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Three Year Old w/ Crohn's? No Pain?

Hi -

I am wondering if anyone has a preschool aged child that has been diagnosed with Crohn's that has not experienced any pain? From what I understand, "pain" is a hallmark feature of Crohn's.

My son was diagnosed with Crohn's after our pediatric GI did an endoscopy and colonoscopy. Even though the pathologist report came out negative and he was a non-responder to Apriso and Prednisone, she still insists he has Crohn's based on what she saw visually (blood, lesions, inflammation). He's had explosive diarrhea ~3x/day since Halloween (3 months now). The diarrhea is usually clear like water and full of floaty mucous. Sometimes there is a pebble. And sometimes there's even a mushy pickle size yellowish poop. His belly gets so distended and hard to the touch because of gas and it is very loud and growly (he calls it his monster in side of him).

Blood word was negative for Celiac (as well as pathology report). The only positive on the blood work was his Sed Rate (a 15). He's been on Flagyl, and Apriso, and Prednisone. We are tapering off of the prednisone now because there has been no effect (other than turning him into a crazy animal). Other than the inconvenience of diarrhea and an occasional rash on his butt, he is perfectly normal (no pain, no fatigue, no rectal bleeding).

The only other bit of info that I think is worth mentioning, and that our doc has blown off, is that this started exactly two days after returning from Hawaii. While in Hawaii, my son swam in the kiddie pool a lot (the kiddie pool that was full of diaper wearing toddlers). My son drank A LOT of pool water. Not only while he was trying to blow bubbles (he was inhaling instead), but he was also drinking out of a bucket before we realized he was drinking "for real". My gut says that he drank a bug OR that he drank so much chlorine that he "neutralized" his gut. Is that even possible? I have recently reached out to our hotel to ask if there were any "pool poop shut downs" and I've also asked for the exact recipe of chemicals that they use in their pool.

Any input or thoughts would be much appreciated!:ysmile:

melomelisa
 
Welcome to the forum, check out the parents of ibd forum if you get a chance. My son was a bit older when he was diagnosed at 10 but we have several parents of younger ones on here. Tagging farmwife. (Her daughter just turned 4 the other day and was just diagnosed). Suzysu, mylittlesunshine, izzi'smom. I'm sure I'm missing several others with younger ones.
As you will see from other threads there are no hard and fast rules that everyone has. Some have had no other symptoms but a lack of growth, some bloody diarrehea, some constipation.
Hope you can find answers and support here.
 
I think in your position I'd question the diagnosis as well, but if he had severe enough inflammation in his gut to make her think Crohn's, I'd not rule out IBD of any kind just yet.

I think you should get his records sent to a second GI for a second opinion.

But to answer your questions, yes, it's possible (though unusual) to have Crohn's without pain. I have had some pretty severe diarrhea and bleeding that caused me no discernable pain whatsoever, but I still needed prednisone to get it under control. It can happen. Some people can be totally asymptomatic (no bleeding, diarrhea, pain, nothing at all) and still develop a fistula "out of nowhere". It's been reported on this forum. It happens.

SO, definitely be skeptical and make them prove it, BUT, don't rule it out and don't withhold treatment if your GI feels strongly about treating. DO get a second opinion.

Best of luck to you, definitely follow up with us and let us know how things are going. There's a LOT of help to be had here.
 
Crohn's (or any IBD) and the resulting diarrhea could be making him pretty dehydrated, which might prompt him to drink pool water or drink from a bucket if he's feeling insatiably thirsty. You might have a chicken/egg situation there, or you may be onto something. Definitely pursue both.
 
Hi and welcome to the forum
My daughter Lucy is 3 and has been
Suffering from constant diarrhea
Bleeding, belly distention.
We are awaiting biopsys for
Diagnoise also my daughter is still in
Nappies.
I really happy I found this place as
You find a lot of support and friends
Good luck and hope u find answers.
Please look at the patent forum u
Will find a lot of help and advise x
 

Catherine

Moderator
I know my daughter is a lot older but she mostly has active crohn's with low to no pain.

Before dx she would have gastio attacks which would last fo 24 hours then be find for a few months.
 
Hi and welcome,:ysmile:

My Grace just turned four. This disease has no rules. My girl has negative blood ultra-sounds, poo study but she had scopes done and that told a very different story.
I do think the water thing is a valid concern. Get the second opinion. I know my little penguin got quite a few before she was convinced it was IBD. Nothing wrong with that.

Hears some questions. Does he get joint or eye pains anywhere, how about skin problems. Some time they come along with IBD.

Hang in there and welcome aboard.
 
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