I Don't Get It - No Active Crohns

[Dxrolx]

I am a 25 year old female, smoker. I was diagnosed with crohn's at 18; I had stool samples done to rule out infections, then did the barium test & a CT that showed inflamed ilieum. I had no other tests done. Fast forward to 1-2 years ago, and symptoms got worse. Lots of discomfort (mainly stomach), diarrhea, loss of appetite, leading up to a 25 lb weight loss (I'm now 110). I scheduled an appt with a GI finally, and based on my symptoms, he said it definitely sounded like crohns. He then felt my stomach and wanted to do an upper endoscopy. I have bad bloating, stiffness, and pain whenever I eat a normal meal. So I just done with the colonscopy & endo, and they were showed no active Crohn's. He took some biopsies (to rule out Celiac, he said). And he wants to do the pill endo, and some blood tests.

What I don't get is why am I experiencing all these symptoms if there is no problem? I could see if my body is making up the pain in some way, but why the bloating and weight loss? I am so angry I have to do the prep all over again, which will probably show nothing anyway.

 

[DJW]

Hi and welcome. Sorry you're having a rough go of it.

C9lonoscopy and endoscopy are limited in what they see. You can have active disease in the small intestine. Its good that the doctor has ordered a pill can.

Sending you my support.

 

[Dxrolx]

Well the paperwork said under diagnostic impressions: normal colonscopy to ileum

Doesn't that mean the ileum looked normal?

 

[DJW]

Yes. The colonoscopy can go to the ileum. Everything is normal there. Endoscopy can go just past the stomach. Pill can will see everything in between. Crohns in the terminal illium is very common.

 

[Dxrolx]

I'm assuming the terminal ileum can't be seen with the colonscopy or endo?

 

[DJW]

The terminal ileum can be seen by colonoscopy. It connects the small bowel to the colon.

 

[Dxrolx]

That's why I'm confused. I had both the colonscopy and upper endoscopy, and both showed no active Crohns so that does mean I do not in fact have crohns?

 

[DJW]

Sorry for throwing in a new term without explanation.

 

[DJW]

No. It only means the areas the can be seen through a scope are clear. The pill cam will see the rest.

 

[Dxrolx]

Do you know what parts the pill cam picks up that the exams don't?

 

[DJW]

It will pick everything from the stomach down. It can't take biopsies. That's the reason the scopes are the first line test in diagnosing crohns. The reach the most common areas of disease and the doctor can take biopsies.

The pill cam can see theentire small bowel .

 

[InkyStinky]

Hi there! I'm such a visual person, so thought I'd link a picture of the GI tract for you:
http://www.ccfa.org/assets/pdfs/gi-trac.pdf

So...
Colonoscopy can often get through entire colon and often into the terminal ileum.
Upper endoscopy can often get to duodenum (or a little beyond?).

Neither one can see the huge majority of the small intestines. The pill cam takes pictures as it passes through the intestines. Someone correct me if I'm wrong, but I've heard that as it only takes pics of what it's pointed at, it can still miss things. But hopefully it will be able to see if there is lots of inflammation going on in your small intestine.

 

[Dxrolx]

Yeah I heard the pill cam can be too fast or something, but that one other person had ulcers caught on the pill cam that the endo and colonscopy missed. I just want to know why I feel the way I do - I know it can't all be in my head :\

 

[Ali29]

The pill cam is where the GI saw the Crohn's. I have other issues found by colonoscopy/endoscopy but the pill cam showed him so much more. It was pretty simple to complete the test, without the test all he could see/find was Bile Acid Malabsorbation and Fat Malabsorption. In my experience, it was a life saver.

Good luck!!