My 10 Year old Diagnosed with Crohn's and Colitis

[Cmp213]

Good Morning all,

My 10 year old was just recently diagnosed with mild/moderate Crohn's.

My son has never complained of any stomach aches, discomfort or diarrhea. His only symptom has been bloody stools. My son does have a problem with weight and is considered borderline obese.

This all started last year in February and his pediatrician brushed it off as an anal fissure. I wasn't ok with that diagnosis given the fact that he had red blood dripping with his bowel movements. I took him to see a pediatric Gastro who immediately ordered a colonoscopy/Endoscopy as well as a bunch of stool samples and bloodwork. His procedures showed Proctitis and stool samples came up positive for C-diff. We to this day have no idea how he picked up c-diff. No one else in our household had it or symptom's of it. The doctor treated the c-diff and Proctitis with suppository's (What a nightmare) The doctor assumed the Proctitis was due to untreated c-diff. We were in the clear until this May when bloody stools again. Repeat Colonoscopy/endo showed ileitis, proctitis and colitis. Again no symptoms at all other than bloody stools. We are scheduled next week for the MRE to find out the severity of it. We have to make some massive changes to his diet as well as treatments with medication. My sons father and i haven't been together for about 6 years so its difficult to manage with 2 households. I am more of the strict parent no sugar or junk in my house and Dads has a mini grocery store in his .My son isn't really a picky eater but definitely prefers junk over anything. He understands his diagnosis as well as what he needs to do.

I'm looking for any advice and opinions regarding his treatment. Right now he is getting a suppository daily (until the bleeding is gone) He is also to start taking Lialda 1.2 Grams 3 tablet, delayed release (DR/EC) by oral route daily for 8 weeks Than 2 tab PO QD as well as budesonide DR - ER 3 mg capsule, delayed, extended release 1 @ day for 30 days. We haven't started the oral meds yet due to the pharmacy not having it available, We will be starting these today.

His doctor feels this is the best medication for now. Have any of you used these medications? What should i expect?

I appreciate any feed back and thank you all in advance.

Christina

 

[Scipio]

I'm sorry this is happening to your son. The medication looks like a fairly standard approach to start with. If the diagnosis really is Crohn's and not UC then the Lialda probably won't help much. But docs prescribe it anyway - out of habit I guess. The budesonide will help but it's a temporary solution to get his disease under control. You and the doc will still need to figure out what the long term maintenance medicine (and diet) will be once your son is in remission.

 

[Cmp213]

I'm sorry this is happening to your son. The medication looks like a fairly standard approach to start with. If the diagnosis really is Crohn's and not UC then the Lialda probably won't help much. But docs prescribe it anyway - out of habit I guess. The budesonide will help but it's a temporary solution to get his disease under control. You and the doc will still need to figure out what the long term maintenance medicine (and diet) will be once your son is in remission.

Thank you. That's our goal for now is to get the inflammation down.

 

[my little penguin]

My kiddo was dx at age 7 with mild crohns
Started on Pentasa (5-Asa)
Moved to 6-mp,then methotrexate, then Remicade , then humira (over 5years ) and finally Stelara plus methotrexate the last 5 years
He is now 18

5-Asa are referred to by Gi as the equivalent of giving aspirin for a brain tumor
Great for UC since it treats the surface of the intestine
Not so good for crohns since crohns affects the entire thickness of the intestine and 5-asa like Lidia only treat the top layer

the other med is a rescue med -not long term to lower inflammation
Some kids can get by with just that
Others need oral prednisone since Uceris only treats the lower part of the intestine not the whole thing
Other kids use exclusive enteral nutrition
(Formula only ) such as pediasure ,peptamen jr (semi elemental) or elecare jr /neocate jr (amino acid based elemental formula )
The een is used as formula only for 8 -9 weeks
It heals the whole gut without side effects of steriods
But typically is not used long term

the drug pyramid
5-Asa are the lowest -least effect least side effects
The immunosuppressants-methotrexate is now used instead of 6-mp/imuran since those drugs have a higher risk of lymphoma
Last top tier is biologics typically remicade (infusion) or humira (shots )
These are the most effective but have the most cost and more potential (stress potential) side effects

10years of biologics have left my child with A nice healthy pink intestine that looks pristine and normal - no scaring /no strictures etc…

good luck with the MRE

 

[UKmum]

Sorry to hear this

My son was diognosed with ulcerated Colitis 1.5 years ago with the same symptoms.

I haven't changed his diet at all as we wanted to see if there were any triggers, if I took anything away then we would never know. So far there are no triggers when it comes to food , and yes, he eats junk as he is 13 and like a fizzy drink after school etc, however I try hard with nutritional meals and snacks, multi vitamins etc.. he is quite picky with food as are all my kids

He has been fine since his diognosis wheh it all settled down pretty quick.