Tests Come Back Normal, but Still Diagnosed with Crohn's. Is this normal?

[H0PEFUL]

Hey All,

New to the group here. My wife is the one who has Crohn's. I have often had many questions, but didn't know where to turn. I am excited I found this group and am eager to hear from others.

One thing I have always questioned is if Crohn's Disease is a misdiagnosis for her. She was on Humira for a year, then it lost its effectiveness. Then she went to Skyrizi, which was also effective for about a year. Once it became ineffective, the doctor increased her Skyrizi regimen, which you guessed it, was effective for about a year until it recently became ineffective. Now we sit her and wait until we can see her doctor and formulate a new game plan in about a month.

While we sit and wait, my wife is experiencing all the the terrible effects of Crohn's: Extreme fatigue, diarrhea, vomiting, abdominal pain, and psoriasis.

Even though she shows all the symptoms of Crohn's, her blood tests always come back normal never indicating inflammation. She has also undergone scope after scope after scope which have failed to find signs of inflammation. The only time inflammation was found was via a video capsule 5 years ago from her GI who diagnosed her with either small bowel or jejunal Crohn's. Her GI retired shortly after and referred her to her current doctor. Her current doctor has never seen signs of inflammation other than presumably reviewing the notes and video from her previous doctor.

Her doctors are great and we have the upmost confidence in them, but I don't think I'm alone when I say I sometimes wonder about misdiagnosis. There is no doubt she is experiencing symptoms similar to those of Crohn's but without much or any proof of inflammation, I wonder if there is something else that can cause these symptoms that we can explore.

I guess I'm just curious if anyone has any relatable experience or knowledge that they can share.

Thank you.

 

[my little penguin]

So if your wife’s inflammation showed on a pill cam (capsule endoscopy ) then the inflammation is in the small intestine.
A colonoscopy only really looks at a tiny tiny bit of the small intestine and the rest is the large intestine .
Colitis (Crohn’s colitis or ulcerative colitis ) stays in the large intestine .
Typical Crohn’s is in the small intestine and inflammation may be seen in the terminal illeum during scopes if the terminal illeum is affected .
Fecal caloprotectin is a stool test which picks up inflammation-primarily in the large intestine (higher numbers ) in the small intestine the increase can be smaller .
MRE is an mri with entography that can pick up thickening of the small intestine and is used with a pill cam (video endoscopy )
Blood work — some show inflammation in their bloodwork
Others do not .
My adult child has had crohns dx since age 7. Rarely is his bloodwork abnormal .
MRE picks up the thickening on the images for him .
In 14 years he has been on 3 biologics.
He increased humira every year for 5 years .
Stelara increased after 8 months to every 4 weeks at 90 mg.
He has been on that dose for 7 years .
He also takes methotrexate.
Finding the right med combo is hard .
No two cases of crohns are alike .
My kiddo has constipation instead of diarrhea most of the time when flaring .

Hope they find the increase in skyrizi helps .
Getting a second opinion can help as well as imaging .

 

[Pangolin]

I believe that inflammation only in the upper part of the small intestine is uncommon in Crohn's. Typically, there's inflammation at the end of the small intestine (the ileum).

It's possible that inflammation in the upper parts of the small intestine could be due to some kind of food intolerance, eg gluten. It also might just be Crohn's.

Maybe consider trying some elimination diets. If you can stand it, an all-formula diet (EEN) is known to help with Crohn's as well.

 

[Papantoine]

I can also relate. I have been sick with crohn’s symptoms since I was 3. Misdiagnosed until I was in my mid twenties and started bleeding. My colon was pretty straightforward, lots of inflammation leading to toxic megacolon and eventual full removal of the colon. Throughout all these ordeals, 14 surgeries my bloodwork almost always comes out better than normal. There have been a few times that my white count was up a bit, but generally my bloodwork doesn’t read like I’m sick at all.

Also, Crohn’s is a sneaky disease, I have had flares in my lungs, my eyes, my privates as well, and now it is primarily in my bones (permanent damage in my hands, feet and most of my bag, growing arthritis in my knees and hips) It’s in my blood and I run an increase risk of developing blood clots.

Flares carry with crohn’s but for me, it has only affected my small bowel a little bit. But then a last month it inflamed my entire small bowel, triggered by a section of bowel getting trapped in scar tissue and I am now recovering with difficulty from surgery #15.
(My blood work is still normal)

So yeah, I’ll beat it again. And so will your wife, your son, but Crohn’s is a sneaky crappy disease. Very unpredictable.

as some have said, if you fear misdiagnosis, getting a second or third opinion is a good idea. But normal bloodworks happen a lot.

 

[Papantoine]

*my bag= my back

 

[Papantoine]

(sorry, I don’t know how to edit these posts)
*flares vary with crohn’s