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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Why is enteral nutrition not used more in the U.S.?


08-04-2010, 01:32 AM   #1
Poppysocks
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Why is enteral nutrition not used more in the U.S.?

I've just read numerous research articles on Enteral Nutrition and how the remission rates are similar to prednisone. Don't have to be on drugs. Yet it is under prescribed in the U.S and when doctors do prescribe it, insurance doesn't cover. Yet insurance companies are so quick to cover a $16k remicade treatment.
08-04-2010, 01:59 AM   #2
Entchen
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That's a great topic. What I've read is that many physician automatically write it off because they think their patients will not be willing to stick to it. I think they underestimate our level of pain (not to mention the desire many of us have to try to keep our medication use to "reasonable" levels). I put myself on a liquid diet a few months ago and found it helpful.
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08-04-2010, 05:56 PM   #3
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Interesting. I have been considering it. I still have 50lbs from my Pred that I haven't gotten off. Every time I start losing - guess what?? More Pred!! LOL!! I had read about the liquid diet and was seriously thinking about talking to my doctor. I am feeling yucky and when I get really hungry, all my body wants is carbs, and I know those aren't so good for me. Salad makes me want to cry right now.
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08-04-2010, 07:06 PM   #4
Poppysocks
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I've been doing a lot of research lately on it, and literally every article I come across has enteral nutrition (liquid diet) attaining remission rates similar to corticosteroids (prednisone), and if not for the high dropout rate because of people wanting to eat food, the remission rate would be even higher (60-80%).

For some reason though our insurance companies in the States aren't quick to cover it, even though other countries will. I tried to get insurance to cover Pivot 1.5 (an enteral supplement) a little while ago and they rejected it. I'm looking at Aetna's policy on enteral nutrition and it seems they will only cover it if you get a feeding tube put in you (BS).

I'm 22, been diagnosed since I was 8, have been through pretty much every drug pharmacotherapy has to offer. Remicade isn't working for me anymore. And surgery only gave me a year and a half of remission. I'm confident if I got on an enteral formula I'd be able to stick to it. I do not want an NG tube in me though, I'd prefer to just drink it. I'm a poor college kid that is broke and there's no way I could afford to pay for this stuff. UGH, sorry for rant.

Last edited by Poppysocks; 08-04-2010 at 07:35 PM.
08-04-2010, 07:17 PM   #5
Entchen
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I'm sorry about the expense. Unless your physician requires a specialty product that is very expensive, could you maybe think of it this way: $10/day for a carton of Ensure or Boost is maybe not much more than you would pay for food in a day? Now I recognize that if you cook from scratch, your costs might be less than $10/day for meals, but if you are living in a college dorm, then costs are more like $15+/day for meals. I'm also aware that there are other enteral nutrition products that are considered more specialized, and that this might be what your GI would prefer you use. Hope you can work this out! The research really is behind enteral nutrition (including the use of Ensure and Boost) as a viable option for at least 50% of people.

To Sunflower: I'm afraid enteral nutrition is not a weight loss technique, as it is meant to provide a full day's calories and general nutrition. Indeed, many people on the forum use it for weight gain.

Last edited by Entchen; 08-04-2010 at 10:51 PM.
08-04-2010, 08:14 PM   #6
Poppysocks
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Yea, I'm looking for something a little more specialized. Boost and Ensure don't seem to sit well with me. Thanks for the support though.
08-04-2010, 08:29 PM   #7
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Kelly, I am sorry. I know that. I just also know that when I am flaring I eat too many calories because I am hungry but I can't seem to find something to eat that doesn't make me feel queasy - except bread, candy, stuff like that. It is like a viscious cycle. Then when I go on Pred, I eat even more stuff. I guess what I was meaning, though i didn't say it well, was that I would be getting Healthy calories if I went to that. It might also curb my sweet tooth because I would be getting what my body needs. I need to be more explanatory sometimes.

Like for instance tonight. I look like I am about 8 months preggers and I feel awful. But, my stomach is growling like crazy and I feel weak because I worked all day and need something to eat. The ONLY thing I could make myself eat was some toast with butter and some marshmallows. I should have had something more substantial, like a V8 - or a Boost. The marshmallows, though tasty, are not good for me and too many will make me gain weight. But, I will still be hungry and want more. I will go back to the fridge later and stare at all the healthy stuff, and either eat more marshmallows or another piece of toast.
08-04-2010, 10:49 PM   #8
Entchen
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Oh, I hear ya, sister! My weight is going up and up and I have been exercising like CRAZY for the past 2 months. And have tried the Ensure diet. And I've even started making my own marshmallows from scratch, I crave them so much now.

Talking with GI tomorrow about the insatiable hunger (which I assume is indigestion masked as hunger) and will report back if he has any ideas.
08-05-2010, 08:08 AM   #9
dreamintwilight
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This might be super cynical of me to say, but I also wonder if enteral nutrition is used less in the U.S. because of American society's need to have quick fixes when it comes to everything.

Just a thought
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Last edited by dreamintwilight; 08-05-2010 at 09:00 AM.
08-05-2010, 08:53 AM   #10
soupdragon69
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Hmmm its something I have often wondered as enteral feeding is something that is used alot here in the UK.

I regularly use elemental 028 extra which you will find in the food threads...

If anyone has any questions will help where I can. My GI has always said up to 80% go into remission but the problem is maintaining the regime for as long as you need to get there. Eating (of any amount/kind) is an incredibly social thing and its not like alcohol or cigarettes where you give up and never go go back. So there is a huge emotional aspect to doing these types of regime and thats why its vital to have gastro and dietetic support.

The more specialised drinks like the one I use is designed to be absorbed in the first metre of the small bowel to ensure you receive the highest possible intake of nutrients you desperately need AND allow the rest of the gut a chance to heal and repair.

Things are a bit crazy for me at the mo - hence I havent been around alot - but will post where I can guys.

Thinking of you all ((hugs))
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08-05-2010, 10:55 AM   #11
5 iron
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I think you answerd your own question poppysocks,insurance won't pay for the milk shakes cause they don't work,remicade has been proven to be effective for most people.
08-05-2010, 11:52 AM   #12
Poppysocks
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They don't work?

A lot of studies point out that Enteral Nutrition's success rate falls just short of corticosteroids. The problem with that is those studies are including the people who drop out of the treatment program because they can't stand not being able to eat. Not to mention Enteral Nutrition helps with mucosal healing, which corticosteroids do not, Enteral Nutrition is safe and effective. I have access to a lot of articles because of my university here are a few I came across, not the best ones I've read but clearly explaining the benefits of EN.

edit - I can't post links, but if you google Enteral Nutrition AND crohns you will find all the research you need to know.

Last edited by Poppysocks; 08-05-2010 at 01:20 PM.
08-05-2010, 02:24 PM   #13
ameslouise
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I agree with Marisa - most people here in the US want to take a pill and get better and don't have the discipline to stick with a program of enteral nutrition. Docs probably don't prescribe if they know that the chances of patients following it thru are slim to none.

Personally, I would be more than willing to give it a try. It would be very difficult I am sure, but if the success rate is high and the side effects low or nonexistent, I'm in!
08-05-2010, 02:28 PM   #14
MapleLeafGirl
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Personally, I would be more than willing to give it a try. It would be very difficult I am sure, but if the success rate is high and the side effects low or nonexistent, I'm in!
I haven't heard of them using it too much here in Canada either. I agree with Amy though - I love to try it!
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08-05-2010, 03:19 PM   #15
Poppysocks
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After being on a strict SCD diet for 4 months this sounds like a piece of cake. Three of my main problems with SCD was the time it took to cook, the feeling of always being hungry, and the cost of buying the most expensive foods.

Enteral nutrition would help with 2/3, and if health insurance didn't suck all three of those problems would be solved. If I ever get hungry just drink a can (I can drink anything). I'd save tons of time by never having to cook. Honestly if I went on this I would want to stay on it for as long as I possibly could. So what if I don't eat real food anymore? Just means I have more time to be doing other more productive things, things I can't do when I'm sick.
08-05-2010, 03:36 PM   #16
Entchen
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I put myself on an almost entirely liquid diet back in May when I was waiting for official diagnosis (I didn't go full-bore because it was without a doctor's go-ahead and I wanted to play it safe). It HELPED my stomach pain, even though it was only about 85% liquids across the 6 weeks (the literature says you need 100% to see measurable benefits). I went back on food after being prescribed Salofalk in order to monitor the drug's effects with "normal" eating, since my GI says I should be able to have a regular, Canada Food Guide, diet if symptoms are being properly managed.

All that said, I had the enteral/pred conversation with my GI this morning and we have decided to go with prednisone for 6 weeks. I don't love this decision (and in fact my personal goal had been to avoid prednisone because I'm already struggling with weight gain from Crohn's), but we laid out our options...and somehow prednisone came out as the most logical choice for this point in time (I think partly because my flare went entirely untreated for 9 months -- so things are just not where they should be at all). If the pred puts me into remission, however, I will 100% be trying the enteral diet before meds next time. 50% chance of success, to me, is worth trying for 6 weeks.

No need to worry about hunger -- all you need to get used to is not chewing and swallowing solid food (may I suggest gum?).
08-09-2010, 08:38 PM   #17
Guest9283
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I've just read numerous research articles on Enteral Nutrition and how the remission rates are similar to prednisone. Don't have to be on drugs. Yet it is under prescribed in the U.S and when doctors do prescribe it, insurance doesn't cover. Yet insurance companies are so quick to cover a $16k remicade treatment.

It is not as common because most people can't go 6 weeks NPO (nill per mouth other than the drinks). You have to eat nothing else but the tube feeding. Drinking the peptamen cans slowely accomplished the same thing. I've preached for years to all my other crohn's friends, how much doing this has helped me whenever I would have a flare. I have used this method for about 7 years now. Gets me out of a flare 70% of the time if I can catch it soon enough. It is just really hard for those that have not done it before. My insurance company has covered it everytime?? Aetna.
08-23-2010, 08:31 PM   #18
Chuck2008
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I've read a bunch of studies saying there is no difference in remission rates between enteric and polymeric formulas.. that drinking Ensure Plus is just as effective as the more expensive (and much worse tasting) medical formulas. One study I purchased from a medical journal yesterday described a case study very much like my own. The patient (male, roughly my age) was on prednisone for 8 years ranging from 10-20mg per day. Every time he tried to reduce the prednisone the symptoms came back. He started drinking only Ensure Plus and water and before he knew it, he was in remission and was finally able to get off steroids.

So two days ago I started on a 100% Ensure Plus diet. So far so good.. lots of food cravings, and I miss having a morning coffee, but I need to see this experiment though. I made a special arrangement with a local drugstore to buy a large number of them at a sale price ($8.99 per 6 bottles). At 7 per day, its going to cost just over $300 per month, which is probably what I was eating anyways before that.
08-23-2010, 08:50 PM   #19
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That is a good price for the Ensure! Are you in Canada or the US? I always have ensure on hand, strawberry is my fave. There have been people on the forum living on it and they are fine. Hope it helps you and get well! Keep us updated on that. Thanks!
08-23-2010, 10:29 PM   #20
Chuck2008
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Hi, I'm in Canada. I am always looking around at the different local drugstores for sales. I've seen them as low as $6.99 for 6 but very, very rarely. $7.99 is also a great find but I only see that every few months. $8.99 is a good sale price, whenever I see them at that price I clean them out.

I've been drinking ensure and other meal replacement drinks (boost fruit juices, EAS protein shakes) for a while now, but never as my only source of nutrition.

Shoppers has the best prices on a regular basis. If you talk to the purchasing agent at the store they can probably do a special order for you if the order is big enough.
08-24-2010, 06:51 AM   #21
Poppysocks
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I've read a bunch of studies saying there is no difference in remission rates between enteric and polymeric formulas.. that drinking Ensure Plus is just as effective as the more expensive (and much worse tasting) medical formulas. One study I purchased from a medical journal yesterday described a case study very much like my own. The patient (male, roughly my age) was on prednisone for 8 years ranging from 10-20mg per day. Every time he tried to reduce the prednisone the symptoms came back. He started drinking only Ensure Plus and water and before he knew it, he was in remission and was finally able to get off steroids.

So two days ago I started on a 100% Ensure Plus diet. So far so good.. lots of food cravings, and I miss having a morning coffee, but I need to see this experiment though. I made a special arrangement with a local drugstore to buy a large number of them at a sale price ($8.99 per 6 bottles). At 7 per day, its going to cost just over $300 per month, which is probably what I was eating anyways before that.
I'm kind of in the same situation. I'm in the process of getting a more specialized formula covered by insurance. My doctor's office recommended vivonex. FYI they rejected my request outright the first time I tried to get it covered, which I appealed right away. But I have another appointment this Thursday with another GI and I'm going to just tell them to put an NG tube in me, since that is the only way insurance will cover it. I'll let them put it in, then take it out when I get home.

In the meantime, I've been on an ONLY ensure plus diet for the last 6 days. I've been ok, I usually drink between 5-9 cans a day. Sams Club has them at 24 bottles for 30 dollars. I seem to be more constipated. I haven't been able to put any weight back on (5'11 129 lbs) though, and my energy levels are decent.

I know the research says there is no difference between polymeric and elemental formulas but I'd still feel more comfortable drinking something a little more specialized.
08-24-2010, 07:19 AM   #22
Chuck2008
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Thats an amazing price for ensure! Too bad they just closed our Sams Club here in my town last year. I`d fill my garage up at that price

If I could drink a formula that would be paid for with insurance I probably would to.. unless its really terrible testing then it might not be worth it.

Actually up until a few days ago I was drinking Ensure High Protein which was delicious, and just switched to Ensure Plus a few days ago because I need more calories if I`m using it as my only nutritious source. Problem is, Ensure Plus has a vague fishy taste, I think its because of all the Omega-3 they add to it.. and it has a thicker consistency too. I guess it will take some getting used to..

3rd day on the ensure diet and I feel good. No upset stomach or anything for over a full day now. I feel like my bowels are having a nice holiday..
08-24-2010, 09:16 AM   #23
Marsman
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After being on a strict SCD diet for 4 months this sounds like a piece of cake. Three of my main problems with SCD was the time it took to cook, the feeling of always being hungry, and the cost of buying the most expensive foods.

Enteral nutrition would help with 2/3, and if health insurance didn't suck all three of those problems would be solved. If I ever get hungry just drink a can (I can drink anything). I'd save tons of time by never having to cook. Honestly if I went on this I would want to stay on it for as long as I possibly could. So what if I don't eat real food anymore? Just means I have more time to be doing other more productive things, things I can't do when I'm sick.
@ Poppysocks - I completely agree. I, like you, have been following the SCD Diet for a few months and the time, effort and money its taking is slightly crazy. I've tried a 'medium' dosage of pred with limited success and would much rather try something as 'simple' as a nutritional drink. I would quite happily forfeit eating if I could have some kind of normality to my life.

Andre
08-24-2010, 05:13 PM   #24
Poppysocks
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@ Poppysocks - I completely agree. I, like you, have been following the SCD Diet for a few months and the time, effort and money its taking is slightly crazy. I've tried a 'medium' dosage of pred with limited success and would much rather try something as 'simple' as a nutritional drink. I would quite happily forfeit eating if I could have some kind of normality to my life.

Andre
Being located in the UK you should have no problem getting your insurance to cover enteral nutrition. LUCKY YOU!

I swear all these people overseas that whine about how badly they want food while on enteral nutrition should be grateful that they don't have to jump through fire to get the stuff in the U.S.
08-24-2010, 11:04 PM   #25
Entchen
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I've gone through the ingredients for Ensure High Protein and feel comfortable using it, but I can understand wanting to do your research to find just the right product for your needs. I keep a 6-pack of Ensure in the faculty lounge at work.
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