Can Crohn's be diagnosed after a ileectomy?

[momzilla]

Hi everyone!
I am trying to figure out a diagnosis for my son and I'm very frustrated. We've seen the pediatrician, the endocrinologist (for his failure to thrive, low weight and size, delayed puberty, etc.), and of course the gastroenterologist. He's 14 years old, weighs 75 lbs.

He's had a CT scan of the abdomen (normal), blood tests (including the IBD serology 7 panel) which came back not indicitive of Crohn's, a endoscopy, and two colonoscopy. We've done a stool sample check and all that they found was a bit of yeast overgrowth (no parasites or anything). They did the test for malabsorption and he's fine there.

His symptoms... abdominal pain, almost always a "3" on a scale of 1 - 10, which he just deals with, but often a 6 or 7 and sometimes a 9 or 10, where he's curled up crying. He's fatigued a lot, is very small for his age (and thin), occassionally has headaches, and has had diarrhea his entire life pretty much. Lately his pain has been so bad.

You'd think I'd just say "yay all the tests are negative, he's fine" BUT... when he was 4 years old he had illeocolic intussusception with Meckel's Diverticulum as a starting point. By the time they diagnosed that, it had turned gangrenous and they had to remove his terminal ileum, 18 inches of small intestine, and his appendix.

SO - my question - wouldn't it make it more difficult to diagnose IBD if he's missing the terminal ileum and 18" of intestine? Isn't that where it often shows up? Our GI says it would make no difference, and he may be right, but I want more opinions as that just sounds weird to me.

Ultimately I just want my son to be out of pain and "normal" but... it's a long process.

Thanks for any advice y'all have

 

[AndiGirl]

I imagine it can, as CD can be found anywhere on the digestive tract. It's most common in the ileum, but it's known to take up residence in many other areas, including the mouth.

 

[Montrealer]

Hello

I would suspect that it wouldnt make things easier.
I think they would make a diagnosis quicker if they saw inflamation in the illium rather than inflamation in the rectum or mouth.

Now that that i have little or no illium left, since 8 years ago, a chron's diagnostic would be highly improbable for me in this situation, be cause when i flare, i go back to normal very quickly, this doesnt give them a cchance to spot anything through a colonoscopy, which is their favorite backbone if not their only reliable 100% diagnostic tool, together with that upper section test.

For example the last time i went for a colonoscopy, there was so little inflamation that the doctor said he's not sure if its crohns anymore. And he looked serious.

Best wishes for ur son.

 

[momzilla]

I think that may be the problem with diagnosing him (with anything, not just crohn's). He'll be in so much pain, so we'll make an appointment and they'll schedule a scope, and then by the time he goes in a few days to a week later, he's ok... I wish they could catch him when he's really in a lot of pain... I also wonder if, like you, not having the terminal ileum makes the flare up go away quickly (assuming that is what he has...).

Thanks for the responses and best wishes to all of you for living with this horrible thing - the more I learn about it the more impressed I am by people dealing with it on a constant basis!!

 

[ameslouise]

I agree that having the terminal ileum would probably make it easier... .but only if that where the activity is. There can be activity anywhere, as Andi mentioned above. Also there are other signs, like cankers or joint pain or iritis that can lead to a CD dx as well.

Good luck to you and your son. - Amy