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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Are there better alternatives to e028?


09-30-2014, 03:55 PM   #1
Joanne83
 
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Are there better alternatives to e028?

Hi, I'm new to this forum.. I was diagnosed with crohns in February this year, although have suspected it for over ten years. I was told repeatedly I just had IBS which I'm sure is a familiar story for many! I was actually already on humira at this point as I was diagnosed with ankylosing spondylitis in dec 2012. It helped my back pain a lot but did not improve my gut symptoms at all. I tried budoneside earlier this year which also didn't seem to help, although I did gain a few pounds. I am currently quite under weight so trying really hard to gain weight by testing different supplements, however I seem to react badly to them all! I have tried ensure plus, fortisip, Fresubin, modulen and now e028. They all make me extremely bloated and I have experienced gut pain far more often since trying them. (I have had time off inbetween each one when symptoms resided). Anyway, just wondering if anyone has had any experience with these at all or found some other supplements that they don't react to?! I always seem to react to sugar and all of these supplements seem high in sugar.. My dietician and gastroenterologist have both said there is no reason why I should react to sugar, but I definitely do!! I currently eat a low fodmap diet which has helped to an extent, but it's very hard to gain weight with.
Any advice would be appreciated! Thanks
10-01-2014, 07:56 AM   #2
UnXmas
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I've never reacted badly to any meal replacement supplements, but I have tried an awful lot of them, so I think I can name some you haven't tried.

My first thought was Complan, as this comes as savoury soups as well as milkshake style, so if it's the sweetness that's causing you problems, that might suit you better. You can also get it in savoury powders, which you can mix into ordinary food.
http://www.complan.com/tasty-chicken/
In the UK you can buy Complan in chemists, but I don't think it's prescribed by doctors.

Along with various types of Ensure and Fortisip, I've also been prescribed Fortijuice - like fruit juice as opposed to milkshake, though personally I found Fortijuice disgusting! - and Calogen Extra Shots. The Calogen shots probably aren't that much different from other milkshake style supplements, but I think they have a higher fat content, as they are more calorie dense, so they come in very small quantities, which may possibly help you.

Also check out this website http://www.nutridrinks.co.uk/ . There must be something there you can tolerate!
10-02-2014, 08:47 PM   #3
Lady Organic
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Hi I have only used Vivonex Elemental diet (canada), similar to E028. However, plain regular sugar is not in the ingredient list, carbs are maltodrextine and starch, other forms of sugars. have you tried both versions of E028? i think the canned version contains sugar, but the powder for contains starch instead, but I am not 100% sure. Hopefully you find a product that can work for you. I have read on this forum another poster mentionning he had strong reaction when consuming sugars.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
10-03-2014, 04:16 AM   #4
tzvia
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I am taking Absorb Plus right now. I find the ingredients to be of a higher quality than most Elemental diets. They use stevia to sweeten their products, but they also have an unsweetened version without the stevia
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Diagnosed with Crohn's in 2007, symptoms since 2000.
Hospitalized with bowel obstruction 8/2012
Ileocecectomy with 9" removed 10/2014


Current meds: Entocort, Questran
Past meds: Prednisone, Humira

10-03-2014, 12:05 PM   #5
Lady Organic
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yes I remember about lurking on absorbplus website. Its true the ingredients are great, definately the best I can remember. The price is very expensive though if we want to rely on it as a whole diet plan. plus shipping cost.. I think about almost 1 bottle /a day right? Plus this products I belive is independant of pharmacies so I dont think insurance refunds it just like the other brands such as Vivonex or E028, unfortunately. Vivonex was in most part refunded by my insurance.

does your insurance refunds it?
you take it as supplement or full diet?
10-03-2014, 01:12 PM   #6
tzvia
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yes I remember about lurking on absorbplus website. Its true the ingredients are great, definately the best I can remember. The price is very expensive though if we want to rely on it as a whole diet plan. plus shipping cost.. I think about almost 1 bottle /a day right? Plus this products I belive is independant of pharmacies so I dont think insurance refunds it just like the other brands such as Vivonex or E028, unfortunately. Vivonex was in most part refunded by my insurance.

does your insurance refunds it?
you take it as supplement or full diet?
I'm just taking it as a supplement to gain weight before my surgery next Tuesday, and I plan to take it as a meal for several days as I recover from my resection and transition back to solid foods. I'm just paying for it out of pocket. I bought 2 containers, which cost $120 including shipping all together. I didn't even ask my insurance, but anyone interested could call their insurance company to see if it would be reimbursed....perhaps it would be if they could get a Dr to write an RX for it? One jar has 40 scoops, which is 10 servings. One serving is 360 calories.

Expensive, but worth it for me right now. I plan on using it for about 2 weeks.
10-03-2014, 01:22 PM   #7
tzvia
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About insurance... I just copied this from the Absorb Plus website:

"Is Absorb Plus covered by insurance?

That depends on your insurance policy. We have customers who are able to get the cost of Absorb Plus completely covered by having their doctor write a prescription for it. A Canadian customer gets it covered by having his doctor write a letter stating that his life would be in danger without Absorb Plus and then he had to buy it from a Pharmacy. He gave us the name of a pharmacy near him and we arranged for the pharmacy to order product from us. Other customers have managed to get partial rebates for the cost on their tax return. Regulations vary from country to country and also according to your insurance policy. Keep in mind that Absorb Plus is a supplement, it is not a drug and so does not have any kind of drug licensing number - which some policies require."
10-06-2014, 07:52 AM   #8
Spooky1
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I too have tried so many of the liquid diet formula's and with very little luck. I'm on Vital 1.5 at the moment. It's full of sweeteners that don't agree with me, but it's calories. Apart from that it's the bland potatoes and fish or potatoes and turkey with an egg or two here and there. A bit boring really.

I hope you find one that helps.
10-07-2014, 12:45 AM   #9
Joanne83
 
Join Date: Sep 2014
Location: London, United Kingdom
Thanks for all of your responses. I will try to see if I can find a supplement with less sugar! I struggle with so many foods, dairy, gluten, citrus, fructose, all sugar, onions..the list goes on. However, when I stick to rice, potatoes, fish, bananas, linseed, a few types of green veg and olive oil on everything.. I seem to be relatively ok. I am trying to include these supplements and ignore the symptoms that they are giving me but it is hard!! I ran out of the e028 about a week ago and just starting to feel better now, but have lost a little weight as a consequence. Anyway, I guess it is all about trial and error! Good luck to everyone out there trying these things!
10-10-2014, 09:36 PM   #10
Lady Organic
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Thx for the info tzvia,

I just remember that my insurances will cover only products with DIN (identification) pharma number. So this one would not be covered.
Im really hoping they will develop soon new formulas with better quality ingredients.
When I used Vivonex, I called the company Nestle and complain about the use of GMO corn derivates as main ingredient in the product. I encourage people to call their suppliers to improuve the quality of the feds. if no one speeks, nothing will change, or it will take longer.
wishing you speedy recovery after your surgery, let us know how it went,
best to you
10-22-2014, 05:26 AM   #11
Spooky1
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Hi, Joanne,
How are you getting on? I'm just wondering if you are still searching for the best low sugar/sweetener replacement stuff. I would be interested if you have found any that I haven't tried as I'm still not happy with the one I'm on.

I understand your despair about food limitations as I have the same as you but rarely have veg or fruit. Hope all is going well for you at the moment.
best wishes
Diane
11-27-2014, 11:59 AM   #12
Spooky1
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Well, I just found out my dietician has left and I have a new one to see who will be changing my PEG for me every few months. I'm going to be asking her if I can change from Vital 1.5 to something without a sweetener in. I see her next week, so I am remaining hopeful as I hate side effects of sorbitol etc.
02-13-2015, 01:40 AM   #13
Joanne83
 
Join Date: Sep 2014
Location: London, United Kingdom
Hi spooky, did you have any luck getting an alternative supplement? I ended up getting a prescription for e028 as I couldn't find anything better..but I haven't been very good at drinking them as they just made me feel worse. My consultant recently put me on antibiotics to see if they might help me.. I've been feeling worse to be honest..off to search for a thread on that now!
03-13-2015, 08:36 AM   #14
Spooky1
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Well, I'm on E028extra now, its the powered form, but... omg, the tiny bubbles get into the pump area and set the alarm off. It is pissing me off that the alarm goes off so regularly.

I have strained the lumps out of the mixture, let it settle, then put it in the bag, then let it settle for an hour, and I have flicked the bag and sight chamber and still it says there is air in it and beeps at me.

anyone know how to get rid of the bubbles? I'm starting to despair over this. My last was ready to hang and I had no problems.
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