11 year-old and IBD??

[2rubies]

I've been trying to figure this out and I was hoping you could help me!  My oldest is almost 11, and I swear he has never had a formed stool (sorry).  I've brought this up at countless visits with several different pediatricians, and have just been told "well that's just normal for him then".  I try to convince myself that must be the case, but I have lots of different things in mind.

I have ulcerative colitis- it was diagnosed when I was 18.  I've been in remission for a nice long time now, so I'm doing very well.  Two of my maternal uncles also have a diagnosis of colitis.  And one uncle and a cousin of mine have Crohn's disease.  I know IBD runs in families, and I have the family to prove that!

My son gets lots of unexplained stomach aches.  At one point, he was being treated with Zantac for reflux, but that didn't seem to help.  He is a strong, healthy looking boy, and I think that's the reason I can't get the pediatrician to take my concerns seriously.  Last year, she told me "all kinds of invasive tests" would need to be ordered to rule out IBD, and I "wouldn't want to do that".  I know she's talking about scopes of various kinds, and I've had them myself.  It's no fun, and I wouldn't put him through that if I didn't think there were a problem. 

Would you push for testing?  Is it that important to get a diagnosis?  In the past, I've followed the specific carbohydrate diet to get my illness under control.  Do you think he could follow that with me and start feeling better?  At that point, would I even need to know what his exact problem is?  And am I just worrying about nothing?? 

Thank you!  I appreciate your feedback!

[Llyra]

If you really suspected IBD, then yeah, I'd be pushing for diagnosis. UC and Crohns can get serious very quickly, and the complications can be dangerous or even fatal. However, if the only symptom is some pain, and loose stools, I wouldn't be thinking IBD right away, I don't think, despite the family history. I have moderate UC, and when it's active it's a lot more dramatic than that-- there's bleeding, weight loss, intense pain, and brisk, frequent, foul-smelling diarrhea. (Which I realize is WAY TMI, but when you live with this stuff for years and years, it is your reality, so it gets easier to talk about it...)

Have you talked to anybody about irritable bowel syndrome? People often confuse IBD and IBS, as I'm sure you know, but while some of the symptoms are similar, the two are very different. And loose stools and pain, in the absence of weight loss, bleeding, or sleep loss, seems to me (as a non-expert) to fit IBS a lot better.

I wouldn't hesitate to push for a scope, if you really feel like the problem is serious, but it's not without its risks. A lot of docs are hesitant to scope children, because of the risks of the procedure itself. If you do decide to do it, it may be best to search out a pediatric GI specialist-- somebody like that will have experience doing the procedure on children, and will be able to discuss the risks with you.

I think it wouldn't hurt to ask for the referral to the pediatric GI, just to get somebody else's opinion. Going for the initial visit doesn't mean committing to any tests.

[kjbrown92]

Personally I'd explore food intolerances first, since it's non-invasive. And maybe a stool test to rule out missine enzymes or perhaps parasites, or an imbalance of gut flora. But that's just me. Given your family history, your choice may be different. But all his symptoms could be explained by food intolerances (even allergies) as well.

[motherhendoula]

My DD was diagnosed with Crohn's last year - after missing nearly a month of school and loosing about 30 lbs.   In retrospect - i think an early warning sign we had when she was about 10 - 11 was what we thought was lactose intolerance.    By the time she had the colonoscopy she was in so much pain she just wanted to know what was causing it all and never even flinched at the thought of the procedure! 

If your UC has been under control with diet - i would put all your kids on it immediately - IF their symptoms get more intense- then a diagnosis (thru testing)  may be necessary. 

[ameliabedelia]

I'd do dietary interventions first.  I start with cutting out gluten (and possibly dairy) and then see if that helps.  If it does, then trying adding those back in one at a a time to see which foods are causing the problem.  But then, I tend to see dietary interventions as less invasive and much safer then tests and scopes, etc.  You could also try the SCD.  That would be my first choice, by far. 

However, I have the opinion that if a person removes a food item and symptoms improve/they feel better without that food then there is really no need for tests or diagnosis to know that they should stay away from said food.

[2rubies]

Thanks so much everyone!  You're right, dietary changes would be a good place to start.  It would take some serious convincing for all of them to go SCD, but at this point, I think my oldest is so tired of feeling yucky that he wouldn't balk at all.

motherhendoula, that is exactly what I worry about.  I know that Crohn's,  particularly, can start slowly and get progressively worse to the point of near-constant pain.  Maybe  a trip to a pedi GI doctor would be a good place to start (after some dietary changes).  It doesn't necessarily mean a scope is in the near future, and while he's still home with me (we homeschool), I can control what he eats pretty well.  If he feels that much better I would probably fogo the test altogether and hope that he sticks with this different way of eating when he gets older.