Diagnosis not valid

[Cb3365]

Hi all,
I’m looking for some advice please.

I was diagnosed with Crohn’s Disease back in 2015 by biopsies obtained from colonoscopy.

Over the years I have been prescribed multiple courses of steroids as well as asathioprine, mercaptopurine, methotrexate, infliximab, adalinumab and vedolizamab and reacted to all so on no ongoing medication.

My recent appointment with Gastro(same doctor who diagnosed me) is now stating that I have not got Crohn’s and the diagnosis is not valid. Is this even possible as the biopsy report shows that I have inflammation in keeping with Crohn’s Disease. I understand it can be in remission however I though that Crohn’s was a life long condition.

Has anyone had the same or similar experience?
Thank you in advance

 

[Lisa]

Did he explain why he is changing his diagnosis? Crohn's does not just 'go away'....... Have you had recent imaging/testing done?

 

[Cb3365]

Because recent CT scan didn’t show any active inflammation. Calprotectin was at 78 last time it was checked. I have blood and mucus discharge now. GP usually prescribes steroids in these situations but will not due to diagnosis not being ‘valid’

I didn’t think it just goes away. I know it can flare up and go into remission.They have treated me over the years for Crohn’s flare ups when my GP admitted me to hospital for IV steroids.

 

[Lisa]

I'd be looking for a second opinion....inflammation can indeed go away (remission) but may also be there but microscopically....a CT scan shouldn't be used to diagnose - a colonoscopy is the standard, along with bloodwork, etc.

If that was the case with CT scans - I'd have had my diagnosis changed multiple times over the years, every time I was in remission.

 

[Cb3365]

Ok thank you, I was originally diagnosed by colonoscopy biopsies in 2015. I just can’t understand why now after all these years it isn’t valid yet treated me all these years. I will look for second opinion moving forward.
Thank you