Crohn's Disease Forum » Diet, Fitness, and Supplements » Trying EEN diet for 1st time


11-02-2018, 07:20 PM   #1
Howard123
 
Join Date: Nov 2018
Trying EEN diet for 1st time

Hey , Iím new here on this site and was hoping I could get some information about the EEN diet. To start off Iím now 19 years old and was first diagnosed when I was 14. Throughout my 5 years of being diagnosed I was on and off remicade due to insurance issues. Iíve had flare-ups about 4 times throughout those years and right now I am currently in a bad one but sadly the last gap between remicade treatments (due to insurance) left me with antibodies to remicade so it no longer works for me. I am now about 4 months into not having any medication and now Iím in a bad flare. I was thinking about trying the EEN diet next week but I wanted to know how many bottles of ensure plus I should take , how long typically, and if it helped any of you!!! Iím asking here because right now my insurance isnít active and I want to take matters into my hands instead of living in pain for the rest of my life Hopefully one of you can help me with info or let me know your experience with EEN diet (Iím trying to attend college on campus instead of online courses and be social again with friends and family)
11-02-2018, 07:24 PM   #2
Howard123
 
Join Date: Nov 2018
Forgot to add that since my insurance isnít active , I canít even get a appointment with my doctor to discuss how many bottles I should take and for how long. So once again hopefully one of you guys can help me so I can began to fight back against this disease
11-08-2018, 02:32 AM   #3
hugh
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I've never done EEN but have heard that it is great to reduce symptoms and get back on track.

The big question is 'Then What?'

check this podcast and if it makes any sense then start looking at paleo-ish diets.....
Your Diet Is Fine, Your Lifestyle Sucks | Michael Ruscio on Health Theory
https://www.youtube.com/watch?v=81Hsmhq73Uk
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11-10-2018, 08:28 AM   #4
my little penguin
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Ds has done EEN 3-4 Times
He was dx at age 7 and now is almost 15
Een is expensive unless covered by insurance
Some can use ensure or boost (polymeric formula )
But most need semi elemental (peptamen)
Or even elemental formula (vionex )

Ds had to drink the same amount of calories that he would need to eat in a day anywhere from 2000 to 2700 calories depending on age /weight /growth needed

Childrenís of Philadelphia uses 90/10 or 80/20 as maintenance programs to treat
To reduce inflammation Ds was given 8-10 peptamen jr shakes a day
No other solid food just water for 9 weeks
He now drinks elemental formula -neocate jr as a supplementary nutrition/treatment
Of 32-40 oz a day in addition to food and other meds

Chop study was after the 6-8 weeks of only formula
To slowly add in food
Some could tolerate 10% of their calories from solid food and the rest from formula
Others could tolerate up to 20% of their diet to be solid food and the rest formula
This meant formula was used long term to treat

It doesnít work for everyone
I know a lot of kids /parents who tried
But worth a shot

Please apply for public medical assistance (Crohns qualifies) to get insurance
You need monitored. By a GI
Talk to your student health at college
They may have social workers who can help you get the right forms etc...
https://www.google.com/amp/s/gutsand...s-disease/amp/

https://media.chop.edu/data/files/pd...et-ibd2016.pdf
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11-10-2018, 08:32 AM   #5
my little penguin
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11-10-2018, 10:27 AM   #6
Maya142
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I'd apply for Medicaid if you have no insurance currently. You really need a GI monitoring you.

If you're trying to do EEN on your own, then I guess all you can do is try polymeric formulas and hope that you can tolerate them!

I'd get a couple bottles first and not a whole case, so you don't waste money in case you cannot tolerate the formula.

So I would try Boost or Ensure or Orgain. Typically EEN is done for 6-8 weeks. Some hospitals, like MLP said above, allow kids to do 80% formula and 20% food or 90/10.

As for calories, generally a dietician or your GI would advise you on that. If you do not have access to one, I would look up the number of calories required for an active 19 year old male. I would go by that if you can't see a nutritionist or dietician and actually, you can even add an extra bottle because many Crohn's kids/teens need more than regular kids/teens.

Things that tend to help kids drink - use a straw and make sure the formula is cold. Try different flavors. And take it one day at a time.
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diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-10-2018, 12:47 PM   #7
pdx
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So sorry that you're having to deal with Crohn's without insurance. IBD is hard enough without that worry. I agree with the advice above. While EEN can be very effective for reducing symptoms and starting the healing process, you'll need a maintenance treatment too, and that will require you to have a GI doctor and insurance.

As others have mentioned, your school's student health service should be able to help you figure out how to get low-cost or free insurance depending on your situation. Where do you live? (Are you in the US? And if so which state?) You might also want to post on the main forum here, asking for advice about getting low cost insurance. I think that there are several forum members with Medicaid coverage.
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Daughter E (16) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
11-10-2018, 06:00 PM   #8
ncman
 
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Location: United Kingdom

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I've done EEN as an adult, and used elemental E028 for 2.5 - 3 weeks (although I'm not sure if Nutricia are continuting to make this). Semi-elemental formulae can be equally effective.

In terms of maintenance, you need to then transition onto an elimination diet - the LOFFLEX diet is a good starting point. It is possible to remain on the dietary treatment by leaving out any foodstuffs to which you react to.

Do make sure you are monitoring your progress through with bloods / calprotectin tests at regular intervals.
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Advocate of the dietary treatment of Crohn's, as detailed in The essential guide to controlling Crohn's Disease, Colitis and Other IBDs by Professor John Hunter

Other supplements as needed: Adcal D3, Sytron (liquid iron, much more gentle on the stomach)
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