Do some people never get a diagnosis

[jazzman]

Just handed in my 4th Faecal calprotectin test, see my gastro in 2 weeks time for results. Last 3 have been 53, 212, 9.
I have taken 6 of the main Fodmap culprits out of my diet ( garlic onion chilli etc) and have been 90% well. Still get a few cramps and use the toilet but nowhere near as much. The gastro I've seen at the moment is the second one I've been seen in the last 4 years. Sometimes when I see them it's like being on a merry go round, no clear answear, if I'm going through a bad patch and I asked for medication it's no because we're not sure what's wrong. I used to take imodium every weekend now I have not taking one for 5 weeks. I still carry them just in case. Cheers

 

[Cross-stitch gal]

I'm afraid I'm not sure. One thing I do know is that for some, they get a diagnosis right away and for others it'll take months or years.

For me, I'm pretty sure that I've always had it since I was born. However, they started testing me the summer I turned 16 and continued testing me into my Junior year of high school(when I started losing weight for no reason). But, nothing was ever found and I was so tired of the tests that I asked my parents to tell the doctors to quit testing me.

Then, just when I moved into the dorms at college at 18 the symptoms got worse and I called the advise nurse and was told to go in right away. This is when my IBD was found (as seen in my signature) and when the medication and all started for me.

The hardest thing is knowing that there's something wrong with you, but nobody can seem to find it. But, we're here for ya. Please keep us updated. :hug:

 

[awoenker12]

I am afraid to say that some people may never have an official diagnosis. Certain people may have symptoms of Crohn's but may be misdiagnosed for another disease. For example, some of the symptoms of IBS are very similar to IBD and may be mistakenly diagnosed for one or the other. For me, it took six years to get an official diagnosis. I originally had a colonoscopy back in February 2012, and the inflammation was so bad, they could not complete the colonoscopy. I was put on prednisone and pentasa, and amazingly, I had no symptoms for six years, until I started to flare up again and my doctor suggested to get another colonoscopy. This time, they were able to complete the colonoscopy, and they told me without a doubt that it was Crohn's disease.

 

[jazzman]

I am afraid to say that some people may never have an official diagnosis. Certain people may have symptoms of Crohn's but may be misdiagnosed for another disease. For example, some of the symptoms of IBS are very similar to IBD and may be mistakenly diagnosed for one or the other. For me, it took six years to get an official diagnosis. I originally had a colonoscopy back in February 2012, and the inflammation was so bad, they could not complete the colonoscopy. I was put on prednisone and pentasa, and amazingly, I had no symptoms for six years, until I started to flare up again and my doctor suggested to get another colonoscopy. This time, they were able to complete the colonoscopy, and they told me without a doubt that it was Crohn's disease.

So true, my new gastro says could be ibs but inflammation is not associated with ibs. Can crohns be good one day bad the next. Or bad in the morning but ok mid afternoon? Or a flare up is full on. Cheers

 

[fire bob]

The bad part is there not not a test that is yes or no for crohns.


I went a long time without getting told for sure. For about the first 3 years of seeing a GI it came down to bleeding diverticulitis with IBS. I was even on Humira till my last diverticulitis type round.


I think that if i would of had CT scans the same week as my colonoscopy I would of had better treatment in the long run. Both test show different information and looking at them at the same time gives a true look into whats going on.

 

[Merv S]

The length of time taken to confirm CD is a source of contention and frustration for many of us.

In my case, a gastroenterologist who treated be for years performing several colonoscopies and gastroscopies would not state categorically that I had CD. This was because biopsy results came back as be 'atypical'. He never did elaborate on this issue.

I could never quite understand why when there was evidence of evidence of inflammation, stenosis and eventually strictures at the terminal ileum ,he adopted this approach. I do remember him saying that while it was not definitely CD 'We might as well treat it as being so'!

Ultimately, I sought another opinion at a public hospital. After more years of taking ineffective medicines ( with nasty S/A's) I requested a surgical referral, being sick and tired of being given the run around and feeling somewhat ill.

The end result ( no pun intended) was that 35 cm of ileum was resected with three out of four strictures removed. Furthermore, bingo - I had a positive CD diagnosis. Now on Stelara and doing ( fingers crossed ) well.

I guess the moral of this tale is that if your circumstances permit, sometimes a second pair of eyes can be beneficial.
Cheers,
Merv

 

[awoenker12]

Can crohns be good one day bad the next. Or bad in the morning but ok mid afternoon? Or a flare up is full on. Cheers

For me, I am either in remission, or I am flaring. I really don't get good days or bad days. I typically notice my symptoms will gradually get worse like looser and more frequent stools, weight loss which is also a big indicator for me. However, when I flare, it is not extreme- I just notice slight weight loss and more frequent and loose bowl movements, no abdominal pain or cramps.

 

[theflightless]

I should think it's very rare. The signs of Crohn's are pretty clear (elevated C-reactive protein, anemia, response to steroids, narrowed intestines). A doctor should be able to test for any of these, and upon finding one it's an easy dunk should the others then be discovered in followup tests.