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Struggling on Modulen-Please help?

Hello,

I have been suffering from a stress-related flare-up (after my Dad died a few weeks ago), and my IBD nurse suggested that I try Modulen....

I have been desperately trying to build up the dose, but after 2 weeks, I am unable to have any more than 500 cals a day because I am having violent symptoms (far worse than before), and have lost 10 pounds....

I have been sipping it slowly, my dietitian rang nestle and they told me to add benefibre, (which I have been for a few days now), to no avail....

I have also been diluting it as told,... but I feel awful, and I am getting really upset about it.

I have very good will power, and was really positive about it (even though it's rubbish not eating food), however this morning, I nearly ate some breakfast because I just cannot see the point in modulen...

I know that it can take a few days to work, but I don't want to go out, and am more panicky than I was prior to modulen....

Please, any suggestions greatly received.... do some people just not tolerate modulen??

Thank you very much...
 

soupdragon69

ele mental leprechaun
Hey Katiepede,

Am sorry you lost your dad ((hugs))

Stress can do horrendous things to us as you well know and to convert to no food at all at such a tough when it sounds like you have never had it before can be one heck of a mountain to face!

I use Elemental 028 extra and I agree totally it is very tough not eating. What is it about the modulen you arent coping with exactly? Is it the taste? The lack of solid food? Or is it the stress of coping with losing your dad AND trying the no food route AND coping with these type of drinks for the first time? You say in your post that you arent coping due to violent symptoms - are they hitting you just after you have modulen or at a particular time? Maybe we can help with ideas on how to get round that specific aspect.. It may also be you are feeling awful because you are nowhere near your normal intake of nutrients for the day and that can compound it, the lethargy and the exhaustion on top of the emotional aspects.

Some folks dont tolerate modulen and are better off on another supplement drink like the one I am on for instance. As with all of them they are an "aquired taste" and you are very right that it takes some days to switch over and for them to have an impact. Can you freeze modulen to make a sort of sorbet? I can with the Elemental and it certainly helps at times when I am fed up with just fluids all the time.

Stress makes us panic at times and if you are stressed on all fronts above I am not surprised you are panicking and not wanting to go out!

If I can help in any way just PM me or post here. Am sure a few of the others will answer you also.

Hang in there honey. We are all with you each step of the way ok? Just hold our hands and you will be amongst friends who understand.

Thinking of you ((hugs))
 
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Thank you very much for your reply, you are very kind.

It really hasn't been a wonderful year, and I am not looking forward to Father's day next weekend :-( But we are a close family, and I know he'd be proud of me, and I really am thankful that I had such a lovely Dad. I just think the months of stress before he died (which were hell), have finally caught up with me....

Yes, it's not the greatest stuff to eat, but I have been adding some of the flavours and haven't found it too bad. I think the problem is I could see the point in the diet when I felt confident that it might work eventually, however after 2 weeks the symptoms are so violent, and unpredictable that I just cannot see the point, and I am really not having anything... Haven't had a thing yet today. The obvious effects mean that I am so weak on the few calories I am having that I don't want to do anything.... Plus the thought of going anywhere brings on my panics... which I haven't had in nearly 2 years...

I was thinking about going back to food, but just having a very bland diet, to try and calm everything.....?

I am meant to be going out today, but I just can't face it really.... :-(
 

soupdragon69

ele mental leprechaun
Hmmm, have you tried little and often? Perhaps a few sips every 20-30mins for instance.

It is possible that your gut wont tolerate the modulen but will tolerate the elemental for example. Each one doesnt suit everybody.

Certainly sounds like you have had a very tough run of things. You havent said what if any medication you are on Katie, are you on anything that could be increased for a little while? Or, have they discussed a short blast of steroids i.e 5-10 days that might settle things enough for you to get onto the modulen properly?

Thing is Katie the less of an intake you have the less you want to take in over a period of time. You need some help with breaking things down to help you cope too. Have you seen your GP or will they at least talk to you over the phone if you cant get in or come and visit you?

I am so glad you have a close family for support but at the same time I understand too that you dont want them worrying about you on top of everything else.

Keep kicking things round here.. I am at work tonight but if I get a chance will check the thread ok? If not will post again after I finish work or tomorrow.

You will get there honey, believe me you will ((hugs))
 
Hello, thank you again,

I have been drinking 250mls over about 4-5 hours.... teeny tiny amounts, and my gut still hates me...

I am on azathioprine and have been on budesonide at various intervals...
I was doing really well the end of 2009 and going dairy free, and reducing my intake of rich foods had really made a difference.

Then, well everything went rather horribly, but I was hoping this time I wouldn't have to go onto steroids... however, I really don't think my body can tolerate this modulen...

I will ring my IBD Nurse on Monday. I saw her last Wednesday and she thought that maybe I would have to give up.... It's stupid because I actually don't mind taking it at all!
It's just making me incredibly ill :-(

Hmmmm as I am very sensitive to foods, I may try another type? Or maybe a strict exclusion diet....? I am a bit confused, and obviously a bit down.
I hope your work is ok xxx
 

soupdragon69

ele mental leprechaun
Hey Katie,

Sounds like you have tried everything as you say... Another type might well work. On the exclusion front have a look at LOFFLEX - google it. There are a couple of threads that mention it too in the food section.

Basically it is designed to be low fat low fibre and exclusion so the foods that are least likely to upet and there is a list then that you can reintroduce to rule out individually as you go along.

Hope this helps a bit. Let us know how you get on Monday. Keep posting and we will always try to help where we can.

Work is going ok - not too busy hence have some time to post at the mo! ;-) I finish at 2am so am counting the time down lol

Thinking of you. xx
 
I made a decision yesterday evening, (a very reluctant one), however after some terrible pain, and more dramatic events I decided that I obviously cannot tolerate modulen... :-(

I made a list of reasons:

* It's been 2 weeks
* I have felt ill the whole time
* I cannot get past 500 cals (and have lost 10 pounds)
* I have added benefibre as told, which has had no effect
* I have sipped it very very very slowly
* My symptoms have been worse now than before!!

I am going to eat plain foods today, and speak to my nurse tomorrow, and I will ask her about LOFFLEX! I now need to get rid of the millions of modulen cans I have in my kitchen!

Thank you again.... I will let you know how things pan out. I hope you are feeling well today,
Katiepede :) xxx
 

Astra

Moderator
Hi Katiepede

I can't help you with Modulen, never tried it
Wanted you to know that if you need to to talk about your loss, I'm here, I lost my mum 2 weeks ago after a very very long illness, and I'm so grateful that she's finally at peace and with my Dad who died 10 years ago.
big hug your way
Joan xxx
 
Hi Katiepede

So sorry to hear about your troubles. I am extremely familiar with Modulen and it has been a miracle worker for me.

I too at first was convinced that it was making me worse and the flavour was just making me gag.

I find that the trick is to make sure you have it extremely cold. Make sure you are blending it and/or sieving it. When the lumps are gone its much better.

Finally, i can only drink it when i add KRUSHA which is a milkshake mix. It used to be the case that it was full of sugar but they have made a low sugar version which is just as good. You can get different flavours so just try one you like. I was worried that the KRUSHA would react with my stomach but it seemed ok.

I know its difficult but if you can get used to it then you should see some benefits.

I was suffering with a massive flare up about two years ago and it was looking like surgery was needed. Modulen was the last option and it brought me back from the brink. (This sounds like i work for Nestle lol)

Let me know how you get on.

Good luck
 
Maybe you could ask to be prescribed the official Nestle Flavour Pots.
I hated Modulen at first and couldn't tolerate the taste.
But then I was given a Lemon-Lime flavour pot. Oh... my... goodness... me! It was incredible. It completely removed the original Modulen flavour and made it drinkable.
The ones I've now got are chocolate and banana flavours. The chocolate one is a little bland, but still has a nice taste to it. The banana one... I am an addict.
I'm not on a Modulen exclusive diet though.
Maybe discussing things that annoy you about Modulen would help?
For me, it's having to boil the water and leave it to cool.
 
hi guys.ive just been put on modulen as its kinda my last resort to,1st few days was ok then things have kinda went downhill a wee tad.having the runs abit more frequent and aint sure if its not working or just how it starts out.i have all the nestle flavour pots plus the cruhsa milkshake flavours.the dietition said it generaly takes about week to 2weeks for benefits to show so im gona stick with it,im on 2000ml a day and take it no probs,even use the coffee one in the morn so i think im having a nice milky coffee every morn.anyhow i hope things work out for you katiepede keep your chin up.@ thewelshboyo thats interesting about the lemon&lime flavour as i was reluctant to try it as i wouldnt have thot it would taste so nice but just might give it a bash,im doing it at 4 500ml instead of the 8 250ml.also my dietition said she didnt think the runs would be affected by the way i take it,iwas just downing the glass in a few mins,also tried to space it out and done the same thing so i tink it might just be my body getting used to no solid food after so long,hopefully things will get better and i'll start to see some improvement in my BM.if not at least i tried it and dont sit thinking what if!anyhoo time for a pint of milkshake lol lunchtime!!
 
How are you getting on?

I am about to start Modulen today. Waiting for the water to cool atm.

Dreading it as worried it will upset the balance to begin with and make me worse. My ibd nurse told me I will feel pretty grotty for the first week or so and then should notice a difference. I have already called my dietician for some moral support today - I do feel like an idiot for being so worked up about it.

Also really worried about struggling with not eating.... I have been without food or drink for 5 days before when in hospital and too ill to even consider consuming anything, obviously I was on IV fluids. To be honest right now I feel safer eating nothing than starting this...

Yuck! I just hope I feel so much better that it then becomes the motivation.

Christina x
 
well thats me on day 10 on the modulen diet(strictly nothing else but water)and i seem to be going backwards,i seem to be going to the toilet more recently and its so loose and watery,i spoke to dietition and GI nurse who both said i should be seeing some kind of solid BM which i havnt since day 1,i dont want to be defeatist but im begining to think that im goin one step forward 3 backwards.got meeting with dietition tommorow so need to see if its worthwhile continueing.i wasnt even this bad when i was on fatty solid food.anyhoo enough of me moanin and groanin,hope every1 is doing ok..
 
Oh no Hainman that doesn't sound good. Hope the dietician has some good advice for you (hugs)

As for me, I am really finding it hard to drink, I just cant tolerate the taste of it and believe me I have tried every flavour. Have resorted to coffee and chocolate to try and make it like a mocha drink but that underlying taste just makes me feel so sick. I am drinking far less of it than I should be so my energy levels are way low. Only having very diluted squash and water alongside it.

Hope I start to get used to the taste so it becomes bearable otehrwise I can see that I won't be able to continue for long :(
 
thanks christina,im finished with it now,made the decision this morn to bin it.i had 2 slice of toast and a cup of tea(which i never drink)and im far far better than i had been on the drinks.i never struggled with the taste but i know what you mean about the after taste,it left a horrible coating in yer mouth that no matter how much water you drank it took for ever to leave.will speak to the dietition this arvo and see where i go from here.might ask her about this lofflex diet i see ppl talking about,hope you manage better than me christina and it works for you,x
 
Glad you are feeling better today Hainman :) and tea and toast sounds SO good! I hope they manage to find something else for you that works. Well done for giving it a good try tho x Isn't it a pain that there is no set plan/rules when it comes to crohns!! Why do we all have to be so bloody individual!! LOL!!

My dietician just called me and suggested I try covering the glass with clingfilm so i can't smell it and pierce the film with a straw so it hits less of my taste buds.... will give it a whirl...
 
i know.crohns is a pain in the ass lol.its worth a shot eh.im waiting on info fae the dietition about the lofflex diet so will give that a bash and hope to hear fae the hosp about my humira,been waiting for ever argh.so to mention my eating to you christina.ive been of the modulen 2 days and feeling a hundred times better already.but hopefuly it works for you pal.ive fingers crossed for you :) so its back to the rice or fish and rice for me.anniversary yesterday aswell and couldnt even go out so go make up for it tomorrow,ciao peeps
 
Hi Hainman,
I am sorry that you felt so ill, however, it is quite nice to know that it wasn't just me who got so ill on Modulen (as everybody else kept saying how wonderful it is).... I managed to lose 10 pounds in 2 weeks, had constant (and dramatic) runs and I was barely sipping any of it....
I am going to try elemental next week, however I do fear that I am going to get just as ill..... eeek!
 
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