Parent in need of advice on uc

[Aquaduct]

Hi My Daughter has just been confirm she has UC and tonight has taken Mercaptopurin, stomach cramps and pain.

10Mg per day

We could do with advice on the meds and what we need to know and possible list of foods to eat and avoid

she is 14 years old, had crohns at 6 years old recently flared up, really bad, we live in London,

any alternative medication etc we can try

regards

john

 

[Farmwife]

Welcome to the forum.
So sorry to hear about your DD having these problems.
As far a food...all kids are so different. The standard answers are usual avoid popcorn, seeds, nuts and fruit that has skins. My Grace can have most of those except apples products of any kind.

More parents will be along to help.

 

[my little penguin]

Hugs...
Has she been on 6-mp since age 6?
Where is her disease located?
Did she just have a scope ?
What were her symtoms of her flare?
What other tests have they done ( mre , upper Gi, pill cam)?
Has she had an upper scope as well?
Has she ever tried exclusive enteral nutrition ( EEN )?
EEN such as peptamen has been shown to be as effective in children as steriods without the side effects.
What other meds has she tried?
As far as diet- it can not cure Ibd nor keep it in remission but it can be a little extra help.
DS avoids most high fiber foods nuts , skins and seeds .
He drinks 2-3 peptamen jr a day .

 

[shalinico]

Yes, I agree with farmwife.......

Don't give her anything raw,

maintain a food diary

Introduce one new food at a time in small amount...if there is no problem....she can eat as much she likes.


I was staying away from whole grains and milk in the beginning but now I can tolerate, but only veg diet suits me now, so its an individual thing....

Moreover, whatever she eats, make sure that she chews her food properly....


Good luck to ur daughter....

 

[Aquaduct]

Hugs... Thanks

Has she been on 6-mp since age 6?
No just started taking it tonight


Where is her disease located?
Throughout her intestine


Did she just have a scope ?
Yes ulcer collietus

What were her symtoms of her flare?
Pain, loose bowels

What other tests have they done
( mre , upper Gi, pill cam)?
Had Mira scan


Has she had an upper scope as well?
Yes it would apear severe

Has she ever tried exclusive enteral nutrition ( EEN )?
Is that the meal drink, if so had that at 6years old

EEN such as peptamen has been shown to be as effective in children as steriods without the side effects.
Not sure on this, had steroids but did not work :-(


What other meds has she tried?


As far as diet- it can not cure Ibd nor keep it in remission but it can be a little extra help.
DS avoids most high fiber foods nuts , skins and seeds .
He drinks 2-3 peptamen jr a day .

Is that peppermint ?

Regards

John

 

[Aquaduct]

peptamen found it thanks will try, thank u for the advice

 

[my little penguin]

6-mp takes 3-6 months to work .
Make sure they are doing blood draws at least every two weeks for liver function ( ast and alt) as well as WBC / CBC , ttg etc...
Peptamen jr is a semi elemental formula similar to modulen.
How high of a dose of steriods was she on and for how long ?
In addition to the 6-mp do they have her on anything else to help until the 6-mp starts to
Work.
Disease location may include the small intestine ( ie ileum )
Colon ( ceacum , left ascending etc..) rectum, upper Gi tract ( duodenum , stomach , esophagus ).

How much does your daughter weigh ?
10 mg is a very very low dose of 6-mp.
DS was on 50 mg. lowered to 25 mg and later down to 12.5 mg with allopurinol added to shunt the drug away from his liver .
DS was only 22kg - 25 kg at the time .

 

[Aquaduct]

Make sure they are doing blood draws at least every two weeks for liver function ( ast and alt) as well as WBC / CBC , ttg etc...
She has a low liver enzyme so they will do bloods once a week.
Could you tell me what WBC CBC

How high of a dose of steriods was she on and for how long ?
I will check but she took them for 12 weeks

In addition to the 6-mp do they have her on anything else to help until the 6-mp starts to
Work.

No nothing else

Disease location may include the small intestine ( ie ileum )
Colon ( ceacum , left ascending etc..) rectum, upper Gi tract ( duodenum , stomach , esophagus ). I was told from top to bottom

How much does your daughter weigh ?
Not sure will check

10 mg is a very very low dose of 6-mp.
Low dose tried when she was 6 be reaction then
and now has a low liver enzyme

Regards

John

 

[Aquaduct]

Must sign off now 1.30am London
Thanks all replies welcome
John

 

[Sascot]

Hi, I don't have alot of advice - the doctors are just trying to get my son onto 6mp, but we haven't started yet. Just wanted to send my best - hope it starts working soon.
As for diet - we were told to eat anything unless it causes pain, but from reading around we: avoid popcorn, nuts and seeds. I cook all vegetables and peel all fruits. We also avoid anything too spicy - pepperoni is about as exciting as his diet gets, and even then he only gets it now and then.

 

[QueenGothel]

My DD had UC and now has a J-pouch. A lot of the food recommended for typical UC with diarrhea symptoms are low fiber, mash potatoes, bananas, I found the ileostomy list to be very beneficial. My dd never had diarrhea when she had UC always was constipated. So my list was very different. I used non bulking foods so raw fruit high fiber and whole grains were our friend also we needed Miralax bc she was high risk for megacolon bc of the chronic constipation . So it depends upon this symptom. Most people assume diarrhea is the symptom.

Nutritional shakes are always awesome. We currently used Peptamen Jr (proteins are pre-digested for her j-pouch) but I found Nutren Jr tastes a lot better... less of a metal taste. Prescribed nutritional shakes you can have your doc write a script for. Some people also use carnation instant breakfast if lactose is not an issue (again we go back to the diarrheal symptom). We cut it with lactose free (Breyers) ice cream to make it taste better and weened the ice cream now she drinks them straight up. :thumright:

EEN actually doesn't help with UC it is more for Crohn's disease. Though nutrition is awesome and can totally help keep her growing but will not cause remission with UC or Crohns colitis.