Just been Colonoscopy no diagnosis :-(

[Crafty.Pie]

Having a down day. Been for a flexi sig this morning. In the hopes of getting a diagnosis. GP was predicting Crohn's as calprotectin was high.

Endoscope nurse said that calprotectin would be in the 600's for crohns and mine is only 149.

Did flexi sig only large intestine. They were cramping so much it was painfull!

Come away with no diagnosis and now have to wait to see consultant again. To see what she is going to do next.

I'm so upset I just need help with my symptoms

 

[ronroush7]

I am so sorry.

 

[scottsma]

I'm almost sure that 60 is the norm.in the UK.Mine was only 300 when I was dx'd with crohns colitis last year.I was dx'd with proctitis in 2006,after a sig.,and was prescribed suppositories (asacol) which worked quite well,although I still had minor flares regularly.
I'm assuming you are in the UK ? The waiting between appointments is usually approx.6-8wks.If you feel unwell you could get in touch with the IBD nurse at your hospital or visit your GP,although he might be reluctant to prescribe anything until your GI sends your results.Feel better soon.

 

[Grumpy]

Don't know where the endoscopist is getting that from..:confused2:

https://en.wikipedia.org/wiki/Faecal_calprotectin

As a rough guide, my GI nurse says 200-400 normally means you require medical treatment, over 400 is flare territory. I think the standard Brit ones cut off at 600, since I've only ever heard mine referred to as 'over 600'.

Do you know if they took biopsies (probably did)...if so, it is poss that your GP might be able to see results of those pretty sharpish.

Sorry this probably doesn't help much but hope something positive happens soon.

 

[Clash]

They can't have ruled out Crohn's disease with a flex sig. In the diagnosis process of CD a flex sig can be fairly useless since it only allows viewing and biopsy of the end of the colon. Crohns disease can affect anywhere from the mouth to anus of the GI tract. In fact, the most common area of active disease is the ileocecal area which is the end of the small bowel start of large bowel so the flex sig comes nowhere near that area.

I would push for a colonoscopy and upper endoscopy. Imaging can also be helpful.

I've seen a number of members state their first test is a flex sig which seems like a waste of an invasive test when they are concerned it is CD.

Hopefully the follow up visit the doc will offer a colonoscopy and/or imaging if he doesn't push for it and definitely don't allow him to say he's ruled out CD.

 

[Clash]

Also, as far as the normal reference range for fecal calprotectin it really depends on the lab.

In the US, if labs are done by Quest diagnostics the NRR (normal reference range) is

Reference Range(s)
≤162.9 µg/g

which means anything under this number is considered in the Normal range.
Source

Labcorp, another lab used frequently in the US, had a NRR of <50 ug/g, so anything less than 50 was normal but that was recently raised (on my son's last lab report) to <150.

Due to some digestive issues I had a fecal calprotectin done as well as lower and upper scopes and MRE. My fecal calprotectin result was like 165 but the results of all tests only found gastritis (which when treated solved my issues. Since gastritis didn't elevate fecal calprotectin results and a latter test showed the result at 150, that is just my norm.

Lastly, fecal calprotectin isn't 100% accurate, for some it is not a great test. Some studies have shown that small bowel disease doesn't always give the high numbers seen with other areas during a flare.

 

[Crafty.Pie]

Thank you all so much for your helpful replies. I've really had a hard time finding out about fecal calprotectin levels.

I am in the UK. The discharge nurse said just explained that they had no results for me this time. She was very helpful in explaining that Crohn's could be elsewhere in the tract but it was up to the Consultant to arrange those tests if she wishes

'Clash' I will push for a full colonoscopy then. Glad to know that those Calprotectin levels must mean something.

'Grumpy' They took no biopsies. And the endoscopist was rude and unhelpful at best.

Youve all made me feel alot better and now I know to push for the next tests

Thanks for the support

 

[my little penguin]

Also push for imaging
Since crohns can hid in the very long unable to be seen small intestine
( imaging mre is the only way to see the whole thing)
Good luck
Btw we left Ds first colonscopy with the " your kid looks great inside - might be just food intolerance ) to a week later biopsies confirm crohns from the top to the bottom

Hug