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06-28-2012, 07:14 AM   #61
crohns1996
 
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i've had a look but i can't seem to find it, do you mind giving me a link please?, thanks
06-28-2012, 07:30 AM   #62
DustyKat
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Hey crohns1996,

I'm pretty sure the forum is no longer password protected so you should be able to access it...

http://www.crohnsforum.com/forumdisplay.php?f=67

Dusty.
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Mum of 2 kids with Crohn's.
06-28-2012, 07:33 AM   #63
crohns1996
 
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thankyou dusty!
06-28-2012, 10:34 PM   #64
Mom2oneboy
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Just want to say again how much I love EN! We weighed S today and he is now 90lbs!! When we started on 4/2 he weighed 74lbs. Most of the weight has come on in the last 8 weeks. He looks and feels SO much better.
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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
06-28-2012, 10:54 PM   #65
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Need I say more!

Dusty. xxx
06-29-2012, 07:43 AM   #66
Tesscorm
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Woohooooo!!!!!!!!!!!! Way to go S!!!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
06-30-2012, 06:19 PM   #67
crohnsinct
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My 12 year old daughter was drinking shakes and water only. The doc approved one piece of gum a day. Helped with the need to chew and also gave her some taste.

Hang in there! You are incredibly brave to be doing this and I admire all you kids. I hope you come back at the end and tell us you got great results!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
06-30-2012, 06:21 PM   #68
crohnsinct
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Momtoone: WOOHOO! Way to go S! So happy for you guys!
08-18-2012, 11:27 AM   #69
Twiggy930
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Bump
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
09-14-2012, 06:45 AM   #70
kiny
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I am trying liquid food again just because I think it might help me. I had real EN when I got crohn 10 years ago as a little kid (parental nutrition English name I think), through my neck intravenous in the hospital (completely bypassing the intestine). For reference I was about 30kg, (that is 66 pounds) , as a young adult (16 years old). Their first priority was not crohn, but the fact I was so skinny (not anymore atm).

So some time ago I wasn't a fan of EN, even though it helped me, because I couldn't understand the mechanics behind it.

But since talking to people I have seen this used in Japan a lot, it's incredibly common and the first therpay is EN, for adults too.

So since then I have also been reading a lot of papers and changed my school to reflect my disease so I understand it better.

And now I can see why EN could work, there are a few reasons they believe it can work. One is bioavailability, which can help nutritional status. Another is antigen response, food is full of bacteria, EN tends to be low on bacteria. Another is the microparticles, food often has microparticles, they don't digest, and you get inflammation from the undigested particles, EN is low on microparticles.

(I think should be distinction between normal EN and drinks though, mostly of the studies use EN from nutricia or nestlé or whatever brand they use in the US, not drinks like ensure or fortimel or something, which is something very different I feel, they are very different from normal EN, those drinks have never helped me much, only the preparations like 028 or special EN from baxter or other brand, EN differs greatly from brand to brand, some are just water and cheap casein and sugar)

Well, I slightly changed my mind on EN, I think it's helpful, if real EN is used but cheap drinks have never helped me, that is all really.

Last edited by kiny; 09-14-2012 at 07:09 AM.
09-14-2012, 07:26 AM   #71
kiny
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I looked up what peptamen junior is and it is hydrolysed whey, it is bioavailable protein, where they broke some of the peptide bonds between amino acids, protein are long bonds of amino acids, it is the most bioavailable protein you can eat.

There is a negative to hydrolysed whey too though, it often has milk fat (even though it is much lower than in whey concentrate or casein), it is really really expensive to get all the lactose out of hydrolised whey and to remove all the fat is even more expensive. Even though peptamen junior says "100% hydrolised whey", I do not believe it, because the best they can get to is something like 98%, and there will be 2% milk fat and some carbohydrates which is the lactose. They call things with less than 1% lactose, lactose free, but if you actually check the label you will see 1% carbohydrates, it's not added sugar, it's lactose.

Other option is albumin what I use now, it's egg protein, it has longer amino chains but it is 0% lactose, but it is lower bioavailable, it is still better than casein though. Albumin is somewhere between casein and whey in bioavailability (uptake in the body).

Casein protein and soy is the cheapest to make, that is what ensure uses, that is why if you look on the ingredient list of ensure you will find "soy" and "casein" and if you check the label you will find fat and carbs. It's cause they use cheap protein, like casein and soy, instead of whey isolate or albumin. Most of those drinks are cheaper than real EN because they are cheaper to make, the most expensive part of EN is not the sugar they put in them or the vitamins, it's the type of protein that is in it. The way the brand seperates the protein from a food source and the type of food source used determines the cost of EN.

I think if you use something like ensure you might as well make it yourself with better products, a whey isolate (ion exchanged) with low lactose will have better bioavailability than ensure can have, and it will be lower in lactose or use albumin, also both will be cheaper than the ensure or fortimel drink and healthier.

Last edited by kiny; 09-14-2012 at 07:47 AM.
09-14-2012, 11:31 AM   #72
my little penguin
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To be a complete nutrition source such as EN or What you used as a child TPN
There needs to be fat (oil) , carbs, and protein.
Even TPN has this without it your body would not survive.
E028 is amino acid based so it is a true elemental formula .
Peptamen is milk peptide based so it is considered semi elemental.
Ensure and boost are whole protein based so polymeric formula.
Each step amino, peptide and whole requires more of the intestine to be working.
There are many studies which found there was no clinical difference in remission rate between elemental and polymeric formulas in kids with crohns .
However with crohns everyone is different.
Some gain and tolerate ensure - not my kid.
Some can handle Peptamen - my kid .
Some need the elemental - your case.
As our Gi said whatever they are willing to drink and still works that is what you go with.
Ibd is not a one size fits all .

Thanks for the info .
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09-14-2012, 12:41 PM   #73
Tesscorm
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Kiny,

I am not very knowledgeable at all when it comes to the different types of formulas but, if I'm understanding MLP's descriptions correctly, I think my son's is amino acid based. If it's of any interest to you, his formula is called Tolerex (Nestle). I don't think I've ever read of anyone else on this particular formula here (don't know why??) but, perhaps, it's something that might work for you. The description on the Nestle site says it can be used orally - NOT SO! It smells absolutely horrid and we were told it had to be ingested by NG tube (because of its taste).

From the nestle site (http://www.nestle-nutrition.com/prod...90eaf6a5556f):

Tolerex Elemental Powder
100% Free Amino Acids, Very Low-Fat Formula

100% free amino acids with only 2% of calories from fat

Requires minimal digestive functionality for assimilation while providing the benefits associated with continued use of the GI tract


Thanks both Kiny and MLP for your info!
09-14-2012, 12:53 PM   #74
kiny
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yes, need some kind of fat for energy storage and few other functions

but casein fat from ensure is specific fat, it is milk fat, it is butterfat, saturated fat, milk fat is associated with crohn in a recent study from Nature because it causes dysbiosis in IL10 KO mice , specific dysbiosis that promotes immune response, do the same with polyunsaturated fat like safflower oil and it doesn't happenhttp://www.nature.com/nature/journal...ture11225.html

"Milk fats increase the amount of taurine-conjugated bile acids that promote growth and metabolic activity of sulphate-reducing, bile-acid-tolerant bacterial species, such as B. wadsworthia, which in turn stimulate pathogenic immune responses in genetically susceptible hosts."


protein extracted from casein done on the cheap (like ensure does) will leave considerable amounts of milk fat, not present in high amounts in whey isolates, and not at all present in albumin

agree that you need some kind of fat, but type of fat does matter, ensure is not the same as many EN, it is cheap protein to lower costs, and that's why they use casein

extraction of amino-acids by breaking peptide bonds depends on the protein

only complete protein is animal protein (why I don't agree with vegetarians), extraction of protein from soy like ensure does does not lead a balanced amino-acid profile

another downside to soy and casein use is that the protein becomes denatured if cheap filter processes are used, if they use low cost protein, I wouldn't doubt the filtering process is on the cheap too (whey isolate ion exchange causes denaturing too, but it makes up for it with very high bioavailability, which casein doesn't have)
09-14-2012, 01:05 PM   #75
kiny
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Kiny,

I am not very knowledgeable at all when it comes to the different types of formulas but, if I'm understanding MLP's descriptions correctly, I think my son's is amino acid based. If it's of any interest to you, his formula is called Tolerex (Nestle). I don't think I've ever read of anyone else on this particular formula here (don't know why??) but, perhaps, it's something that might work for you. The description on the Nestle site says it can be used orally - NOT SO! It smells absolutely horrid and we were told it had to be ingested by NG tube (because of its taste).

From the nestle site (http://www.nestle-nutrition.com/prod...90eaf6a5556f):

Tolerex Elemental Powder
100% Free Amino Acids, Very Low-Fat Formula

100% free amino acids with only 2% of calories from fat

Requires minimal digestive functionality for assimilation while providing the benefits associated with continued use of the GI tract


Thanks both Kiny and MLP for your info!
thank you, I like nestlé and nutricia a lot, did not know of that one

think the smell is from hydrolised whey, it smells horrible in all forms unless you add artificial sweeteners, the more it smells the better the bioavailability is

every protein is a bunch of amino acids on a chain, connected through peptide bonds

what hydrolised whey does is take whey from cheese, they filter it by breaking peptide bonds and you get whey that is very bioavailable since they broke the peptide bonds for you, which means the child has to use less enzymes. OP EN is hydrolised whey too from nestlé, I think this is the same whey formula.

(only thing I don't like is the fats, because it is milk fat, but it (hydrolised) makes up for it by being super bioavailable, casein does not make up for it at all, it has the milk fat and it has super low bioavailability compared to whey, that is why it's so cheap compared to expensive EN from nestlé and nutricia)
09-14-2012, 07:36 PM   #76
my little penguin
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http://www.naspghan.org/user-assets/..._Control_of.29[1].pdf

Study on different EN in children stating elemental vs polymeric did not make a significant difference in children.

This is the key children tend to do better overall on EN then adults in general terms.
The paper also gives guidelines etc....
A good read
09-15-2012, 02:58 PM   #77
crohnsinct
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Thanks for the link MLP that is actually the study I read before speaking with our doc about EN.

Now what I will say is this...our doc (Boston Childrens born and raised) put O on EN and said, "Boost and Ensure". He never mentioned the other types of formula, and it worked for O who had severe colonic involvement and did 6 weeks exclusive Boost and Ensure.

Now the way I figure it choices of EN formula are probably as individual as everything else with this disease.

I imagine our doc goes Boost and Ensure first because in his experience it is probably the easiest for kids to comply with because of the taste. If for some reason it isn't helping a child maybe he works he way down the chain to the most bioavailable. Vice Versa, I imagine some docs go straight to the most bioavailable forms and when the kids refuse to drink it or use a tube maybe work their way to the more tolerable formulas.

Sound familiar (step up or step down with drugs).

The way I see it whatever way you can do EN it is well worth it because although we used Boost and Ensure it helped us avoid adding other drugs (she was on Remicade), helped her reverse her weight loss, and got her well on the road to remission!

I feel the same way about all treatments. Whatever works to give you your child back go for it!!!!
10-03-2012, 12:25 AM   #78
David
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Regarding trace minerals while on enteral nutrition, this is a good paper.

In short, in addition to all the usual vitamins, get your kids zinc and selenium levels tested while on enteral nutrition. Especially since people with Crohn's disease are commonly deficient in them anyway.

Do not blindly supplement them as they can lead to toxicity.
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10-03-2012, 08:09 AM   #79
Tesscorm
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Haven't read the paper yet (so maybe the answer is there???) but do you mean EN when used exclusively only or even when it's just a supplement?

Is there an overall 'vitamin' panel blood test? I sometimes feel like I have an neverending list of things I want the doctor to test
10-03-2012, 09:17 AM   #80
David
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I'm not 100% sure if it was total or supplemental as I couldn't find the article specifically say which though the caloric intake makes me think supplemental.
All patients had low disease activities [Crohn’s disease activity index (CDAI)<150 [13]], and these patients were regarded as inactive phase. All patients were placed on an enteral nutrition regimen with Elental® (Ajinomoto pharmaceutical. Ltd., Tokyo, Japan). The daily caloric intake from the enteral nutrition was 1,093 ± 239 (mean ± SD) kcal for over 1 year.
Obviously different formulations are going to provide different micronutrients. So some may provide adequate zinc and selenium. However, both are nutrients that people with Crohn's disease are commonly deficient in. I think the big takeaway is that while enteral nutrition is a fantastic treatment option, it's not always going to provide every nutrient everyone needs in perfect amounts so nutrient status needs to be monitored.
10-03-2012, 09:59 AM   #81
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Thanks David. You're absolutely right, using EN as a supplement does give a bit of a false sense of security that between diet and EN, ALL nutrients are covered. After another post you made, I realized Stephen was only getting approx. 10% of his daily choline requirement from his EN formula so have made a more conscious effort to get more in his diet.
10-03-2012, 12:33 PM   #82
awmom
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I am not sure if it has been previously brought up, but we have been using a supplement called Absorb Plus. My son did a liquid diet using Boost a year ago, and now he WILL NOT drink it!!! I am trying to boost his calories with something easy to digest and he is willing to drink this product. We add coconut oil instead of the suggested flax because he says it tastes a bit better. It is not elemental, but I think it might compare to peptamen. I am not sure the formulation is good for little ones, and the amount of protein seems high to me, but for a supplemental drink it it seem to be the only one my son is willing to drink. I like the fact that it has no carageenan (?) or other additives.
10-11-2012, 12:58 AM   #83
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My son started EN yesterday. He finds both the taste and consistency vile but has decided to persevere! We have added a vanilla pod to the powder to give it some flavor and he has reduced the amount of water to make it thicker which he prefers. He complained yesterday of feeling starving! Is this normal? He is taking 250ml 6 times a day of Modulan exclusively. I was so relieved when he got home from school with empty shake containers. Seems like a number of his friends have various protein or health shakes at school so he felt absolutely fine to bring his out. He has only just been diagnosed and besides his 2 best friends, he has not yet said anything to the rest.
10-11-2012, 09:55 AM   #84
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So glad to hear that he is managing to drink the shakes. My son did 6 weeks of EN with Modulen but he used a NG tube. If he is feeling hungry I would give him more shakes. I was told that there is no upper limit on the number of shakes that can be consumed. My son was consuming 3000 calories per day but that was to gain some weight back that had been lost. If you are mixing the Modulen at regular strength then 250ml x 6 would be 1500 calories. Depending on the nutritional needs of your child that might not be enough.

Keep in mind that if he starts to have trouble drinking the shakes that the NG tube might not be as bad as you think it might be. My son was able to insert the tube in about 12 seconds and he found it to be no big deal. He would definitely prefer the tube over having to drink the shakes.

Good luck with it all and keep us posted on how it goes!
10-11-2012, 10:06 AM   #85
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Hi Robs a, my son did the 8 weeks on Modulen but also had to do the NG tube (he had to go to high school with the tube attached to his cheek). It definately works really well - allowed him a few months with no symptoms. Good luck with everything.
10-11-2012, 11:01 AM   #86
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I mentioned that my son prefers the shake to be quite thick so instead of 210ml of water he has reduced it to approx 125 ml. This obviously reduced the amount he needs to drink at a time. I am concerned that he may not be getting enough and am encouraging him to drink lots of water over and above the shake. The vanilla pod that I added into the powder has certainly improved the taste for him. I hope he can keep this up!
10-11-2012, 11:09 AM   #87
my little penguin
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You really need to call the company on using less water(Nestlé I believe)
There is a reason for the water by making it higher conc. it could cause more issues you wouldn't want. There is a product called "thick it" which you may ask your Gi if you could use and add to it. You still use the same amount if water.
I agree the calorie count us way too low .
DS drank 1750 in calories at age 8.
Good luck
10-11-2012, 11:40 AM   #88
Tesscorm
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My son also used the NG tube at night. He was taking in 3000 calories per day (2000 ml).

Agree with my little penguin re concentrating the formula. In my son's case, we were told to concentrate the formula, however, when we have discussed using modulen while on vacation, our dietitien specifically told us not to concentrate the modulen.

If you have any choices formula brand to use, Peptamen 1.5 (1.5 cal per ml) is a concentrated formula compared to Peptamin (1 cal per ml) - allowing the same amount of calories with less volume. (However, please get your GI's approval before changing brands).
10-15-2012, 12:00 PM   #89
kiny
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I've started to mix my EN with juice sometimes, fruit juice, because I got sick of the taste lately. I also mix it with glutamine sometimes if I get sick of the fruit juice, since glutamine has a particular taste and I dump some glutamine in it and drink it like that. Only time I used a tube was in the hospital but it was intravenous through an artery, I just drink my EN now.
10-15-2012, 12:10 PM   #90
kiny
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Calorie count for EN isn't the same as regular food, if you take EN you tend to have less stool, because the stuff in EN is sugar + protein + micronutrients. The sugar gets take up for the most part, and the protein from good EN is usually hydrolised whey isolate, so if you give that to someone they will be able to digest almost all of it, because the protein has been preabsorbed (less enzymes needed to break peptide bonds) which results in more calories.

3000 calories in EN is higher than 3000 calories in normal food, often much higher depending on the amount of enzymes someone produces.

If you go on EN stool tends to be almost oderless at times, because everything is digested and you have to produce few enzymes to break it down because it's hydrolised whey protein. If you drink lots of milk and drink lots of casein protein (like those drinks that aren't EN), your stool will not smell nice, because the enzymes couldn't digest it all, and that's why stool smells.
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