HealingWell
Search Close Search
☰

Who's tried EEN?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/9/2014 4:02 PM (GMT 0)
Hey all... long time no chatter... Still struggling for my kid but trying to make the best of it all. After 5 months of the Humira / Methotrexate combination we are finally off Prednisone but still in real poor shape. Down to 84 lbs, failure to thrive, and baffling doctors as to what to do next besides some clinical trials or surgery. Our last 'kick at the can' is to do exclusive enteral nutrition (EEN) for 6-8 weeks in hopes to trigger some form of remission, or to subside the symptoms. D will be doing it through the nose & wear the feeding tube 24/7 and just hook/unhook when home/going out. She doesn't want to take the tube in & out and I don't blame her.

So I am looking for some stories or experiences on EEN. How did it go for you? Any words of wisdom or things to be looking out for? My kid is stronger than me. I don't think I could walk around in public with a tube up my nose. I remember being a teenager, it was hard enough without doing something like this.
Posted 4/9/2014 4:57 PM (GMT 0)
I think we've talked about this before on the forum. You might want to use the search tool and look for TPN.
Posted 4/9/2014 11:18 PM (GMT 0)
TPN is not the same as EEN. We have been on TPN before and it is admisinstered completely differently. I did a quick search and didn't find much hence the question. But I will search again.

I have read people have achieved clinical remission in some cases but was looking for more hands on experience.
Posted 4/9/2014 11:26 PM (GMT 0)
I should be a little more clear. I am wondering how EEN with a ng tube or g tube has worked for people. D is going on no food or drink and only being fed from the tube entering hopefully her nose (ng tube) but worst case stomach (g tube) She has done the boost, modulen, etc and couldn't stick with it and always cheated or couldn't handle the taste.
Posted 4/10/2014 1:27 AM (GMT 0)
SupportiveMom,

This was offered to my Daughter at one time. I can't comment from experience, as she simply wouldn't take that option. I had done some research, and seem to recall that it was as effective at attaining remission as prednisone. Unfortunately, you would still need to transition to something to maintain remission.

It's certainly unfortunate that she's failed Remicade. There are other anti-TNF's available, and some new suppose to be out soon. Vedolizumaub specifically. Maybe you could get into a trial.

Tom.
Posted 4/10/2014 5:15 PM (GMT 0)
monte! Great to 'see' you.

I was shocked when Dani finally decided to take the option. She is starting to give up and still just about out of options. Down to 8th percentile for weight and has already been identified as failure to thrive. Remicade is an absolute no thanks to her anaphylaxis reaction and hospital trip from that, and because of that 2 trials she is ineligible for. I will check on Vedolizumab.

Right now our only options are EEN & doubling up Humira. Dani would rather see a tube in her gut or nose than to double up on Humira She hates the pain of the needles. She may change her mind when we start the EEN. At least I know EEN can't harm her in any way and can only do her good. It would be nice to see her gain some weight and potentially grow. We aren't dropping the Methotrexate/Humira combo, but I am hopeful this can push some remission into gear, at the very least put some meat on her bones.
Posted 4/11/2014 9:08 AM (GMT 0)
SupportiveMom,

EEN sounds like a really good option for Dani right now. At least, that should give her some time for her system to heal, while getting some concentrated nutrition.

Many will say, that while the anti-TNF's can start working in a matter of hours, it really takes a full year to see the full benefit. I'm hoping that with a few more months of the Humira combination, it will become more effective in that time.

Prayers coming your way. My Daughter was diagnosed at 13, so I know how hard it is to see such a young person struggling. I promise you, there are better days ahead.

Tom.
Posted 4/11/2014 2:02 PM (GMT 0)
I hope she gets better and can put on some weight.

My father had an NG feeding tube when he could no longer swallow and I'm pretty sure (but not totally) that it's smaller than what I had personal experience with. I had to wear a naso-gastric tube for around 10 days after colon surgery and those can be a challenge because you're swallowing with what amounts to an irritant in your throat. Even though you're not eating, you're still swallowing regularly. It was a painful but necessary evil though mine was to pump crud out of my stomach not into it. I was also on TPN at the time, which as you pointed out, is a totally different deal. For others reading, TPN, or total parenteral nutrition, is administered through a port and completely bypasses the GI tract.

I'm not trying to put a scare into you, and my experience may not apply since it's not the same type, but I would be remiss if I didn't admit that the darn thing I had to wear was painful. Hopefully someone with experience of the NG feeding tube will post soon. -Joy
Posted 4/13/2014 7:24 PM (GMT 0)
I am surprised there hasn't been many responses regarding EEN. I know it doesn't loom pretty but there is solid research in people achieving remission this way. Figured I see a few people try it. Kind of surprised.
Posted 4/13/2014 9:07 PM (GMT 0)
I used the search tool at the top of the forum and searched "enteral nutrition" and got some results. Here are three:

https://www.healingwell.com/community/default.aspx?f=17&m=1888379

https://www.healingwell.com/community/default.aspx?f=17&m=2008871

https://www.healingwell.com/community/default.aspx?f=17&m=1653289
Posted 4/13/2014 9:40 PM (GMT 0)
I've only tried a liquid enteral nutrition diet, which is not the same as what your daughter is going to do: I never had a feeding tube. My diet took the form of elemental drinks called Elemental 028. I was meant to do it for 6 weeks and only lasted for 2 weeks. The drinks were beyond vile (think of the aftertaste of vomit sweetened with aspartame - yeah, that). I was meant to drink nine cartons a day and never could: by the second week my hair looked like straw and I was literally starving. I also became crazy: Prednisone never had that effect of making me psychotic, but this diet sure did.

That's why I didn't want to talk about it: nothing very encouraging to report. But that said, as an adult with mainly colonic disease, I wasn't the best candidate for enteral nutrition. For whatever reason, enteral nutrition works best in children and adolescents and for small bowel disease. If your daughter fits both criteria, then hopefully EN should help.
Posted 4/14/2014 1:10 AM (GMT 0)
Tea, that is why she failed it last time, they taste gross. Bypassing the taste buds have to make it someone better to manage. She definitely meets the criteria so I really hope all works.
Posted 4/14/2014 2:31 AM (GMT 0)
Yeah, for real. I'd heard they had a metallic taste, which I thought would I could deal with. And probably could have done if they'd actually tasted like metal. What they actually tasted like was cloying, sickly vomit: the aftertaste lingered in my mouth forever and no water or other liquid known to man was capable of washing that vile taste away.

If I'd known it was going to be that bad, I'd have gone for the feeding tube too. Anyhow, the best of luck to your daughter: I hope it works too.
Posted 4/14/2014 1:08 PM (GMT 0)
Thanks! I will keep you all posted. She is now down to the 6th percentile in weight, so she has to start gaining soon!
Posted 7/20/2016 4:15 PM (GMT 0)
Supportive Mom,

I realize that this is an old thread, but my 16 year old son will soon begin ENN and I am wondering how your daughter did with it? Any tips or tricks we would appreciate. I am surprised that more kids/teens aren't doing it because the research shows it being very effective.

Thanks
✚ New Topic ✚ Reply