Crohn’s with a negative test

[artisam]

Hi,

Not a member of this particular forum, but I have received such support from the PMRGCA forum, I thought I would ask here for thoughts on Crohn’s on behalf of my husband. He has for many years suffered with symptoms and been tested for everything under the sun! Twice consultants has felt fistulas but MRA scans have revealed nothing. He has had numerous abscesses, constant Diarrhoea and abdominal cramps and cannot put on weight although his diet is healthy. The consultant he saw yesterday calls him the ‘problem child’ - all his symptoms point to Crohn’s but the test comes back negative. She has referred him back to Gastro asking them to think outside the box and perhaps treat it as Crohn’s to see what happens. Has anyone out there had experience of this? Can you have Crohn’s with a negative test?

Any advice would be gratefully received, this has gone on too long now and I am starting to worry about his mental as well as physical well being.

[jackdup]

What negative test are you referring to? Has he had a colonoscopy and a gastroscopy? Has he had a barium with follow through? What about a calprotectin? I have had Crohns for may years so perhaps the tests they use to diagnose Crohns have changed. I would have thought the scans would have detected it if it was Crohns.

[artisam in reply to jackdup]

yes he’s had the lot! I know that in some conditions ( mine for instance is PMR) symptoms can trump tests. I was wondering if this could be the case here with Crohn’s. All the doctors are at a loss

[jackdup in reply to artisam]

A colonoscopy is a good tool for finding or verifying Crohn’s disease, the problem is it is often in the small bowel and there is a valve between the small and large bowel that often times the scope can’t get by so in those cases they can’t see the small bowel.

[artisam in reply to jackdup]

That's interesting, thank you. More investigations needed I guess. Poor man, this has been going on for years and is just written off as IBS and has to put up with it. I'm sure he's not thrilled with the possibility of it being Crowns, but at least he'd know. Hope your condition is under control, thank you for responding, much appreciated

[jackdup in reply to artisam]

One thing that helped me was eating yogurt with probiotics everyday. It is by no means a cure and not everyone benefits, but for me it really helped with diarrhea. It took about 10 days or so before I noticed much of a difference and at one point quit taking it to see if it was just coincidental but it certainly appeared it wasn’t. You have nothing to lose by trying it. I use Activia mixed with a bit of Greek yogurt but suspect any yogurt with a probiotic would do the same.

Good luck and I hope you get some definitive answers soon, and if it has been sometime would certainly push for another colonoscopy. It may or may not be able to get into the small bowel but the problem could be in the large intestine and hopefully they will be able to see the small intestine as well. Getting a definitive diagnosis I’m sure would be a relief of sorts as then you know what you are dealing with. I know one of the blood tests they use is CRP or C Reactive Protien as it indicates inflammation but mine in the vast majority of cases is within the normal range and there is no question I have Crohn’s as I had a small bowel resection last December. They could never understand why my CRP was normal when I had active Crohns. A Calprotectin test as well as a FIT test may also be beneficial but I think a colonoscopy would be preferred.

[artisam in reply to jackdup]

Thank you for your response and yes yoghurt and probiotics are already part of both our diets and I do believe it has benefits. We know all about CRP as mine were in normal range before I was diagnosed with PMR and it also stopped the doctors identifying m y sons ruptured appendix as the CRP levels were normal - seems it’s a family trait!! I do think you are right about another colonoscopy though - hope the doctors are of the same mind. I’m not sure if he had had the other tests you mention, I’m assuming he has, but I will certainly ask him.

Onwards we go; thanks again for your response and we’ll certainly keep going with the yoghurt etc.

[jackdup in reply to artisam]

Take care and best of luck and let us know how things turn out once you’ve seen the gastroenterologist.

[Krobo in reply to artisam]

What about a capsule study where he swallows a capsule it's the only way to view the small bowel if they think possibly there could be crohn's there.

[artisam in reply to Krobo]

Yes someone else has suggested something like this. I had never heard of it, but when the referral appointment comes through I will make sure it is mentioned. Thank you so much more responding, take care.

[WytchHazel74]

When I had my first bout of symptoms and we didn’t know what was wrong, I got tested for everything under the sun, including Crohn’s, which came back negative. They were all blood tests, and the only positive result was for inflammation.

Fast forward 8 years and someone finally thinks to give me a colonoscopy and actually see the inside of my colon and the evidence was undeniable, it’s definitely Crohn’s. If he hasn’t had a colonoscopy then I would definitely push for one - actually seeing the surface of the bowel can be a game-changer.

[artisam in reply to WytchHazel74]

I know he had a colonoscopy at one time - can’t remember how long ago that was now. They know some5hing is very wrong, they just can’t seem to identify what. Frustrating doesn’t begin to describe it. Waiting now for another referral back to Gastro to see what they say. Thank you for your input, I hope your condition is now under control.

[SuzyQ67 in reply to artisam]

Try to look back & see how long ago his last scope was. Has he had the pill cam test done? You mentioned the dr thinking maybe putting him on medication, do you know which medication? Try to find out & let us know. I belong to another crohns forum & have seen people have symptoms for years with negative testing. They waited a couple of years & retested & got a dx. It's extremely upsetting.

[artisam in reply to SuzyQ67]

That is a really useful reply, thank you so much. He’s had so many tests I’ve lost track, but we have all the paperwork so will be easy to find out. You’re right it is uspetting and I’m worried he will just give up. Will go fully armed when he gets his next referral.

I really don’t know about the medication - she has just asked Gastro to perhaps treat it as Crohns and see what happens! Clutching at straws????

Thanks again

[SuzyQ67 in reply to artisam]

For 20 years I have kept copies of all of my testing in a folder. Also when looking for the scope report, look for the biopsy report too.

[artisam in reply to SuzyQ67]

Thank you. I do this with all my paperwork, but hubby has it in piles all over the place! It’ll be there somewhere!

[Valbaty54]

I was going to suggest a pill cam too. You swallow it and it takes pictures of the whole digestive system from top to bottom - literally! Any problem areas are then spotted in places where a regular scope cannot get.

[artisam in reply to Valbaty54]

Wow! Are they easy to get?

[Valbaty54]

A Gastro consultant would decide if it would be useful in difficult cases. It would be provided by the hospital. Worth asking about!

[artisam in reply to Valbaty54]

It certainly is. Thank you so much.

[TheGapMinder]

Has he had a feacal calprotectin test?

[artisam in reply to TheGapMinder]

I’m pretty sure he has. Is that the one that shows inflammation? I know blood tests were is the normal range but other tests - could have been that one, but I wouldn’t swear to it - show there is inflammation in his body somewhere, they just can’t find quite where. His last set of thorough tests were over a year ago, so they may all need repeating. I will certainly mention that one to him and start making a list!

Thank you for taking the time to reply; it is certainly helping me to ascertain what should be going on.

[TheGapMinder]

Definitely push for more tests again, and yes this is the one that shows inflammation. Good luck with it all. Half the battle is getting a diagnosis.

[artisam in reply to TheGapMinder]

And getting to see someone in the first place!!!

Thanks again

[TheGapMinder]

It’s extremely frustrating, but hopefully you can bothfind out what’s going on.

Also keep a diary, and note dates of symptom changes, if he is not already.