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Crohns and Modulen Diet

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Crohn's Disease
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Posted 2/28/2009 8:53 PM (GMT 0)
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

Posted 2/28/2009 8:58 PM (GMT 0)
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
Posted 2/28/2009 9:56 PM (GMT 0)
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.

Posted 2/28/2009 10:02 PM (GMT 0)
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
Posted 3/1/2009 2:35 AM (GMT 0)
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.
Posted 3/1/2009 10:19 PM (GMT 0)
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.
Posted 3/1/2009 10:31 PM (GMT 0)
Congratulations on coming this far!

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

Ivy.
Posted 3/3/2009 6:19 PM (GMT 0)
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?
Posted 3/3/2009 8:08 PM (GMT 0)
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.
Posted 3/3/2009 9:14 PM (GMT 0)
Kasper did you ask the person on the phone if you could have perhaps a half a case?
Posted 3/3/2009 9:15 PM (GMT 0)
:-) Congratulations on finally finding some, Kasper ! yeah Where did you finally get it from ?
Posted 3/3/2009 10:27 PM (GMT 0)
Thanks Writer - that may help as Ihave been drinking it fast! I will slow down and see if it works!
Posted 3/4/2009 3:05 AM (GMT 0)
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!!
Posted 3/4/2009 4:45 AM (GMT 0)
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)

Posted 3/4/2009 7:05 AM (GMT 0)
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...
Posted 3/4/2009 9:43 PM (GMT 0)
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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