Ileitis but normal biopsies?

[NoraPederson]

Hi friends! After nearly ten months of feeling unwell, my gastroenterologist ordered for me a colonoscopy and upper endoscopy. The colonoscopy showed inflammation in my ileum, and the upper endoscopy showed stomach erosion/ what my doctor believed was gastritis. After the procedures, he informed me that Crohn's was certainly a possibility, but that if it was in fact that disease, it would be a decidedly mild case.

I received pathology results in the mail the following week which said, first, that the biopsies taken from my stomach showed reactive gastropathy. Second, however, the results stated that the biopsies taken from my ileum were normal/ showed no signs of inflammation.

Prior to my procedures, a blood test indicated that I had mildly-elevated levels of CRP in my body (as well as very low levels vitamin D). I had some of the classic symptoms of Crohn's -- abdominal pain (though never excruciating), diarrhea (but also constipation), extreme weight loss, bloating, nausea -- as well as things like nail clubbing, perpetually dry patches of skin, sore/stiff joints, an inability to eat/digest certain foods, etc. I never experienced bloody stool.

Could what I have be in fact a mild case of Crohn's disease, even though the colonoscopy biopsies came back normal? Clearly something is going on because I have erosion in my stomach. But what is the significance of the ileitis, since ileitis isn't caused by reactive gastropathy? (H pylori and celiac sprue tests were also negative.)

I will be meeting again with my gastroenterologist next week, but I have been waiting so long for definitive answers. Clearly we, here, can only speculate. But anything from you -- experiences, opinions, etc. -- are so helpful for me. I am just so ready to know what is going on and so ready to work with my doctors to treat it. Thank you all very much!!

 

[kiny]

The colonoscopy showed ileitis/patches of inflammation in my large intestine

It's already a bit confusing here. Ileitis is strictly inflammation confined to the ileum, which isn't part of the large intestine.

Most people with crohn's disease have inflammation in their ileum and some often no inlflammation in their colon at all.

Remember, Crohn's disease was first described as Crohnic Enteritis by Dalziel. This is still the "typical" textbook disease. Enteritis referring to inflammation of the small intestine, not the large intestine / colon.

Only years later came the term Crohn's Disease and diseases that seem to mimmick crohn's disease but have no ileum involvement, that both look differently, and respond differently to medication, like Crohn's colitis.

 

[NoraPederson]

It's already a bit confusing here. Ileitis is strictly inflammation confined to the ileum, which isn't part of the large intestine.

Most people with crohn's disease have inflammation in their ileum and some often no inlflammation in their colon at all.

Remember, Crohn's disease was first described as Crohnic Enteritis by Dalziel.This is still the "typical" textbook disease.

Only years later came the term Crohn's Disease and diseases that seem to mimmick crohn's disease but have no ileum involvement, that both look differently, and respond differently to medication.

Thank you for this response -- that is good to keep in mind. For some reason, I'd thought that the ileum was a part of the large intestine. My mistake. I reviewed my results from the actual colonoscopy (not the biopsies) which stated that there were patches of inflammation in the ileum. My large intestine looked normal. I apologize for that -- again, my mistake.

 

[kiny]

Welcome, if a doctor suspects crohn's disease, the first thing they will ask for is to lay on your back a minute. And both their hands will typically reach for the right side of your tummy, right next to the hip bone....that is where the ileum is reached. So they can quickly determine where the pain is coming from and which part an MRI or Colonscopy should look at.

The ileum is high volume in enterobacteria (E. Coli / Salmonella etc). It's also the only place in your body with peyer's patches, and the ileum is lined up from top to bottom with macrophages, your innate immune response. All those factors help explain the common ileum involvement.

 

[Scipio]

"Could what I have be in fact a mild case of Crohn's disease, even though the colonoscopy biopsies came back normal?"

It is certainly possible in Crohn's to have visible lesions via colonoscopy but normal histology from the biopsies. This is due to the discontinuous "patchy" pattern of Crohn's inflammation. It's possible for the doc to miss the inflamed part and instead snip out normal intestinal tissue when collecting a Crohn's biopsy.

No so in UC, because UC inflammation is continuous. Anywhere in the inflamed area will almost always come back with a positive biopsy report in UC.

So overall, I'd say your symptoms are still all consistent with Crohn's, although the stomach involvement is somewhat unusual. It will be interesting to see what the doc says.

 

[DEmberton]

The ileum is the last part of the small bowel and whilst a colonoscopy can peek into the end they can't look too far. You have about 7 metres of small bowel so plenty for Crohn's to hide in.

 

[eleanor_rigby]

I had a very similar case. A colonoscopy showed healthy colon but inflammation/ulcers in my terminal ileum. An endoscopy showed a stomach ulcer and inflammation in my duodenum. A celiac test was mildly positive and my biopsies came back with no evidence of Crohn's Disease. My GI took my case to review at least 4 times and told me at my follow-up appointment that I was the most famous person in the hospital with consultants arguing over what my diagnosis should be. My GI eventually diagnosed me with Crohn's Disease and was not convinced of the celiac result but told me to go gluten-free anyway. My point is Crohn's Disease can be very difficult to diagnose.