after my colon was removed.
Posted 7/13/2014 5:19 PM (GMT 0)

Spartan4Life said...

If you think you are at the point of needing surgery, how does finding out you may have Crohn's change the options available? Are there different drugs that would be tried to get the problem under control beyond common UC drugs?

I knew that it was time for surgery when the IBD-GI recommended surgery or that I could try Cyclosporine for the 3rd time or try Tysabri.... Which I wasn't willing to do.
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