Modulen IBD

by SANDRA
(LLANELLI)

Hello my little girl who is six years old has been on modulen IBD for 3 years and it really does help.Sophie had been ill since the age of 3 yrs. We havent had a proper diagnoses because she have had colonoscopys but they have faied to get into the terminal ileum where the bowel is abnornal. Sophie went into hospital 3 weeks ago and they failed to diagnose her again. since being on the modulen sophie goes longer from having a fare up. we stop food when sophie is really ill and up the modulen and she gets better quicker. Have you got to stop food too?

let me know sandra x x

Comments for Modulen IBD

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I have a 15 year old son whos just found out he has crohns disease
by: Roz

Hi ..my 15 year old son had been ill over a year ..he has been told he has crohns disease .he is on the modulen milk drink for 8 weeks ..we or 2 weeks in and hes upset and wants foods ..it would be nice to hear from people going the the same ..i feel so guilty eating when he carnt and i try and eat when hes not around ...i dont know how he will do this for 8 weeks ..roz

Crohn's
by: Marcus Govender

Hi, I was diagnosed with Crohn's when I was 21 (1995), had my small intestine removed due to a blocked. I was on salazopyrin for 7 years. the disease was under remission till it returned 18mnts ago, this time it caused an enterocutaneous fistula. I've been on Modulen for the past year, together with a diet of rice, mashed potatoes, green beans, carrot & grilled chicken, things have been contained. Its not pleasant but I'm managing. The surgeon says that any operation will be the last resort due to nature of the problem and to continue with module & the diet as a conservative approach.

crohns and modulen (ibd)
by: sean

I have just recently been diagnosed with Crohns and have been put on a modulen only diet for the next 2 months, I have to take 2L per day of Modulen, and am finding it very hard not to eat. Any advice?

Crohns
by: Anonymous

I am 12 years old and i was diagnosed last Febuary and i done the 8 week modulon diet and it really helped me a lot but just a year later i am having another flare up and im on it again.I'm 2 weeks in already and if u put your mind to it,it gets easier. The other night i was even sitting in mcdonalds with my freinds and i wasn't bothered at all!

crohns 1week since diagnosis
by: bex

my son was diagnosed 2 days before his 16th, after 3 years of drs telling me he was constipated, he is now on day 5 of modulen and is so hungry hes in more pain than ever before.is there light at the end of the tunnel cuz i want my son back, not this upset angry drained lifeless boy who is normally so strong, to see him like this is devastating

Tough but worth it!
by: Ged Scott

I have used modulen IBD for many years on and off when I feel my Crohn's is flaring.. to nip it in the bud.
15 years ago, I initially had this for 6 months with nothing but clear soup and sugar free jelly. It drove me crazy to be honest, but it did put my Crohn's back into full remission, and I was diagnosed with a particularly agressive type of Crohn's.
I am now symptom free and have been for 10 years, and I attribute this to correct use and management of modulen. It's tough..but it works!

Tips- it is survivable
by: Anonymous

I finished my 6 week course today. I was so sick of modulen at first. It made me feel ill.but strawberry nesquik helped taste and after a few weeks it didn't make me feel ill. I now can drink lots (3.5L a day) as I get hungry. I am a gymnast so u can do sport. But go back in slowly
It will be a couple of months before I train properly again. I do wonder though, can I have werther's original sugar free? They r boiled sweets but condition milk so r not classic boiled sweets.thx hope this helped.

Crohns- starting modulen
by: Anonymous

I got diagnosed with crohns just over a week ago and have started a Modulen Diet for 6 weeks. I am taking the modulen 5 times a day, I have been told I am aloud 7-up, plain water, clear soup, boiled sweets, jelly and fruit ice poles. I am struggling with the modulen slightly but have only been on it for 5 days. Any advice?

Starting Modulen
by: Anonymous

Im 15 years old and was diagnosed with Crohn's disease just yesterday. I was told to start a Modulen diet straight after diagnosis. It is now my first day, and already hating the taste but i'll deal with it if it will make me better. 8 weeks to go without having anything to eat will be hard. The thought of food will always be there.

Modulen for a year
by: Wigmister

I'm 14 and I decided (not my doctors or parents) that I will do modulen and no food for a year
I'm only 3 months in and I'm getting into remission, so if you manage to do it for a long period
It gets a lot better

Modulin NG tube and sport
by: Andrea

Hi I have a newly diagnosed 15yr old daughter who plays elite level cricket.
Wondering if anyone else has a sporting child and how they cope with training and Crohns .
Tomorrow she starts on 8 weeks of Modulem and we have already asked for long term NG tube .
Any advice that anyone has would be fab !
Thanks

Modulen
by: Anonymous

I have just started taking modulen yeaterday and found myself struggling to drink the full amount I'm supposed to. I'm feeling very emotional at the moment too which I assume is the steroids along with the fact I can't eat anything else at all for at least te next 6 weeks. I just keep telling myself that it will all be worth it when my symptoms of my chrons go. The drinks are not very nice but if it means me getting better for my family then I will grin and bare it.I know there are people worse off than me by far but I feel really down at the moment but hopefully after these 6-9 weeks I will see and feel the difference and it will all be worth while.

4 year old
by: Anonymous

My son who is due to start on modulan in 10 days, I am unable to find any other child of his age who has gone thru this treatment , and wonder if there is any other parents with a child this young with Crohns, he was diagnosed at 14 months with this condition but has yet been unable to control it.

no luck
by: Anonymous

my 17 year old son has recently been diagnosed with crohns disease and has been on a modulen diet for 6 weeks along with azathioprine 150 mg. he was still complaining of tummy pain and we have since discovered that it wasnt a side effect from the aza but that his crohns is still the cause. he is unfortunatly one of the apparent few whom modulen hasnt worked for so now is awaiting surgery as im not happy with the long term ramifications of steroid usage.Hope you have lots of success with the modulen

no luck
by: Anonymous

my 17 year old son has recently been diagnosed with crohns disease and has been on a modulen diet for 6 weeks along with azathioprine 150 mg. he was still complaining of tummy pain and we have since discovered that it wasnt a side effect from the aza but that his crohns is still the cause. he is unfortunatly one of the apparent few whom modulen hasnt worked for so now is awaiting surgery as im not happy with the long term ramifications of steroid usage.Hope you have lots of success with the modulen

15 years old boy on Modulen
by: Anonymous

Hey! I'm 15 years old and have been on Modulen for a little more than 3 weeks out of 8. At first I found it hard, especially the food craving, but I got used to it as I felt better. After only three days, I did not feel pain anymore and I had a lot more energy. My anemia is now way better and I am now eating over 3500 calories a day, wich is enormous! :P Anyway, I wish you guys good luck and I hope you will stick to it as long as possible cause it really helps!

advice for taking modulen
by: Anonymous

I was diagnosed in march 2013 Easter week. So there was not any chocolate for me!!I have been put on the modulen ibd diet which some of you are familiar with. I understand some find it hard not to eat, I have the same problem. I am on my second course of it and I am 1 week in, the food craving does go away, but only if you drink a lot of it. for those who find it hard to stomach it take 250 ml an hour and as you get used to it you will feel more hungry. as you do that you bump up amount an hour. it worked for me. I found that walking around your house slowly works it off and makes you able to drink more. do not nap. if you do you lose precious modulen drinking time. I did that and trust you will be disappointed. I hope this is supporting you all, if not talk to your friends or your sibling or parents. or even just think, once you have enough energy you can go into town with mates, run riot and be mischievous. it helps to watch a funny film or funny clips on the computer because it is best to keep in good spirits. and finally be POSITIVE!!!!!
I hoped this helped you because it helped me. :)

hungry
by: Anonymous

My 14 year old son has been on Modulen for a week now, with no food just plain water. He says he feels hungry all the time and still has an upset stomach. He has another 5-7 weeks of this diet. One reviewer mentioned sucking a lolly after a drink of it, is this allowed? He is worried about not being able to eat anything at xmas. It took him 4months to be diagnosed.

Recipes
by: Anonymous

I am 11 and have just been diagnosed. Apparently you can turn modulen into Ice cream. Do you just freeze it or do you have to change the recipe?

Modulen
by: Anonymous

I was diagnosed with Crohns when I was 5. I am 12 now, and Im going being fed by nasal gastric tube with modulen. This is my 3rd week now and im getting even more used to it, even though its still hard not eating. Its made me feel better, but i still have the diarrhea. Good luck everyone!

My experience
by: Anonymous

Hi, I am 12 years old and have been diagnosed with Crohns! I keep getting flare ups so my doctor put me on Modulen to see if it works. I have been on it for 5 days now and am finding it a bit hard not eating anything. When I am at school I see people around me with amazing food and it is really hard to not get tempted. The first day was quite horrible as I did not like the taste at all. The Nesquick flavours really help. I am starting to get use to it now. Sucking a Lollie after you drink the Modulen is a great idea! I have not got any tummy aches so far! good luck to new starters!

My experience
by: Anonymous

Hi, I am 12 years old and have been diagnosed with Crohns! I keep getting flare ups so my doctor put me on Modulen to see if it works. I have been on it for 5 days now and am finding it a bit hard not eating anything. When I am at school I see people around me with amazing food and it is really hard to not get tempted. The first day was quite horrible as I did not like the taste at all. The Nesquick flavours really help. I am starting to get use to it now. Sucking a Lollie after you drink the Modulen is a great idea! I have not got any tummy aches so far! good luck to new starters!

Teenager on modulen
by: Anonymous

My daughter was diagnosed at the end of July, just before her 14th birthday. She is now approaching the end of a 6 week programme of modulen. Her blood tests show it has worked at reducing inflammation, she has more energy and has gained more than 3 kilos in weight. It hasn't been easy, she doesn't like milkshake but has persevered with it as she wants to get better, at the moment we are having it hot with choc Nesquik in to flavour. Her dietician allowed her one day off on her birthday to eat cake and chips so that helped a bit! The other thing she has found useful is keeping a journal of her feelings and writing down all her cravings, when she is eating again we will go through them one by one! Good luck to anyone starting modulen and please stick with it, its so worth it.

Modulen IBD
by: Anonymous

Modulen has worked for my son. My son has been unwell since the age of two and was finally diagnosed with Crohn's when he was 5.His specialist and dietician put him on Modulen IBD for 10 weeks, no food.(no chemical intervention)The first hurdle was to get past the smell and actually taste it and then drink two litres of it per day without eating solid food for 10 weeks. He did and his health now is amazing. He is 9 now and still drinks 500ml to 750ml per day of Modulen, at his request. He knows that it makes him feel so much better. At 5 he was anaemic, couldn't stand or walk very far, now he runs everywhere, plays hockey and basketball. He is also in 'remission'. Considering he has not taken anything else to control his Crohn's symptoms, I would say it has worked for him. All the best.

i just cant.
by: ksg

I'm 22 and was diagnosed at 15, I have crohn's higher up in my stomach and so eating makes me sick but i never really have the other symptoms. just been diagnosed as having a flare up and given modulen but i cannot drink it. had myself a little taste session this morning but even by adding nesquik, food flavourings or stuff i can't stomach it. it makes me want to throw up. I'm struggling as I need to drink it but in general I dont like milk or milkshakes or ice cream or anything really that has that texture, so its really hard for me. :(
In reply to the woman in canada.. I'm in the UK so we can get it over here still.

me
by: Anonymous

i have crohn's and am on modulen for 8 weeks. i am on day 6 and am finding it very hard to not eat. i have been to 3 parties and not eaten anything. does the temptation of wanting to eat go away or will it be like this for ages?

Module and tea
by: Roger

works fine for me
i have been on modulen for 3 days sof ar so good pain free for now

Modulen
by: Anonymous

Hi, I'm a 42 year old and I too have recently been diagnosed with Crohn's and Esophagitis.

This is only my 3rd day of taking Modulen. I find it much easier to drink if I add flavour. I alternate between strawberry and banana 'Nestle Quick' and sometimes have it with Milo.

I will be on Modulen for a couple of weeks to see if there is any improvement.

Next week I will also be starting on Humira injection (to be injected once every 2 weeks) which I was told will hopefully help both the Crohn's and the Ankylosing Spondylitis (AS)

Does anyone have both AS and Crohn's? What medication are you on? is it helping?

Modulen
by: Anonymous

Hi, I'm a 42 year old and I too have recently been diagnosed with Crohn's and Esophagitis.

This is only my 3rd day of taking Modulen. I find it much easier to drink if I add flavour. I alternate between strawberry and banana 'Nestle Quick' and sometimes have it with Milo.

I will be on Modulen for a couple of weeks to see if there is any improvement.

Next week I will also be starting on Humira injection (to be injected once every 2 weeks) which I was told will hopefully help both the Crohn's and the Ankylosing Spondylitis (AS)

Does anyone have both AS and Crohn's? What medication are you on? is it helping?

Modulen IBD
by: Anonymous

Hi I'm 20 yrs old and recently got diagnosed with Crohns disease like my father. I was initially give azathioprine and steroids however after 4 months had no improvement. I was then given a 6 week course of dissoluble steroids where I have seen a massive improvement in my health and able to eat foods which I have struggled with for a long time. however at the same time I was also suggested to go onto the Modulen IBD diet, which I have unsuccessfully completed as it made me feel very sick and therefore found myself avoiding it and becoming very hungry. Has anyone else failed the diet because of similar problems?

9YR on modulen
by: Anonymous

my daughter is 9, and just been dignoised she is on it for 10 wks. we are now two weeks in. She missed out on christmas and all the treats that go with a holidays as we went away over the new year. she has been so good about it but i feel so bad for her, she geting sick on not being able to eat but she does have a lot more energy though it hasnt realy stoped the diarehea, she has also just started imune supresents, Im realy praying that this will work for her.

Modulen diet
by: Proud mum bongo

Hi, my son aged 14 was diagnosed fully in oct 2010! He was but on a complete diet of modulen and a cocktail of medication including steroids. He hated the taste as it is, but when mixed with nesquik he could handle it. I found it so hard to cook meals for my other son and husband and felt so guilty eating myself, the worst part was it included his 15th birthday which was so hard for him! The steroids caused him bad depression some days and had very upset times in school but he soldier'd on. It took him about 3 weeks to feel any type of benefits but with chronic crohns it had to take it's time, we then had 2 weeks of pain and syptom free, BUT at the end of wk 5 he started having abdominal pains within minutes of drinking modulen? After examinations and blood tests to rule out any other problems it became apparent that it was the modulen causing the horrendous pain! So he is now being reintroduced to food much to the relief of us all. He is still having about 500ml of modulen along with a strict diet and is handling it ok at the moment? It is early days but fingers crossed we will get there.

13 years just been diagnosed with crohns
by: Anonymous

Hi
My son age 13 years has just been diagnosed with crohns, he has just came out of hospital today. He is on a Modulen diet for 8 weeks, he couldn't stomach the taste so they have put a nasal gastric tube in. I have to feed it into him every 2 hours, but he has no stress of taking it now. I hope this works for him, i wondered how long he will be pain free? To top it off he has to take this till the new year so what do we do for xmas?? We have 2 other sons who need normality but feel so guilty when feeding them..I even feel guitly when eating even if he isn't in the room.. They want him to start sipping some in a day to help with ulcers in his mouth... How do i convince him to drink it even with crusha he hated it..
Thanks
Clare

modulen
by: lou

iv been on modulen for a week and finding it very hard. i have also had to come to terms with the fact i have crohns. i am very confused and upset but am finding modulen is great and am almost sympton free x

MODULEN
by: Anonymous

My son was diagnosed with Crohns last summer and had to go onto the Modulen only diet for 8 weeks before re introducing foods - He is only 14 and managed to do it but he also had to go onto steroids at the end of the 8 week but that sorted everything out.
He now takes Azathropine and one drink of Modulen daily and has been very well - it does appear to work but our Dietiton let him put the nesquick milk shake powder in to flavour it as he also took a big dis like to the ones they give you.

He now just adds the Chocolate nesquick and has the drink warm before going to bed.

Modulen only diet was so hard for him but he really did start to feel a lot better within a week and that was enough to keep him on track with him - so try and stick with the Modulen it really does help


crohns 11 years old
by: john serunjogi

im 11 years old i was diagnosed in march 2010 and i had to stop food for a while about 6 weeks but i was taking steroids too

Modulen
by: Lul

Ok didn't last more than two day's on the Modulen,
stomach cramps a diarrhea.
Had two cartons of 028 extra at the start that only gave me diarrhea so going to try those again.
Will the diarrhea stop as I get used to taking it.
Lul

Modulen IBD
by: Alex

Hi everyone,

Good to hear it is not just me who is taking Modulen. I am 23 year old male from England. I have had Crohn's disease since I was 18. At first I went on a diet of just Elemental 028. These are horrible! Much much worse than Modulen. After 8 weeks of these drinks I was fine for a few years. Then I got shingles and this kicked it off again. I have been on a course of steroids and infliximab but this hasn't helped. (It helps around 65% of Crohn's disease sufferers.) I started a Modulen diet on the 1st July and have no food since. The doc has said I'm not alllowed anything but water with it until the end of August at the least. I'm getting married in August so it means a Modulen wedding breakfast! Its hard but I know that the alternative is surgery, which will be alot worse.

If you are taking Modulen and finding it really hard then stick with it. I know its rubbish, and some of the flavourings are horrible (lemon-lime being the worse-i think) but it will really make you better.

Modulen IBD
by: Lul

Just started this diet 22nd July 2010 had Crohns for over 30yrs. Many years ago I was on a similar diet called Vivonex, took it for approx 3 years.
I seem to remember once I had it under control I could drink tea, coffee, wine etc with the diet without having any ill effect's, has anyone tried drinking tea etc with Modulen.
Thanks Lul

My experience with Modulen.
by: Jodie

I'm 18, and have had Crohn's since I was 14. I've been on Modulen 2 times for periods of 8 weeks. Im on it for the third and its not easy, but Modulen really does work. Its hard not to eat food and the temptation is horrible, but if u stick to it, it will improve your life hugely. Its the only thing that really works for me; I tried steriods but i lost the weight immediately.

How does everyone else cope with telling people about Crohns and Modulen? xxx

A book to get...a must.
by: Sarah

I have recently been diagnosed with ulcerative colitis with some terrible flare ups and feeling miserable. My aunt suggested contacting a friend of hers about a specific carbohydrate diet. He was diagnosed with an IBD 13 years ago and followed a diet and is now off all medication and if he has a flare up he takes Modulen for 4 days, this sorts it out. The books to get are 'Breaking the Vicious Cycle' by a lady called Elaine Gottsbere (not sure about the last part of her surname sorry. It is an amazing book and is based on personal experience with her daughter it explains the resons why there are flare ups and what food to eat and what to stay away from, the main thing seems to be sugar (for me) and carbohydrates where the starch is converted into sugar. Get it, it will really help.

living on modulen
by: Anonymous

I was on Modulen for 9 months,because of an obstruction in the bowel,could not tolerate food at all.had to go on modulen as a liquid diet while waiting for operation.It was hard at first not being allowed any food ,but soon got used to it,and was quite happy to carry on as i felt a lot better .

Modulen
by: Anonymous

Is it possible to get modulen without prescription?

Modulen Diet
by: Colin - UK

Hi

I am a 24 year male and I have had Crohns for 6 years and two operations later, trials of infliximab and adalimumub as well as countless spells on steroids and azaithioprine, my specialist has put me on the modulen diet.

I was wondering what everyones experience is of this? I am now on day 5 without food and any comments on whether it has worked for you or not would be gratefully received. All the research I have done seems to suggest it is very successful

Look forward to hearing any views

where to get Modulen
by: Diana

I can't get Modulen in Canada and my pharmacist said it was discontinued in the U.S. I think he must be wrong since you are using it. Where do you get it and do you need a perscription . Thanks Diana.

where can you get Modulen
by: Anonymous

My daughter has crohns and I tried to get Modulen in Canada, but they do not have it here. I asked my pharmacist to check in the U.S. because I would go across the boarder to get it. He said it has been discontinued by Nestle. Since you are getting it, he must be mistaken. Where are you getting it and do you need a perscription. Thanks Diana

modulen
by: Anonymous

My daughter was 4 and a half years old when she went on modulen for 3 months with nothing else to eat or drink.It was terrible as it was easter and wasnt allowed easter eggs. She realized how much better she got on the modulen so began to accept it.She is six years now and is still on modulen.It really does work.She has 1 in the morning and 1 in the night. we find when stopping it completely she gets a flare up. we still havent had a proper diagnosis yet as they have failed to get into the iliuem to get biopsies. what about you have you had a diagnoses? and how long have you been ill.Goodluck X Xdelux

eating during modulen?
by: Anonymous

I am on modulen for 6 weeks and i have been told i cannot eat or drink anything else (except water). this means i will be taking it over christmas and it is really hard trying not to eat christmas dinner and all the chocolate i get. but i know the only way i can get better is staying on the modulen for 6 weeks with nothing else to eat.

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