Is it still possible to have Crohn’s even if I have negative tests?

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Hi, I have posted on here before but I have had enough of how unwell I have become and have no where to turn. 

About 3 years ago I developed these random ‘flare ups’ of pain that weren’t too intense and lasted for around 2-4 days. I wasn’t too bothered about it at the time as it only happened twice a year if that and the pain wasn’t too bad. However last year it got so much worse. The pain was so intense I was rolling around the bed in agony and I went to the toilet over 20 times in 24 hours. I lost 4kg in a week. I started to develop blood in the stool and mucus. This flare up lasted a whole month. 

This year however it has gotten even worse. I have had 3 flare ups this year already and the pain was so bad I was admitted into hospital needing morphine as Co-Codamol didn’t touch the pain. I have had small amounts of blood each time and loose stools. In my recent flare up I lost a almost a stone in 3 days which doesn’t seem possible. My GP has prescribed me Prednisolone in the past to try and see if it helps in any way and I found it did. I have seen a Gastroenterologist who originally thought IBS so I tried the low FODMAP diet and Buscopan and Mebervine during a flare up which didn’t help the pain at all. The diet also didn’t help as I don’t find food triggers my symptoms. I have had lots of tests. The tests I have had are

-Upper Endoscopy which showed lax hiatus

-Colonoscopy last year when I wasn’t so bad which was clear

-Small Bowel MRI- Clear

-Ultrasound- Ovarian cysts 

-CT Scan- Mild thick wall appendix with appendicolitith , feceal impaction in Cecum and ovarian cysts- Appendix was removed and Cysts have disappeared 

-Flexible Sigmoidoscopy- Clear except reactive change which means some inflammation 

-Calprotectin test come back high 

-Blood test shows Anaemia 

As the majority of my tests come back negative is there still a chance I could have Crohn’s as I feel my symptoms are too severe for IBS and I’m sure you don’t get blood, anaemia or inflammation with IBS, but the Gastroenterologists are confused and think it’s ibs as nothing definite has shown up. I don’t know what else I can do I am awaiting a Capsule Endoscopy but I worry this will come back negative too and if it does I don’t know what else I can do as I know there’s something wrong with my body and I honestly can’t live like this.

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6 Replies

  • Posted

    It can't be IBS. IBS is just a condition that causes the muscles to move stool in an uncordinated way. It doesn't cause blood in the stool. Most doctors don't like to diagnose IBD unless they find clear evidence and that meant in my case a colonoscopy when I was flared up. I had been having issues since I was very young and it took the doctors 35 years to get the proof that I had IBD. They called it Ulcerative Colitis at first, but I knew I had Crohn's as there were more things going on than just the desending colon. Now I get the biopsy back and they can't determine if I have UC or CD. Probably because the damage is mainly in my colon and that suggests UC, but the damage is deep and spotty which indicates CD. So they will figure it out sooner or latter, but the sooner the better, then they need to get you on a medicine like Entyvio to help with it. I am in pain a lot from IBD, not just my gut. I get joint pain, skin issues, hip and back pain. Sometimes I get so weak I can't do much at all. It is a tough disease to live with, but it can be done. I am proof of that, there are many that suffer from IBD and we just have to take things a day at a time and try to get better. You will also, hang in there and get a scope done when you have bad symptoms.

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    • Posted

      Hi, Thankyou so much for replying. Did a lot of your tests come back negative? I have only ever been tested when I feel fine.  I really hope they correctly diagnose you soon and then you can get some treatment. I also get joint pain and skin issues and also problems with my eyes during a flare up.
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  • Posted

    Hello.

    I had many tests done before I was finally diagnosed, I.e.: blood tests, stool samples, urin samples etc but they were all clear so I was sent home again and again!

    It wasn't until I had an x-ray of my abdomen and bowel that it showed severe inflammation so they decided to investigate further.

    Have you had these tests done during a flare up? Because if you had them done when things had calmed down that's maybe why nothing showed...my sister was told for years that she just had piles and then ended up in hospital for 2months and had to be tube fed because she had severe crohns...

    The only other thing I can suggest is to contact other GI specialists online and ask their advice which is something I did before I got diagnosed and I got some good advice from them...

    All the best, hope you get sorted.

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    • Posted

      Hi, Thankyou so much for replying! Did you have a colonoscopy that was clear? I have only ever been tested when I feel fine. Can evidence of Crohns completely disappear when you feel fine? My Gastroenterologist thinks my symptoms are Crohns but my test results suggest otherwise so I don’t know what to do to convince them that they should keep testing etc. He said if the Capsule Endoscopy comes back as normal then he will diagnose me with IBS which I honestly feel I don’t have.
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    • Posted

      Hello,

      All of the smaller tests like blood tests that I had done all came back clear. It wasn't until I went to A&E during a v bad flare up when I was in agony and vomiting that they simply did a quick x-ray and it showed that my bowel was very inflamed so they kept me in for 6 days.

      So I can only suggest that maybe during a flare up you could attend A&E and ask if you can have an x-ray or CT scan done??

      Also, the signs and symptoms of crohns wouldn't fully go away when you're not having a flare up but the inflammation would ease a lot.

      Hope that helps

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  • Posted

    I thought I had Crohn's for a long time, like you. I had negative tests and now I am being checked out for endometriosis with a laparoscopy booked next month. It can also cause a lot of bowel issues (and paiiiiin) including blood in stools. It may not be relevant, but you could see if you have any other symptoms which match. 

    Best wishes, 

    Becky

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