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Crohn's Disease Forum » Treatment » Adults using EEN


09-19-2017, 09:06 PM   #1
Magnolia24
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Adults using EEN

My Crohn's seems to be flaring back up. My GI is encouraging me to begin either 6MP or a biologic. If I choose to begin a biologic I will not be able to start until November because of a round of vaccination I need to complete. In the meantime, she is hesitant to prescribe prednisone because it can affect the efficacy of biologics, but will prescribe it if this flare continues. After my appointment I remembered learning that EEN can be as effective as steroids in inducing remission, but are usually used with kids. I'm wondering if this could be a good alternative to prednisone, and would love to hear from folks who've tried EEN.
09-19-2017, 09:30 PM   #2
my little penguin
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Adults can use een
But most don't stick with it due to taste and social issues
Also just like kids the longer you have had the disease the less likely it will work


https://bmcgastroenterol.biomedcentr...876-016-0564-7

http://onlinelibrary.wiley.com/doi/1...13934/abstract

https://secure.jbs.elsevierhealth.co...ode=ygast-site

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4352452/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3837264/

Those should help

Tagging little miss
Happy
and cat-a-tonic
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09-20-2017, 07:05 AM   #3
Cat-a-Tonic
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I did 2 weeks of EEN (Vivonex) along with steroids last year. I had a terrible flare, lost 17 lbs in a month, was having diarrhea 20+ times per day and couldn't seem to digest any food. At that point I was hospitalized, put on IV steroids and EEN. When I was released from the hospital, I went from IV steroids to oral pred. I stayed on the EEN for 2 weeks after being released. It was definitely challenging, but worth it. It is an acquired taste for sure. I only tried Vivonex, and I can tell you that it doesn't taste like food. The taste of it, it reminded me of things like horses and wood chips. It's hard to describe but it's basically the opposite of delicious - although, I could tell it was doing good things for me, and I came to enjoy drinking it and even craved it at times, so it is totally possible to get used to the icky taste.

The one roadblock I ran into was, insurance doesn't like to cover EEN unless you're doing it for tube feeding, which I was not. My insurance company said that if I was just drinking it orally, they consider that a "grocery item" and therefore it's not covered, even though it was literally the only thing I could digest at that time. Ugh. It's quite pricey too. It was over $600 for a 2-week supply. I would have liked to have been on EEN even longer, but I couldn't afford any more than that. So be prepared to fight with the insurance company about that, and see if your doc or nutritionist/dietician have any free samples of EEN that you can try. For me, I have trouble with coconut and coconut oil, and a lot of EEN formulations have coconut oil in them, so Vivonex was pretty much my only option.

EEN did end up working well, even though it was only 2 weeks. I was able to successfullly, slowly transition over to eating some small amounts of bland low-FODMAP food after that 2 weeks. (I had been doing 6 Vivonex drinks per day when I was on EEN, and then to transition back to food, I started with having 5 Vivonex and a tiny bit of food, then in a day or two go down to 4 Vivonex and a bit more food, etc and that worked out very well.) If you're considering trying EEN, I'd ask for some samples to try, and maybe both you and your doctor talk to the insurance company right away too. Good luck!
09-20-2017, 12:51 PM   #4
Magnolia24
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Thanks for the heads up about insurance. Sorry it was such a fight for you! It can be so frustrating. Good idea about asking for samples as well.
I don't want to get ahead of myself, but I am feeling better today (on a mostly pureed scd/low-fodmap diet + still on current meds)...so maybe it won't come to it, but still planning to discuss with my doctor at my next appointment.
09-22-2017, 03:13 PM   #5
Cat-a-Tonic
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It's good to be prepared. I'm glad to hear that the pureed foods are working for you so far (I've heard a few people on the forum say they go on a baby food diet when they flare), and I hope you don't have to do EEN, but it's good to at least know your options and know if your insurance will pay for it and so on. I was literally being discharged from the hospital when I found out that my insurance wouldn't pay for the Vivonex, that was not such a fun time. I definitely wished that I had been more prepared and more knowledgeable before that information was dumped into my lap and I had to quickly come up with $600 to pay for the stuff. So it's very good that you're thinking about this now, and being prepared in case you do have to go on EEN.
09-23-2017, 08:05 AM   #6
Guerrero
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That's the first time I heard prednisone could affect the efficacy of biologics...

I had a flare few months ago and decided to switch to een for 2 out of 3 meals.. so not so hard to stick with. I have been also on prednisone these last months and started entyvio. I can see results now, for sure een helped my intestine to rest. Give it a try, but dont hesitate to take prednisone too if you want to be sure to kick down inflammation, it works well, but collateral effects are very annoying.
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