enteral nutrition and SCD

[Guest guest]

I would prefer Enteral nutrition treatment as it has less side effects.

Any thoughts or suggestions? ,Commercially speaking, there really is nothing. I do find it confusing that you are still on SCD after 8 months with no really noticeable improvements. Have there been no small boosts in energy, less pain/cramping/necessary trips? No mental clarity improvements? If you want to sort of try 'enteral' nutrition it would basically be in the hospital with an IV (straight into the blood) because the type you drink would go to your gut and you would have similar issues with the illegal ingredients (and I hear they taste horrible). Have you tried making a pureed soup of whatever you eat? Make the broths (with a bit a vinegar and slow, long simmering, then strain) and then puree in a blender (Vitmix does an excellent job) along with the cooked meat and veggies you are eating. That would better than the garbage the pharma companies produce and it would have only a slightly

more 'physical' presence in your gut. It would get old drinking every meal, but since you could alter your veggies and such, at least you would have more variety than the commercial stuff. Just don't warm it in the microwave. There is research that shows that microwaving will convert a benefical amino acid found in broth into a carcinogenic one that attacks the heart, lungs, and liver (Weston A. Price Foundation).AmeliaHusband UC 9 years, SCD 17 monthssoon to start LDN

[Guest guest]

Also there is Nutrien 1.0, 1.5 and 2.0

.. My son drinks Nutrien 1.5 (375 cal/can). I know some people are

doing very well on the enteral nutrition protocol. You can try that

and after achieving a remission you can try to return to SCDiet. Also

it is wise to introduce every new food for about 10-14 days for

postponed sensitivity reaction from foods. Have you heard about Jinny

Patel 's book “Listen to your gut� That book addresses

all you ??

Good luck,

Chachka

Subject: enteral nutrition and SCDTo: BTVC-SCD Date: Wednesday, December 2, 2009, 6:13 PM

Enteral nutrition (elemental diet) has been evaluated in numerous clinical studies, in patients with IBD, and proven very successful in inducing remission. Elaine writes about this in Chapter 1, explaining how synthetic Elemental Diet relates to SCD. Unfortunately, when the Enteral nutrition diet is discontinued the symptoms usually return within 6 to 8 weeks.

There are four formulas currently available in the US:

Optimental (Abbott Nutrition)

Peptamen (Nestle Nutrition)

Vital HN (Abbott Nutrition)

Vivonex T.E.N (Nestle Nutrition)

None of them is SCD friedly. They all contain substances not allowed in SCD + artificial color/flavor etc. Does anyone know, if it would be possible to create an SCD legal, liquid only food replacement formula?

What are the potential risks of getting off SCD for 2-3 weeks, using enteral nutrition to get into remission, then continue on SCD? Did anyone tried that?

I am on SCD for the last 11 months with no noticeable improvements (I keep a detailed log). It is tough to say what impact it had on my health (the only way to say would be to re-live the last 11 months without SCD). I would like to stay on the diet (I still have hope), however, I am also looking for ways to improve my health. My GI wants to start me on biologicals/ immuran if my condition doesn't improve. I would prefer Enteral nutrition treatment as it has less side effects.

Any thoughts or suggestions?

[Guest guest]

And please listen to your own common sense in applying enteral nutrition into

your lifestyle.

I'm so sick of people referring to it as “garbageâ€. Yes, the ingredients are

not perfect for the health

nuts (and I refer myself to them to some extent) but these formulas save lives.

When my son was

Dx with Crohn's Disease over four years ago he was in constant pain, malnurished

and couldn't tolerate any food. I didn't know about SCD at the time but learned

about EN pretty quick. In four weeks after starting EN he was pain free and

gaining weight. It didn't send him to the hospital.

I'm very happy for people that are doing great on SCD. I wish my son can thrive

on it, but he can't tolerate many basic SCD legal foods so he still drinks his

formula and stays away from the “big guns†and hospitals.

Warm regard,

Chachka.

[Guest guest]

,

I can appreciate the frustration of not having a miracle.

I remember watching enviously as a woman who had been very, very sick,

who had a clean scope in under a year and a half, ate regular French

bread. She would have to be careful when she went home, she said, but she

could handle a few days of illegals without much worry.

Some of us heal fast. Some of us don't.

You've kept a complete diary, and that's spectacular. Would you mind

sharing with us what you're currently eating and drinking? Sometimes

there are details which completely escape us in our daily lives that

another person can spot, and make suggestions about.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Chatchka,

I'm really glad to learn that your son is doing well with the program you

are using for him.

Having dealt with cancer surgery last year, sleep apnea testing and the

adjustment to using a Bipap, the loss of my Mom, and coming up in the New

Year, an appointment with a rheumatologist to see about chronic pain

issues... yes, staying away from the Big Guns can be worthwhile.

Sometimes, conventional medicine has its uses, and this is something

which we SCDers should not forget.

SCD is accounted " fringe " now -- but in Dr. Haas' day, it was a

medical standard. One day it may be a medical standard again.

I've just finished viewing the presentation of the LDN petition to the

ish Parliament.

http://www.ldnnow.co.uk/1410.html

I hope that one day, SCD will have its day, as well, but as was pointed

out in the presentation, so much of the modern research in what ails us

is being done by companies for whom it does not make economic sense to

have use cheap techniques such as real food and out of patent drugs.

Sadly, our illness and suffering is good sense for them.

May I ask what foods your son can tolerate, and which ones he does not?

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

++And please listen to your own common sense in applying enteral nutrition into your lifestyle.

I'm so sick of people referring to it as “garbageâ€.++Chachka,My apologies if my comments offended you. I refer to it as 'garbage' in that just about every single item in those types of drinks are synthetic and usually not of natural origin. They wouldn't be able to have a patent on it if were natural. I am glad that your son is doing well on them. I would be concerned about how much healing is taking place and how much the drinks are really just a 'band-aid' and the possibility the positive benefit will diminish over time. I don't know, my husband hasn't tried them and I have no experience with them other than what information the doctors and makers have supplied. My sister-n-law is a registered nurse. Her blunt statement regarding it was if one really wants complete rest for the gut, which was what she was suggesting to my husband, it would require IV feeding in the hospital or at

home with a healthcare nurse to check on you. That was the only way no food would irritate and the body still receive nutrients. It would still be synthetic food/vitamins, though. Look, we all muddle through the best we can with what we know about our own bodies. Most of the time it is trial and error and what we are willing to sacrifice. For my husband, he wasn't willing to take that much time off work or out of the office nor is he willing to sacrifice taste and eating enjoyment. What can I say? My husband is a bit of a diva! We all offer our own experiences and opinions and that is all that they are. It is a statement about ourselves and our thinking, not about someone else's ideas or opinions.Again, my apologies for no offence was intended.Regards,Amelia

[Guest guest]

Marilyn,

I'm all for SCD! I'm all for Maker's Diet and juicing and everything else that

works for people and makes them healthy and happy.

To answer your question – my son was able to tolerate rice (I know, it's a no-no

for SCDers, at least in the beginning, but back then my guidance book was

" Listen to your gut " ), rice bread, steamed carrots (just little bit), steamed

fish, fish soup (chicken soup gave him cramps), organic turkey patties, little

bit of peeled red grapes, backed pears. He was able to eat just a little bit so

he continued to supplement with the formula. Yogurt gave his cramps, home made

cheese from yogurt gave him cramps, I tried goat milk for the yogurt and cheese

– no difference. Fresh homemade juices gave him cramps, he can't tolerate

potatoes. He was doing fine and then after a consultation with dietitian my son

tried peeled tomatoes w/o seeds, just a tiny bit (1 tsp or so) on several

occasions and it sent him in a full relapse. He had to go back on enteral

nutrition exclusively for several month again. We tried reintroduce foods slowly

again and again but with time he got worth, he hasn't been able to eat for over

a year now – his upper stomach hurts constantly and lab results are bad. My

parents started to buy special formula for him from Europe recently (Modulen

IBD, that was available here in the US over a year or two ago but not anymore

(no profits for the Nestle company) and help my son a lot in the beginning) and

send it here. We started new holistic treatment a month ago with the injections

from Germany and England under European doctor's supervision and he drinks flax

seed water for restoring his mucus lining in the stomach (again, maybe it's not

SCD friendly but it's very popular folk treatment in some European countries for

people with intestinal problems) and takes SCD legal probiotics. My son's health

started to bounce back. Not dramatically but ...

To Amelia.

Thanks for the nice response. I personally didn't get offended but I think

referring to some treatments

as " garbage " is incorrect especially if they can save intestines and at some

point lives w/o extra side effect. Reg. TPN. I don't know much about how save it

is on the long term for the stomach lining.

What I've herd from my son's European doctor (she has doctor's degree and

practiced for many years

as a family doctor but then found a desire to help her patients with the

holistic remedies) that it's

bad for the stomach to be w/o food for a very long period of time. Then stomach

acids start to attack

it's lining cosing erosions and ulcers. That's what might have happened to my

son and we are trying

to fix it.

To and everybody else interested in the EN. Here is a new book on the

market by Margaret A. Oppenheimer " Beat Crohn's! Getting to Remission with

Enteral Nutrition. " It's available on amazon and reviews are very nice. I know

several patients from different forums who contributed their stories to the book

(I recognized them even though their names were changed). I think it's the must

book for someone considering EN and then " Listen to your gut " and SCDiet.

All right, sorry for the very long post. Thanks for the opportunity to went (I

usually keep everything to myself).

Warm regards,

Chachka.

P.S. Sorry for my English – it's my third language and I don't write in it

often.

[Guest guest]

Hi Chachka,

Thank you for all the information. Looks like you have lots of experience with

the enteral diets. In the book you mentioned, the author writes that it is not

known exactly why the diet works, suggesting that maybe it is just the liquidity

of the food that makes it work. Did you try experimenting with liquefying

regular foods before reintroducing solids, or just to complement the diet? How

did it work?

I also noticed that there isn't much information about continuing with the diet

for longer periods of time. Giving up solid foods to be completely healthy

sounds like an excellent deal to me... based on how I feel right now.

Thank you for the tip about Modulen.

>

> Marilyn,

>

> I'm all for SCD! I'm all for Maker's Diet and juicing and everything else that

works for people and makes them healthy and happy.

>

> To answer your question – my son was able to tolerate rice (I know, it's a

no-no for SCDers, at least in the beginning, but back then my guidance book was

" Listen to your gut " ), rice bread, steamed carrots (just little bit), steamed

fish, fish soup (chicken soup gave him cramps), organic turkey patties, little

bit of peeled red grapes, backed pears. He was able to eat just a little bit so

he continued to supplement with the formula. Yogurt gave his cramps, home made

cheese from yogurt gave him cramps, I tried goat milk for the yogurt and cheese

– no difference. Fresh homemade juices gave him cramps, he can't tolerate

potatoes. He was doing fine and then after a consultation with dietitian my son

tried peeled tomatoes w/o seeds, just a tiny bit (1 tsp or so) on several

occasions and it sent him in a full relapse. He had to go back on enteral

nutrition exclusively for several month again. We tried reintroduce foods slowly

again and again but with time he got worth, he hasn't been able to eat for over

a year now – his upper stomach hurts constantly and lab results are bad. My

parents started to buy special formula for him from Europe recently (Modulen

IBD, that was available here in the US over a year or two ago but not anymore

(no profits for the Nestle company) and help my son a lot in the beginning) and

send it here. We started new holistic treatment a month ago with the injections

from Germany and England under European doctor's supervision and he drinks flax

seed water for restoring his mucus lining in the stomach (again, maybe it's not

SCD friendly but it's very popular folk treatment in some European countries for

people with intestinal problems) and takes SCD legal probiotics. My son's health

started to bounce back. Not dramatically but ...

>

> To Amelia.

> Thanks for the nice response. I personally didn't get offended but I think

referring to some treatments

> as " garbage " is incorrect especially if they can save intestines and at some

point lives w/o extra side effect. Reg. TPN. I don't know much about how save it

is on the long term for the stomach lining.

> What I've herd from my son's European doctor (she has doctor's degree and

practiced for many years

> as a family doctor but then found a desire to help her patients with the

holistic remedies) that it's

> bad for the stomach to be w/o food for a very long period of time. Then

stomach acids start to attack

> it's lining cosing erosions and ulcers. That's what might have happened to my

son and we are trying

> to fix it.

>

> To and everybody else interested in the EN. Here is a new book on the

market by Margaret A. Oppenheimer " Beat Crohn's! Getting to Remission with

Enteral Nutrition. " It's available on amazon and reviews are very nice. I know

several patients from different forums who contributed their stories to the book

(I recognized them even though their names were changed). I think it's the must

book for someone considering EN and then " Listen to your gut " and SCDiet.

>

> All right, sorry for the very long post. Thanks for the opportunity to went (I

usually keep everything to myself).

>

> Warm regards,

>

> Chachka.

>

> P.S. Sorry for my English – it's my third language and I don't write in it

often.

>

[Guest guest]

At 05:13 PM 12/4/2009, you wrote:

I also noticed that there isn't

much information about continuing with the diet for longer periods of

time. Giving up solid foods to be completely healthy sounds like an

excellent deal to me... based on how I feel right now.

Following my cancer surgery in 2008 (I had a 24 " incision across my

gut. My intestines were quite sore because of being moved around), I did

a clear liquids, thick liquids, pureed food, and then finally

reintroduced soft foods, and then normal foods. It gave my guts a chance

to recover from the insults of being shifted around, and from the

anesthesia. My oncologist appreciated the food-discipline after I got

home... said she didn't think most of her patients could follow it, but

she felt that it helped my recovery.

I did an awful lot of " vegetable smoothies " with cooked veggies

and meats or boiled eggs pureed in a vitamix.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

,

Initially my son had to give up solid

food for four weeks, then I've been told by some parents on the forum that protocol states 8 to 12

weeks, so we continued. Back then my son was taking 9 mg of Entocort

(he started Entocort first for several weeks with no noticeable

results then we started EN) and I decided to wean him from steroids

before starting reintroduction of food so I would be able to tell

that in case he'll start having problems it won't be because he

became steroid dependent. It took a wile. In my son's case it took 5

mos before he was able to try solid food again.

Again, I learned from other parents,

that it's wise to try every new food for 10-14 days. Sounds almost

impossible but we managed. My son started with rice, then carrots,

then some fish, soup from fish and carrots and so on until educated

dietitian screwed our reintro with tomatoes. My son's naturopath

recommended very mushy food, almost like baby food, but my son

refused to eat it like that. I know that juicing is supposed to be

great for healing many diseases (google Gerson's therapy for example)

but my son wasn't able to tolerate some of those that we have tried.

Reg. Enteral nutrition. Here is some

info reg. different types from the e-net - “In elemental diets the

protein source is from amino acids or short-chain peptides; such

diets were once considered the best form of enteral feeding.

Polymeric diets containing whole protein have a higher

energy:osmolarity ratio than elemental diets and have been shown to

be especially beneficial in treating children with Crohns Disease.

Oligopeptide diets contain short-chain peptides of 4-5 amino acidsâ€.

For some elemental formulas work best, for others polymeric, for

some it really doesn't matter. Plus, from my own experience, I have

noticed that outcome depends on the location of the disease.

Warm regards,

Chachka

Subject: Re: enteral nutrition and SCDTo: BTVC-SCD Date: Friday, December 4, 2009, 5:13 PM

Hi Chachka,

Thank you for all the information. Looks like you have lots of experience with the enteral diets. In the book you mentioned, the author writes that it is not known exactly why the diet works, suggesting that maybe it is just the liquidity of the food that makes it work. Did you try experimenting with liquefying regular foods before reintroducing solids, or just to complement the diet? How did it work?

I also noticed that there isn't much information about continuing with the diet for longer periods of time. Giving up solid foods to be completely healthy sounds like an excellent deal to me... based on how I feel right now.

Thank you for the tip about Modulen.