Crohns and Modulen Diet

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colin84
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 2/28/2009 1:53 PM (GMT -7)   
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

colin84
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 2/28/2009 1:58 PM (GMT -7)   
As my specialist has prescribed it, it means I get it on the National Health Service whice is free in the UK so hopefully it will be successful

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 2/28/2009 2:56 PM (GMT -7)   
I did not use Modulen since it is hard to obtain here. I have used two other Nestle Products, Nutren and Peptamen. I was on Nutren exclusively for 8 weeks, and during that time I went into remission--probably after about 5 weeks. I felt very good and my bloodwork matched how I felt. Since then (last April) I usually have 1-2 cans a day and otherwise eat whatever I want within reason (I have a stricture).
 
I had a hard time staying in complete remission after stopping the diet, and did go on Entocort for a little while last summer. Most doctors here do not support enteral nutrition and they were not helpful regarding how to reintroduce foods either. You should talk to your doctor about trying an elimination diet when you start to reintroduce food. That would help you to determine what foods are triggering your disease/discomfort. You would need the assistance of a nutritionist.
 
Sticking to the liquid diet is easy while you don't feel good. It becomes much harder once you start to feel better! I recommend trying it for 8 weeks. If you have any specific questions I am happy to help.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying... Enteral Nutrition, Flax Oil, VSL#3, Folic Acid, Vitamin E


colin84
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 2/28/2009 3:02 PM (GMT -7)   
Thanks for the reply. It seems that the hardest part of this diet is sticking to it! I think my specialist is going to go along the lines of reintroducing food groups one at a time. The good thing about modulen is that when mixed with the flavourings it is very palatable and fills you up instantly so any food cravings disappear. However saying that, I am only on day 5 so long long long way to go!

I have never been keen on doing this before but the fact that I have been in hospital on nil by mouth it seemed the perfect time to start from scratch and give it a good go and see what happens

BuzyBum
Regular Member


Date Joined Feb 2004
Total Posts : 122
   Posted 2/28/2009 7:35 PM (GMT -7)   
I was on the Elemental diet for 6 weeks. It didn't put me in remission, it was hard to stick to and I was ravenous the whole time. Didn't help that he put me on steroids at the same time. Might be easier to stick to if you're not on steroids. Good luck with it.
37yr old woman UK. Diagnosed with crohns in 95. Currently on 2400mg asacol, 100mg Azathioprine. Been on Remicade once which worked well for me, but they took me off it. Flared up again. Took Humira but it didn't seem to agree with me, but thinking it was now an infection rather than side effects from Humira. Now back on Remicade, had 3 infusions so far and no reactions as yet. Consultant wants me to have a colostomy bag fitted, I've refused and want to try as many options as possible. On Elemental 028 extra diet for 6 weeks.


colin84
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 3/1/2009 3:19 PM (GMT -7)   
I am on steroids at the moment and have nearly lasted a week which I am pleased about. All the stomach pains have gone which is an encouraging sign.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/1/2009 3:31 PM (GMT -7)   
Congratulations on coming this far!

Keep on keeping on, and please do keep us posted on how you're feeling.

Ivy.
Co-Moderator Crohn's Forum.


colin84
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 3/3/2009 11:19 AM (GMT -7)   
1 week gone without food and I am feeling better which is a good sign! However I have got very bad diarrhea today - having a colostomy makes it quite difficult to cope as it leaks through and I seem to have spent the whole day changing bags. I have ulcers on the skin around the stoma caused by the crohns so despite feeling better in myself its been a difficult day!

Has anyone else experienced diarrhea whilst being on modulen or any other liquid diet?
24 year old male from London
Crohns since 2002, Colostomy in 2002 and Small Bowel Resection 2005
Have tried Infliximab (Remicade) and Adalimumab (Humira)
Numerous spells on Prednisolone 40mg, Suspected Abscess in June 2007 - treated with antibiotics
Flare up in Feb 09 resulted in 2 week hospital stay
Now out and on Modulen - no food for ideally 8 weeks ARGH!!!!!
Also on Azathioprine 125mg
 


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 3/3/2009 1:08 PM (GMT -7)   
I do if I drink the liquid diet too fast. I know it's a pain, but if you can slow down and sip the formula slowly over a longer period of time, that may help.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/3/2009 2:14 PM (GMT -7)   
Kasper did you ask the person on the phone if you could have perhaps a half a case?
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 3/3/2009 2:15 PM (GMT -7)   
:-) Congratulations on finally finding some, Kasper ! yeah Where did you finally get it from ?

colin84
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 3/3/2009 3:27 PM (GMT -7)   
Thanks Writer - that may help as Ihave been drinking it fast! I will slow down and see if it works!
24 year old male from London
Crohns since 2002, Colostomy in 2002 and Small Bowel Resection 2005
Have tried Infliximab (Remicade) and Adalimumab (Humira)
Numerous spells on Prednisolone 40mg, Suspected Abscess in June 2007 - treated with antibiotics
Flare up in Feb 09 resulted in 2 week hospital stay
Now out and on Modulen - no food for ideally 8 weeks ARGH!!!!!
Also on Azathioprine 125mg
 


Wild_Swan
Regular Member


Date Joined Apr 2007
Total Posts : 89
   Posted 3/3/2009 8:05 PM (GMT -7)   
Please be careful when you are eating again with regards to eliminating foods - i did that and was exculding loadsa stuff i shouldn't have been- my diet wasn't at all balanced so make sure a dietician follows you up.

And I was on ensures for the liquid diet - my first time I was great on them! It's an individual thing to how you go. & modulen gave me diarrhoea before as well - sip them really slow - like take an hour if you have to- it might settle when your gut gets used to it but if it continues tell your consultant. good luck!!
 
 


chachka
Regular Member


Date Joined Apr 2006
Total Posts : 21
   Posted 3/3/2009 9:45 PM (GMT -7)   
Hello,

My son has been using enteral nutrition for almost three years now as a main treatment for his CD and main sores of nutrition. First formula that put him into remission was Modulen. Unfortunately it's not available in the US anymore. My son prefers this formula over the Peptamen and Nutren. The only side effects from the formula my son experienced in the first several month was loose stool and urgency to go to the bathroom (which are not his CD symptoms).

It's very important to use Modulen drinks exclusively. You can have some diluted clear juices (my son drinks just organic apple juice), some people have clear lolly pops but I never gave them to my son.

For my son it takes from 8 to 16 weeks to achieve remission. Reintroduction of foods never lasted long for him unfortunately. We tried very very carefully with one food every 10-14 days approach but when something does not agree with him he has flares and taking this particular food from his diet does nothing so every time he needs to start over with the exclusive liquid diet. This time he is not eating since last September (with a tiny Thanksgiving exception that caused him a bad flare).

If you'd like you can order a book from amazon.com that's called IBD Remission Diet by Jinny Patel Thompson. It contains nice summery of foods from less to most aggravating.

Sorry for my English and good luck.

Chachka (almost 13 y.o. son with CD, exclusive enteral nutrition, LDN cream, Digestinol)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 3/4/2009 12:05 AM (GMT -7)   
Kasper, I would be really interested to know where you found yours and if your insurance covers it by any chance? I really want to try this...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 5 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 3/4/2009 2:43 PM (GMT -7)   
eyes Well, I suppose you won't have a grocery bill....! smilewinkgrin Best of luck with it. If only something that simple could take the medical world by storm and solve all our Crohnie conundrums !
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