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Crohn's Disease
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Posted 12/15/2009 5:57 PM (GMT 0)
So how did you all get your crohns dx? 

I used a bunch of different stuff:

I had a small bowel follow thru (a series of x-rays where they follow the barium down your gi tract)

pill camera

colonscopy

regular Endoscopy (3 foot scope- EGD)

long (18 foot scope) Endoscopy

Unfortunately the Ct scans, regular xrays, and first colonscopy missed my disease areas...

How about blood tests you regularly get?

CBC-complete blood counts

chem panels

liver function (because I am on Methotrexate)

 

Posted 12/15/2009 7:30 PM (GMT 0)
I got my crohns diagnosis after months of pain/symptoms, at which point they decided to do an ultrasound on my lower right quadrant (where the pain was). They saw that it looked like crohns but since you can't say for sure from an ultrasound, I got a colonoscopy that weekend and was dx'd!
Posted 12/15/2009 9:47 PM (GMT 0)
I got mine after my first routine colonoscopy (they decided that I should get one at the same time as upper GI I was getting to please my doctor who did not believe that I was controlling my GERDs with diet). Never expected it - but it did explain a few things like joint pain and reflux that had been happening for several years before. I had very few episodes that fit the symptoms of flare and never made the connection with Crohn's. They did a few other tests - SBFT and another C-scope to confirm the problem and now I am on an annual scope schedule.
Posted 12/15/2009 10:12 PM (GMT 0)
Hi Navy . . . I had had symptoms for some years but assumed IBS. Then I had a major GI bleed and was hospitalized. Colonoscopy showed several clear ulcerations (one of which was the bleeder) and biopsy was clear for granulomas, so the dx was pretty simple. Had a SBFT a couple of years later to monitor disease status. I was fortunate to get a dx right up front, unless you count the 12 years or so until the bleed when I assumed just "nervous gut."

Posted 12/16/2009 12:26 AM (GMT 0)
I was sick for about a year, had an endoscopy which didn't show anything... they thought my stomach wasn't emptying properly (my pain isn't exactly typical of Crohn's), but I was sure it wasn't that so I eventually pressured my doctor into giving me a barium enema.. The radiologist had to stop part way through because he said it was going to hurt me if it continued. He said he thought he knew what was wrong with me, I asked if it was Crohn's and he said yes. After that, I was referred to a GI, started on meds and had a colonoscopy a couple of weeks later, which is when I had my official diagnosis. Unfortunately we suspect there's more to my case than we've seen so far. I'm getting an ultrasound on my gallbladder on Monday to see if that's been the source of a lot of my pain/nausea.
Posted 12/16/2009 12:40 AM (GMT 0)
I was technically diagnosed after surgery, but CT lead them to do surgery, and they were pretty sure what caused all the damage. For some time before the CT my doctors thought the pain was from ovarian cysts because at one point I had an ultrasound and had cysts. I had a follow up ultrasound and the cyst was gone and the pain was still there, so I was sent for a CT.
Posted 12/16/2009 3:56 AM (GMT 0)
EGD was the first to show signs of it (ulcers)
Then went on to a small bowel enteroclysis (inflammation and thickening)
Both were "explained away" by "It's probably just from ibuprofen usage" (I hadn't touched the stuff in 6 months) or "You probably just had an infection when we did the test." Useless doctors didn't want to follow up on that -- instead, they tried to pawn me off onto a rheumatologist to test for lupus. I didn't go to the rheumatologist, and found a new doctor.

New doctor ordered a Prometheus test, which was positive for Crohn's.
Pill cam came back showing ulcers suggestive of Crohn's.
Colonoscopy showed inflammation, biopsy showed Crohn's/active imflammation.

It's never shown up on a CT scan or blood test, other than the Prometheus test, which I find a little odd.
Posted 12/16/2009 4:54 AM (GMT 0)
I get bloodwork (CBC, Chem panel, liver function) every 3 months, though I've had more done every month for the past 5 or so months since liver function tests have been abnormal.
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