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My GP said Crohn's is difficult to diagnose - worried.

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Crohn's Disease
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Posted 8/31/2016 10:58 PM (GMT 0)
Hi - as previously said I'm almost sure I have Crohn's or some type of IBD.

I should have gone for a colonoscopy in June, but I had a lot of stress in my life, things having just passed and events come, so I cancelled the colonoscopy. However, I'm now rebooked in for 13 September.

But seeing my GP today to get the re-referral he said that it's difficult to diagnose Crohns.

Is he correct?
Posted 8/31/2016 11:10 PM (GMT 0)
Yes and no. Do a colonoscopy, it will come back positive or negative based on visual, biopsies, etc. If it is negative, there's a possibility the colonoscopy couldn't go up far enough to see anything. In that case, you can have an MRI or even a pill cam (swallow a camera that takes pictures as it goes through the digestive tract). That's enough to diagnose 99% of cases.
Posted 8/31/2016 11:17 PM (GMT 0)
Thanks for the quick reply. I'll see what else I can find.
Posted 9/1/2016 3:20 AM (GMT 0)
I would say that yes, it can be hard to diagnosis. Especially early on in the disease. Seems like they can miss it, or misdiagnosis it pretty easily. But you are on the right track by having a colonoscopy. I was 19 when I first got sick and most of the doctors dismissed me without wanting to do tests. Or they'd do basic tests that wouldn't find it, like blood work, stool samples. The furthest I got was a barium enema which didn't find it either. Took me almost bleeding out for them to finally do a scope. I'm sure they would have found it much earlier if they would took me seriously earlier on. You just gotta keep pushing for answers sometimes.
Posted 9/1/2016 4:00 PM (GMT 0)
Crohn's is tricky in that it can manifest anywhere in the GI tract (mouth to anus) so there's a lot of space to cover. It also has a lot of extra-intestinal manifestations like arthritis and eye inflammation and a lot of diseases and disorders that either appear concurrently or imitate Crohn's (e.g., ankylosing spondylitis, IBS, Lupus).

Personally I think the pill cam is the optimal way to diagnose because it takes pictures of your entire GI tract. The main reason not to have a pill cam would be if you suspect a stricture, but otherwise it's quick and easy. I had one in 2006 and my GI said it very clearly indicated spots of active Crohn's; he confirmed this through a colonoscopy. I would think the pill cam is even better now (e.g., higher quality photos). I had a small bowel follow-through several years earlier (I suspect that's when I started to develop Crohn's) but it didn't find anything.

You really need to be proactive about identifying disease and treating appropriately, so it's great you rescheduled. A lot of people get nervous about colonoscopies but the prep is the worst part, and even that isn't nearly as bad as it used to be (the stuff you drink now is so much better than it was a decade ago).
Posted 9/1/2016 4:31 PM (GMT 0)
Oliver, vitaka is right on the money. It can be difficult to dx & happens all the time even today. I had a 15 yr history of problems before being dx'd. Everyone including ER drs missed what was going on. I ended up having an emergency resection while on vacation when I was dx'd.

Keep your appt & don't sweat having a scope. Take care.
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