New to Crohn's, I have some questions about Crohn's and need help!

[BridgetB]

Hey!
I have just signed up for this as I have just been diagnosed with Crohn's disease.
I saw this is where we introduce ourselves and talk about our experience's.
So I'm Bridget and I am turning 15 soon.
I am also from South Australia
I have been feeling very fatigued,exhausted and generally unwell for quite some time.
I have never experienced stomach pains or having to rush to the toilet which I have heard is a common symptom.
My GP ran some blood tests on me and it turns out I was very Iron deficient, Anaemic and had high inflammation levels. As I haven't had stomach pains we didn't think anything of Crohn's at first but I had a scope on Monday and found out the Crohn's was located in my small bowel.
My GI has recommended to try Modulen and Azathioprine. I will be starting the Modulen formula tomorrow which I will need to be on for 6-8 weeks.
I have heard Modulen has helped out loads of people and brought them into remission. I am just really worried it will be tough and hard to not get tempted by food.
Has anyone here tried Modulen and been successful/unsuccessful? And how did you go sticking to the diet?
Also, does anyone else not experience stomach pains?
What are your symptoms?
What medication did you use to control your Crohn's and how did you stay in remission?

Thanks, Bridget!

 

[Clash]

Welcome!

There are a number of members that have been on Modulen or some other type of formula exclusively. It can be done but it is tough, especially the first week.

My son took formula as a supplement and through an ng tube over night. He would insert the tune every evening and withdraw it every morning.

Here's a thread involving other kids using Enteral Nutrition

http://www.crohnsforum.com/showthread.php?t=36345&highlight=enteral+nutrition

And here's a teens only forum with other teens dealing with CD

http://www.crohnsforum.com/forumdisplay.php?f=67

 

[ohnoitsjess]

Hi welcome to the club... I know it's not the best place to be but you have support! Well i was diagnosed at 11 and since have been on many things but not Modulen. And got diagnosed at the hospital after a resection. My first medications were Pentasa and Purinethol. That worked for a number of years I also in that time tried remicade for a long time. I had about 10 years of remission. Then I needed another resection so they changed me to Humira so thats what I'm currently on. But every med they give you, you have to be honest with the GI as to what are your symptoms so they can adjust accordingly. Best of luck.

Jess

 

[mvond5]

Google worm therapy..

 

[dave13]

Welcome Bridget and happy soon to be 15th Birthday. Australia is well represented on the Forum. I don't have experience with Modulen,I hope you check out the links Clash posted.

I may not be of much assistance here,but feel free to contact me with any questions.

 

[Pilgrim]

Hi Bridget! I have a beautiful little daughter who was diagnosed with Crohn's at age 3 and we used a Modulen-type exclusive diet with her for 6 weeks initially and then another 6 weeks later on.

Things that will help you:

It is way better than steroids (no side effects, moon face, etc...)

The first three days were really hard for my kid. But once she pushed through those days it became no problem. Her taste buds got used to the formula.

She also, like you, was exhausted with low iron, and growing inflammation markers.

When you start the Modulen, maybe ask if there are any little treats you can have like: clear popsicles, jello, hard candies, vitamin gummies. Then you can reward yourself with one after you drink a certain amount of modulen.

Hope that helps.