Question for Remicade & Humira remission kid's parents

[Brian'sMom]

I don't mean to be gross, (Discussing the appearance of poop). But... To all the parents with kids in remission...are your kids poo's normal like a kid without crohn's now? My son has no cramps or blood and is feeling good...but his poo is mostly skinny and on the soft side. Sometimes in short formed pieces. His blood work numbers indicate we are in remission...but food can bother him too. Is this all normal? Do all the kids doing great and gaining weight on Remicade and Humira have normal bathroom visits too?
Thanks in advance for taking time to respond.

 

[Brian'sMom]

Maybe I worded the title wrong...therefore no one responding. When Brian was on Prednisone the first time last summer...it was like he was cured. Everything was normal. Growth, cramps, and poo's looked like anybody else's that doesn't have crohn's. Now he's on Humira...no cramps...but the logs are skinny and very much on the soft side. Is this remission since his #'s look normal...or is it the beginning of the Humira not working? There are plenty of kids on here on these tnf drugs singing praise...I was just wondering if this is our 'new normal' and should not expect it to look any different. Some comparison would ease my mind.

 

[Lisa]

Hi Kathy - while I'm not a kid, I can tell you that I have all sorts of varying umm...consistancy to my poo.....one day it will be 'normal', another soft, occasional D....but YES - I sure have put weight on (some I want to take OFF NOW!).....

Does he have a history of any narrowing or stricture? Or even loss of sphinicter muscle tone? I have the latter - which may account for skinny....letting things exit before all the fliud is absorbed.....

 

[DustyKat]

Hey Kathy,

I haven't answered for the obvious reason, well two actually, kids not on TNF's and having had resections their bowel habits and stools have changed.

In our situation remission for me has mean't normal bloods and no symptoms whatsoever of CD. I agree with paso, could the time between pred and the commencement of Humira resulted in some change in the anatomy of the bowel? This may also explain the issue with food as well.

Dusty. xxx

 

[Brian'sMom]

Hi Kathy -Does he have a history of any narrowing or stricture? Or even loss of sphinicter muscle tone? I have the latter - which may account for skinny....letting things exit before all the fliud is absorbed.....

He had small bowel follow thru last July and no stricture Maybe since he had inflammation for so long last year, its just going to take time. His SED rate was 73 just 6 months ago.

 

[Dexky]

Hey Kathy, sorry! This one slipped by me! I'd have to say EJ is in Paso's camp with a lot of variation. To be honest, I rarely look anymore. I am content for now to let sleeping dogs lie!

 

[Ktomakin]

Hello,

I don't think you have any reason to worry. My 4 year old son on Remicade since Oct 2010 has almost the same kind of poop you described. He has an occasional tummy pain, but is currently in remission. He did have a flare at the beginning of May and his poop did change to diarrhea, but quickly went back to "normal" a couple days after his Remicade treatment. Hope this helped answer your question.

Kacie

 

[Brian'sMom]

Thanks all, It has helped. I slip every now and then into the worrying. I guess I just want crohn's to be gone...and I know it will always be there. My son is so young and I just want him to start thriving since he's doing Humira...its such a big thing and I want him to reap the rewards for so willingly enduring it and all its side effects and risks.

 

[Crohn's Mom]

Thanks all, It has helped. I slip every now and then into the worrying. I guess I just want crohn's to be gone...and I know it will always be there. My son is so young and I just want him to start thriving since he's doing Humira...its such a big thing and I want him to reap the rewards for so willingly enduring it and all its side effects and risks.

Unfortunately, I think all of us are right there with you!

Awe, big hugs mom!

 

[golanv]

Poop watch

My son is grown and is currently in remission. He was in the first trial of remicade for children. The medicine saved his life. His bm's have no sense of normal. Sometimes it depends on what he eats, the heat he has been in, sometimes he doesn't realize how close to dehydration he gets. I would mention it to the dr but as long as everything else is "normal", it's probably ok. Even though he is grown, we still discuss the poop!
You never stop worrying.

 

[Brian'sMom]

golanv,
I agree with the 'what they eat' and the dehydration. My son just went thru a busy week of baseball practice and then a tournament. We tried to eat good, but it was close to impossible! Ended up eating donuts...some fast food...some restaurant...and soda. I was trying to limit him, but all the other 14 boys were chowing the stuff too. I cut off his soda and fries! Last night he had what he calls 'left side pain'. He knew himself that it was most likely diet related and not getting enough water. Luckily, baseball is over for the summer Poop becomes a frequent topic and sometimes I forget that outside family members don't converse about that subject!! Ha Ha

 

[AZMOM]

Us too (on the poop conversations). My children have, on occasion, called me the poop police! ;-) ;-)

J.

 

[Brian'sMom]

By the way. The left side pain didn't last long. He was back to normal the next day (thank goodness)! Now no more junk for a long while!!

Julie, "poop police" that's funny!

 

[Dexky]

The poop police, they live inside of my "head"....hahaha, where's Cheap Trick nowadays??

 

[Max's Mom]

Hi,Kathy. Max's poop looks normal to me but he goes more often than everybody else. Also,if he needs to go,he can't wait like the rest of us. We tend to be homebodies and I always have kids over here instead of them going everywhere. I just feel better that way.Yesterday he a little tummyache and of course I get all worried and get this nauseus feeling.I hate Crohn's and I want it gone!