wrong diagnosis?

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New Member

Date Joined Aug 2006
Total Posts : 10
   Posted 1/15/2009 3:34 PM (GMT -7)   
I am new to crohns..was dx with UC in 2006 but dx has changed to "crohns colitis".
I am still in some sort of denial I guess but I am wondering if I am mistakenly diagnosed and its really just IBS. I know there was inflammation when I had my colonoscopy and bx were positive and I have positive antibodies for crohns but I know that these antibodies arent always true or can be positive for other conditions. I am just wondering if anyone has been diagnosed and then "undiagnosed"? I am wondering if the inflammation could have just been from an infection? If I have another colonoscopy and it is all clear does that mean that maybe I really dont have crohns and it was just a one time thing ( I have only had one colonoscopy) -I have been hiding from the Dr. but started having symptoms and was "forced" to go to the Dr. again. I have had diarrhea and mucus and was having small amt blood tinged mucous but I am wondering if this is IBS? My dr has ordered a CT of Abd to r/o abcess or phlegmon(dont know what that is?)
I dont know, could this all just be a mistake and if not, how do I come to accept this? I have trouble taking meds b/c I find it hard to accept that there is something really wrong. Has anyone else dealt with this? What questions can I ask the Dr to confirm or deny my diagnosis? All of this is really scarey.

Veteran Member

Date Joined Jul 2005
Total Posts : 733
   Posted 1/15/2009 3:53 PM (GMT -7)   
Sorry things are so terrifying right now, newbie. Having crohn's can really suck sometimes, but it is NOT the end of the world, or of your life. You learn to roll with the punches.

As far as I know, there has only been ONE person on this forum who's diagnosis of crohn's has been retracted. Most of us are stuck with it. Mine was diagnosed by symptoms, and confirmed by a biopsy that was taken during a colonoscopy. Was your diagnosis changed after you had biopsies taken? If so, then I'm not sure how much wiggle room you have for hoping that it is wrong. THat being said, stranger things have happened around here, that's for sure.

I understand the denial issue. I go through phases where I feel completely and utterly betrayed by my body. People think they understand what it's like just because they've had the stomach flu or something, but no one without IBD can understand... no matter how good their intentions. When I'm feeling betrayed by my body, I tend to go a little wacky and start researching ALL KINDS of other possibilities, drugs, therapies, and symptoms. It's scary stuff, no doubt about it. All we want is for out bodies to function the way the darn things are supposed to function. It seems like such a simple request... or like it should be easy to fix, but it isn't.

Give yourself some time, newbie. Reach out to the people here, just like you're doing. We've helped eachother through some wickedly bad times, and we've also shared a ton of laughs. Stay connected to people, it's important I think.

When you go to the doc, ask him to explain to you exactly what confirmed the diagnosis of crohn's: was it bloodwork, biopsy, visual assessment? Ask him flat-out what the error margin is for whatever method was used. Ask him if he's ever diagnosed someone with crohn's and been wrong. These are ALL fair questions to ask your doc. HE is YOUR employee. Make him work. Make him answer every possible question you have before he runs off. If you leave that appointment feeling worse than when you walked in - it's time to find a new doc. It took me 6 or 7 before I found one that communicated with me the way I needed him to.

Best of luck with your upcoming tests. And don't forget, we're here if ya need us!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 1/15/2009 4:50 PM (GMT -7)   
It's not IBS if there is blood, unfortunately many get misDX with having UC when infact they have crohn's colitis...you're better off getting another scope if you're still having symptoms so you can hopefully get treated with meds and go into remission....BTW, the same meds used to treat UC are also used to treat CC (crohn's colitis) because those specific meds targe the colon where the inflammation is...plus you should also get scoped and probably even upper GI tests to make sure that CD is not also present anywhere eles in your GI tract since crohn's can affect more than one area at a time and CD is for mainly that reason, harder to treat compared to UC for most cases that is.

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

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