Modulen Update

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colin84
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 5/23/2009 2:15 PM (GMT -7)   
Hello everyone
 
Haven't posted for a while so thought I would give you an update. I am now on a mixture of food and drinking the modulen. I am still symptom free (been this way since end of Feb) and my blood results are normal. After years on Pred and a cocktail of other medication I am now not taking anything apart from the modulen which seems to be doing wonders.
 
Hope that gives hope to people.
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
Azathioprine/Imuran 125mg

But my miracle drug is MODULEN - I have achieved remission for the first time since 2003 being on this!
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/23/2009 5:17 PM (GMT -7)   
Fantastic news, Colin. Thanks.
Co-Moderator Crohn's Forum.

New meds thread


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/24/2009 11:37 AM (GMT -7)   
That's amazing!! I'm so happy to hear you're doing well!
I wish I could try this but I have no idea how to get it without being in the negative financially.
It's to know at least that it works for some people :)
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


conker21
Regular Member


Date Joined May 2009
Total Posts : 72
   Posted 5/26/2009 2:53 AM (GMT -7)   
Hi Colin,

I'am so happy to hear this! I am starting modulen tomorrow for 8 weeks so hoping it will do the same for me!

Have you got any advice when taking it? Did you gain any weight from this (i really need to gain some)?

When did you introduce foods and was it just bland food to start?

Thanks Kaylea

colin84
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 5/26/2009 3:04 AM (GMT -7)   
Hi Kaylea

My advice is get someone to take all the food in your house away so there is no temptation. The first 3 weeks are the hardest but after that I found the thought of food didn't really appeal to me.

I have now been on food since beginning of April. I am still taking it slow and my main source of food is modulen. I have basically tried all the meats and found pork is no good for me as it makes me flare. However a day back on modulen only got me out of the flare. I have introduced potatoes as well which is fine for me.

The other tip I have is to mix some of the Nestle Crusha in as it helps give it a better taste. I won't lie - its not the greatest tasting thing but I think it tastes better than ensure and all those drinks.

I have put on nearly 3 stone since the end of February which was much neaded!
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
Azathioprine/Imuran 125mg

But my miracle drug is MODULEN - I have achieved remission for the first time since 2003 being on this!
 


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 5/26/2009 3:57 AM (GMT -7)   
you would be a rich man reselling that stuff to the healingwell americans lol
SCD since 01, remission since 01, occasional random junk food breaks :)
No meds ever.


conker21
Regular Member


Date Joined May 2009
Total Posts : 72
   Posted 5/27/2009 4:17 AM (GMT -7)   
Thanks for all your advice i keep you updated im half way thru my first day, felt really sick this morning after taking my first one!

The gain weight it what i want im only 7st so i need it too.

Speak soon
Currently age 21, on 8 pentasa day and start Nestle Modulen very soon!
Diagnosed with Crohns in 2006
Live in the UK
 


colin84
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 5/27/2009 5:27 AM (GMT -7)   
Where abouts in the UK are you?
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
Azathioprine/Imuran 125mg

But my miracle drug is MODULEN - I have achieved remission for the first time since 2003 being on this!
 


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 5/27/2009 5:58 AM (GMT -7)   
Kaylea,

Try drinking it more slowly. That may prevent the nausea. For example, sip the contents of the can over 15 minutes or half an hour.

Hope you are feeling better this morning.

conker21
Regular Member


Date Joined May 2009
Total Posts : 72
   Posted 5/28/2009 1:40 AM (GMT -7)   
Near Guildford so not far from London.

Yesterday went ok especially now i got the diffrent flavours to try, but still think it gonna be a struggle.
It just weird not eating!
Currently age 21, on 8 pentasa day and start Nestle Modulen very soon!
Diagnosed with Crohns in 2006
Live in the UK
 


conker21
Regular Member


Date Joined May 2009
Total Posts : 72
   Posted 6/16/2009 4:29 AM (GMT -7)   
Hi
I am after Colin84 for a but of advice iam 3 weeks into being only on Nestle Modulen really struggling when did u start trying food was it after 8 weeks, i also take pentasa do you think i should slowly come of this or took to doc before doing this?

I miss food so much =-(

Kaylea
Currently age 21, on 8 pentasa day and start Nestle Modulen very soon!
Diagnosed with Crohns in 2006
Live in the UK
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 6/16/2009 4:54 AM (GMT -7)   
Hi Glad to hear you are doing so good ,do you have to mix it or is it pre -mixed? Good sign when you are gaining weight. Introducing foods back also gives a bonus of finding out what is and is not good for you. Any idea how long you will be on the modulen? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~Blessed are they that have the joy of helping others~ Moderator gail


conker21
Regular Member


Date Joined May 2009
Total Posts : 72
   Posted 6/17/2009 5:08 AM (GMT -7)   
Its like baby milk just add water!
Currently age 21, on 8 pentasa day and start Nestle Modulen very soon!
Diagnosed with Crohns in 2006
Live in the UK
 


penelope-marie
Regular Member


Date Joined Sep 2008
Total Posts : 54
   Posted 6/18/2009 1:40 AM (GMT -7)   

I am very interested in this as I have been on a liquid food diet since having an abscess and have found my crohns is fine tho I have definately put on weight so my body is absorbing the nutrition. Mine isnt modulen tho, its called enteral food and it comes in different flavours. Its best to keep it in the fridge as it tastes better cold and sipping it slowly is a good idea.

 I have seen research showing that these liquid foods are as effective as prednisilone for dealing with a flare up of crohns and without the nasty side effects. My only worry is that it does contain sugar and I am concerned about getting candida which is linked to leaky gut? 

I am gradually introducing food like mashed potato, sweet potato, liquidised vegetables, tofu, fish, fruit puree and so far its ok and if theres a problem I go back to the liquid food. I am tolerating it fairly well been doing it 3 months now, but sometimes you get despeerate for something to chew or crunch! But its worth it compared to a flare up of crohns.

Can someone tell me where you get the modulen? I am based in UK - is it something you can get from a chemist? Thanks for introducing this topic I wish doctors would consider this before prescribing steroids.


had crohns for 15 years took pentasa then nothing but diet but stricture appeared 3years ago and problems since.


conker21
Regular Member


Date Joined May 2009
Total Posts : 72
   Posted 6/18/2009 3:18 AM (GMT -7)   
I went to see my Specilist nurse after a bad flare up and she suggested this straight away it does sound alot like u got now.
This is from there website
'Modulen® IBD is a whole protein powdered formulation for use as a sole source of nutrition during the active phase of Crohn’s disease and for nutritional support during the remission phase. It is 100% casein based and naturally rich in Transforming Growth Factor Beta 2 – and provides 25% of fat as MCT. Modulen® IBD is a nutritionally complete Food for Special Medical Purposes for use under medical supervision'
http://www.nestlenutrition.co.uk/healthcare/gb/products/Pages/ProductDetails.aspx?p=Modulen%c2%ae+IBD

Have a look or talk to your specilist to see what they think? It is hard thou good luck
Currently age 21, on 8 pentasa day and start Nestle Modulen very soon!
Diagnosed with Crohns in 2006
Live in the UK
 


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 6/18/2009 8:05 AM (GMT -7)   
Penelope-Marie,

Modulen is also an enteral food, just like the product you have. All these formulas work the same way, some people do better with one one and some with another, but if you're doing fine on your current one, there's no reason to switch. I'm guessing you might be on one of the formulas made by SHS International? Their products are pretty popular in the UK.

Don't worry about the sugar content. All carbohydrates we eat are broken down in our body into simple sugars anyway. The only difference with the formula you're drinking is that the carbohydrates have been "predigested" (already broken down into simpler sugars) so you gut doesn't have to do as much work.

I hope you and Conker continue to feel better.
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