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09-03-2013, 06:21 PM   #1
If*
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EN for adults?

Hi there, any adults have success with en? If yes was it via ng tube or drinks? I am not too familiar with this form and have just started to look into it. Are there prescription forms are all otc /bulk? Do all contain mtc. Which ones do not contain carrigeen?
I am looking for an alternative to what has not worked, to build /maintain a healthy weight and hopefully get a foothold.
Thank you in advance. Any help would be appreciated.

Much peace
09-12-2013, 03:00 PM   #2
Spooky1
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I still have diarrhoea but then I have had a lot of intestine removed. I have a Peg, the tube through the abdomen, which delivers the liquid food at 50mls per hour. You can get small intestinal bacterial overgrowth which needs metronidazole antibiotics which react badly with me. There are many liquid foods to try, and you should work with your dietician with this. I think if you're in America you can buy ensure but you'll need to talk to a dietician concerning what is in each one. She can then work out which one is best. and good luck
10-10-2013, 08:45 PM   #3
If*
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Thank you Spooky.
10-12-2013, 04:11 AM   #4
Spooky1
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You're very welcome.
10-12-2013, 08:20 AM   #5
nogutsnoglory
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I did have success with it via drinks but the problems always return when I resume a regular diet.

Beat Crohn's! Getting to remission with Enteral Nutrition is a fantastic book I highly recommend.
10-12-2013, 09:56 AM   #6
iriechic
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I was having awful neuropathic joint pain on Remicade. My GI decided it best for me to get a peg tube for EN. I just had the procedure yesterday. I am hopeful this will help me get into remission with celiac disease and colitis. My GI says studies of pediatric crohns go into remission 70-80% with EN!!!! I like that you can forgo immunesuppression with EN.
10-12-2013, 10:53 AM   #7
Spooky1
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Hope it goes really well for you. Yes, getting back onto foods can be a disappointing nightmare.
10-23-2013, 06:45 PM   #8
If*
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Hi there! NGNG so funny, I just started reading Beat Crohn's! Getting to remission with Enteral Nutrition.
Iriechic please let us know how it goes. I will be wishing you all the best!! I should be on all liquids soon for 8 weeks.
Spooky, shut the door lol, please say it isn't so. The reintroduction of food if taken slow slow slow should not be too awful. Is it any particular food or all foods? I don't know what else to do except EN, I need weight back on and need my guts to calm down!!

You guys are the best!!
Much peace
10-24-2013, 08:55 AM   #9
Spooky1
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haha, I know about needing weight on and need for guts to calm down. hope the 8 weeks help loads. good luck
10-24-2013, 09:17 AM   #10
If*
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Hi there, was kinda funny when working out how much daily for calories and what I could have along with the EN. WATER! Was thinking could said water be perhaps coffee flavored? Im thinking not. Im going SO STRAIGHT EDGE without coffee! Hope my head does not burst, lol.
Im going to attempt to drink this, if not try ng tube and if that doesn't work then a peg.
Do you know if flavor packages help at all or are they just more so scented but still gagging? We all know how they flavor kits, barium etc and it is still nasty, lol. Guess this is kinda a try, try, try. Must not over think this too much.

Thank you
Much peace
10-24-2013, 11:36 AM   #11
Spooky1
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I do actually have boiled potatoes and bland fish. its nice to have something warm. perhaps you need the caffeine tablets to stop that four day migraine lol
10-26-2013, 10:33 PM   #12
iriechic
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Hi If*

EN has been going well for me. I'm only 2+ weeks in and feel improvement. My GI wanted me on PEG after brief trial on NG tube. The NG tube was so uncomfortable to me. I suggested drinking the EN, however, that is hard to do (unpalatable) for 6 weeks.

I would stay positive that this WILL work for you and you WILL be able to add back solids. We are each unique. What doesn't work for one, doesn't mean it won't work for another. Maybe it depends on the severity of the disease, what disease (I have celiac and lymphocytic colitis), the foods you reintroduce and rate.

Make sure your GI gets you on the best formula for your needs.

Best,
iriechic

Last edited by iriechic; 10-26-2013 at 10:43 PM. Reason: additional comment
10-27-2013, 12:29 PM   #13
If*
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Hello Iriechic, I am so sincerely grateful for your post. I was actually going to ask you how you are doing? A peg was mentioned and I was thinking of it as a last resort. I am so afraid of more pain and I get so tired of fighting this. We were just talking about what to do, I have a horrible tolerance to things that taste bad. So it sounds like if I just suck it up and go the what will be - it might save me additional misery.
It is so good to hear things are going well for you. Keep doing super!! I will be cheering for you.

I have such high hopes that this will help pull me together ~ your encouragement means so much so me. Thank you!

Much peace.
11-06-2013, 11:57 AM   #14
SarahD
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Not all EN formula tastes bad, so don't assume that you won't be able to drink it - it's definitely worth trying before opting for an NG tube or peg.

I was solely on E028 for over 8 weeks and really liked the flavours, especially the ones that came in a carton premixed. I know not everyone likes them, but I am majorly fussy when it comes to taste and texture. Not all brands are alike either, some taste better than others so you could explore different brands if you didn't like the first.
__________________
Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.


Current meds:
Azathioprine, Allopurinol, Calcichew D3-Forte, Fortijuice, Alendronic acid, Ranitidine

Previous meds:
Augmentin, Doxycycline, Lansoprazole, Asacol, Pentasa, Prednisolone, Entocort, Cipro, Flagyl, Elemental Extra 028
11-06-2013, 01:28 PM   #15
Spooky1
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Just to add to this, I am disgusted to find that so many of these liquid feeds, and my dearly beloved questran, have now added aspartame to them. As if I need migraines and other side effect just because I need to resolve another health issue. Yes, the life long Crohns. I am seriously on the point of writing letters to the pharmaceutical companies and giving them a major rant. They have forced me to look at other liquid foods and anti diarrhoea meds. They all seem to have sweeteners these days. oh for the original sweetener free stuff.
11-06-2013, 02:51 PM   #16
SarahD
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I wonder why they need to add artificial sweeteners since EN is loaded with sugar? Seems odd to me!
11-06-2013, 08:27 PM   #17
Spooky1
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Yep, I been having issues with mine for quite some time. NOt surprising we get small intestinal bacterial overgrowth.
11-11-2013, 09:04 AM   #18
kiny
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"Real" EN won't taste bad. Fortimel and Ensure aren't EN, to be perfectly honest, they are junk.

The only real EN I'm aware of are 028 and modulen (peptamen for children). I have tried both and they both have little to no taste.

You don't have to use a tube to get the effect of EN, you can just drink it if you want (with a straw if you like).

The effect of EN is unknown, but it is suggested to be:

-Transforming growth factor from the EN (this makes most sense to me)
-Very low in microparticles
-mudulation of the gut flora

If you drink it or use a tube, it makes no difference.

A tube is really more for compliance for children, there's no reason why you can't just drink the EN, many hospitals let people drink the EN, and many do it at home too.
11-11-2013, 09:22 AM   #19
Carlee
 
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I was told I need lots of protein also about 20 pds over weight, for I don't suffer from diarrhea. Do have a lot of scar tissue.Recently heard about EN. Is Boost considered to be effective for any of this? They make one that is calorie smart, high in protein and isn't bad. I also don't tolerate bad tasting food and drinks, I literally gag and wind up throwing up. My mom said when I was a baby I looked like the exorcist LOL.
11-11-2013, 09:41 AM   #20
Spooky1
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Kiny, I think its something to do with tummy overload and gastric dumping syndrome.
Carlee, I often have a swollen body due to lack of protein, but its not in the food protein. Its because there is inflammation in the body.
11-11-2013, 09:44 AM   #21
kiny
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Boost isn't a real EN to be honest. Nestle's EN is Modulen.

As far as protein, your calories should be around:

60% carbs
20% fat
20% protein

If you look at EN formulas, they stick to that ratio rigorously, modulen has slightly less carbs, 028 slightly more.

60/20/20 is what most hospitals / health institutions and diets based on science recommend. Sometimes it's 50/25/25, but carbs should always be the majority of your calories.

Luckily for us, simple carbs are easy to digest, which is why all EN use simple carbs like dried glucose.
11-11-2013, 09:49 AM   #22
Carlee
 
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I am really new to all this even though I had crohn's for 10 yrs.Can you buy that somewhere or is it a prescription?
11-11-2013, 09:51 AM   #23
Carlee
 
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My inflammation is good right now.
11-11-2013, 09:52 AM   #24
kiny
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I am really new to all this even though I had crohn's for 10 yrs.Can you buy that somewhere or is it a prescription?
I live in Europe so I can't speak for the US. But it should not require a prescription.

The only thing you need to use EN is:

-EN, comes in powder from the store, a pharmacy usually (modulen uses a small container, 028 uses a package)

-plain water

-something to mix it in, a sports container people use to mix in protein powder works (clean out the container after you're done mixing / drinking, EN are full of glucose, otherwise just use a water bottle you throw away)

-a straw if you want
11-11-2013, 10:03 PM   #25
If*
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Hi there ~ Kiny I was wondering if you had tried the EN non flavored ones that can not be flavored? And how you manage to get 7 -8 down a day? By non flavored I also mean unsweetened.
Thank you
11-12-2013, 02:38 AM   #26
zilla7777
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I can vouch for Modulen being a viable method of inducing remission. It is a little sweet, but after a while it's easy to get used to the taste. It's better than pred by any stretch in my opinion.
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Past Tx: Prednisolone, Enteral Nutrition
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11-12-2013, 06:11 AM   #27
Spooky1
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It's best for those that have not had much intestine removed. Good reports from those that use it before surgeries.
11-12-2013, 08:17 AM   #28
kiny
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Hi there ~ Kiny I was wondering if you had tried the EN non flavored ones that can not be flavored? And how you manage to get 7 -8 down a day? By non flavored I also mean unsweetened.
Thank you
Trying to understand what you mean.

I have tried:
-028 (the powder, not the drinks)
-modulen

I learned about both from the hospital, since they both are used worldwide in hospitals for IBD patients.

All EN is "sweet", all EN is full of dried glucose ("sugar" if you want), unlike what the media tries to tell people, most of your calories need to be coming from carbs.

All carbs get eventually turned into "blood glucose", complex, simple, fructose, sucrose, dextrose...they all end up as blood glucose. So EN use dried glucose to make it easy on your intestine to take it up, they use simple carbs so you don't need to break it down anymore.

So use a straw so you don't kill your teeth with it. It's just as sugary as drinking coca cola etc.

Same with protein, they use highly bioavailable whey that is highly processed so you have a really easy time digesting it.

Same with fat, they use medium chain triglycerides.
.

There are things you can add to Modulen to give it a "taste"...there is flavors like chocolate / vanilla etc.

I don't think 028 has them

.
I use them non-flavored usually, it tastes bland, but just like an addict doesn't long for alcohol anymore if you deprive the person long enough from it, so do people who try EN no longer long for very strong flavors anymore, you sort of accept it and remember that it is helping you. The fact it doesn't have much flavor easily wins when you're not feeling as sick. Who cares right.

If I want a flavor with the EN, I simply pour it in something that already has taste, some iced tea, some juice or whatever.
.
.
How to get enough down in a day? It's not that hard once you're doing it. Also, while I don't tend to use it with "real food", you can use EN and real food together, you will still get the benefit of real food and the benefit of the transforming growth factor in the EN and the highly bioavalable nutrients.
.
.
Mind you, EN is not a form of treatment if you are really sick. You use it together with medication or if your disease is really mild, on it's own, or after remission to maintain remission.
.
Also, if you're new to EN, you need to mix it in the right ratio, the right ratio water / EN, a child can do it, but some people forget to do this and add too much or too little water, it will be marked on the EN pamflet how much water for how many "scoops" (in the case of modulen) or mg (in the case of 028) per liter (or whatever unit your country uses).

Last edited by kiny; 11-12-2013 at 08:33 AM.
11-12-2013, 05:48 PM   #29
If*
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Thank you for your experience. I don't want to disagree but ouch..."
Mind you, EN is not a form of treatment if you are really sick. You use it together with medication or if your disease is really mild, on it's own, or after remission to maintain remission."
EN is actually used to induce remission and for nutrition for much needed weight gain. Some that use it are by no means mild in condition. There are EN formulas/powder mix that are unpalatable so an ng or peg would be the only way of using them. I guess it is different where you are.

Thank you again.
12-14-2013, 09:28 AM   #30
Spooky1
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Hi, If,

how is it all going now? Hope you have experienced improvement with EN.
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