Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Disease location and growth


06-11-2013, 12:20 PM   #1
killcolitis
Senior Member
 
Join Date: Feb 2012
Disease location and growth

Just curious if you have a child with solely colonic disease, is their growth impacted? I know growth is an issue with pediatric CD (we have a UC dx, but don't know for how long) - I assumed this was for those kids who have had small intestinal disease. Is this correct?

Last edited by killcolitis; 06-11-2013 at 02:37 PM.
06-11-2013, 01:28 PM   #2
jmckinley
Senior Member
 
jmckinley's Avatar
 
Join Date: May 2012
Location: Alabama
Ryan has growth issues. His disease is mainly terminal ileum and colon right now. As the GI explained it, the TI is where he should be absorbing most of his calories/vitamins. But because of inflammation, he isn't. He can eat all day long and lose weight...it is really stinking right now!
06-11-2013, 01:34 PM   #3
killcolitis
Senior Member
 
Join Date: Feb 2012
Ugh, that does stink! Does or would EN work in his case? My daughter can't tolerate any of the shakes. She gets a stomach ache and has to use the bathroom whenever she has one (we've tried five different types I think).
06-11-2013, 01:46 PM   #4
dodie74
Senior Member
 
dodie74's Avatar
 
Join Date: Sep 2011
Location: west coast scotland., United Kingdom

My Support Groups:
My son has a part located in the ileum, I didn't know that it could cause growth problems if located there. He is growing up the way but doesn't put a lot of weight on at all. x
06-11-2013, 01:49 PM   #5
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
killcolitis,

Did your daughter ever try the formulas with an NG tube? Probably won't be an easy thing to convince her to try but, with the NG tube, taste isn't an issue and, when it's not an issue, you can use it at room temperature (most say the drinkable shakes taste better cold). Being at room temperature may be easier on her tummy and, using a pump and tube, you can control the rate/speed of the pump. My son did it overnight, so again, when you have 8 hours to run it, you can run it at a fairly slow speed.

FYI, the formula prescribed (by HSC) to Stephen was Tolerex (but not drinkable due to the taste) but perhaps (just a guess???) it is very easily absorbed.
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
06-11-2013, 02:09 PM   #6
killcolitis
Senior Member
 
Join Date: Feb 2012
Dodie, that's great that he's growing in height. My understanding is that the body will use what it needs to maintain weight first and then height is secondary, so it may just be that he's a skinny kid. I have one too (non ibder). Grows like a weed but is hard to look at because she's all bone. But knock on wood, she's totally healthy. Just the way she is. I'd take it as a very good sign that he's growing.

Tess,
HSC and the GI will NOT agree to EEn for her under any circumstances because she has UC and if it does change to CD (she's had scopes recently which show classic UC but then a genetic test that I had done privately showed she has a variation which is strongly correlated to CD and not UC) I don't know if that will change. It would still be colonic disease and as per GI EEN increases stooling in colonic disease. This has been our experience.
My daughter doesn't mind the taste (even of splash) and we do give it at room temp, it's just the sugar or the concentration of them that she can't handle. She's tried modulen (I'm guessing that's what Stephen used?), spash E08, vega, absorb plus and a few others a long time ago. Same result with each one?
06-11-2013, 02:13 PM   #7
Jmrogers4
Moderator
 
Jmrogers4's Avatar
Jack's is at TI, duodenum, colon and suspected small intestine (but we have never done pill cam). The regular shakes caused Jack stomach pains it was when we moved to semi-elemental where the proteins are further broken down that he was able to tolerate them.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
06-11-2013, 02:17 PM   #8
Johnnysmom
Forum Monitor
 
Johnnysmom's Avatar
 
Join Date: Oct 2011
Location: Cincinnati, Ohio

My Support Groups:
I think a lot of it has to do with appetite. If they aren't eating because of pain or constant D that will effect growth. A BMI that is in the 20 percentile or below will cause growth to stop. But I do not think there are absorption issues like there are when small bowel is involved.
__________________
Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
Prayer
06-11-2013, 02:48 PM   #9
killcolitis
Senior Member
 
Join Date: Feb 2012
Jacqui, glad you found something he could tolerate in the end. I believe a couple of the ones we've tried are elemental (modulen, splash and AP)? But I'm not 100% sure of that.

Johnny'smom, I didn't know that about BMI. My daughter's appetite is fine and when I asked about UC and growth her GI said that it doesn't matter if they're not eating, or if they're pooping 20 times a day, UCers should still grow. Growth delay is a CD issue. I couldn't understand how really but? My non IBDer who is incredibly tall has a BMI well below 20 though. I guess it's more of an issue for our IBDers or is that a general fact?
06-11-2013, 02:49 PM   #10
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
O had a clean TI and mostly colonic involvement with her crohns and she didn't grow for two years and was severely malnourished at dx. Since getting the disease under control (which included an 8 week course of EEN) she has grown 4 incjes and gained 20 pounds. So I would say disease in the colon definitely affects growth and puberty!
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
06-11-2013, 02:51 PM   #11
crohnsinct
Senior Member
 
Join Date: Mar 2012
Location: California

My Support Groups:
Hmmm O has never gone above 15 on BMI and is still growing. Still medically classified as anorexic but GI not terribly concerned.
06-11-2013, 03:19 PM   #12
Tesscorm
Moderator
 
Tesscorm's Avatar
 
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Stephen did not use Modulen, his formula is Tolerex (made by Nestle).

The shakes (not sure about the fruit drinks) are fairly heavy, maybe too much for her??? Even pre-crohns dx, I used to give my kids Carnation Breakfast shakes with their breakfast but I would split one pack between the two of them and dilute it with milk (otherwise, it was too thick and filling for them). Not suggesting that this will help with her UC but just as a supplement to help add some calories/vitamins... Maybe if you try diluting some of the shakes she's tried... IDK, but might be easier on her tummy??

Re GIs comment of increased stooling. When Stephen was on EEN, he did have diarrhea the entire six weeks. Dietitien had warned us that this might happen. Doesn't seem to happen to many other kids here but did to Stephen. There wasn't any urgency or pain, just seemed to follow as the dietitien said it might - 'liquid in, liquid out'. Stephen's crohns is mainly in his ileum, perhaps this is more of a concern with UC or crohns colitis.
06-11-2013, 03:55 PM   #13
upsetmom
Senior Member
 
upsetmom's Avatar
 
Join Date: May 2012
Location: New South Wales, Australia

My Support Groups:
My daughters crohn's disease is in her whole colon. Her height has never been affected it was mainly her weight and puberty.
__________________
Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014



06-11-2013, 05:23 PM   #14
killcolitis
Senior Member
 
Join Date: Feb 2012
Maybe modulen is what they recommend when they're going to drink it? They gave us some at SK to help with weight gain at one point.

Crohnsinct, that's interesting. I was curious if someone with just colonic disease would have their growth affected. Great that she's growing so well now!

Upsetmom, Interesting too. I wonder why colonic disease affects growth in some kids but not in others? Especially a pancolitis?
06-11-2013, 06:01 PM   #15
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
DS growth stalled - not weight gain two years

Location Duodenum, stomach, TI, caecum, sigmoid,rectum
Elemental shakes or semi elemental shakes work
they only need the first few inches of healthy small intestine in order to be absorbed.

Has she had a pill cam?

I know biopsy stated UC but something things remain hidden unless you actually do a pill cam MOre than one member's child here was dx solely by pill cam all other tests -read normal.

DS drinks peptamen jr. It is semi-elemental.
He would lose weight on boost kids.
__________________
DS - -Crohn's -Stelara -mtx-IVIG
06-11-2013, 06:30 PM   #16
killcolitis
Senior Member
 
Join Date: Feb 2012
She's had a pill cam. And three sets of scopes over four years. All UC. I should say her GI watches growth closely and her growth when not on pred has been great other than during one year when we were in Italy and rxed a local stronger steroid (like Uceris). When we got back her GI scoped her immediately and found nothing. I'm wondering what her growth should be now that I'm guessing her dx will change on the basis of the new genetic info we've received. I'm just confused by the whole situation I think.
06-11-2013, 07:14 PM   #17
Johnnysmom
Forum Monitor
 
Johnnysmom's Avatar
 
Join Date: Oct 2011
Location: Cincinnati, Ohio

My Support Groups:
killcolitis,

Our endocrinologist said she sees growth stop all the time with kids who take ritalin for ADHD. She said it decreases their appetite, they lose weight and then stop growing. She said it will stop when it gets around the 20 percentile. She told us that mild to moderate crohn's will not stop growth, that it is the lack of weight. My son was at the 22nd percentile when his growth stopped. He is now at the 60th and has started to grow normally again.

I understand what your GI says about UC and thinking crohn's and inability to absorb in the small intestine would be the cause. But, I found neither of the GI's we worked with understood growth as well at the two endocrinologists we have seen.
06-11-2013, 08:31 PM   #18
killcolitis
Senior Member
 
Join Date: Feb 2012
Thanks for the info. I don't even know what my daughter's BMI is. I should look into it.
I do think the GI pretty on top of the growth issue as she monitors it closely. I suppose she'd send us off to an endo if necessary. Hopefully it won't be. Interesting that they told you that mild/mod disease doesn't impede growth. I've heard of kids with no other symptoms but growth impairment who on further examination showed mild/mod CD? Everyone's case seems so unique and we all seem to be told slightly different things.
06-11-2013, 10:18 PM   #19
jmckinley
Senior Member
 
jmckinley's Avatar
 
Join Date: May 2012
Location: Alabama
My son has a part located in the ileum, I didn't know that it could cause growth problems if located there. He is growing up the way but doesn't put a lot of weight on at all. x

Ryan grows "up" also. He is 5'6 1/2" and only 105 lbs

He can drink some shakes, but like others here, he has trouble with digesting too many of them and gets stomach ache.
06-12-2013, 06:37 AM   #20
DustyKat
Super Moderator
 
DustyKat's Avatar
 
Join Date: May 2010
Location: New South Wales, Australia
Just my own thoughts on this...

Chronic inflammation in any part of the intestine will draw the body's attention away from growth/puberty both weight and height wise and the inflammation doesn't have to be severe. Of course this will vary widely just as everything else with disease seems to!

Ileal disease has the added burden of malabsorption of many of the nutrients.

Dusty. xxx
__________________
Mum of 2 kids with Crohn's.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Disease location and growth
Thread Tools


All times are GMT -5. The time now is 02:45 PM.
Copyright 2006-2017 Crohnsforum.com