How were you diagnosed?

[mommy1st]

I was just wondering how everyone else was diagnosed. I see alot about blood work and colonoscopies but I was just wondering How were you diagnosed and How long did it take until you had an actual diagnosis?

For me it was a quick diagnosis. I was 10 years old they thought I was having an appendicitis so I had laproscopic surgery and my appendix was fine but they saw that I had Crohns and that was it.

 

[Colt]

I went through every GI test imaginable. I had all the standard blood work done too. I clearly had inflammation and my intestines were extremely painful. Frankly I hadn't had it long enough to develop clearly visible signs and most of my trouble seems to be just beyond the ileum so out of colonoscopy range. Because I wasn't complaining of weight loss or diarrhea no doctor wanted to call it crohn's. They were stumped so they passed me on to another doctor probably a dozen times. Finally I got a doctor who simply put his foot down and said that it fits crohn's disease and nothing but crohn's disease so that's what it is now let's start treating you.

 

[Creepy Lurker]

Blood test and sigmoidoscopy was all that was needed for me. I have a pretty bad crohn's colitis, so it was easy to spot. The only real difficulty was determining if it was crohn's or UC. Biopsies and images from the scope both said crohn's.

 

[Isla]

I had my first flare 8 years ago and it lay dormant until last year. But was not diagnosed until a couple months ago through the pANCA ASCA blood test and subsequent response to Crohns medication. All other tests; colonoscopy, biopsies, and pill camera were all negative.

 

[Babe123]

i am still not diagnosed.. although i am having all of the symptoms.. dioreah mostly but some constipation, weight loss, nausea, very sore stomach, fatigue, stomach pains etc. been going on since christmas when i was taken to hospital with vomiting blood and blood in my stools. all my tests are coming back normal apart from one which showed a narrowing and thickening of my illieum.

my doctor is sure that its crohns or IBD.. but my consultant keeps faffing about telling me that all i need to do is eat..hmm..he should see its not as easy as that. im sure he thinks its in my head..its not like i want to be ill. i want my life back how it used to be
x

 

[bwightman]

I was diagnosed after presenting with C. Diff. colitis. When the antibiotics they gave me for that didn't work, they took note of my family history (Dad has Crohn's also, but wasn't diagnosed for over 20 years), did another CT scan and a sigmoidoscopy, and voila. Crohn's. They're still trying to figure out the best treatment course for me thought. So far, we've ruled out Asacol or Pentasa and it looks like the next step will be one of the biologics.

 

[AgB621]

My diagnosis isn't quite official either, though I can't imagine there is very much doubt at this point. Like bwightman, I too presented with a C. Diff. colitis. The antibiotics they gave me did help with the infection, but I think they also started me on Asacol at roughly the same time or very soon after. A subsequent scope of both ends was negative, as was a CT Enterography. I was positive for the Crohn's antibodies, but apparently a fair percentage of people are who don't have Crohn's. My doctor said that just watching it for awhile might be our best bet. A lot of signs point to Crohn's, particularly this most recent flare (if that is indeed what it is), as well as a worsening of symptoms with high fiber foods and fresh fruits. We stopped the Asacol in July but I'm back on it now. My doctor also brought up biologics, but I'm very nervous about doing something to suppress my immune system. I'm a college student, I interact with so many people every day, I can't afford to get sick all the time.

 

[Paulah28]

When I was in college in 95 I was in a lot of pain and went through all test known to man with no official diagnosis. I decided to brush it off and go on with me life which was the biggest mistake. After having 2 kids and making sure they were happy and healthy I decided it was time to take care of myself so I went to a GI about 2 years ago. He thought is was IBD and had me go for a colonoscopy to make sure. Then he realized it was CD. That night I felt the worst pain imaginable and did not know what was wrong. I had had several colonoscopies in the past andnever flet like that. I went to bed hoping I would feel better. At about 4am I was in so much pain I could not move so my husband called an ambo and was rushed into emergency surgery b/c when he was pulling the scope out it tore my intestine...not a good thing. I could go on and on about the rest but I am a functioning human being again and as of 6 months ago an in remission.

 

[amor151]

last year after a month of two of having pretty much no appetite, going to the toilet every other minute and losing two stone in weight i finally went to my GI. he put it down to IBS, put me on some tablets and sent me on my merry little way. a week later i was back having lost half a stone more in weight and having not eaten in 2 days and was sent to hospital as an emergency case. had an endoscopy the next day (picolax.......ewwwww) and was diagnosed with crohns and put on a very high dosage of prednisolone and pentasa. thankfully my diagnosis was quick and accurate but the crohns was already very much developed so has only just began, a year on, to settle down

 

[theability]

My diagnosis was easy, RLQ abdominal pain, scale of 20+, high fever high white count, did emergency laparotomy and found nice little appendix, completely swollen terminal illuem.

Regional enteritis it has been...

 

[teeny5]

I had stomach pains for a couple of months and was exhausted. Blew it off as stress until one day I had terrible cramping so I called the dr. and did the BRAT diet (February). I felt better after a week or so and thought I was fine. Then it all came back and by then I had lost nearly 30 lbs from my small 5 ft frame. I went to the dr. who sent me for a CT scan and blood work (May). He saw inflammation in my CT and sent me for a colonoscopy (June). The GI doing the colonoscopy saw inflammation and ulcers in the colon and skip lesions. He said it was Crohn's and put me on Asacol that day. The GI I ended up getting as a permanent one wasn't sure about Crohn's so sent me for an upper GI to check the small intestine and did the Prometheus test (July). He said I for sure had IBD but wasn't sure of either CD or UC. The upper GI came back with nothing and the Prometheus test came back showing "not consistent with IBD." Boy did he seem ticked with that test! Said that I still have IBD and that the test didn't help. So, now I am officially diagnosed with IBD...he still won't commit to either CD or UC.

 

[Ghostwind]

I actually went to the hospital for chest pains (had been having them for some time) and after the heart tests came back negative, they referred me to my current GI doctor who ran some more tests and determined I had acid reflux, Crohn's (from a genetics blood test) and IBD.

 

[mommy1st]

It seems as if Crohns is diagnosed in one of two ways either very quickly or very very long and drawn out with test after test after test. I'm really glad this forum is here especially for people who don't quite have a diagnosis yet because something that they might see as insignificant might actually be something that they should be sharing with their GI. Good luck to everyone

 

[teeny5]

I totally agree, mommy1st, I believe in telling the doctor everything even if it seems not related. It might give them clues to something related to IBD or even something else.