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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Modulen Diet for Crohns


 
03-01-2009, 05:16 PM   #1
colin84
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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
03-02-2009, 09:23 PM   #2
BillthePill
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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.
03-02-2009, 09:36 PM   #3
GoJohnnyGo
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I've read Nestlé isn't distributing Modulen IBD in North America anymore.
03-04-2009, 03:24 AM   #4
colin84
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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....
03-04-2009, 04:48 AM   #5
soupdragon69
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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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Last edited by soupdragon69; 03-04-2009 at 05:00 AM.
03-05-2009, 07:40 AM   #6
colin84
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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!!!!
03-07-2009, 05:04 AM   #7
emma nd livvy
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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

Last edited by emma nd livvy; 03-07-2009 at 05:06 AM.
03-07-2009, 09:24 AM   #8
colin84
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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!
03-07-2009, 02:21 PM   #9
emma nd livvy
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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
03-08-2009, 10:43 AM   #10
colin84
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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......
03-08-2009, 12:00 PM   #11
emma nd livvy
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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
03-08-2009, 12:05 PM   #12
colin84
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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!
03-08-2009, 12:11 PM   #13
emma nd livvy
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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
03-08-2009, 04:28 PM   #14
colin84
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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!!!
03-09-2009, 11:46 AM   #15
Stevo
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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
03-09-2009, 07:01 PM   #16
colin84
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Thanks Stevo - I am adding flavours and find it ok - just miss food!

How are you know you have come of it?
03-09-2009, 09:04 PM   #17
Kittee
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I'm going to talk to my Dr. about this.
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03-10-2009, 11:24 AM   #18
colin84
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I highly recommend it so far.........

No stomach pains. d has gone. Still a bit fatigued but I can function
03-13-2009, 04:36 AM   #19
NatalieMT
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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!
03-13-2009, 08:27 AM   #20
colin84
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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!
03-13-2009, 03:13 PM   #21
Modulen87
 
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.
03-14-2009, 03:45 PM   #22
colin84
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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.
03-14-2009, 05:35 PM   #23
kasper87
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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.
03-14-2009, 06:01 PM   #24
Kittee
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Would it be illegal to have this shipped to the states from a friend in the UK?
03-14-2009, 06:31 PM   #25
colin84
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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
03-14-2009, 06:49 PM   #26
Kittee
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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.
03-14-2009, 07:52 PM   #27
kasper87
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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?
03-14-2009, 08:00 PM   #28
NatalieMT
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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.
03-14-2009, 08:09 PM   #29
Kittee
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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/
03-14-2009, 08:13 PM   #30
NatalieMT
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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.
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