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Modulen Diet for Crohns

I know he must of felt like he had no other choice to make such a big decision.I have been on fortisip for two weeks now and I am considering doing what thus guy has done but eating a meal once a month or on special occasions. I have done elemental,semi elemental and polymeric diets before but never for any longer then three months. It would make you wonder though do a lot of people with Crohns choose this as a lifestyle.
 
So I usually suffer from low blood pressure but noticing now im on the modulen only im getting bad head rushes everytime i sit up or stand up and headaches and fatigue... could this be my blood pressure if so how can I raise it because im struggling even focusing with these headrushes
 
Hi
I am the same and always suffered from low blood pressure and headrushes. During one of my stays in hospital when they were monitoring my blood pressure my levels became normal when I was hydrated. The nurse told me that dehydration caused your blood pressure to drop. Could you be dehydrated?
 
Hi
I am the same and always suffered from low blood pressure and headrushes. During one of my stays in hospital when they were monitoring my blood pressure my levels became normal when I was hydrated. The nurse told me that dehydration caused your blood pressure to drop. Could you be dehydrated?
I thought that but I have to mix my mofulen with 210ml of water and I drink 7 of them a day :/
Ive been lying in bed all afternoon and dont like getting up or even slightly sitting up unless my boyfriend is nearby :(
 
Jesus that sounds very bad I wonder is it a combination of die off and dehydration. I drink six or seven fortisips which are two hundred mls but also drink a lot of boiled water or black tea. My doctor actually told me to make sure I was drinking plenty.
 
I've been drinking alot of bottled water and weak squash along with it too so that is the only reason im concerned... have debating calling out of hours just for abit of advice?!?!
 
If you are that bad maybe you should but maybe it is bacteria die off which is making you worse before you get better. Just to eliminate anything sinister call the doc though. Sorry I'm no more help. Are you passing urine?
 
Apparently the bacteria in your gut dying off from being starved can cause something called a herxiemer reaction which for the first two weeks of these diets can cause diarrhoea,vomiting and all kind of different symptoms to worsen. You can pretty much blame everything on die off although sometimes I think it's the Crohns more then anything else.
 
Hi Kimbo Hope you are feeling better. I would check in with your dietician or specialist nurses if you are worried. I found for the first few days the Modulen did go through me a bit, but it settled down about day 9 or 10. But even then I did feel okay and didn't have any blood pressure problems. The Modulen itself doesn't really come with any side effects it is just pre-digested food really. But it can pull water into the gut and make it go through you, a bit liquid in, liquid out and you need to stay hydrated. I would just check carefully that you are making it up right - which should be 210mls and 6 scoops or as I do 420 mls and 12 scoops. Did they give you one of the specials shakers to make it in with the measurements on the side? Anyway, hope you are getting there. I would so want it to work for you as it has been so good for me. Fingers crossed. Liz
 
Hi Kimbo Hope you are feeling better. I would check in with your dietician or specialist nurses if you are worried. I found for the first few days the Modulen did go through me a bit, but it settled down about day 9 or 10. But even then I did feel okay and didn't have any blood pressure problems. The Modulen itself doesn't really come with any side effects it is just pre-digested food really. But it can pull water into the gut and make it go through you, a bit liquid in, liquid out and you need to stay hydrated. I would just check carefully that you are making it up right - which should be 210mls and 6 scoops or as I do 420 mls and 12 scoops. Did they give you one of the specials shakers to make it in with the measurements on the side? Anyway, hope you are getting there. I would so want it to work for you as it has been so good for me. Fingers crossed. Liz
Hi Liz,
Currently still curled up in bed, my body cant decide if Im freezing cold or sweating and over heating... theres a pain in my sides and I have only just been able to make my fist modulen of the day and even that I really struggled!!
 
I really think you need to get the medics involved. You shouldn't struggle on your own. Do you not have a Specialist IBD Nurse at your hospital you can contact? If not, give your GP a ring. If you have a thermometer, check your temperature and make sure you are not running a fever. It might be that you have picked up a bug or something, and I do think it may be time to get help. There is nothing wrong with getting your Doctors or Hospital involved and I am sure they would want you to. Hope things improve - I am a bit worried about you. I really do sympathise, I know it's hard sometimes to know what to do for the best, but really - get help. xx
 
I also have been hot and cold at night. I'm on Elemental 028Extra and have 1750mls per day, mostly through my PEG. I sip the rest, but I do suffer if I sip to quick as I get a thumping headache. I'm mostly liquid in, liquid out, but also suffer the fatigue and nausea. I also have low blood pressure most of the time. My dietician told me not to drink much in the way of fluid as that plus the liquid food could be too much for me. I also have a couple of clear mints and some potato and salmon when I can cope with it.
Good luck, Kimbo
 
I really think you need to get the medics involved. You shouldn't struggle on your own. Do you not have a Specialist IBD Nurse at your hospital you can contact? If not, give your GP a ring. If you have a thermometer, check your temperature and make sure you are not running a fever. It might be that you have picked up a bug or something, and I do think it may be time to get help. There is nothing wrong with getting your Doctors or Hospital involved and I am sure they would want you to. Hope things improve - I am a bit worried about you. I really do sympathise, I know it's hard sometimes to know what to do for the best, but really - get help. xx
Hi Liz,
Rang my GP after an awful night of hallucinating because i was over heating and the pain in my right flank side became so bad I couldnt move... he came out to do a house visit and I am now sat down the hospital waiting to be seen... :(
 
I am so pleased you got help. Really hope everything works out. It might not even be your Crohn's, could be you've picked up a virus or something. Either way I wish you lots of luck and will be thinking about you. Let us know how you get on once you are able to. Lots of love. xx
 
I am so pleased you got help. Really hope everything works out. It might not even be your Crohn's, could be you've picked up a virus or something. Either way I wish you lots of luck and will be thinking about you. Let us know how you get on once you are able to. Lots of love. xx
Hiya thank you all for the support its so comforting right now!
So the update is they think I could have an acute appendicitis but waiting for the surgical team to confirm it along with a CT Scan :'(
Xx
 
Hi, thanks for the update. I'm not surprised, it didn't seem to me as though it was your Crohn's. We have to be careful as there is a tendency to think everything is Crohn's related and of course, it's not. I am so relieved that you are in hospital. Whatever it now is, you are in the right place and you will get through it - we all do. I hope you have lots of friends and family around you. Wishing you all the best. Liz x
 
Hi, thanks for the update. I'm not surprised, it didn't seem to me as though it was your Crohn's. We have to be careful as there is a tendency to think everything is Crohn's related and of course, it's not. I am so relieved that you are in hospital. Whatever it now is, you are in the right place and you will get through it - we all do. I hope you have lots of friends and family around you. Wishing you all the best. Liz x
Turns out now they dont think its an appendicitis they now think it is my crohns something to do with my small bowel :/
So confused! I have a CT dcan at 2:20 hopefully that can give me answers :'(
In for another night again I think too xx
 
Reading about EEN confuses / worries me with my understanding of the microbiome's role in Crohn's.

Aren't they typically loaded with glucose / simple sugars? These are known to feed / promote growth of invasive bacterias related to Crohn's, and if all the nutrition is absorbed in the small bowel you're starving the critical bacteria in the large intestines.

Has anyone actually achieved remission on EN then maintained it transitioning to a normal whole foods diet? My fear would be that you starve the bacteria in the gut responsible for production of SCFAs and lose the barrier that protects against food allergies / intolerance, making going back to whole foods difficult because you'd need to rebuild you gut bacteria all over. This can take years.
 
Reading about EEN confuses / worries me with my understanding of the microbiome's role in Crohn's.

Aren't they typically loaded with glucose / simple sugars? These are known to feed / promote growth of invasive bacterias related to Crohn's, and if all the nutrition is absorbed in the small bowel you're starving the critical bacteria in the large intestines.

Has anyone actually achieved remission on EN then maintained it transitioning to a normal whole foods diet? My fear would be that you starve the bacteria in the gut responsible for production of SCFAs and lose the barrier that protects against food allergies / intolerance, making going back to whole foods difficult because you'd need to rebuild you gut bacteria all over. This can take years.
Ive been on modulen for 1 week and now having problems with my small bowel... could be a coincidence i dont know...
 
Ive been on modulen for 1 week and now having problems with my small bowel... could be a coincidence i dont know...
If you're having pain ask about the pancreas. The pancreas is involved in sugar metabolism.

When you consume sugar your pancreas and liver both activate to produce bile and enzymes. Often times sugars produce higher amounts of bile than complex carbohydrates.

This often leads to problems in Crohn's patients like diarrhea, gas and bloating because the bile is conjugated from primary bile acids into secondary bile acids by exposure to taurine and glycine.

It's then supposed to be re-absorbed in the duodenum.

Two problems in that for Crohn's patients. One is that they often insufficiently conjugate with Taurine, so it doesn't convert to secondary bile acids which are both more effective and more easily re-absorbed in the duodenum.

Second is Crohn's manifests in the duodenum further impeding re absorption.

If a bile duct becomes inflamed or blocked this leads to pancreatitis. When you consume a food that triggers the Pancreas to produce enzymes, the enzymes have nowhere to go and stay in the pancreas causing pain.
 
Only on the second day of my Modulen diet but I'm already feeling great!;D
The dietitian only gave 2 tins and we have already ran out so I have to have Complan, which tastes like oats! :(

I am,however, finding it hard to suppress the natural instinct of 'ooh i'll just have a packet of crisps' and then remember I can't have anything! :( I'm on the diet for 6 weeks and have already started having cravings for food. Does anyone have any methods of coping? It'll be difficult going back to school as none of my friends yet know about my diet and I feel embarrassed to tell them. :I
 

my little penguin

Moderator
Staff member
Ds did the EEN diet at age 7 and later at 11
Smell plates help some folks
When some else cooks you smell it
Crushed ice with pure sugar on top help
The urge to chew
Some allow gum or lollipops ( so ask )
 
I had mint boiled sweets, so no fruit in them or flavourings other than mint. So now you have a choice of boring things to eat what with MLP's suggestion.

Don't worry about school. They won't stop liking you just because you have a disease. It's not contagious and I suspect many of them will be on one diet or another during their lives. Just tell them that and they'll probably agree.

Good luck with it, Cherry. Oh, and a big welcome from all of us on this site, i'm sure you'll find it useful. PS i'm on Elemental 028Extra and it goes through a tube in my abdomen through to my stomach directly.
 
Thanks my little penguin! Those ideas will really help! I am allowed full sugar gum and lollies so I'll stock up on those! Good luck!
:dance: :dance: :dance:

Hi Spooky, thanks for the support! I'm allowed clear boiled sweets with mint or fruit flavours and lollies as well! Thanks for the advice with friends - you're definitely right! Good luck for the future! Hope everything goes well for you!

:pika: :pika:
 

my little penguin

Moderator
Staff member
If your allowed lollipops you can crush them and put them in a cotton candy maker
And make cotton candy with them or pure sugar for that matter
You can also make pure sugar "cookies"
Sugar( even crushed lollipops ) plus water boil and crystallize to pour in silicon molds
Forms cool shapes
 
If your allowed lollipops you can crush them and put them in a cotton candy maker
And make cotton candy with them or pure sugar for that matter
You can also make pure sugar "cookies"
Sugar( even crushed lollipops ) plus water boil and crystallize to pour in silicon molds
Forms cool shapes
Thanks for the advice MLP I will try that! :pika:
 
Hi all - my name is Lauren and I'm a new user to this forum!

I've just come out of a five year remission (I'm now 21), and after a series of unsuccessful steroid treatment, I'm now on Azathioprine and Modulen (to stop the pain in the meantime).

However, because I find it so difficult to stick to the diet, I have opted for a 70/80% Modulen diet, 20/30% lowfibre meals. Is anyone doing this as well? Would anyone recommend any safe foods? Does small amounts of food reduce the effectiveness?
 
Hi all - my name is Lauren and I'm a new user to this forum!

I've just come out of a five year remission (I'm now 21), and after a series of unsuccessful steroid treatment, I'm now on Azathioprine and Modulen (to stop the pain in the meantime).

However, because I find it so difficult to stick to the diet, I have opted for a 70/80% Modulen diet, 20/30% lowfibre meals. Is anyone doing this as well? Would anyone recommend any safe foods? Does small amounts of food reduce the effectiveness?
Hi Lauren

I hate to be a party pooper but as far as I understand, modulen works best with no food, nothing at all other than water and black, decaff tea. That's it. That's certainly how I've used it in the past. Rather than just being a supplement to food it's meant to be the only stuff going into your bowels. Even low fibre meals may have complex fats, protiens and starches which will make your gut work harder to digest.

That said, if you 100% can't stick to no food, it's better to try mixing than not to try. But giving even two days of no food a go will likely surprise you how strong your will power can be.
 
Hi Lauren

I hate to be a party pooper but as far as I understand, modulen works best with no food, nothing at all other than water and black, decaff tea. That's it. That's certainly how I've used it in the past. Rather than just being a supplement to food it's meant to be the only stuff going into your bowels. Even low fibre meals may have complex fats, protiens and starches which will make your gut work harder to digest.

That said, if you 100% can't stick to no food, it's better to try mixing than not to try. But giving even two days of no food a go will likely surprise you how strong your will power can be.
Hi Jackie - thanks for your reply! Yes...I thought as much.

I did 12 weeks, 8 weeks then 4 weeks on Modulen when I went through my first bout of Crohn's disease as a 15/16 year old and the experiences have really scarred me. I successfully completed them then but now, as a student at university, I find it too isolating/too difficult. I'm being treated by Azathioprine, so the Modulen was supposed to tie me over in the meantime and provide some pain relief, rather than my actual treatment.

Who know's. I haven't plucked up the strength yet to commit 100% to the Modulen, but I guess if I'm really not getting any decrease in pain I'll have no other option!

I hate this disease!
 
Modulen is hard when your have a strict timetable in work or uni, where are you meant to get purified water and mix up an appetising shake 6 times a day? Even if you can just do it for breakfast so you can get through a few lectures without having worlds noisiest belly sounds, that might help you.

I found having an opaque bottle helped in social situations, I could just tell people I was having a smoothie for lunch if I didn't want to go into details.
 
Opaque is a brilliant idea, Jodie. I have liquid feed (Elemental 028extra) and also have a tiny bit of potato and bland fish with a tiny bit of homemade sauerkraut for the probiotics. You could try immuprobio as making sauerkraut at uni might be difficult. Have you tried sucking sweets just for the extra taste?
 
Hello everyone! I'm new to this forum and have been officially diagnosed with Crohn's just four days ago. I started EEN treatment two days ago and am on Modulen IBD. I'm starting to have trouble resisting the temptation of eating other food lying around the house and am kind of sick and tried of having to eat the same thing six times a day, everyday. Eight weeks seems like a really long time right now, and I'm not really sure if I can make it. I'd like to ask what are some ways that you have employed to cope with drinking nothing but Modulen IBD for eight weeks, and whether there're any other ways of preparing Modulen IBD apart from adding a little Nesquik for extra flavour.

I'm currently having my school holidays at the moment, but like what Cherry04 had mentioned in a previous post, I also have concerns about what will the reactions of my classmates be and what should I reply if they ask me something like "Why aren't you going down to the canteen for recess?" when school reopens for me in January next year. I'll be sure to follow what BodieJaker described in a previous post, but just wondering, are there any other ways of dealing with this awkward situation? What are some other excuses that I can use?

Thanks for taking the time to read this and any help at all will be greatly appreciated! :)
 
Hi,
My name is Olivia and I am 11 years old I have had crohns from 2015.i have went through two modulen and lots more. The first one was though but I got through it. I made a count down chart and every day after I finished the shakes I would put a sticker on it. So I have a poster with 60 stickers on it. And also I made the modulen tin into a pencil and pens holder by putting coloured paper around it. So u might find the helpful.
Thanks for reading
Olivia
 
Welcome Olivia,
I just had my peg tube changed to a mini button for liquid feed to be put through my abdomen into my stomach via a pump. These mini buttons are really discrete. A lot of us will know how difficult it is to have liquid feed only. You have our sympathy, especially at your age. Difficult when all your friends get to eat normally. So an extra well done on that.

I used to use trimmings from materials and pva glue to put around tins. They can turn out quite snazzy. Haven't had the module tins in years as I have packets of E028extra, a different liquid feed.

Tis good to have you along. It's a great forum.
 
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