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Need someone to talk to who is on Modulen or has been on Modulen.

Hi. First of, thank you for taking the time to read this thread :smile:. As the title suggests I need someone to talk to who is familiar with Modulen, I want to hear your story of how you are getting through it or how you got through it. I am starting my treatment of Modulen in 1-2 days from now and would appreciate and strategies or support from anyone and everyone!

Thank again!
-Dakota, 17
 
Hi, Dakota

My son has crohns, he was dignoised when he was 8 [ now 13 ]. He first used modulen when he was 9 for 6 weeks. Are you going to be drinking it or having an NG tube?
Josh drank his. I won't lie, it is hard to start with. He didn't like the taste, though we had the nesquik flavours that it came with. We ended up putting in Crusha syrup [ flavoured syrup ] which helped. The volume was difficult at first to get used to as he was drinking around 6 beaker fulls a day, working out to around 2000 calories. Once he was drinking the correct amount he never felt hungry.
He used to take his into school with him and drink it there. He used the school office as he didn't want to sit in the dining hall with it.

He wasn't allowed anything to eat at all whilst taking modulen apart from the odd clear boiled sweet or clear jelly. He used these as treats as sometimes he just wanted something physical in his mouth.

Modulen is used to give the bowel a complete rest and it does work, though not easy to do for weeks at a time. Hopefully it will give you the help you need.

The second time Josh had to do it was over Christmas and his birthday, which was very hard to do!
 
Thanks for the response CDJ! I will be drinking it, I have tasted it before as they gave me a sample to take home. I can definitely see how adding some of the syrups would help get it down. Do you know how he told his friends, or if he did at all. I am not entirely sure how to describe it to my friends.

Thanks again,
Dakota, 17
 

Tesscorm

Moderator
Staff member
Hi Dakota,

My son did six weeks of EN to induce remission. He was just about 17 when he did it as well. He used Tolerex, instead of modulen, and, as it's not drinkable, he used an ng tube at night (would insert it himself before bed and remove in the morning).

As he had all his nutrition overnight, he was allowed clear fluids during the day - broth, freezies, gatorade, clear pop, etc. While he was in school, we arranged with the school to keep freezies on hand for him and I sent him some broth for lunch. This allowed him to sit with his friends and, at least, have something to sip on. If you are allowed broth, this seemed to be a big help to him - it gave him something warm and had a savoury, 'meal-type' flavour (a change from the other 'sweets' he was allowed). Distraction was also imporant!

As far as what to tell his friends... he really just told them the basics, said that he had inflammation in his intestines and the formula would clear it up. He was actually very open about it and his friends were all really supportive.

It certainly isn't easy but it helped my son quite a bit! It took him into clinical remission and his symptoms were gone very quickly. Aside from taking some time to rebuild strength, weight, etc., he was back to his regular lifestyle within 3 or so weeks.

Sorry, I've gtg now but, good luck and let me know if you have any more questions.

:ghug:
 
Thank you Tess, and glad to hear it worked so well for your son! Hearing so many good stories about liquid diets is helping me be more confident about it :smile:. I am allowed broths and other clear liquids in moderation during the day while I am drinking the Modulen. Probably time to go shoping for such things.

Thanks again
Dakota, 17
 

my little penguin

Moderator
Staff member
DS drank peptamen jr( similar to modulen ) as EEN for 9 weeks when he was 7.
He is now 10 and still drinks 2-3 a day as a supplement to keep his weight and growth normal plus meds.
We found metal water bottles which held two shakes .
He drank two in the am -breakfast
Two in a water bottle kept at the nurses office refrigerator- and drank in the cafe at lunch.
One after school and two for dinner with crushed ice to maintain chewing muscles .

Most kids talk a lot at lunch so if any one asked he said he was bodybuilding and drinking protein shakes ;) -again he was only 7.

Make sure they are really cold do not freeze them
And use a straw to by pass the taste buds.

Over the holidays - DS missed thanksgiving and Christmas
He used fancy disposable festive coffee cups with lids and fancy straws .
He also has pure sugar cooked with water placed in shaped silicon molds to make "sugar cookie"
Pure sugar can be made as cotton candy -which can be made into pretend cupcakes for parties
Sprinkled sugars cane on crushed ice as well.

Again check with your Gi first every doc has different rules .
Good luck
 

Tesscorm

Moderator
Staff member
He used fancy disposable festive coffee cups with lids and fancy straws .
Yes, funny as it sounds, this also helped. :) My son would sometimes have broth in a bowl with a spoon, other times just drunk from a mug. I would also heat up the broth with different spices to change up the flavour - chicken broth with parsley or oregano, beef broth with rosemary, etc. Just be sure to strain the broth, it should be clear without any pieces of the spices.
 

Lady Organic

Moderator
Staff member
Hi Velnihote,
if the taste is not very good, I suggest putting ''swimmer's nose pincher'' sorry dont know the exact term in english. You know this thing swimmers put on the nose... Plus using a straw. Thats what I was using and would swallow water with a straw also and then after I would remove the nose pincher. That way you dont taste the liquid. Good luck and let us know how you go :)
 
Hi Dakota

I would check properly that you are allowed broths while doing modulen. I know when Josh has done this in the past he wasn't allowed anything like that. We were told that as it was to rest the bowel, then nothing else was allowed.

As MLP says, make sure the modulen is very cold as it is easier to drink. I used to make up a batch and keep them in the fridge to use for later.

Josh told his friends he was doing it to give his stomach a rest and they just accepted that.
 

Lady Organic

Moderator
Staff member
Hey Dakota,

how it goes with Modulen?

I just tried it last week after coloscopy confirmation of CD flare. Tried it for 2 days, but as symptoms continued to get really worst right after very painful exam, I had no choice to stop Modulen and go on with plan B : take the prednisone unfortunately. I hope you have better outcome.
 
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