For those who have done EEN, what is your selection of the formula?

[asadmom]

Hi there, just wondering for those who tried EEN in the past (however long or short it might be...), what is your choice of the formula and how you came to decide on a provider (doc rec, google search and reviews, etc.)?

I was given Kate Farms by our doc to try. It is not bad at all but too sweet in my opinion (can dilute). Wanted to reach out to the community to see what others' experiences have been.

Thank you!

 

[my little penguin]

You can NOT dilute formula
It’s nutritional complete
It’s designed to give your CHILD the daily amount of nutrition needed to grow and gain weight
Een means exclusive enteral nutrition- no solid foods or other forms of nutrition.
Children have much different nutritional requirements than adults .
You can only use pediatric formula that is nutritional complete
You need to follow the advice of your child’s gi
They will tell you how much formula is needed per day and how long your child needs to stay on een
They also will determine which type of formula
Polymeric
Semi elemental
Or elemental is required for your child’s current situation
Children with inflammation need proper nutrition
In formula this is made from sugar (carbohydrates) fats and lipids
In the case of elemental formula this is broken down further into plain amino acids which what the body turns all food and formula into anyways .

please discus this with your child Gi
Formula should never be watered down or frozen
Doing so can cause more harm than good

standard course of een for children is 6-8 weeks
With no other solid food
This is when it used instead of steriods to reduce inflammation

 

[my little penguin]

Also at age 11 puberty is starting soon
Which means massive weight gain first then Growth
So getting into remission faster is key as well as getting good solid nutrition
In the form of een to get inflammation down
And later supplemental formula plus food once humira has taken over
Puberty is extremely diffcult time for crohns kids
Since meds have to work harder (all the chemical changes of puberty promote inflammation) sp staying in remission is very diffcult
Proper nutrition helps a lot through formula
Even though the ingredients in formula are NOT. what you would normally feed your kiddo
When formula is combined with good food and the right meds
-kids can grow and heal
Ds is on the other side and it was a battle but he definitely grew and gained weight
Compared to some other we knew with crohns who refused to add formula (much smaller folks at the end of puberty )
My kiddo used peptamen jr and later neocate jr
If you saw him on the street you would never know he ever had crohns
He reached his predicted his eight and weight from age 2
Which is amazing conserved most crohns kid dx very young do not

 

[asadmom]

Thank you @my little penguin!

Yes, Kate Farms is what was given to us to try from our GI doctor. She said it's very good since it doesn't use dairy. She didn't prescribe EEN but I was just wondering how others have to come to use EEN and how they narrowed it down to a brand.

I will certainly speak to our dietitian about it but right now I am just learning about the process and what others experience has been.

 

[my little penguin]

Others used een when prescribed by their Gi for their child
It is not recommended to pull all food and place your child on een unless under the order of a physician since this is extremely difficult for the child .
Brand is dependent on the Gi and what your durable medical equipment company (through your insurance) covers and carries in stock .
Specialty formula at 8-9 cartons a day for 8 weeks can be expensive
Insurance does cover it as a infusion therapy supplies .


Milk protein is NOT an issue unless your child is lactose intolerant
My ibd kiddo has no issue with milk
We do not avoid proteins unless ordered to do so by a doctor
Ds has food allergies - avoiding foods can cause food allergies in those who already test positive for food sensitivity’s but have not developed a true IgE allergy (life threatening version) to the food yet
My other non ibd child is Lactose intolerant and must avoid all forms of milk

there are plenty of papers on een succes rate in children
All state the same thing
Success is not dependent on the type of formula used
Polymeric formula is just as effective as semi elemental or elemental formula

 

[my little penguin]

https://crohnsforum.com/threads/must-read-valuable-resources-for-parents.35679/
Start here
Tons of papers and resources

 

[my little penguin]

https://crohnsforum.com/threads/paediatric-ibd-articles-and-research.43002/Research papers

 

[Pangolin]

The only one my son has liked enough is Pediasure, and the semi-elemental version Pediasure Peptide. The semi-elemental version produced better results.

 

[asadmom]

There are a ton of research backing up the effectiveness of the big names in inducing remission and none for Kate Farms. From the forum discussions, it doesn't look like there is a success story with Kate Farms unless its used as a supplement.

Yeah, my son is lactose intolerant... Modulen is milk based so I guess that is out of the question then.

 

[jadegreen]

Let me point out, though, that just because a formula contains milk protein, it doesn't mean it contains lactose. I'm quite lactose intolerant. Lactose and peanuts are the only two things that give me diarrhea, but I drank two different milk-protein shakes because they don't have lactose (I used Orgain and Modulen).

 

[jadegreen]

(and note, I was constipated the whole time I was on EEN)

 

[asadmom]

(and note, I was constipated the whole time I was on EEN)

This is exactly what I was wondering! How did you resolve it?

 

[jadegreen]

Well, part of the trick was drinking a load of water, but I found it tough when I was already drinking so much liquid every day. my GI said I could use Miralax, which isn't my favorite, but I used it a few times. I think I also drank prune juice a few times, but tbh, I can't quite remember now.

I also found I needed to switch to a liquid iron supplement (Floradix) instead of the pill I was taking.

 

[asadmom]

Well, part of the trick was drinking a load of water, but I found it tough when I was already drinking so much liquid every day. my GI said I could use Miralax, which isn't my favorite, but I used it a few times. I think I also drank prune juice a few times, but tbh, I can't quite remember now.

I also found I needed to switch to a liquid iron supplement (Floradix) instead of the pill I was taking.

I got Floravital because of your recommendation! Havent tried it yet but I am looking forward to it.

Also, what do you think about taking magnesium for constipation (instead of miralax)?

 

[my little penguin]

@asadmom since your are talking about a child
With crohns and NOT an adult
You really need you Gi to weigh in on what extra supplements are used to treat constipation
Magnesium can cause other elements to be an issue
If you are just using supplemental formula WITH SOLID food to gain weight for your kiddo as was recommended by your child’s dietician/nutritionist
Then constipation/diarrhea are no longer an issue

if your child is flaring bad enough to need full EEN without food it’s not something you wait to do and you need your child’s Gi input on all of it

not what adults use or do

 

[asadmom]

@asadmom since your are talking about a child
With crohns and NOT an adult
You really need you Gi to weigh in on what extra supplements are used to treat constipation
Magnesium can cause other elements to be an issue
If you are just using supplemental formula WITH SOLID food to gain weight for your kiddo as was recommended by your child’s dietician/nutritionist
Then constipation/diarrhea are no longer an issue

if your child is flaring bad enough to need full EEN without food it’s not something you wait to do and you need your child’s Gi input on all of it

not what adults use or do

Our GI said take some vitamins. Don't need to get the expensive ones.

What do you make of that?

 

[my little penguin]

Taking vitamins is NOT the same as taking a supplement such as magnesium to treat constipation .

Did your child actually start full EEN?
Does your child have bad constipation from full EEN?
Are you only seeing /having one Gi direct your child’s care for Crohn’s disease or are you still seeing 4 or 5 different Gi’s with different instructions from each ??

Your child needs to have only one Gi
Pick only one
Otherwise it will be very confusing for you and your child.

And you can’t treat or plan treat symptoms your child doesn’t have yet for a medical treatment your child has started yet or been directed to start by your child’s Gi .

 

[Maya142]

I would go with your GI’s recommendation on constipation. We used Miralax or Milk of Magnesia if Miralax did not work. I also agree that you will need a primary GI who takes care of everything. Second opinions tend to be good for one time visits or to get another opinion but if you have multiple GIs directing care at once, then you may get conflicting instructions which could be dangerous.
As for vitamins, I would guess your GI meant that your child should take a multivitamin, if you’re unsure, you should check with him/her. And ask about a magnesium supplement if you want to but most pediatric GIs, in my experience, are going to suggest Miralax.
If your son is having constipation, make sure he’s drinking plenty of water as well as formula.
My daughter has been on Peptamen jr., Neocate and Vivonex. It can take some trial and error to find the right formula.

 

[asadmom]

I would go with your GI’s recommendation on constipation. We used Miralax or Milk of Magnesia if Miralax did not work. I also agree that you will need a primary GI who takes care of everything. Second opinions tend to be good for one time visits or to get another opinion but if you have multiple GIs directing care at once, then you may get conflicting instructions which could be dangerous.
As for vitamins, I would guess your GI meant that your child should take a multivitamin, if you’re unsure, you should check with him/her. And ask about a magnesium supplement if you want to but most pediatric GIs, in my experience, are going to suggest Miralax.
If your son is having constipation, make sure he’s drinking plenty of water as well as formula.
My daughter has been on Peptamen jr., Neocate and Vivonex. It can take some trial and error to find the right formula.

We ended up using Miralax and it helped.

Our second opinion doctor (he no longer takes on new patients after getting a full-time job at a biotech) reached out to another doctor (same hospital) to take us on so we are officially under the care of his referral. Our treatment hasn't changed tho we have learned a lot from the docs.

Yeah I ended up buying every brand that could be used for nutrition and my son has a few brands he likes and he is more motivated to drink when there are other brands/flavors available as a rotation.

 

[jadegreen]

Does it work if you are doing a rotation of brands? I did do a rotation of flavors within the same brand, but I didn't rotate between brands. I tried Modulen later down the line, after I had finished EEN, when I was doing 25% EN.

 

[jadegreen]

I imagine it could work, but I am not aware of any research about that to tell us either way.

 

[onolox]

All these formulas are overpriced, you can use:
-Normal whey(concentrated or isolated or hydrolyzed if lactose intolerant)
-Maltodrextrin
- Multivitamin/multimineral
- Some good quality oil

Mix in a blender.

 

[Ignotius]

maltodextrin!
multivitamins arent always ideal either, but i sure wouldnt want to rely on them solely....type of oil matters too....
i swear someone just needs to make an effort on a formula thats logical, but i know its hard to fit one everyone can make and do etc..

 

[onolox]

The big problem with malto or any high glycemic carb is that it spikes the insulin a lot, you can't "live" in a EEN because of that. You'll end up diabetic.
Yes the oil as studies shown, linoleic is preffered.


These formulas are not created for Crohn, this is why I use my own.
The best is to find a source of the ingredients that are pure, without additives or emulsifiers.

 

[Ignotius]

i think i am more concerned about e.coli than carbs...in regards to crohns...although i dont like either of them....

in regards to the oil im looking more about how easy it is to break down and how the body uses it...like how long the chains are then favoring MCT or natural as possible animal fats...

im not trying to do EEN tho....just a sort of soft food thing but with a nutrient/fiber balance...

 

[patulsius]

All these formulas are overpriced, you can use:
-Normal whey(concentrated or isolated or hydrolyzed if lactose intolerant)
-Maltodrextrin
- Multivitamin/multimineral
- Some good quality oil

Mix in a blender.

I am really willing to try this diet finally, since biologics are not being effective with my crohn´s. Could you please tell me what would be the amounts to mix of each ingredient to make a drink?

 

[onolox]

Basically, pick up the formula of one you like, calculate the percentage of carbs, protein and fats. Then calculate again using what you have.
You have to ingest an amount of 2000 cal to 2500 a day for an male adult.

But if you are a total noob in diets and nutrition I recommend to use a commercial formula.

 

[patulsius]

Basically, pick up the formula of one you like, calculate the percentage of carbs, protein and fats. Then calculate again using what you have.
You have to ingest an amount of 2000 cal to 2500 a day for an male adult.

But if you are a total noob in diets and nutrition I recommend to use a commercial formula.

Thank you, what about the vitamins? is there a way to avoid overdosing?

 

[onolox]

Just pick up any that is 100% of IDRn and at least 23 types.

 

[patulsius]

Since Maltodextrin causes me diarrhea and it is probably a carbohydrate to avoid for several health issues, I am replacing malto for dextrose, a simple carbohydrate. I do notice that my home made formula is much better tolerated than those commercial products such as fortimel.

 

[Waldo]

Since Maltodextrin causes me diarrhea and it is probably a carbohydrate to avoid for several health issues, I am replacing malto for dextrose, a simple carbohydrate. I do notice that my home made formula is much better tolerated than those commercial products such as fortimel.

Patulsius, would you be willing to share your home made recipe?

 

[patulsius]

Patulsius, would you be willing to share your home made recipe?

Basically, my recipe is a mix of:
Water + Whey + Dextrose (instead of Maltodextrine) + MCT Oil + Multivitamin
Or
Milk Shake + Whey + MCT Oil + Multivitamin

As I said before, I used to mix it with maltodextrine but that caused me a severe diarrhea and other gastrointestinal issues. This was solved replacing maltodextrine, which in my case was never tolerated, by dextrose. Since then I can drink it without any problem.

I also tolerate milk very well. So, sometimes I use milk shakes instead of water+dextrose. I mix those together with the basic recipe and this add some variety to my liquid diet and it is also more palatable and enjoyable.

I just try to stick to this diet for a few days. As soon as my body feels better I go back to a fodmap diet. If suddenly my body tells me that something is going wrong I start with the elemental diet again.

By the way, I suffer from Crohn's Colitis, so my inflamation is on the large bowel. I believe this is also a very important factor to take into account when preparing those drinks since those who suffer from other type of Crohn's might not tolerate my formula and they will have to remove milk because of lactose intolerance.

 

[Waldo]

Basically, my recipe is a mix of:
Water + Whey + Dextrose (instead of Maltodextrine) + MCT Oil + Multivitamin
Or
Milk Shake + Whey + MCT Oil + Multivitamin

As I said before, I used to mix it with maltodextrine but that caused me a severe diarrhea and other gastrointestinal issues. This was solved replacing maltodextrine, which in my case was never tolerated, by dextrose. Since then I can drink it without any problem.

I also tolerate milk very well. So, sometimes I use milk shakes instead of water+dextrose. I mix those together with the basic recipe and this add some variety to my liquid diet and it is also more palatable and enjoyable.

I just try to stick to this diet for a few days. As soon as my body feels better I go back to a fodmap diet. If suddenly my body tells me that something is going wrong I start with the elemental diet again.

By the way, I suffer from Crohn's Colitis, so my inflamation is on the large bowel. I believe this is also a very important factor to take into account when preparing those drinks since those who suffer from other type of Crohn's might not tolerate my formula and they will have to remove milk because of lactose intolerance.

Thank you very much for sharing this.
Just had a go at it, and its not that bad. For a batch I am using dextrose (150g) but I exchanged the whey for soy protein powder (40g) because I'm eating plantbased, and cold pressed coconut oil (33g) because I could not find MCT oil in any store. Also, I added a small splash of orange juice for flavour.
So I guess I have cheated and my recipe is not 100% EEN For a week I will try to eat: rice & buckwheat flour porridge for breakfast, vegetable soup for lunch, and this for afternoon/dinner for a week, and see if that will help settle my CD. My inflammation is also in the colon.
I suppose its important to drink it slowly, in order to blunt the blood sugar spike. So I sip it in 30-45 mins, stirring occationally as it will separate in the glass.

 

[Waldo]

Well that blend I mentioned above only made it worse. I stopped and I am now focused on getting rid of some mayor stressors in my life. I suspect stress plays a much bigger role in my IBD than I have been aware of.

 

[patulsius]

I do not understand why commercial formulas keep using maltodextrine when it may worsen Chron's Disease or, at least, cause several gastrointestinal issues.

 

[kiny]

Maltodextrin is a name that represents many entirely different substances.

Maltodextrin is made by hydrolysing corn or rice starch. When you cook this starch and add enzymes, it will break that starch down into glucose syrup, the process is called hydrolysis. The resulting white powder is called maltodextrin.

Depending on the duration of the hydrolysis process it can create very different substances with a different dextrose equivalent, glucose, glucose syrups, maltodextrins, fructose, etc. When you buy something named "maltodextrin", you have no way to knowing what you're actually consuming unless you ask them how they manufactured it. You could be consuming something very different compared to the maltodextrin found in the EN you are trying to mimic.

The duration of the hydrolysis process not only influences the taste and how sweet the maltodextrin is, it influences how it is absorbed.

 

[kiny]

Regarding the study showing the growth of E Coli in a maltodextrin petri dish. The type of Maltodextrin found in EN is so readily absorbed that I would be surprised if any of it ever reaches the distal small intestine to begin with. How EN is absorbed in the intestine and what happen in a petri dish are not comparable.