Newbie Here!

[scrapper1264]

Hello everyone! My 8 yo son was diagnosed with Crohn's back in the fall of last year. It took a couple of months to get it diagnosed since he also has Cystic Fibrosis. The doctors were focusing his CF, and not even thinking of Crohn's.

He immediately started prednisone and remicade because of the severity of his disease. He was weaned off of prednisone after 4 wks or so, and stayed on remicade until a few weeks ago. He has developed antibodies to the remicade, so we are in the process of starting cimzia. We are also in the process of changing his diet to organic and gluten-free. Also eliminating a lot of junk food that he had been eating. CF doctors promote all the junk food for weight gain - go figure!

I came to this forum to find out the importance of diet since the doctors say it's not important. Hopefully the cimzia will work. Our dilemma (hopefully in a few months when he is better!!) will be figuring out what is working - the diet or the cimzia.

So that's our story - thanks for reading!

 

[Jennjenn]

Welcome

I really hope the cimzia works for your son. Diet is something that is very tricky. Besides the low residue or other common diets that people follow, a lot of food affects each person differently. Sometimes even the same food can be ok for a person one day and not the next. It all depends on the person. I wish your son the best of luck with the new treatments and hope that he feels well soon.

 

[Crohn's 35]

Hi there :welcome: Glad you made it here! As Jennjen says diets can be tricky and is said that diet doesn't matter, but it does. The only thing is we all differ, I don't know about CF, but it sounds like you have a sick child on your hands. To have another problem like Crohns is enough to deal with and my heart goes out to you! We do not have Cimzia here but many people have but not any one young (that i remember off hand) being on it. I was allergic to Remicade and Humira worked for a bit but peter'd out. Hopefully getting your son pain and symptom free will be such a relief for you and him. The best health info is seeing a digestive disorders dietician, mine knows more than the doctor know. :goodluck: and keep us posted on his journey. Welcome aboard!

 

[Dexky]

Welcome Scrapper!! I struggled with that "diet doesn't matter" advice for a long time as well. We tried for a long time to watch every little thing my son would eat but slowly his diet has somewhat normalized though we certainly still avoid fast food. Like others have said though, it seems diet is as varied as the people who have crohns so it's a personal journey to discover trigger foods. Good luck!!

 

[DustyKat]

Hi Scrapper and :welcome:

I'm so sorry you had to find your way here but the upside is it is a fab place for support and info!

Wow, your little guy sure has a lot to deal with so I hope we can be of some help to you, the one thing we can definitely do is be here for you, some one to help take the load off and give support.

As the others have said, this is a very tricky disease and unfortunately it can be good at moving the goal posts! :eek2:

I personally believe that diet alone won't cut the mustard but I do believe used in combination with other treatments it can be quite effective. Certainly many people here find that diet is very useful in alleviating symptoms when they are flaring and when they aren't it can still leave them feeling more energised and in a better place.

Perhaps if you aren't already using one a diary would be helpful. This may give you some ideas of what to include......

http://www.crohnsforum.com/wiki/Diary-Inclusions

I hope the Cimzia will work for your son, fingers and toes crossed!. Keep us posted on how things are going, good luck and welcome aboard!

All the best, :hug:
Dusty

 

[MomofIBD's]

Hellow Scapper, I am so glad you found us, but we wish you didn't have to be here! I am still learning my way with the diet. Finding a balance in Diet with traditional therapy is hard. I'm finding that the diet is helping. Just what feels good for my son. Trial & error indeed as everyone is different.....that doesn't mean that what someone else is doing won't help your son also. What else can I say....the above have it covered nicely! Hang in there it is so not an easy what your son is going through!

 

[scrapper1264]

Thanks for the replies everyone! From what I have learned here so far it seems like changing my son's diet will not cure his CD. My husband thinks that if my son eats all the right foods/supplements his body will heal itself. He read a story about someone with CD who was cured by eating whole foods/organic/etc.

We are still waiting on a response from the doctor on cimzia. Hopefully we will have a plan soon because my son's skin tags are starting to bother him again.

 

[troydanielbecker]

I am kind of like your husband, but after time finding a sort of balance that either
a) that magical curative diet is different for everybody and oftentimes very elusive,
or
b) that magical curative diet just doesn't exist for everybody.

I still have a lot of faith in the science behind the importance of what we eat and the health of our intestines, mind you. You can read more about us and our path at our blog for more details!