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Modulen Diet for Crohns

Hi

I am a 24 male from the UK who has had Crohns since 2002. After 2 operations, countless spells on steroids and azathioprine, trials on infliximab and adalimumab - all of which haven't worked, my specialist has recommended I try Modulen.

For those who don't know this is where you don't eat any food and have Modulen (a special kind of drink). You then reintroduce food slowly after 4-8 weeks. Everywhere I have researched seems to suggest it has at least a 90% remission success rate but the problem is patients are unable to stick to the strict regime. I am determined to give it a good go!

Has anyone any experience of this - any views and comments will be gratefully received!

Thanks
 
hey colin sorry to hear you havent found anything that works. I have never heard of Modulen so no experience here. I do have a question however, after you use Modulen, and assuming it puts you in remission, is it suppose to keep you in remission... somehow?

either way good luck, and let us know how it goes.
 
I had never heard of modulen until last week. The idea is that it rests the bowel and contains casein which is shown to heal strictures and fistulas and reduce ulceration. I am not sure exactly how it works but what I am hoping is that if I have a flare up -
I go on modulen for a while instead of drugs which have the side effects.

I have heard that modulen has been discontinued in the US. I am from the UK and have had no problem getting hold of it - just hope they don't discontinue it here....
 

soupdragon69

ele mental leprechaun
Hey Colin,

I use Elemental 028 when I need to. Originally I ended up on it when diagnosed Xmas 06 from then til summer 07 because every time I tried to reintroduce food I ended up in pain etc. I keep a drawer with the drinks in powdered format (elemental does come in ready made cartons too) so I can use them to supplement my diet if I am not eating enough or switch to them totally if needs be. My GP has put them on my repeat prescription list so I can order any time I like and it gives me some "control" or "say" as to when I am on them then without having to check with others first. I do stay in touch with my dietitian via email and see her in clinic as often as we both feel necessary (have agreed once a month at the minute as am not great). I also keep my GP in the loop too.

I have heard of Modulin being used here also but never tried it. The Elemental is designed to be absorbed in the first metre of your small bowel as it leaves the stomach so the rest of your gut gets time to heal and repair. Because of the casin in the Modulin some folk cant tolerate it so the gastro teams then opt for Elemental. I also think it depends on your consultant and dietitian in relation to which they choose.

The most difficult part of the whole thing is eating is a very sociable thing and going out with friends for a meal isnt possible (although mine used to organise picnics etc so I could just take my drinks and chat and not feel isolated if that makes sense.

The flip side I find is I feel very "safe" on the drinks because they make me feel soooooooooo much better so although can be difficult mentally to get started on them and not eat at all, you also have the other one of do I really want to eat again at times! LOL

Bit of an odd one that. Dont know if you have had those sort of feelings but several folk I have talked to either here or at clinic etc have been in the same boat.

There is research showing that this method does definately help you go into remission the problem is staying there after you eat again! Thats why they reintroduce food slowly and start with very basic foods. On the reintroduction aspect my team used the LOFFLEX diet that they designed and gave me a small pocket book with everything in it and it also included a diary where I logged what I had each day so they could track my general progress. It worked well for me.

Keep us posted on how you are doing. Thinking of you and welcome to the forum!
 
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Hi Soupdragon

Thanks so much for your detailed reply - it made very interesting reading. I have now been on Modulen for 9 days and feel so much better. The stomach pains have gone as has the fatigue. Have been struggling with diarrhea but I discovered that if I drank the drink over a period of an hour the diarrhea stopped.

My consultant is a professor at a london hospital and at the moment I have full trust in him as I have already seen a dietician who has explained everything to me and I have another appointment soon so I think that is going to be good.

I have to admit I am craving some food. Yesterday I was desperate for chicken tonight and rice - what a bizarre craving! This morning it is toast with strawberry jam!

I passed my first test on Sunday as I went to a friends and sat at the table whilst they had a full roast - I sat there with my drink and passed the test!!!!
 
hi colin my daughter has done the infiximab and it sort of worked, the steroids, and is on azathiopren she also went on the modulen and out of 15 or so kids that were on it she was 1 of 2 success stories but a had to push her so hard in the early days and i felt so bad for doing that but all the determination came good in the end so its the cruel to be kind thing. I think she got that ill and lost so much weight after my mother died last january and it was so hard to handle her been illness and grief as well as trying to cope with my own grief
keep it up hun your doing yourself proud
 
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Thanks emma nd livvy. I am now in to day 11 and doing ok. Feel much better but everywhere I seem to look I see food (adverts, tv programmes, people eating!) It is very hard psychological and I cannot wait to eat again and cook a meal.

However whilst I am getting better I know I must stick to the drink!
 
yeah your doing good and her doc told her as a treat she could have a couple of haribo jelly sweets as a treat for dessert to break the boredom and i think it helped her a little
 
I was told not to eat anything - are you able to have small treats? I am craving food today - even soup would taste sooooooooooooooooo good......
 
well he said your not really supposed to but a think with her being a child and quite upset as it was just before easter and she was crying about her eggs and all that he said a couple wouldnt hurt to much and like i said she was a success story
 
hmmmm.... don't think mine will let me - being 24 I can't really pretend to be a child! Oh well - better just get on with it!

It is working as I have no crohns symtoms so I just need the will power!
 
well yh we all needed the will power back then same as you do now and she never got her eggs anyway the ones her brother didnt sniff out the dogs did but when she was allowed i made it up to her
so when you are allowed food again do you do the potato, fish, chicken, and rice oh and a little egg for week 1
 
Haven't been told how they are going to reintroduce food but will ensure I have constant appointments with dietican and specialist so it is managed properly. Any food at the moment would taste wonderful.

Seem to have got through my cravings of earlier in the day!!!
 
modulin

hey mate

I have been on the modulin. Its not bad. You can get different flavours to mix it with cos taking it straight i found pretty disgusting. I used it wen i had fasted for a while. went on tat first then slowly brought food in.

good luck
 
Something that you might consider trying is freezing the Modulen, it's not got the same consistency as ice cream but it feels like you're actually eating something/have something to chew on as opposed to just being on drinks all the time. I found that helped me get through the days I really wanted a nibble of something small!
 
Thanks Natalie

My body has now completely adjusted to it and I am not craving anymore. I even when to a restaurant to meet friends last night and sat there whilst they had their meal and I drank my drink! I wasn't even tempted to have a chip!
 
M

Modulen87

Guest
Colin, How many calories are in each scoop.. I am starting soon and wanted to know how i will get atleast 1500 calories a day..

I got a script for a few 400g cans and will def need more.
How long does each one last per say.
 
Hi Modulen87

I replied in the "craving food" thread. I reckon for 1500 calories a day you will get through just under 400g a day but remember you need to introduce it slowly.
 
Colin, Whats up. I remember talkin' to you at HW.
I have got this prescribed by my doctor as well.

I do have a few questions.
How many Cannisters do you go through in a day? And Can you maintain or gain weight on this product?

Thanks.
 
Hi Kasper

Good to see you on here as well! I go through just under 2 cannisters a day. And I am now on day 19 and have maintained my weight and even put a couple of kgs on.

Kittie,

I haven't a clue if it is illegal however all meds prescribed in the UK say they are for use by the named person. But I don't know the law so wouldn't know
 
Oh poop so it has to be prescribed? Gah I thought it could be bought over the counter.
My husband did research on this stuff and it's really promising.

He also read that the reason they blocked it from the US is because it was working too well and the pharmaceutical companies wouldn't make money off Remicade etc anymore.
 
Oh man. I only ordered 3 cannisters. I dont think I could Afford all this :(..

Plus it's all i got.
What would you recommend for me? Day 1 - 7 do i go through that much a day?
Ahhhh.. I got the script from the doctor in UK but it's going to be hard to afford 3 cannisters at 93$.

I don't know what to do..

Any recommendations?
 
Can't be bought I don't think, prescription only as it's a medically supervised diet. I got my first lot off my dietitician and then repeat amounts through my general doctor, same for the Elemental - although I do think that can be bought without medical intervention online. You could try for the Elemental in the US though as it's available, same principle idea to rest the bowel.

Following my repeat colonoscopy on Thursday a lot of the inflammation and active ulceration in my large bowel has been significantly calmed to the point where I've actually stopped bleeding for the first time since last October. So the Elemental is definitely worth looking into as it has great benefits.
 
I'm scared of the Elemental diet because it's watery. =( I know its a mental problem LOL but somehow I see thick milkshake = food but watery = drink.

Do you think that if I did something like Herballife? the powdered protein shakes I could get a close effect?http://www.herbalife.com/
 
Modulen isn't thick at all, it's reasonably watery. I'd say Modulen and Elemental similar consistency. Modulen maybe slightly more milky in taste. I did find somewhere you can buy Modulen online, without a prescription but it's from NZ at a cost of $450 for 12 canisters - which isn't really realistic.

Not having knowledge of Herbalife it's hard to comment but certainly any drinks like that would add a boost to your diet if you feel you need it. But I'm not sure it's something you can live on full time for weeks as it's possibly not nutritionally complete as the Modulen and Elemental are.
 
Thanks Nat! I guess I should check out the elemental one then. I just don't want to be on Pred/REmicade forever.
 
I am now on day 21 since I last had food. I went and saw my consultant today and all my blood tests show the inflammation has gone. He wants me to stay on the Modulen for another 3 weeks and then have another MRI scan to see what things are like.

I know some people are sceptical of Modulen but I have to say that after 6 years where steroids, humira and remicade have all failed as have a resection and a formation of a colostomy - Modulen is the only thing that has allowed me to be symptom free and feel like I did before the Crohns was diagnosed. And this is only after 3 weeks - studies show that it takes 5 weeks to achieve full remission so hopefully the best is yet to come.

I am trying not to preach but for the first time in 6 years I see light at the end of the tunnell. I am just really gutted that Modulen has been discontinued in so many countries. I am praying that the UK do not follow suit.
 
That sounds really good Colin!

Despite my high level of natural scepticism and concern I wasn't getting anywhere with the Elemental, it does seem to have calmed things down somewhat. Not totally, but a worthwhile improvement. Found some things to avoid already, and some I actually seem to like - like soya milk. Currently hoping the improvement will continue... I'll remember the Modulen just in case.
 
So, I started my Modulen IBD today.
It Looks like there are 48 small scoops of this stuff and looks like im only taking 24 of them per day.

Looking like 1000 calories a day to get me started. I'm pretty thin so 1000 calories should be fine especially since i probably don't absorp many from the foods i eat regularly.

3 cans will go in less then a week.. Pretty expensive stuff. I hope it works.
Starting Remicade monday also, should be a quick remission for the first time in 8 years with modulen + remi.

Hope it works.
 
Good luck Kasper

Quick update on me. Today is day 26 since I last had food and started Modulen. I am feeling amazing. No gut ache, no diarrhea (formed stools for the first time since 2004), no tiredness. It is unbelieveable! I am going to stay on it for 8 weeks then introduce food with the help of my consultant and dietician. I am very wary about having food again but know it is not realistic to stay on liquids for the rest of my life so hopefully the reintroduction goes well.

I am also starting to come off the Pred and hopefully never have to go on it again and just use the modulen whenever I have a flare.

I assume you are having food as well Kasper as 1000 calories is very little? I go through 2 cans a day but then again it is all I am having.

Some words of advice - drink it slowly - ideally over an hour otherwise it gives you dreadful diarrhea. Also drink plenty of water during the day.

Hope it works for you as well as it is working for me!
 
Yes I know, It is very little. I just dont know how I can afford it all. Not only that, It takes almost 9-12 days to get here from the U.K..

I don't think you can eat any food with it.
Just my Meds..

What do you recommend.?
 
It could just be the placebo effect, but already the gas went to barely nothing.

I do feel a bit full for about an hour after but no pain at all today, and my back pain went away.
Only been one day.

Im going to be doing strictly Modulen for 6 days. at 1k cals unfortunatly.
Then another 2 weeks at 1500-2000 calories.
I am also going to start remicade monday.

You think the 2 will heal the bowel fast and well?
 
I am now 5 1/2 weeks into my modulen diet. Having tried everything in the past and failing everything I think I have found something that works. I have no stomach pains, no fatigue, no diarrhea. I have put on half a stone in the 5 1/2 weeks and even been on a date with a girl which would never had happened 2 months ago as I was always so tired.

So I am currently the biggest fan of Modulen in the world! I am seeing my doc on Monday and will tell him I am staying on Modulen for the full 8 weeks. I will then introduce food which I am now not missing at all and am very wary about starting again but want to try and lead a normal life. However, at the first sign of a flare up the yellow tins of Modulen will be back out of the cupboard!

I finally finished my Pred dose today. For the first time in 8 months I am steroid free!!!

So as you can tell - I will encourage everyone to try Modulen if you can and if you cannot get it in your country, form a protest group and write to the powers that be!

Oh and by the way - looks like things may look good with the girl!
 
C

crohn's can suck it

Guest
i've used modulen 3 times

hey,

i'm a 20 year old female living in the uk who has had crohn's since 1988. when i was first diagnosed i was put on steroids but have since refused to go on them again at all cost. i have used modulen on 3 separate occasions as a last resort to kick my current attack. as much as i hate hate hate to go on modulen, mainly as i love my food with a passion on each occasion it has worked within a week to stop the bleeding and hence aid recovery. i'm not gonna lie, it tastes bad. but it keeps you going and ultimately helps you.
my crohn's has again flared up and unless i am able to get it under control myself i will go back to using modulen for a least a 4 week period - i'm currently at uni, i am not looking forward to that point.

hope that helped in any way
 
Sorry to hear you are flaring again Crohns Can Suck It. I do not mind Modulen at all. Yes, it is awful without flavouring but I put a bit of the nestle crusher mix in and it tastes ok. I have been eating food now for 3 weeks as well as having the modulen. All been ok untill Sunday when I had pork for the first time and I had stomach pains so am having just modulen for a few days for everything to calm down and then go back to reintroducing food (avoiding pork at all costs!"

I am trying a gluten free and dairy free diet as well. So far so good, but the modulen is still the main part of my diet as I am not at all confident with food.

Hope thinga improve for you.
 
From Europe, modulen and 028 are the most popular kinds of EN used in a hospital setting here. I tried them both, I liked 028 the best.

As far as remission through EN, I really don't know, I personally think the studies that claim it causes remission are somewhat inconclusive. They used low CDAI scores, they tested against steroids and 6MP which both take a while to work....I don't know, but I would be careful of putting too much hope on EN for remission, I use them to get extra calories, not to induce remission, which has never worked for me.
 
Modulen isn't thick at all, it's reasonably watery. I'd say Modulen and Elemental similar consistency.
Nod. Modulen tastes like a light sugary milk to me. 028 tastes more artificial a bit. They both have about the same thickness to them, they're both extremely light...like light milk.

Compared to the non-EN garbage out there, Fortimel and Ensure, they're great products. I prefer 028, but I like modulen too.
 
My breath gets really bad when I go on nothing but liquid diet (maybe its the type of drink I was using - fortisip) wondering though, how many canisters does one use per day, they're like 30 bux a cannister
 
For EN? There's 500 calories in a single 028 pack, so 4 minimum if you use only those, same with modulen, just count until you have your minimum calories.

You digest 028 and modulen much better than regular food though, 2000 calories in EN is maybe 2500 calories in regular food, it's way more bioavailable.
 
(maybe its the type of drink I was using - fortisip)
Fortisip is like Fortimel, probably same thing, it's not really EN though. I've drunk it but it's so fat and thick and full of sugar that I didn't want it anymore. Modulen and 028 are far lighter, they're like light milk, while Fortisip and Fortimel are like milkshakes in consistency, way too heavy for me.
 
I tend to agree with Kiny, as i'm not in remission yet and have had liquid feeds for around 12 or 13 years. I do have a little bit of bland food like salmon and boiled potato.
 
Location
Birmingham
Looks like I'm getting put on the Modulin diet today/soon... in prep for some surgery I may or may not be happening. But it's got to the point where normal steroids/pred and Azathioprine don't seem to be having much positive effect quick enough.... though the Modulin would be weeks and weeks longer than I did the Fresubin for... how am I gonna cope without food...... I love food.....
 
Location
Birmingham
3 days in, early I know, but it's making me just as gurgly and I'm having the same kind of pains I was eating a normal low residue diet... I know I need to give it more time... but it hurts alot... and I threw it all up yesterday too... theres one more alternative before an NG tube or something, but I need nutrients to build my weight back up if I'm ever gonna be fit enough for an operation and to get off the prednisolone... but right now good god does it hurt.... from only 500ml's of modulen drunk over the space of 3-4 hours... and I'm still hungry as hell...
 
could you perhaps try 30mls an hour? it might be easier. I think from my experience when new to a different liquid feed, or new to it altogether, it can be painful and cause cramps. Remember, your intestine is not in good condition, which is why you need it, and also that you are giving it something different.

Yes, I say keep up with it, even if you sip as low as you can each hour. good luck. I hope things improve.
 
Location
Birmingham
could you perhaps try 30mls an hour? it might be easier. I think from my experience when new to a different liquid feed, or new to it altogether, it can be painful and cause cramps. Remember, your intestine is not in good condition, which is why you need it, and also that you are giving it something different.

Yes, I say keep up with it, even if you sip as low as you can each hour. good luck. I hope things improve.
30ml's an hour seems far more reasonable than the way I was doing it. The dietitian who put me on it didn't mention any of this though. Started me on 6 scoops in 250ml of water 4 times a day, and then upped it to 9 scoops in 250ml 4 times a day, and day 3 9 scoops in 250ml 5 times a day. Granted I've lost alot of weight, but I tried 500ml on day one and had the usual food-like cramps and gurgles. Same for day 2 and 3.... tomorrow I will try the very very little and often method... I'll only mix up 250ml at a time and drink it over 5 hours... long as I time it right... it really does need some flavour or something though... smells like weird milk/baby milk... and the mixing part is probably my least favourite part... all the floaty bits on top T-T Either way. I will try again tomorrow. But I'm telling my doctors too, might as well while I'm in here...

PS; It's my terminal ileum that's worst effected by Crohn's. A little in the large bowel, but the problem is in the ileum.
 
Location
Birmingham
I suspect that if you stick to the very small amounts each hour you will find all settles down after a few days. Good luck, and naughty dietician lol.
Different, more Crohn's knowledgable dietitian came by today and started me on Elemental 028 Extra carton drinks. On my second of the day(first at 11am-ish, second started at 2pmish), sipping slowly. The flavour is more palatable than Modulen, but I'm sure I'd get bored eventually. But after Fresubin shakes, milkshakes have been ruined for me a bit.

Noticing some gurgling and drain-like noises with these drinks, and some pain, but less than yesterday at least.

EDIT: Day 2 of Elemental 028 extra drinks. It's 5pm though and only on my 3rd, the first I had 9am-ish made my stomach gurgly and painful, second(12pm-ish) also kinda gurgly and uncomfortable, but less so, third I mixed with water and ice and it seems to be having less of an effect, but I do have alot more to drink... but that's over a longer period of time... so if I do that with every carton maybe it'll be ok.. but then I'll be drinking twice as much at least than what I *need* too. Though drinking isn't a problem for me, makes me gurgly, but everything seems to, so I suffer regardless. But if this actually works and settles it down while I'm decreasing the pred, huzzah!
 
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I must recommend blender bottles and similar products, you can find on google or amazon.

I've been on Modulen IBD for 6 days now and I bought one of their bottles half way through, giving the Modulen a shake in that mixes it completely smooth and lump free. I quite like the taste of it on its own, it's like sweeter skimmed milk.

I have been basically chugging 500ml 3 times a day, to give me 1500kcal per day. I guess I should drink it slower, but so far I've had very little D. I have had bad breath though which doesn't go away no matter how often I brush.
 
Hi Bodie,
well, fancy being able to chug 500mls at a time. Omg, that would zip straight through me, lol. It's great that you have very little D. For some of us it's liquid in and liquid that goes straight through. Hope it resolves some issues.

Also, some people do experience bad breath. I don't know if brushing with bicarb of soda (gluten and aluminium free) would help, but it is supposed to get rid of lingering smells. Otherwise, I'm not the one to advise you. But good luck.
 
The bad breath is from a bacteria die off I think so I don't know how much brushing teeth helps, I had it aswell when I was on modulen, unfortunately the modulen didnt work for me, too many sugars in it I think :(
 
Bodie, maybe try having it spread over a longer period of time, like 250ml 6 times a day. I tried having it in meal-like sizes and I found that I felt much more energetic just sipping on them throughout the day.

As for the bad breath, I have found that brushing my tongue as well as my teeth helps a bit, presumably because of the bacteria on the tongue I'm guessing.
 
I'm in agreement with the above comments. I also take a probiotic that is lactose free to help build good bacteria. I can understand the massive spikes in energy, and as Joshua says, there are so many sugars and oil in there it can be difficult. I swear these liquid foods are too oily for me as well as having sweetners in which aren't good for me.

Good luck with trying 250ml 6 times a day.
 
All the carbs in EN are simple carbs, which is why it's so sweet.

EN takes all 3 macronutrients and uses the most bioavailable (most easily absorbable) version of it.

Carbs -> most bioavailable carb is glucose, so they use glucose syrup
Protein -> most bioavailable protein is whey (often hydrolised), so they use whey
Fat -> most bioavailable fat is medium-chain triglycerides, so they use m-c t.

That's the idea behind EN, if there are issues with digestion, then take the shortest way to Rome and use the most bioavailable macronutrients.

That's the reason why I assume most people easily get D. on EN, even though they're not usually in pain. If you absorb most of your food, all that's left is water that hasn't been absorbed by the colon, so you get D.
 
It's funny you should say that Kiny, because I am usually constipated on it. Ahah.

It might have something to do with Crohn's being higher up in my GI tract though. I guess everyone reacts differently in pretty much all cases. Ahah
 
Zilla, you'll make a lot of people on here incredibly jealous if you have the luxury of constipation. Me especially, lol.

Kiny, you explain it loads better than some of our specialists. thanks.
 
Any update, Colin? Still feeling well? After reading this thread I might just have to try it! Now to find it in the U.S....
 
Day 17 reporting in.

I've lost about a stone, which is good for me as I'm about 3 stone overweight.

Energy levels are improving slightly, still kinda tired.

Haven't been hungry or cheated with food, but I have a cold now so am eating Soothers, which I hope won't be too bad (mostly sugar).

I am however CRAVING salty, savoury foodss, all this sweetness is making me miss things like toast so so much...

I am still mostly having my drinks as 3 large ones, due to my job and lifestyle, but havent had any D since the first 7-10 days (felt like battery acid, was terrible for a few days).
 
That's great to hear!

The one thing I love about EN is you can get exactly what you need to gain, lose or maintain; whilst also giving your gut a rest. 2 birds with one stone. Ahah.

I was told I was allowed Allen's lollies without milk powder, so I at least have one thing I can go to when I want to chew something. I agree with you on the missing savoury foods though. I'm just counting down the days til my first boiled potato.

I'm 11 days in and doing pretty damn well too :)
 
Bodie,

You're doing brilliantly. It's great you're losing weight and getting all the nutrients that you need. Perhaps the tiredness comes from losing weight. However, it is quite normal, unfortunately, for people with Crohn's to experience extreme fatigue. I fully comprehend that you want the savoury stuff too. Don't let the mind wander too much into the fantasy land of 'Oh, I could just fancy....' It doesn't bear thinking about. And try not to listen in to what others are doing for dinner later. Great the D has stopped. Good luck with the module. I have Vital 1.5 through a PEG.

I used to live in Hove by the way. I so miss living up country. I really should move back to the civilized world. However, having crohn's is somewhat uncivilised anyhow.
 
Great you're doing well Zilla. Getting all the nutrients is great news. it's kind of a relief to find that you just don't have to eat all the things that disagree with a Crohn's intestine just to get good and needed nutrients in. It's almost the easy way out isn't it? Good old liquid food.
 
Hi All,

I am starting Modulen for the first time today - it strongly reminds me of milk but just not as nice - looking forward to being able to add some Chocolate flavouring to it!

My dietician appointment was only last week and already i have thought of a few hundred questions i didn't ask him so was wondering if anyone could help!

During the 8 weeks at anytime could i have a light soup (with all lumps strained) or is this a no no?

Also without sounding terrible I was wondering about the odd glass of wine? (And by odd i mean a small glass once in a blue moon) would this be okay or is it a complete no go too?

I do love my food so hope i can adjust to it without becoming too miserable!
If anyone has any advice I would really appreciate it! Thank you!
 
Hi Silverdale,
I think when going on liquid feed for the very first time it feels so tough. I lived on soups for many years. However, you might need home made soup made with a Kallo gluten fee stock. You might need to stuff it through the blender until it can be sieved easily. Having said this I would consider contacting your dietician first. He (I've never met a He dietician lol) will probably want you to stick with modulen only to start with and then when you can reintroduce foods then he may allow a liquid soup.

I say cheers to the once in a blue moon glass of wine. If its not that regular then actually you will be able to test whether wine itself is a trigger drink. So do enjoy that once in a blue moon drink, but don't tell the dietician.
 
Thanks Spooky1!

My dad has offered to make a homemade soup whichever way is easiest for me bless him so I will double check if I am allowed - it's my birthday next month and was hoping i could have a cheeky bowl of soup and a glass of wine how crazy haha but i don't want to ruin it by giving into temptation!

Thanks for the info :)
 
What a wonderful dad you have. I'd mention things, except the glass of wine, to the dietician and sound him out. Temptation is one of our worst enemies when on liquid diets, lol.

I have bland food like salmon and boiled potatoes. And at Xmas, I come off the liquid feed for 3 days, whoooppeee. How very naughty I am.
 
I've done 5 weeks nearly now and no improvement keep running to the loo when I've drank it .
Going on hols in two weeks so need to get off it .does anyone know how much food to eat when coming off it .
I'm at the end of my tether now and don't want to ruin the family holiday .
 
Hi Goose4462,

O no really :( That's not good. I haven't had that side effect as constant but i have the occassional "loo emergency". I've just reached 6 weeks and i have struggled, my mum didn't think i'd manage it but i think i've surprised her :) I have a dietician appointment a week before i come off it for him to explain how to start eating again, maybe you should have one too?

Hope you get better and have a lovely holiday!
 
Hi, Goose,
well done for sticking it out. For some of us it is literally liquid in, liquid out! So sorry you're still suffering. Try small meals, mainly salmon and potatoes. Don't go straight for the chocolate cake, pizza and spicy foods, lol. try the bland stuff first. Good luck, and enjoy that holiday, you need one by the sounds of it.
 
Thanks spooky.I rang the dietician today and I can start soup on Friday then just bits and bobs .
Leaves me 8 days before my hols need to be right for the family just chilling and a bit of golf .
Thanks for the support .
 
Hi, not sure if anyone will see this, but I am have just had to stop drinking Elemental 028 as it went straight through. Tried for 5 days, sipped slowly but couldn't retain it. My dietitian now thinks I should try Modulen. Has anyone got any experience about one being better than the other?
 
I can't say anything about Elemental 028, but I found that modulen has been easier for me to tolerate than Ensure Plus and Fortisip. I think it might be because it contains more water and feels a bit less sickly to drink. I flavoured it with nesquik and let it sit in the fridge overnight. Letting it settle makes a great difference in flavour. :)
 
Thanks very much for the reply. I have been following the Lofflex diet really successfully for over 2 years with remission so am disappointed to find myself ill again, mostly caused by a stressful period in my life. I've had Crohn's for 20 years and only have just over a metre of my gut left so have to protect it. I can't go into the operating theatre again. Previous drug regimes have always failed so to find the Lofflex diet was a life saver for me. I just need to nip this current flare in the bud and then hopefully go back to the diet. Currently just eating chicken, white fish and rice, but that's fine, I don't mind what I have to do as long as I am well. Good luck to everyone else struggling with this horrid illness, it's great to read when some of you seem to be doing well.
 
Thanks spooky.I rang the dietician today and I can start soup on Friday then just bits and bobs .
Leaves me 8 days before my hols need to be right for the family just chilling and a bit of golf .
Thanks for the support .
Me too re golf. Keeps me sane! Can cope with diets, bland food and no treats, just so long as I can go and play golf.
 
Tbh, EW8, I find all liquid foods the same as far as output. I too have little guts left so that might be half the problem. I'm never having surgery again. I do have salmon and potatoes, not much else lol. Hope all goes well. I used to flavour modulen also.
 
Hi

I am a 24 male from the UK who has had Crohns since 2002. After 2 operations, countless spells on steroids and azathioprine, trials on infliximab and adalimumab - all of which haven't worked, my specialist has recommended I try Modulen.

For those who don't know this is where you don't eat any food and have Modulen (a special kind of drink). You then reintroduce food slowly after 4-8 weeks. Everywhere I have researched seems to suggest it has at least a 90% remission success rate but the problem is patients are unable to stick to the strict regime. I am determined to give it a good go!

Has anyone any experience of this - any views and comments will be gratefully received!

Thanks
Hi Colin 84,
I have just been put on Modulen too. I have heard good things about it and hope it works. But I worried I'm not going to be able to stick to the strict regime. How long have you been on it?
 
Hi SoapyLilly I am here in the Uk too and on day 15 of Modulen. I have found it surprisingly easy, though I am motivated by fear as I was very ill. I would stick with it if you can. The first 10 days it did go through quite rapidly, liquid in and liquid out which worried me, but then it suddenly started to slow down. I am now just going to the loo once or twice a day and whilst still a bit liquidy, there is no urgency and I can manage this. I really need to put weight on, I am very thin and have managed to gain 4lbs over the past few days just by upping how much I consume. I am tired, but that's because I have been so ill, but my energy levels are increasing. I like the taste of it and don't bother much with the flavourings, though occasionally have the strawberry as a change, I don't like chocolate things and the banana is a bit odd. My tummy is flat and quiet and I am sure it is doing good. You won't feel hungry. I have been out to dinner with friends and they have eaten and I have just taken my Modulen and I am going on holiday in two weeks and simply taking it with me. Holidays have always been very difficult managing strange food and water and actually this will be a easier.

So hope all goes well for you. It's good to see the UK hospitals are trying things like Modulen as well as all the drugs. I am in Gloucestershire and have a pretty good team. Hope you are well looked after. Liz
 
Hi everyone I'm new to this but saw this thread and had to register!!
So I went to see my dietician today and she has given me modulen... so I'm on my 2nd drink of my 3 that I am allowed on day 1 and wow... already I'm hungry! I dont know how long I am on it she gave it to me as a sudden treatment as she had somewith her and gave me 7 cannisters to take home and start and she will give me a call on friday to see how I am getting on and if I am then she will speak to my GP about carrying it on! I'm worried about how hard it's going to be :(
I have added a nestle milkshake powder to taste and it's actually ok but a possible 6 weeks of it?!?!
Has anyone else been on it?! How did you cope?!
Im 23yr old female losing lots and gaining little in weight :(
 
With regards to weight, personally I think it's the most effective thing I've ever used to manage my weight. Even with stricturing I managed to put on a few kilos, then once I was happy with my weight I was able to cut the shakes back a little.

As for the hunger, you gradually get accustomed to it, but it is handy to have some safe non-modulen foods just to satisfy flavour boredom and keep your jaw working. Ahah (e.g. I was allowed particular lollies, like some types of soft jubes or hard lollies.)

How many cans are you going through a day?
 
With regards to weight, personally I think it's the most effective thing I've ever used to manage my weight. Even with stricturing I managed to put on a few kilos, then once I was happy with my weight I was able to cut the shakes back a little.

As for the hunger, you gradually get accustomed to it, but it is handy to have some safe non-modulen foods just to satisfy flavour boredom and keep your jaw working. Ahah (e.g. I was allowed particular lollies, like some types of soft jubes or hard lollies.)

How many cans are you going through a day?
Hi zilla7777,
Thank you for the reply it's nice to know my weight will improve :)
What kind of foods would you regard as safe non-modulen foods?!

Day 1 (yesterday) I was on 3 drinks at 210ml water and 6 scoops modulen
Day 2 today is 5 drinks same measurements
The from day 3 its 7 drink from then on at same measurement.
It will be just under 1 can a day
 
Hi Kimbohiggs

Stick with it. You'll be fine. I have been on Modulen since the start of this year. I did four months of Modulen only and now do about 50% intake each day of Mod and the rest food. It saved my life! It put me in remission and keeps me there now as a supplement to the rest of my diet. I am now able to eat without worrying to much about my stricture as it has calmed down my inflammation. I am sitting drinking some now even as I type this. I actually found that when I started eating again, I wasn't bothered about food at all and I missed the Modulen. It took about two weeks for my weight loss to stop altogether, then I maintained my weight for a while and then I put some on. I have gone from 8 stone 6 lbs to 9 stone with the Modulen which is a reasonably healthy weight for me. Today, if I feel that I am in danger of flaring at all, I just go back on the Mod for a few days until I am right again. I too am in the UK and we are so lucky to get this on the NHS. Has it calmed down your symptoms? It took about 10 days for it to really work for me. I found after about 6 days I didn't feel hungry at all. If I needed to taste something, I sucked a clear fruit sweet and very occassionally ate a little cooked fish, but mostly I was fine. Let me know if I can help at all. Good Luck. Liz
 
Hi Kimbohiggs

Stick with it. You'll be fine. I have been on Modulen since the start of this year. I did four months of Modulen only and now do about 50% intake each day of Mod and the rest food. It saved my life! It put me in remission and keeps me there now as a supplement to the rest of my diet. I am now able to eat without worrying to much about my stricture as it has calmed down my inflammation. I am sitting drinking some now even as I type this. I actually found that when I started eating again, I wasn't bothered about food at all and I missed the Modulen. It took about two weeks for my weight loss to stop altogether, then I maintained my weight for a while and then I put some on. I have gone from 8 stone 6 lbs to 9 stone with the Modulen which is a reasonably healthy weight for me. Today, if I feel that I am in danger of flaring at all, I just go back on the Mod for a few days until I am right again. I too am in the UK and we are so lucky to get this on the NHS. Has it calmed down your symptoms? It took about 10 days for it to really work for me. I found after about 6 days I didn't feel hungry at all. If I needed to taste something, I sucked a clear fruit sweet and very occassionally ate a little cooked fish, but mostly I was fine. Let me know if I can help at all. Good Luck. Liz
Hi Liz,
Thank you so much for your reply it really boosted me... I'm supposed to have 7 modulens today and im struggling with my first one if im honest :/ x
 
Hi, glad you're still persevering. I like the flavour, but I sometimes add Crusha strawberry or raspberry and find it is just like a milkshake. I have a can a day if just having the Mod. I make it up with 12 scopes and 420ml of water. It is better if you make it up a couple of hours before you drink it as it seems to have then mixed in well. I was desperately ill when I started it and facing being fed intravenously with no gut left and on a transplant list so finding the Mod did literally save my life, which I why I have found it so easy to adapt to I suppose. Anything was better than the alternative. Plus I like the fact that it is not a nasty drug and can't have any bad side affects. Your dietician should advise you and give you enough so you don't feel hungry. I wish you lots of luck and hope as the days pass you find it easier and easier and enjoy feeling well. Liz.
 
Hi, glad you're still persevering. I like the flavour, but I sometimes add Crusha strawberry or raspberry and find it is just like a milkshake. I have a can a day if just having the Mod. I make it up with 12 scopes and 420ml of water. It is better if you make it up a couple of hours before you drink it as it seems to have then mixed in well. I was desperately ill when I started it and facing being fed intravenously with no gut left and on a transplant list so finding the Mod did literally save my life, which I why I have found it so easy to adapt to I suppose. Anything was better than the alternative. Plus I like the fact that it is not a nasty drug and can't have any bad side affects. Your dietician should advise you and give you enough so you don't feel hungry. I wish you lots of luck and hope as the days pass you find it easier and easier and enjoy feeling well. Liz.
Its day 5 today and for some reason today i am really hungry! But drinking modulen isnt quite cutting it... i think its more the fact i really really really just want to eat something tasty... im literally on the verge of tears dramatic i know but god im emotional the past couple days
I just want to eattttt
 
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