Anyone had experience with Modulen diet?

Hi all

Am now on day 4 0f 42 of the liquid modulan diet and wondered if anyone else has any experience. I am managaing the diet ok, changing flavours between strawberry and chocolate and am not too hungry. I am allowed clear mints and chewing gum to help keep my mouth fresh.

However, I am totally fuzzy headed all the time, I'm assuming its down to the loss of nutrients in the last week whilst in hospital and my body getting used to the modulan but will this last?? I soo cannot concentrate and although i'm not sleeping too much I spend most of the day in a dream like state. I dont feel safe too drive so can't get my kids to school and am very shaky when I have to get about. The info pack states I should feel better in about 7-10 days, I REALLY hope so lol. Thanks for listening.

If you do a search for modulen you should find some posts - I know some here have been on it, personally I haven't.....

hey sam,sorry to hear your feeling so poorly,i was on the modulen diet for about 4weeks,i found it ok aprt from when making the families dinner,i cant quite remember if i was to dizzy but i did get hungry eventualy,i gave it up as i found my D started getting alot worse and it was taking it as a trial to try and get into remission on steriods but didnt work so went back to a plain diet,when i came out of hosp after my op i was on these milk shake things but cant remember there name,they were a nutrient supplement to help me put weight back on,hope you get on ok with the modulen,

Oh great

Thanks for your replies guys, I did do a search on modulan (still getting my way around the site) and found lots of info - Thankyou. Also had a call from my dietician today who adv me that the drs had sent me home on modulan and 3 supplementary drinks called ensure + and they shouldnt have!!!! I cant have the ensure + drinks now and I'm miserable!!!!!!

I wasn't hungry on the modulan prob coz I was having the suppplements too but now i'm obsessing over food. Its totally psychological!! When I'm sad/happy/angry/cross I eat and do you know how many adverts on tv contain food. I have NO idea whats going on in the programmes coz i'm obsessessed about what they are cooking/eating - AND I have another 5 weeks of this!!!!!

Im not moaning, i promise, im just tired!!! Need to sleep xxx

On the plus side I have a gastro appt for 8th July.

Hey, I have just started eating everything after being on modulen for 6 weeks, like you. I know it has different results for everyone but it was incredible on me, in a week my energy levels were up and although I still had loose stools regularly, 1-2 times a day I generally felt so much better. I am practically completely normal now but still getting used to food, I really hope it works as well for you as it did for me! Good luck!

Oh also I know how you feel about the emotional side thing with food, it will take a while but you will get over seeing food every where you go you just have to be patient and let the modulen work it's magic I don't know if your doctor told you but I was allowed to freeze mine into an ice lolly which is good if you miss chewing etc! xx

my son, 16 yrs, was very recently diagnosed with Crohn's. His treatment is nutritional liquid diet (Tolorex) which he ingests through an NG tube he inserts at night (feed runs 10 hours) (Modulen is not available in Canada yet). During the day, he is allowed juice, broth, freezies, hard candies (like Lifesavers). This treatment runs 6 weeks and he is approx 3 weeks into it. Not being able to eat has been difficult but he has stocked up at school with freezies and eats those during lunch and then has 3-4 bowls of broth over the evening.

It's been difficult but he keeps busy with friends/sports (easier to do when you don't have family and other responsibilities).

If you're allowed broth, he mixes it up (not much variety but veg, chicken, beef and combinations) and I add in different spices (rosemary, bay leaves, basil) to the broth to change it up a bit. He's also allowed clear juices, so I've made him 'slushies' with ice and juice.

Just try to hang in there!!! I know it's tough - it's only when you can't have it that you realize how much of our lives revolve around food! Good luck!

i tried the modulen diet, and my doctor told me i probably wasnt going to be able to handle the taste or the effects of it. After just one cup, i was running to the bathroom almost every 5 minutes, but the taste if you plug your nose was not that bad actually. I think it just depends from person to person

I'm on a peptamen 1.5 diet (I'm on my second week of a month) and I occasionally gotten the same fuzzy headed feeling, so I'm guessing it's because of the diet. It seems to be working for me though so I'm sure it will be worth it when it's over!!!

Still going - just !!

Well i'm still on the diet - day 06 and no food has passed my lips. yesterday was a tough day - to go to the kitchen and have cheese and bread and pasta and choclate and biscuits and salad and yogurt and pate and soup and beans and toast ummmmmmmm. The temptation was so high.!! On the serious side though it is very hard but I dont have much pain anymore, still terminal ileum pain but my stomach is kinda squidgy now instead of hard and hurty!! Thats the plus side, and I'm not going to the loo much - another bonus. I think if I got a repeat of the pain it would remind me why i'm on the diet. I did get heartburn last night which was tough coz I would normally have gaviscon and couldn't, spent the night sleeping sitting upright!!

Off to the Gp later, to fill him in and get some prescriptions filled out and another sick note. Am very shaky today but the fog from my brain seems to be lifting, even went for a toddle round the supermarket, I might not be able to buy food but got a new duvet cover lol ( then came back and slept for two hrs).

The prednisolone is making itself known. was awake at about two this morning, with very strange and vivd dreams, and twitchy legs!! I'm reducing already so only on 35mg, will be pleased when I can come off them, I hate pred with a passion.:voodoo:

Oh well, kiddlies are home from school so need to go be mom for a bit, they are both off to footie training tonight so the hubby will take them and I am gonna have a soak in the bath to keep me out of the kitchen.


xx

Charlottee

Hi - how's the food reintroduction going?? What sort of diet are you doing? Is it low fibre low residue?

I spoke to my gi secretary who was going to talk to him about me coming off the modulen diet but hasn't rung me back. I'm trying to do the weekend still I modulen but supplementing maybe with eggs and chicken/rice. Scared it's gonna hurt though. How's your experience been?

It's fine, I am not on any special diet or anything, just had to introduce it really slowly my stomach was fine but this week I had really important exams and I got stressed so my BM's got a lot worse- even during an exam, but it was oaky. Now exams are over I am hoping they will return to normal! So are you on modulen and also eating?

I'm on my third day of modulen and I am seeing food everywhere! Only got another 53 days to go - might just be the most difficult thing I have ever done and I haven't even got to christmas yet! Its going to take a lot of will power anyway. Its all for the greater good - as long as I get over the flavour.... Must admit its nice to be able to see that some people have managed it - there is still hope for me yet!

Dan

It seems to be that people can either tolerate it or not, and a lot of people who can see really good results, I hope it works for you!
Charlotte xx

dan207227,
Good luck dan.

sam37 said:

Hi all

Am now on day 4 0f 42 of the liquid modulan diet and wondered if anyone else has any experience. I am managaing the diet ok, changing flavours between strawberry and chocolate and am not too hungry. I am allowed clear mints and chewing gum to help keep my mouth fresh.

However, I am totally fuzzy headed all the time, I'm assuming its down to the loss of nutrients in the last week whilst in hospital and my body getting used to the modulan but will this last?? I soo cannot concentrate and although i'm not sleeping too much I spend most of the day in a dream like state. I dont feel safe too drive so can't get my kids to school and am very shaky when I have to get about. The info pack states I should feel better in about 7-10 days, I REALLY hope so lol. Thanks for listening.

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hiya
i have been on modulen since the 22nd september ,and i found it really hard to ,yea i was dizzy light headed and very shaky when i first started ,but know im doing quite well and feel well, i know the food seems to be everywere and i found i even drooled over foods i dont like ha ha, i only have the strawberry flavour ,yea it is hard but well worth it, i have been told i can start eating 1st dec then i would of been on it 9 weeks, i even went to my brothers wedding last week and took me drinks with me and it didnt even bother me, but these last 3 days im so hungry and wanting food, i eat jelly babies not the bag mind you, hope this has been a help to you your not on your own, but i don know wot you goin through so stick with it,keep well

love and hugs
sandra x

Hi all, im new to modulan,im on day 3 at the moment,( 8 modulan drinks a day) had a phone call from the hospital yesterday saying i have 37 cm of bowel that needs removing and i have been fast tracked to the front of the hospital waiting list, so should have it removed within 3 weeks. The modulan is not to bad, i mean dont get me wrong im craving food at its hard at meal times when i see everyone else eating but i realise its for my own good.
Hope your all doing well

karl

Hi Karl,
I was in hospital for four weeks last August and surgeons wanted to remove my small intestines due to the amount of crohns but my gi dr wanted to try me on Humira first. Was getting better but got I'll around December again so I went on the modulen diet for twelve weeks and it changed my life. I'm six foot four and was down to eleven stone but after the modulen diet I was up to fourteen and a half stone and have kept the weight on. Haven't had any pred sinse last year as if feel I'll I just go on the mod to give my guts a rest.
Good luck
Chippy

Yikes karl, that is some news to get by phone! I sure hope that you are able to manage the Modulen diet until you have your surgery.
May you soon be feeling well. :goodluck: