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


 
03-14-2009, 08:25 PM   #31
Kittee
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Thanks Nat! I guess I should check out the elemental one then. I just don't want to be on Pred/REmicade forever.
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03-16-2009, 02:21 PM   #32
colin84
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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.
03-16-2009, 03:57 PM   #33
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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.
03-16-2009, 04:10 PM   #34
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Colin thats great news!
03-21-2009, 01:07 PM   #35
kasper87
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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.
03-21-2009, 01:41 PM   #36
colin84
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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!
03-21-2009, 04:21 PM   #37
kasper87
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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.?
03-21-2009, 06:02 PM   #38
colin84
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No you are not supposed to eat any food with it. The idea is that it completely rests the bowel.
03-21-2009, 07:30 PM   #39
kasper87
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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?
03-22-2009, 03:47 AM   #40
colin84
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Most research indicates that you should be on it for 8 weeks and that it can take 5 weeks for it to start working.
04-03-2009, 10:14 AM   #41
colin84
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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!
04-27-2009, 01:02 PM   #42
crohn's can suck it
 
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
04-29-2009, 06:27 AM   #43
colin84
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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.
07-16-2013, 02:07 AM   #44
rollinstone
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hi Colin, just wondering how you are doing now? Also, anyone else on liquid diet noticed they get bad breath after a while?
07-16-2013, 12:14 PM   #45
kiny
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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.
07-16-2013, 12:16 PM   #46
kiny
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Also, anyone else on liquid diet noticed they get bad breath after a while?
not me
07-16-2013, 12:18 PM   #47
kiny
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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.
07-16-2013, 10:05 PM   #48
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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
07-16-2013, 11:36 PM   #49
kiny
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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.
07-16-2013, 11:40 PM   #50
kiny
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(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.
07-18-2013, 04:43 AM   #51
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Thanks for that kiny
07-18-2013, 08:23 AM   #52
Amy2
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16 year old son drank only Peptamen for 6 weeks and he did go into remission.
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07-19-2013, 05:05 AM   #53
Spooky1
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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.
12-30-2013, 08:31 AM   #54
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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.....
12-31-2013, 08:04 AM   #55
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wow, its hard to love food with Crohn's, lol. Good luck with this and I hope it works for you. keep us informed, Emmy.
01-02-2014, 04:59 PM   #56
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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...
01-02-2014, 05:22 PM   #57
Spooky1
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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.
01-02-2014, 06:34 PM   #58
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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.
01-03-2014, 08:51 AM   #59
Spooky1
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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.
01-03-2014, 09:16 AM   #60
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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!

Last edited by Emmy; 01-04-2014 at 12:24 PM.
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