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semi-elemental or elemental formula like Crohn's Clear

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Crohn's Disease
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Posted 9/1/2008 1:50 PM (GMT 0)
Does anyone know where I can get a semi-elemental or elemental formula like Crohn's Clear?

Or even recipe.

Hubby is in a flare, that started in June, started to get under control, and is now back in full force. (all within 3 months AARRGGHH-discouraging) Prednisone isn't working this time(sigh)

And he hates to not eat solid food. I can get by with "Jello" (SCD legal homemade).

Is there something that would make him feel full?

Thanks,

m4dcks

 

Posted 9/1/2008 2:07 PM (GMT 0)
If you really want semi-elemental/elemental, you may be able to find them at drug stores or a medical supply store. Otherwise--online/Ebay but you will pay a lot for shipping.  If you can find the book by Jini Patel Thomson she discusses how to make it from scratch and sells a product called "Absorb Plus" but it is expensive.

You don't really need to use such a formula, polymeric ones work the same, taste much better, and cost a lot less. I can tell you this from personal experience. I have lived off a polymeric formula for months but can barely get through half a can of Peptamen (semi-e) it's that awful.

Something like Boost, Ensure or Ensure Plus, and there are generic versions of those two. There are also higher-fat versions, I personally have used Nutren...maybe you can find that at a medical supply store or a hospital pharmacy.

Good luck.

Posted 9/1/2008 2:12 PM (GMT 0)
I was told Boost, Ensure or Ensure Plus weren't recommended. I will look for Nutren.

Can anyone give me some information as to what I'm doing? We are so new to this whole lifestyle, and I don't even know why I need this, except that he is loosing a lot of nutrition because of the flare(I am assuming). Probably why he is so weak, and tired.







 

Posted 9/1/2008 3:25 PM (GMT 0)
Here’s a link to a well established and well documented elemental formula, Vivonex: http://www.nestle-nutrition.com/Products/Product.aspx?ProductId=a3bc4b10-3701-4020-9742-d947a30ed612

You will also find a link to purchase it on the page. All the elemental formulas tend to be quite expensive, but this used to be the one of the best bargains, at least comparatively speaking, because it comes in packets that you mix yourself with water rather than in bottles. However, I don’t know if the pricing has changed. It was made by Novartis Nutrition, which was acquired by Nestlé Nutrition last year, so there may have been adjustments. Nestlé nutrition also makes Peptamen, a semi-elemental formula (http://www.nestle-nutrition.com/Products/Product.aspx?ProductId=d17ba8f2-6b9a-43c4-b683-55d0e590388f), and also some polymeric formulas, including Nutren, which Ilini mentioned to you. Many people do find that Ensure or Ensure Plus (both our polymeric formulas) work for them, so that’s another option, especially if you are on a budget. Your insurance company might cover the cost of total enteral nutrition for Crohn’s, because it’s a treatment that has been clinically tested and shown to be effective, but it depends where you live.

Regarding your request for more information, these elemental, semi-elemental, and polymeric formulas (referred to collectively as enteral nutrition), are an old treatment for Crohn’s disease that can still be very effective. They are liquid diets used instead of other food and beverages, usually for 2 to 8 weeks to induce remission. Some people also use them to maintain remission (using around 750 calories per day of the formula in addition to a regular diet). There are a bunch of different formulas, and they all seem to work about the same, but some people will respond to one type of formula and not another (not predictable in advance, it’s trial and error). Doesn't work for everyone, but generally you will see improvement within 10 days if you are going to respond, so you don't have to stick it out too long if it's not working. They will sometimes work in people who do not respond to steroids. The formulas provide all the nutrients you need in a day, so as long as your husband drinks enough of the formula (say, 2000 calories per day, or more if necessary depending on his size and activity level), he will not be hungry and will not lose weight. He can drink extra formula if he needs to gain weight.

Anyway, I hope that helps.
Posted 9/9/2008 1:59 AM (GMT 0)
Anyone know why Ensure is not recommended? My daughter has been using it from time to time because it's easy to get. I wasn't aware there are problems with it. From what I understand, specific formula composition has little to do with the success of enteral nutrition as a treatment option for the disease.
Posted 9/9/2008 12:27 PM (GMT 0)

infoarch2,

You are correct in what you say about formula composition. All the formulas seem to work about the same, although some people will respond to one type of formula and not another (it's trial and error). I think the qualms about Ensure come from older studies that seemed to show that higher-fat, whole-protein formulas weren't as effective as lower-fat, amino-acid formulas. However, later studies showed that this was not the case and that the different formula types were equally effective.


Posted 9/9/2008 4:48 PM (GMT 0)
My primary doc (not GI doc) recommended against Ensure because she thought the high sugar content might cause uncomfortable bloating. I have used both Ensure and the generic version--it's a lot cheaper--on occasion and I have not noticed that being a problem. I still prefer the Nutren only because you can get twice as many calories per drink.
Posted 9/9/2008 6:46 PM (GMT 0)
Im working on an appeal process right now with my Insurance company for Vivonex. Its been several weeks in the making. I had to get my GI to write a letter and so on. I faxed the paperwork today Ill let you know how it goes. Its about $700 a month if taken full time.....
Posted 9/20/2008 9:34 PM (GMT 0)

My daughter was first diagnosed with Crohn's disease November 2003.  I had never heard of the diseased prior to her diagnosis.  Since that discovery, I’ve numerous hours researching the disease and the various treatment options available for treating and managing the disease.  

 

I’m currently enrolled in a MS degree in Health Informatics at the University of Missouri, and I need to write a thesis.  For my thesis, I have written a survey specifically designed for patient's suffering from Crohn's disease.  The survey is intended to collect data about the treatment methods used by the patients, their knowledge of the treatment options available for treating/managing the disease, and the primary sources of information they used for educating themselves about the disease and it’s treatment options. 

 

I would greatly appreciate if you could take a few moments to fill out the survey.  Your personal experience is very important and I would like to hear about it.  The survey form is fully encrypted, contains no personally identifiable information, and has been approved by the University of Missouri IRB.  Parents of children diagnosed with the disease can fill out the survey on behalf of their child.  I will make my thesis available once I’ve completed it, which I’m projecting to be somewhere in the October-November time frame.

 

I have received permission from Peter Waite of HealingWell to post this survey.

 

The URL for the survey is:

 

https://www.surveymonkey.com/s.aspx?sm=dDs03O00OPwgncarZi41bg_3d_3d

 

 

Thanks in advance for your support,

Linda 

Posted 9/21/2008 10:17 AM (GMT 0)
Ensure is loaded with sugar.

Based on the ingredients, I suspect that Nutrien 2.0 would be a good choice; similarly, E028 Splash or something else from Nutrica may be better:

http://www.shsna.com/pages/pediatric_eo28.htm

Look for stuff with LOW sugar, preferably without maltodextrin (although I think they all have maltodextrin or corn syrup solids). Stay away from anything with corn starch. The fewer the carbs, the better.
Posted 9/21/2008 2:29 PM (GMT 0)
Last year I started using a product called Opti-Cleanse (by Xymogen) - it was recommended by my naturopath, and you can only get it from a licensed doctor/naturopath/chiroptactor, etc). And I am in Canada and have only been able to get it from the US so far.

It is a great product though. You have it in a shake format every day and it is very filling, especially when you add a banana or some other ingredients to it to thicken it up. Tastes a bit chalky when you first have it - but now I love it and have it every morning. I also add 2 scoops of IGG2000 to it (another Xymogen product). I have been taking this for probably the last 8 months (minus a month when I had my ileostomy surgery) and it has given me tons of energy and I feel great. (plus it is meant to heal your intestines which I definitely believe it does....

If you want more info on ingredients, etc - let me know. [email protected]
Posted 9/21/2008 2:37 PM (GMT 0)
I did a liquid diet on my own... making my own smoothies from yogurt, soy milk, fruit, protein powder, and slim fast powder. I added apple sauce and yogurt, and jello, broths, and some white rice. (which I know is not liquid). I don't know if I was getting the amount of nutrition I needed but I was keeping my electrolytes up with pedialyte. The gut rest for a few days was all I really needed.
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