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My 12 year old son was diagnosed with UC 3 1/2 years ago.  Since then he has been on Pentasa 2x daily.  After the last flare a couple of years ago 6 MP was added.  We are back in the hospital after 11 days of diarrhea and vomitting.  His labs showed no elevated WBC or any other signs of a flare so they actually thought he had the stomach flu and couldn't fight it on his own.  After getting scoped yesterday doc found he was having a flare and his colon was very inflammed and bloody.  He has been in a lot of pain for quite a while and has bone loss and is underweight for is age.  They started him on Remicade and Prednisone yesterday so now we have to watch to see how he reacts.  I have been reading and reading for days now.  I am so overwelmed with all of the information out there.  We have never seen any reactions to food but I would like to start really checking out what he should and shouldn't eat.  He has to put on some weight soon.  He is 12 years old in 7th grade and weighs 60lbs.  His twin 10 year old brothers are much bigger than him.  The internet is becoming a scarey place when I read about this new medicine and what can come next if it doesn't work.  Any advice from other moms out there?  I feel like I need a medical degree to understand everything!!

 Reply posted for SherwoodMaZ.

SherwoodMaZ - I'm so glad you are home - they are better off at home!  Sounds like you are wading your way through all the diet info.  Reading is so helpful.  Everyone has an opinion but you figure out what is best for your son and it sounds like you have a good partnership with his doctor.  Good for you all.....you'll find your way.     

Lots of prayers for you all.......let us know how he's doing.

Claire's Mom

 Reply posted for SherwoodMaZ.

Do read the books Alan has recommended. Diet makes a real difference. I have used scd/low carb for four years (uc) and have only taken minimal medication in that time (mesalamine and occasional pred enemas) and it has made an enormous difference to my health - no pain, no gas, no fatigue (just normal tiredness!), small flares controlled quickly and other auto-immune symptoms have completely disappeared.

- for Hammertime, I have a little persistent bleeding to remind me I  still need to be careful. It can be one of the most difficult symptoms to resolve - see the book LWB.

It does take a whole new approach to food but it is not difficult to stick to if you can accept that the right fats (butter, coconut oil, animal fats, cold-pressed olive oil) are healthy and a good source of calories, and carbohydrates need to be treated with caution. Some recent studies have suggested a link between pufa oils and uc.

Warm wishes

 Reply posted for hammertime1121.

It does get better.  It is so hard when our kids are diagnosed with a disease.  Sitting by and watching them suffer is the worst.  I feel the same way.  My son did great for 3 years.  He had a couple of flares and had to change his meds but this is the first time that it was bad enough to go to the hospital.   Although I am overwhelmed right now; I do remember how bad it was in the very beginning.  It seems you have to go through kind of a grieving process.  Life is going to be different for your family now but there is hope.  Hang in there:)

 Reply posted for AZMOM.

We are home.  He is feeling much better.  The steroids have kicked in and helped.  He is still having pain.  This Friday is his next Remicade treatment.  I have read some stories about kids feeling much better after the second treatment.  I hope that is the case.  He is very worried about getting back to school as he has missed 3 weeks so far.  Middle school is stressful enough without the medical issues to deal with.  I am still doing a lot of reading a research.  I feel pulled between what the doctors say is best and what some of the articles I read say.  It is a difficult spot to be.  

 Reply posted for SherwoodMaZ.

Hey - how are things going?  Have you all been able to get home?

 Reply posted for lisasews.

My hearts go out to all or you as I am going through a new diagnosis of UC with my 14 year old son.   I can't stand seeing him in pain and the fear of seeing the blood.    I cry myself to sleep, and pray and pray for this to end.   He is on 4 Lialda and prednisone enemas due to his flare-up.   Dr says pain is normal and he needs to rough it out.    Does it ever get better?    

Thoughts and prayers to all of us.

 Reply posted for SherwoodMaZ.

I forgot one other word of wisdom - well maybe not wisdom :-) - but more of my two cents.  I always joke about attending the "University of Google" every time we get another diagnosis or test result.  But, really, we do that.  We look things up, get on the forum, work hard to educate ourselves, it's all part of advocating for our children.  But, yes, it can be scary.

Try to take it one day at a time, one small victory at a time.  And don't let information overload scare you to death.  Even on this forum, it can be scary.  The "typical" patient (or parent) who is doing well, clicking along in remission, is not usually a prolific poster telling people how great things are.  Now, there are a few on here - thanks few! - but I'm saying for the most part you are reading about struggles.  I am the only parent in our support group (which has LOTS of parents) who ever is on here.  Most of the children are doing great and I"m convinced ours can too. 

So keep on reading and helping make tough decisions for your son.  You are doing all you can do for him.  Just try not to let it get too scary or get ahead of yourself with the 'what ifs' that you come across on the internet.  By the way, copy and paste this back to me the next time I'm in a wide-spread panic. 

Take care,

Claire's Mom

 Reply posted for SherwoodMaZ.

I hope he responds quickly to the Remicade.  I know it has worked well for a lot of patients!!  There is nothing more heart wrenching than having your baby in the hospital.  (I tell mine that no matter how old she gets, she's always going to be my baby.  :-))

Anyway, there are lots of diet ideas out there.  What worked well for us when we came home from the hospital was following What to Eat With IBD by Tracy Dallessandro (I hope I'm spelling that right!).  She is a dietician who was initially diagnosed with UC and then changed the dx to Crohn's.  It made a lot of good sense to me and was very helpful in feeding Claire while she felt so bad.  And, she actually liked the food.  So that helped!

I know you'll be doing lots of research so I thought I would add that to your list of things to look into.  When Claire was in the hospital, it was one of the books in the hospital library so if your hospital has that resource, you might be able to get on it. 

You and your son are in my thoughts!  Keep us posted!

Blessings,

Claire's Mom

 Reply posted for SherwoodMaZ.

I hope the remicade helps.

My son had 1st dose a few weeks ago, 2nd dose today---still on steriods and pentasa etc....the remicade helped with the symptoms and made it possible for him to begin to eat...we were encouraged by his weight gain recently and hopeful it will continue. Previously, everything he ate was causing pain and he had minimal interest in any food. (age 16 dx with crohns in summer 2010)----very upsetting. we tried Boost supplements, scandishake, scandical, milkshakes etc...he not injest it.