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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » The many different elemental diets


01-13-2011, 02:04 PM   #1
Stacyface
 
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Elemental as good as prednisone?

I have recently read a great deal of research on the effectiveness of an elemental diet. In most instances, it is said to be nearly as effective as prednisone, especially in children. I have also found information stating the U.S. does not use this as treatment very often as compared to Canada and Europe. That said, I thought opinions on the many different elemental diets might be a good idea for a thread, considering there are so many choices. I recently found a product called Absorb Plus. I found this on the Kickstarter.com under Reid Kimball's "Wanted: Crohn's End" website. I am trying to get my son motivated to start an elemental diet, but he has an awful time downing protein drinks and the like. We considered an NG tube but he has thrown them up twice. We also discussed a gastric tube. I haven't heard much on this topic but my doc says it has helped some of his teen patients greatly. It would be a much easier if my son could just swallow his diet instead of it being pumped into to him one way or the other. Absorb Plus has to be blended, but it looks like it may taste a bit better than some others, and it can also be customized. Any one have experience with this? Anyone have experience with a gastric tube? Any suggestions? Please contribute all the different elemental diets tried here .... and the many different ways they have been administered. I think any ideas and suggestions will be welcomed by all. Thanks!

http://www.absorbplus.com/index.php
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RJ: Age 16
Dx Dec 2009: Indeterminate Colitis/UC?
Dx June 2010: CD after surgery for abccess
Current Meds: Cimzia ; Methotrexate 25mg; Prednisone 15 mg tapering; Flagyl; Cortifoam
Previous Meds: Remicade, Humira, Cipro; Unisyn, Vancomycin, Pentasa, Canasa Suppositories
Starting: LDN; Entocort
Supplements: Vit D, Fish Oil, Flaxseed Oil, Multi Vit, Liquid Cal, Mag, Zinc,Iron, VSL#3; Folic Acid; B12; Calcium Gummies

Last edited by Stacyface; 01-13-2011 at 04:01 PM. Reason: Need a more intriguing title
01-14-2011, 03:06 AM   #2
happy
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Hi Stacyface,
I started on an elemental diet 5 weeks ago. I was trying to get Elemental 028 because some of the studies that had good results used this liquid feed. However it is not available in North America. I started with Ensure Plus, but I developed more bloating, nausea and what I call gallbladder pain- probably due to the fat content. Adults with IBD need less fat than children do, so finding the best formula took a bit of sleuthing. I finally settled on Unflavoured Vivonex Plus. It is a powder that I mix with water. I am certainly better on it, but I have had trouble getting a supply of it and had to cut down to make it last. I think that I have got a good supplier now.
Neocate Junior and 028 Splash are products designed for children that are similar to the ones used in many of the studies. You can get them unflavoured or flavoured or with a flavoured straw.
Two books really helped me with this: Beat Crohn's:
Getting to Remission with Enteral Nutrition
by Margaret A. Oppenheimer and Inflammatory Bowel Disease: The Essential Guide to Controlling Crohn's Disease, Colitis and Other IBDs by Professor John Hunter.
There is alot of info on Dr. Hunter's website as well. Google IBD and UK Crohn's organizations for his website.
The second part about elemental diets is eating again. It requires a very systematic approach. Both the books and the website give a lot of info about this.
I hope that you are successful in helping your son get better with an elemental diet.
02-10-2011, 08:10 PM   #3
supercellbaebe
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I'm on 028 Elemental Extra cartons, I'm not sure if you can get it in there states or now? I find its the only thing I can tolerate. Even this drink makes me bloated, constipated and feeling really really uncomfortable . But other drinks like Ensure, Fresubins and Fortisips are much much worse.

The taste of drinks is foul as well, really yucky, but if you freeze them and have them ice cold it kind of makes them a little more tolerable!

But in terms of helping with symptoms, although I'm bloated and constipated I find I have much more energy, I am no longer in pain, and I just generally feel much better.

I definitely recommend the diet!

xxx
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Lived on and of Elemental 028 Extra Cartons for 3 years

eating again, but getting vile symptoms
03-11-2011, 01:16 PM   #4
Chuck2008
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Ensure High Protein has a lot less calories than ensure plus, I've recently switched to it. I've been in remission for half a year now thanks to ensure plus. I also use protein shakes now. The literature suggests that it doesn't really what elemental diet you take, they are all pretty much equally effective. The important factor is that its liquid. The difference is something like ensure is palateable long term because it takes great..
02-13-2012, 08:37 PM   #5
JohnnyRottenAppleseed
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So how long does one stay on this diet once remission is induced?
02-14-2012, 09:00 AM   #6
Tesscorm
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Hi Johnny,

It would depend on your maintenance treatment plan. My son did six weeks EN without any food to induce remission (thru NG tube overnight), the six weeks ended mid July 2011. He has continued with the EN at half dose, 5 nights per week but can eat whatever he'd like during the day. So far, his only medication is Nexium (antacid). So, in his case, he will continue with the EN for as long as it seems to be controlling the inflammation.

I know Happy, above, used the EN to induce remission and then slowly reintroduced foods - I 'believe' she is trying to maintain remission through diet and gradually (if not already) eliminate the formula. She has made a number of posts regarding her treatment, diets and progress.

Are you on any medication now?


(In response to the initial post - he is on Tolerex).
02-14-2012, 10:08 AM   #7
JohnnyRottenAppleseed
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I quit 6mp and Lialda first week November 2011 and still in remission but I feel some pains/inflammation may be happening. I'm kind of done with pharmaceuticals as the side effects were almost as bad as disease.
02-14-2012, 10:26 AM   #8
Tesscorm
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Maybe have a look at the Diet subforum and some of Happy's posts - I'm pretty sure she is trying to keep her Crohn's under control through diet and, perhaps, 'some' EN.

The EN has no side effects and even from a convenience perspective, is not too cumbersome - for my son's maintenance level treatment of EN, it takes him seconds to insert the tube, the formula runs overnight (4-5 hours) and seconds to remove the tube in the morning. He has the formula 5 nights a week and can choose the two nights 'off' (usually the weekend).

The EN hasn't eliminated all his inflammation but seems to be keeping it controlled.

Good luck.
02-14-2012, 10:46 AM   #9
imwood
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I am both a mother and sister to Crohnies and have never quite understood the EN thing... forgive me if this is the stupidest question ever and there is an obvious answer. I've been asking myself this question in my head a lot.

Why can't we just make really nutritionally power-packed smoothies with living foods, algaes, juiced veggies/fruits for certain nutrients that can't just be blended when the fiber content is too much for their gut to handle, etc.... for our family members and give them liquid diets that way??? Seems like it would be healthier than a boxed/canned formula that has a years-long shelf life. I have always been taught fresh, living foods over dead foods. Even if they needed it through a NG food, it seems like it would still be healthier for the body to receive a liquid diet of alive foods.

if this is an idiot question, please.
02-14-2012, 11:16 AM   #10
Tesscorm
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I don't know the exact answer but what I do know is that the formulas not only contains all the necessary nutrients (as would select fruits, algaes, etc.) but are formulated to be very easily absorbed. My son's GI, in very layman terms, explained that the formula feeds the 'good bugs' which allows them to fight the 'bad bugs' thereby fighting the inflammation and inducing remission. And then, as in my son's case, he has continued ingesting the formula at a maintenance level keeping the 'good bugs' at a certain strength. In contrast, EN is sometimes not as successful when used after remission has been induced by steroids because the initial step of strengthening the good bugs was skipped.

Sorry, this is a very layman's explanation ... hopefully, someone else will come along with a better one!
02-14-2012, 11:41 AM   #11
Tesscorm
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Dusty gave another explanation plus links here: www.crohnsforum.com/showthread.php?t=23607

and this is the explanation in our wiki:

Enteral nutrition or elemental diet is a complete liquid diet, that meets all of a patient's nutritional needs. This means that the patient does not need to eat any solid food. The diet is 'predigested' meaning that it can be absorbed early in the small intestine, allowing the remaining bowel to rest. Some preparations (Modulen IBDare specifically marketed for IBD patients and also contain anti inflammatory ingredients.

Last edited by DustyKat; 02-14-2012 at 03:16 PM.
02-14-2012, 03:39 PM   #12
DustyKat
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No such thing as a dumb question! and your question is a very good one!

I think the key point to your question imwood is that EN is complete and there are some EN preparations that can be used to sustain life for extended periods of time with no other oral source of nutrition.

There is nothing wrong with juicing but I think it still needs to used in conjunction with a well balanced diet as you still need an appropriate balance of fats/carbs/protein/vitamins/minerals/sugars etc and I don't think juicing would give you this, this is only my opinion though. Like everything else, EN, drugs and so on, juicing also doesn't work for everyone. I thought it would be perfect for my daughter but it actually increases her diarrhoea.

Dusty. xxx

PS Tess. I edited your post as the link wasn't working.
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02-21-2012, 12:36 PM   #13
Paul Cronk
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Hi,

I am grateful to all who have posted above as I have had Crohn's diagnosed for just over a year. Fortunately the Pentasa helped to begin with but had to up the dose to 4g and have recently had to accept Pred (20mg 14 days) to get into remission. This time even that isn't working very well, and so we are forced to consider other strategies. Whilst honouring the courage of those who have years experience of the combat zone, I'd rather stay where I am with no serious gut damage and no WMD (as I consider the various drugs which are sometimes unavoidable but have very nasty side effects).

The disease made me bring forward retirement to better fight it and I intend to win but the choice of weapons is critical. The top two strategies without meds appear to be:1. Helminthic Therapy (and I am following those threads closely) and 2. Enteral Nutrition to bring about remission and a personally formulated exclusion diet to maintain remission.

If I were in England I would head for Prof Hunter at Addenbrookes whose IBD book goes into the subject (IBD) fully and he has remarkable success rates among those who see the (nutritional)treatment through. Frankly, I'd gladly eat cardboard and/or drink my urine for the rest of my life if that would get rid of the miserable symptoms (about which many of you know much better than me).

Unfortunately here in France where I live they believe in Pharmaceuticals and the drug companies are very entrenched, so it will be an uphill fight and I probably have to do it myself.

So guys and galls - which are the tasty/effective/available/affordable total nutrition packages and where can I buy them for shipment to France so I can get started on this tout-de-suite?

Thanks in advance for any responses.
02-21-2012, 02:19 PM   #14
littlemissh
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Where is your disease as studies really only show good benefit in upper gi and small bowel disease. I have this and was started on elemental extra 028 by addenbrookes. You have only this for 6-6 weeks, only water by mouth otherwise.You can drink this - there are 3 different flavours. I have a nasojejunal tube and mine goes through there. Elemental extra 028 is essentially predigested/broken down nutrients to allow them easy absorption in the upper gi tract.

There is also modulen which has fewer calories but possibly slightly more antiinflammatory - mostly used in children as less calorific and comes in a powder form which you make up.
Both are prescription only in the UK. There are online chemists who sell them but I believe you require a prescription...not sure how it works if from france.
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Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

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02-22-2012, 07:29 AM   #15
Paul Cronk
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My disease was evident in the terminal ileum but is no longer evident there. I still however have all the symptoms. The point being that with no existing damage I should logically be in a favourable position to find a non-pharma approach which works for me.

Thanks for your response I truly appreciate it.
02-22-2012, 01:17 PM   #16
Dogluv
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I've been on the diet non stop for about 3 1/2 months now and it works pretty well for me, I use the peptamen 1.5 formula which is made for replacing food. to make it taste better I put it in a blender with an ice cube and chocolate sauce which helps a lot with the taste. At first it was hard but after being on it for a while it's like second nature, and drinking it is not a problem. I'm in the US and I'm the only patient my doctor has on this treatment it's not used much here. I know there is also formula called modulen and also vivonex, which are also made especially for meal replacement that may work.
04-13-2012, 06:08 PM   #17
annawato
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Just tried Vivonex as I am being started on an elemental diet in hospital. Unfortunately I find the taste unbearable. Sort of like drinking watery mayonnaise and I wont even mention what the nurses think it smells like - you worst imagination could probably conjure it up. Anyway just thought I'd post my thoughts on Vivonex here in case anyone else was thinking of trialling. Is there one elemental drink that people tend to find more palatable than any others?
Thanks, Anna
04-14-2012, 01:48 AM   #18
SarahD
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Anna - I've been on Elemental Extra 028 for 5 weeks and I find it very palatable. I'm usually very fussy with tastes and textures but I actually quite like these drinks and they come in several flavours. The only flavour I don't really like is the banana one, but the others are all nice tasting and very easy to drink.
04-14-2012, 09:59 AM   #19
annawato
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Thanks Sarah, I'll see if the hospital nutritionist is able to get me some in to try. I've had ensure before but from the little research I've done think it may not be 'elemental' enough ie its not digested in the first part of the small Intestine, although I think the one you suggest is so i'll follow up on it. Its all very confusing and i guess just trial and error.
06-15-2012, 10:23 AM   #20
Piranha
 
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I'm on 028 Elemental Extra cartons, I'm not sure if you can get it in there states or now? I find its the only thing I can tolerate. Even this drink makes me bloated, constipated and feeling really really uncomfortable . But other drinks like Ensure, Fresubins and Fortisips are much much worse.

The taste of drinks is foul as well, really yucky, but if you freeze them and have them ice cold it kind of makes them a little more tolerable!
They taste even worse when you throw them up!
04-22-2014, 11:38 AM   #21
moonstraw
 
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I have used Absorb Plus. It is better than the other elemental drinks out there. Better quality ingredients, no bad fats or sugars. You add your own fat so you can add high quality flax seed oil or something healthy. However, it's really expensive and you have to order it through the mail which costs a huge amount. I can't find any locally in Toronto. If anyone knows where to find it more cheaply I would be grateful. Even though I am in remission, I like to drink it for a day or 2 if I am starting to experience pain. It prevents it going any further. There must be a way to get it cheaper.
04-23-2014, 07:52 PM   #22
SupportiveMom
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My daughter is using Peptamen Jr 1.5

Have you tried the Specialty Food Shop in SickKids hospital moonstraw? When I was in there they had a whole bunch of brands I never saw before. I would call them if you haven't already.
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Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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