caret icon Back to all discussions

Suspected Crohn's

Hi,

I've been struggling all my life with gastrointestinal issues, and over the past few years my symptoms have started to really impact my life.

I've been seen by many different doctors particularly over the last few years, because I started to get periods of full body aches and fatigue, with abdominal pain I had grown to think was normal. My CPR markers were high during these periods (once was over 200) and I was seen by a rheumatologist who referred me to genetic testing which hasn't shown anything.

I've recently had a period of bloody diarrhoea and was told it could possibly be Crohn's, however all the tests I've had previously (endoscopy, colonoscopy, faecal calprotectin) have shown nothing.

After researching, I'm almost certain I have Crohn's, as I have literally every symptom mentioned. I have eye irritation, a mild rash on my lower leg, fatigue, stomach irritation, and these symptoms along with the diarrhoea (sometimes with blood) and abdominal pain all point to Crohn's.

Has anyone got any advice as to how I can push my gastroenterologists to do more testing as they're hesitant because they've done them before.

Thank you in advance!

  1. thank you for being here and sharing your health history. It is frustrating when all signs seemingly point to one disease yet it cannot be confirmed.
    Have you considered going to a different GI for testing? Sometimes having a second set of eyes to review your current records and conduct new tests leads to a proper diagnosis in the event something was missed the first time.


    --Julie (Team Member)

    1. Hi Julie, thank you for your reply.


      Yes, it's been incredibly frustrating. I recently paid for a private consultation with a different GI consultant, but apparently all the GI doctors in my area work together so I didn't feel I had a fresh perspective. I have considered going to a different doctor, which I may have to do but pay privately.


      Do you know how common it is for Crohn's to be missed?


      Thanks

    2. unfortunately, it is pretty common for patients to go undiagnosed with Crohn's. Actually, this article sheds some light on the journey of being diagnosed: https://inflammatoryboweldisease.net/spotlight/the-long-road-to-ibd-diagnosis.


      Please keep us posted on how things continue for you!


      --Julie (Team Member)

  2. Hi, Sorry to hear you are dealing with this. Unfortunately, it's quite common to be misdiagnosed, in my experience. For me, it took almost 6 months, numerous testing and several doctors before I was finally diagnosed. The last doctor finally figured it out because he just had another patient diagnosed. Now for me, this was back in the 1980s so Crohn's wasn't as prevalent, but the frustration I felt was like you.
    Have they tried a small bowel follow-through or PillCam? Mine was caught on a colonoscopy eventually, but I did all the other testing, one doctor suggesting it was in my head.
    I too think maybe going to another GI even though they all talk. Do some research on good GIs near you, or even not near you, it might be worth the trip.
    We're always here to listen.
    Let us know how you get on.
    Vern - IBD Team Member

    1. Hi Vern, thank you so much for your response.


      I'm sorry you had such frustration getting diagnosed. I went through that when I was trying to get a diagnosis of endometriosis. I think this is why doctors have dismissed my bowel symptoms - it was easy to just blame them on my endometriosis.



      You're right - I think a fresh perspective is a good idea.


      They haven't done a pillcam but I think this would be a great idea, and something I'll suggest. What is a small bowel follow-through?
      I had a colonoscopy four years ago, which showed nothing. However, I think it was long enough ago that would justify doing another one.


      Thanks for your support, it helps a lot.


      Katie



  3. Hi , When I had a small bowel follow-through it was drinking barium and they would take periodical x-rays over a few hours. The barium would show any abnormalities as it travels down the esophagus, stomach and small bowel. Not sure if it still done this way, especially with the PillCam now.
    Hopefully something helps you.
    Vern - IBD Team Member

    1. Hi
      Thanks - yes I think I had one of these when I was a child and it didn't show anything.


      I am aware that Crohn's patients can go into remission, during which time they don't have symptoms. In these times do you know if any evidence of Crohn's is seen in colonoscopies or other scans? It would be interesting to know, as I believe I have had various stages of active symptoms and periods of no symptoms my whole life.

  4. yes it has happened to me where, even though I have Crohn's, one colonoscopy didn't show anything because I was in remission at the time. Unfortunately, the next colonoscopy showed it back about a year later. Having a colonoscopy during a remission gave me false hope because it made me think I was in the clear knowing full well that I will always have Crohn's. It only happened to me once though.

    1. I'm sorry you've had to go through it all. It must be tough to manage. It would explain why it has never shown up, because I have had so many periods of symptoms and then nothing at all.


      The last few years, symptoms seem to be getting worse. But, they do vary a lot.

or create an account to reply.