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my 9 yr old son recently dx'd with UC..help!


Thu, October 15, 2009 12:00 AM

My 9 year old son has had stomach pain & horrible diarrhea for a few years mostly first thing in the morning immediately after breakfast.  He was sent to Shands Hospital and a endoscopy, small bowel biopsy and colonoscopy was done.  Although they said everything looked normal to the naked eye...his biopsy came back as UC.  We are very confused about the diet portion of this disease.  Fruits and Veggies or not?  Wheat or not?  Carbs or not? Sugar or not?  Milk or not?  We do know that caffeine seems to be a trigger.  The Drs. want to start him on Asacol.  We dont know whether to start with meds or try dietary changes first!! Also going to try probiotics and fish oil.  Any information or advice you could give us would be appreciated......

FPO jacksonsmom
Joined Oct 15, 2009

Wed, October 21, 2009 12:00 AM

 Reply posted for jacksonsmom.

Hi!  Diet affects everyone with IBD differently.  The only way to know what diet will work for your son is through observation and cognizance.  I know it will seem overwhelming at first but with time, food trends should emerge.

When I had UC (I've recently had surgery to remove my colon - so I no longer have UC), there were no trigger foods for me.  Nothing made me feel better or worse.  However, I know of others who find a softer diet to be more soothing. 

Trial and error is the only way to find out what works for your son.  I know it isn't an easy answer - I sure didn't like that answer when I was diagnosed!

When I had UC, I was on the maximum dose of Asacol (12 pills/day).  I found it to be a very helpful drug.  However, my colitis was severe and universal and eventually the Asacol was not enough and I had surgery.  Asacol is for mild to moderate colitis.

Best wishes,

Angie

FPO ang300
Joined Oct 20, 2009

Wed, October 21, 2009 12:00 AM

 Reply posted for jacksonsmom.

 rearrange our family eating habits to help support my daughter in her efforts with living with this disease..she is doing well now (1 bowel movement, usually every other day) she is in school and developing normally and has a fairly healthy appetite..It can be really hard sometimes coming up with food ideas and always being careful to give them tasty, home made, nutritious foods, it is a full time job !

FPO monlasic
Joined Sep 25, 2009

Wed, October 21, 2009 12:00 AM

 Reply posted for jacksonsmom.


breakfast with plain toast, since we have not yet really tested the milk tolerance....i can suggest a really good book u might want to try and read or check the web site...Dr.Weil (healthy aging)..he has some very good tips and information about an anti inflammatory diet (actually a new way of learning to eat)...its not difficult and is good for everybody..i am trying to 


FPO monlasic
Joined Sep 25, 2009

Wed, October 21, 2009 12:00 AM

 Reply posted for monlasic.

What i am also trying now, and i think it can't hurt, is giving her a fishoil supplement, and i also got my hands on some other natural stuff like milk thistle powder (this is said to help rejuvinate the liver and pancreas from medications.and readily available in this country everywhere).We also use alot of natural herbal teas like, stinging nettle, sage, chamomile, lemon balm and others which are mild and non toxic, i give them to her for breakfast

FPO monlasic
Joined Sep 25, 2009

Wed, October 21, 2009 12:00 AM

 Reply posted for jacksonsmom.

hi there..... my 11yr.old daughter was diagnosed with UC (the whole large bowel) just this summer...she had diarrhea for several months and severe anemia (but she also had contracted some bacteria and an a parasite-amoeba..so when they finally diagnosed the UC, we didn't know what caused what)...she spent a month in the hospital (getting tests and making sure meds worked)....we live in europe (Bosnia actually) and i had never really heard of the disease before, i was stunned, but we had very understanding and helpful docs and hospital staff...and thank GOD for internet..i immediately plunged into googling anything i could find out about the disease...it has helped me alot in coping with this everyday-rest of your life-disease....she is doing well...immediately they had put her on prednisone (60mg daily)..asacol (1200mg daily) and nexium 20mg in the am (this i was told was to help protect her stomach lining from all the meds??)...she was also given 3xdaily-5ml liquid form of iron,vitD3 together with 1000mg of calcium supplement (because some of these meds like prednisone deplete the bones)...this went on for 6 weeks, then we slowly tapered off the prednisone, and now she has been on only the nexium and asacol (and will stay that way for a few more months)..plus all the supplements...

FPO monlasic
Joined Sep 25, 2009

Thu, October 15, 2009 12:00 AM

 Reply posted for loving mother.

thank you both so much for posting!! It is soooo comfusing and we do have an appt. on Tues. so I am gearing up with questions.....I am so scared to start medication with him but I dont want him to be in pain either....I gues we have to bite the bullet and just do whatever is necessary to give him some relief.  Will start a food diary as well....thanks so much from one warrior mom to both of you warrior moms!! Be blessed!

FPO jacksonsmom
Joined Oct 15, 2009

Thu, October 15, 2009 12:00 AM

 Reply posted for AZMOM.

thank you both so much for posting!! It is soooo comfusing and we do have an appt. on Tues. so I am gearing up with questions.....I am so scared to start medication with him but I dont want him to be in pain either....I gues we have to bite the bullet and just do whatever is necessary to give him some relief.  Will start a food diary as well....thanks so much from one warrior mom to both of you warrior moms!! Be blessed!

FPO jacksonsmom
Joined Oct 15, 2009

Thu, October 15, 2009 12:00 AM

 Reply posted for jacksonsmom.

Hi. My 8 year old son has Crohns.  He was diagnosed a year ago.  It is very hard deciding what to do.  My son is on Azathioprine, Prevacid, Vit. D, Iron, and Miralax.  He was on Pentasa but we have weaned him off because his doctor wanted to see if Azathioprine (Imuran) can do the job on its own.  Pentasa is similar to Asacal.  He was on it for a year.  Because Azathioprine (Imuran) is much stronger the doctor thought it should work on its own, if not then Pentasa will be added again.  Asacal and Pentasa are milder medicines but I know when its your child any medicine is scary.  Like AZMOM, we have found only few foods that bother our son and have eliminated them or limit them.  I think it is important for you to keep a food diary to see if there is a link between what foods your son eats and if they aggrevate his UC.  Because my son had lost alot of weight and was not eating I felt like I had no choice but to start medicine.  It is up to you how you want to approach it.  I hope your son feels better soon. Take care. 

FPO loving mother
Joined Nov 28, 2008

Thu, October 15, 2009 12:00 AM

 Reply posted for jacksonsmom.

Hi Jacksons Mom.  My daughter was dx with Crohn's in June.  For some people, there are definite foods that a triggers and for some not.  It is a trial and error thing.  For example, my daughter drinks milk like a horse and it is totally fine.  Other people can't tolerate lactose. 

I would talk to the doctor.  He/she might want you to use the Asacol to get things calmed down and then try to figure out the diet.

When my daughter first got out of the hospital, we stayed low fiber and then would try something with fiber (veggie) one at a time so we could see what bothered her.  We have found that there are really only a couple of things food-wise.  Then again, she is on medication.

I don't mean for my post to be confusing.  I guess I'm just reinforcing that the disease process & triggers seem to vary widely from person to person.  Makes it hard for a parent to get started though!!! Doesn't it?? 

Other advice from a Mom?  Be sure you are comfortable with the doc and ask him every question you've got.  If you aren't comfortable with his advice, you can't be confident with what you are doing at home.  We are blessed with a great one. 

Let us all know how he is doing......and hang in there!

 

FPO azmom
Joined Jul 20, 2009

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