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Crohn's Disease
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Posted 6/11/2010 10:03 PM (GMT 0)
Well, I was seeing a big-shot at the Cleveland Clinic who I really thought was going to help me...all he's done for me is take me off all of my medications, do an endoscopy (which he found inflammation on the biopsies from), and tell me that I don't have Crohn's disease. Instead, the two doctors before him who said I DID have Crohn's are wrong, and I actually just have some mystery illness...probably IBS, he says. I kind of feel like I'm not enough of a challenge for him to waste his time on me.
Meanwhile, I've been suffering. Just this morning I started my period (sorry if that's TMI), and it's been hell since. I haven't been able to get 3 feet from the toilet without having to go back. I've been in so much pain at points that I've felt close to passing out and threw up three times already today.
I keep losing weight, keep being able to eat less. I'm so frustrated.

Do you think I should go back to my doctor that I saw at the University of Chicago who said I do have Crohn's and ask her to check me over again? That's what I feel like doing. I'm so sick of waiting for this guy to do something for me. Sigh.

/end rant
Posted 6/12/2010 12:37 AM (GMT 0)
On what evidence did the other Doctor's make the initial diagnosis make?

If you see any of my posts, making a Crohn's Dx is tricky ... and other illnesses can mask it. My opinion is that just like the most conservative Democrat may be no different than the liberal Republican, I've always wondered when/how IBS and IBD part ways ...

I have severe symptoms without pathology of disease .. had a bowel obstruction in Dec and a clear CT scan two days earlier .. no elevated WBC .. go figure! My GI doc said he had never seen anything like it. The only conclusive testing for me (vs a biopsy) was the Prometheus test - a genetic marker / blood test. Expensive but a pretty good indicator ...

Were the meds working? If so, I would go back to the prescribing doctor as what is the goal here? To feel better .. all in all, who really cares what we call our disease .. are you are in "Dis" "Ease" ...

Keep going to doctor's until you get a conclusive diagnosis and treatment plan that works ... the dx may not be what you initially think, but the goal I would think is to feel better and you sure need a break!!!

Hang in there!

L
Posted 6/12/2010 1:44 AM (GMT 0)
What type of endoscopy was it? There's about 20m (or is it feet? One or the other. Must be feet, as metres sounds a bit too long... <_<) of small intestine; the only way to view all of it is with a pill cam endoscopy. If you didn't get the pill cam test done, I think that's what you need at this stage. And then of course there's the colon and the ever fun colonoscopy.

Also, did the meds work while you were on them? If they did, it sounds like it may be time to go back on them. If you do have Crohn's (which I hope you don't), it will be almost duty bound to rear its ugly head at some point in the future and make itself more visibly in evidence. Some people do go years before they get a diagnosis. It must be horrible for them, but I do see it from the doctor's point of view as well; they can't really diagnose a disease that they can't find reasonably convincing signs of =/

(But on the other hand, not all docs bother to do the testing they should.)
Posted 6/12/2010 3:21 AM (GMT 0)
Sorry for the lack of information.  I was diagnosed through a colonoscopy, where they found "textbook" Crohn's in my distal ileum.  Same with the second doctor.  I've had everything but a pillcam, which my doc in Cleveland doesn't want to do (I've talked to him about it), for unknown reasons.  There was inflammation on the endoscopy that he did, but he said he thought it wasn't Crohn's...didn't think it was Celiac's either.

My WBCs are constantly elevated, I'm anemic, my SED rate is elevated, I have recurrent fevers between 100-101 degrees, and erythema nodosum.

The meds I was on worked for about 2 months (entocort and pentasa), then I became symptomatic again (before I was moving to Chicago for college). My doctor in Chicago (the same one I want to go back to) did some more of the same and said my Crohn's was still active.  She put me on 6MP which I didn't tolerate well.  My last doc put me on Humira which did work, but now this guy in Cleveland took me off everything.

I'm frustrated that I'm not being treated.  If it is Crohn's (God willing it's not), then I don't want to be off a matinance med for too long.

Posted 6/12/2010 3:22 AM (GMT 0)
The endoscopy was one of the longer ones, the inflammation they found was in the beginning of my ileum.
Posted 6/12/2010 4:51 AM (GMT 0)
my thoough it is that if you're not sure about a doc or his ideas/treatment course see another...and another...until you find a doc you are comfortable with...just because a doc has a rep doesn't mean he's the right doc for yu personally. good luck. hope you feel better!
Posted 6/12/2010 2:03 PM (GMT 0)
I think you should go back to your old doc who originally diagnosed you. This current guy just doesn't seem to care in my opinion. Hope you get some relief soon. Hugs!
Posted 6/14/2010 3:53 PM (GMT 0)
IBS can be just as debilitating as crohns - I know because my sister has it. Don't be so quick to dismiss the Cleveland clinic guy - but also don't put off getting yet a third opinion if you're not comfortable with this guy.
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