Starting on Modulen

[RobPlw]

Hi everyone, my 15 year old daughter who has been just recently been diagnosed with Crohns (was diagnosed with Ulcerative colitis) has started her 1st course of azathioprine (2 weeks in) and is currently 4 weeks into a course of Entocort 9mg dropping to 6mg this week. She is wanting to try the Modulen diet and we are wondering what to expect and how she'd cope without solid food for 6 weeks. Has anyone any experiences with the Modulen diet? What it tastes like? How its made up? Can you make a days supply the night before or must it be mixed fresh? Any help would be great. Thanks.

 

[Farmwife]

Hi and welcome.
I'm going to tag in Tesscorm, MLP, Twiggy930.
They've had children do EEN and are very good at explaining in detail why and how it works.

My Grace is 4 and has been on EEN for 7+ months. We love it.

 

[jancapper]

I ,m on modulen now for 6 weeks I,m on day 9 I, make my drinks at night for the next day which is really good, really easy to make up. mine is 6 scoops to 210 ml of water I add 4 scoops of the nesquick flavouring shake it and put them in fridge to use the next day , you have to use cooled boiled water so I do a pan full then when cooled I put in fridge till I make the drinks for the next day , really easy , have to say though I find I am really hungry on them but everyones different but have to say I feel so much better for doing this and have a lot more energy , I,m taking them as I also have crohns was diagnosed a few months ago and my sons also have it my eldest lad for 10 years now , hope this helps a little xx

 

[Farmwife]

Here's a good post describing it in detail. Press HERE!

Also here is a forum dedicated to this topic. Press HERE.


:hug:

 

[Sascot]

Hi, my son did the 8 weeks of Modulen when he was diagnosed. He had to have the NG tube as he hated the taste, but the IBD nurse said most of her patients manage to drink it fine. We were able to mix it with different flavour Crusha to give a bit of variety. To be honest my son really managed fine without the food. He had about 400ml for breakfast, lunch, mid-afternoon, dinner and just before bed. I boiled the kettle then let it cool around 8pm then made up the full amount for the next day around 10pm. You just keep it in the fridge. My son didn't like the feeling of it cold in the tube so we left the 400ml out for 15/20 mins before hand. However I think it tastes better really cold if they manage to drink it. Good luck - it really did work wonders for my son.

 

[crohnsinct]

Hi there and welcome. My daughter didn't do Modulen she did Boost and Ensure which I think are much more palatable. She didn't have a problem giving up the food because she was so motivated to get better. Couple of suggestions:

- put the drinks in a cup with a cover. If you can lessen how much they can smell they taste better.
- drink with a straw...bypasses some of the taste buds.
- don't concentrate on how many days are left. Take it one shake at a time in the beginning then one day at a time. Even if she abandons effort anything she does is great.
- my daughter was only allowed water so the chewing action was an issue. Doc ok's one piece of chewing gum a day.
- rewards for each week...haha welcome to bribery 101.
- at usual meal times, plan some other fun activity to distract her from what she would normally be doing.

I am sure there are a bunch more I am forgetting a bunch of the hints. Your daughter sounds very mature and motivated. Godd Luck!

 

[Willowcat05]

Hi ly son has done modulen twice first time when he was diagnoised. feb 2012 then again in april this year both times through ng tube he didnt like taste even with flavour in it. I made the full amount for the overnight feed and his boulases last thing at night and kept in fridge he was at school atthe time so took his lunchtime boulas ina flaskbto keep it cool he has done really well both times on modulen if your daughter feels hungry ask your dietitian if it can be concentrated a bit so she is not hungry.good luck.

 

[rollinstone]

im on it atm, I don't boil the water though, I have a filter

 

[emmaaaargh]

Hello and welcome! I was on Modulen for a REALLY short time when I was 11, so sorry if anything's inaccurate since it was a few years ago.

The taste wasn't great for me, nor was the texture. I hate anything milkshake-y, so I moved onto Elemental 028 instead because it tasted a little better and was more juicelike.

I can't help with comments about making it up or anything but it seems I coped somewhat counter-intuitively. I marked each day on the calendar off with a cross so I could see how far I'd come and once I got past the halfway mark it was a breeze.
I took the cartons to school - not a problem for me since I'm not at all shy about my IBD - and had four for lunch.
I even sat at the table with my family when they ate dinner, because if I could smell what they were eating as I drank, somehow, it wasn't so bad. I know - this seems really weird, but that's how it was for me.

I have to say, I admire your daughter a lot! I don't think I have the willpower to do a course of EEN nowadays. I hope everything goes well, though!!

 

[Tesscorm]

You've had tons of advice so I can't add much. And, my son did his overnight through NG tube as well so no advice re drinking during the day.

One thing you might want to ask the GI... my son was allowed clear liquids while doing the liquid diet. He was allowed clear broth, jello, popsicles, freezies, pop (not dark pop like coke), juice beverages (with no fibre), etc. The broth especially helped when he wanted something that resembled a meal - ie, warm and with a savoury flavour.

My son also responded very well to his treatment. I hope it helps your daughter!!

 

[kiny]

it tastes like very light milk, you can just put it in the fridge overnight if you have some left over

if you stop eating solid foods, after a while you don't care about them anymore, I had the same experience on TPN, and on 028 and modulen, you just stop longing for it after a while (unless you reintroduce it)

I never had issues wit the taste, modulen and 028 taste pretty neutral, and you can always use the tastes or make your own by using orange juice or any sports drink or fruit juice or whatever you like.

You can also add as much water as you like, there's a minimum osmosis limit, but not a maximum, if it's too heavy or doesn't taste right, just add a bit more water to it, it will neutralise the taste more.

 

[RobPlw]

Hi all,

Thanks for the replies and great advice. You have given us some excellent feedback and some questions to put to the GI & dietitian when we meet next. Holly seems determined to feel better and wants to try the Modulen as soon as possible. We'll keep you all posted on any developments.....watch this space!!