False Crohn's diagnosis?

[stevep]

Hello,

I'm just curious if anyone here has ever received a major inflammatory bowel disease diagnosis that was eventually retracted by another doctor. I know it's common to get the catch-all "IBS" label early on, but I'm talking about the reverse - one gastro specialist diagnosed me with an inflammatory bowel disease and another specialist later changed it to IBS.

I got referred to the first gastro specialist when I got health insurance back in 2015. At the time I'd been suffering from hours of daily diarrhea for the previous five years and had swollen joints and recurring iritis. This doctor diagnosed me with Crohn's disease after finding inflammation and ulcers in the duodenum and other parts of the upper small intestine, along with iron deficient anemia. However, at the time I declined treatment with an immunosuppressant because I wanted to make sure that the condition was absolutely impossible to manage on my own before I resorted to such a harsh medication.

Fast forward to this year, and I finally caved and decided to seek treatment after exhausting all other options - every supplement imaginable, countless dietary changes, low-fiber and high-fiber, etc. I've had iritis three times already this year and have been having black diarrhea every day for the past six months on top of constant physical exhaustion.

Surprisingly though, the new doctor found no inflammation or other abnormalities during the colonoscopy, and today he declined my request for an upper scope because he thought it would be pointless when my colonoscopy showed no problems.

I thought the diagnostic criteria for Crohn's was much more specific than this. How could a doctor manage to incorrectly label me with Crohn's in the first place? I still have my paperwork from the original upper G.I. endoscopy, and it specifically says that the ulcers and inflamed tissue were all located in my upper gastro system. The only abnormality found in my first colonoscopy was one ulcer on the ileum, which is now apparently gone.

I'm very confused, and it feels like I'm even further from getting help than I was three years ago.

 

[xmdmom]

The reasoning of the second gastroenterologist seems strange. You can have active inflammation in the small intestine with a normal colonoscopy. Did you point blank ask the second gastroenterologist "If I don't have Crohn's, what gave me the ulcers seen on endoscopy before?"

Did you have any blood work recently to look for inflammation or anemia?

Did the doctor check your stool for blood?

I would consider going to another doctor.

 

[stevep]

The reasoning of the second gastroenterologist seems strange. You can have active inflammation in the small intestine with a normal colonoscopy. Did you point blank ask the second gastroenterologist "If I don't have Crohn's, what gave me the ulcers seen on endoscopy before?"

Did you have any blood work recently to look for inflammation or anemia?

Did the doctor check your stool for blood?

I would consider going to another doctor.

He didn't do a stool test, though I did pay for genetic stool testing via Enterolab a month ago, which found severe fat malabsorption and several food intolerances, especially gluten. I also have positive bloodwork for celiac disease from years ago, though no gastro doctor will acknowledge these results unless I eat gluten for 12 weeks to get a positive biopsy, which would be a hellish ordeal that I'm not willing to put myself through. I'm starting to wonder if the first gastro doctor had mistaken celiac disease for Crohn's.

I don't have an opportunity to speak to the doctor in person - at this point I'm just relaying messages through his receptionist. I tried to schedule a follow-up appointment and she told me "We don't normally do follow-up appointments", which I'm skeptical of. I suspect they're giving me the brush-off because they think I'm a healthy person wasting their time. If I want to get an upper scope, I'll have to find another doctor altogether.

My blood test for inflammatory markers came up normal, which is typical for me. My blood results have only shown inflammation once, no matter how severe my symptoms are at the time. I'd had iritis (diagnosed by an ophthalmologist) for three straight months when this last blood test was given. Considering that iritis is by definition an inflammatory condition, I'm baffled that it didn't show up in bloodwork.

I did ask about the ulcers on the phone - "So the ulcers healed?" They told me yes and didn't offer any explanation. Weird. This is a highly-regarded doctor, so I don't think this is anything but the usual runaround hard-to-diagnose patients get from the medical profession.

Thanks for your reply!

 

[my little penguin]

Definitely get a second opinion at a different hospital

If Crohns was found up higher and in the small intestine
Then you would need MRE /pill cam and upper endoscopy

You need to know one way or the other
Unless they look there is no way to know


FWIW Ds was dx woth crohns at age 7
Second opinion another hospital still Crohns
Put on high dose biologics due to extra intestinal manifestations
Clean scopes for years -pristine - GI never saw intestines so healthy
Changed dx to working dx of Crohns
Assumed whatever he had mimicked Crohns
Fast forward
Changed to Stelara
Scopes right at 6 months after Stelara started
Found evidence of Crohns again
So dx changed back to official Crohns
Bumped up Stelara frequency-assume all is well

 

[stevep]

Definitely get a second opinion at a different hospital

If Crohns was found up higher and in the small intestine
Then you would need MRE /pill cam and upper endoscopy

You need to know one way or the other
Unless they look there is no way to know


FWIW Ds was dx woth crohns at age 7
Second opinion another hospital still Crohns
Put on high dose biologics due to extra intestinal manifestations
Clean scopes for years -pristine - GI never saw intestines so healthy
Changed dx to working dx of Crohns
Assumed whatever he had mimicked Crohns
Fast forward
Changed to Stelara
Scopes right at 6 months after Stelara started
Found evidence of Crohns again
So dx changed back to official Crohns
Bumped up Stelara frequency-assume all is well

I actually remembered my upper endoscopy wrong - I dug it out a little while ago and re-read it. Heavy gastritis and other inflammation was found in my upper G.I. system, but the ulcers were all found in the ileum. It's been a few years since I've read the results, so I somehow mixed up the location of the ulcers.

Still, my current colonoscopy's good results notwithstanding, I'd think it would be a huge red flag that my intestines developed ulcers and heavy inflammation in the first place. Not only that, but the iritis on top of 7 years of diarrhea is a textbook autoimmune inflammatory bowel disease.

They're acting like I'm blowing a non-issue out of proportion. They called me back today and told me there's no follow-up appointment and no additional tests because nothing was found. Meanwhile, my discharge papers' only instruction is to "take psyllium daily" which I've already been doing for half a decade.

This is business as usual with doctors, from my experience. That's a big reason why I held off on treatment for so long. This is the last time I try to get help for my issues. I guess the next time I'll get a g.i. scope is whenever I end up in the hospital for intestinal abscesses or whatever. Being proven right will be little comfort at that point though. Boy, do I HATE doctors.

 

[Layla]

I feel your pain! But keep at it, you will find a GI that you can work with. I would change from this one though.

I have been diagnosed with UC a long time ago and then had a clear colonscopy with a different doctor while having symptoms so got the IBS label (and no meds). I wasn't feeling terrible so was OK with that.

Many years later I ended up in hospital with a total blockage and was then re-diagnosed with CD, needing an urgent bowel resection and on meds since. So yes a diagnosis from UC or CD to IBS happens and isn't necessarily correct. And black stool should be an important factor!