Crohn's Disease Forum » Surgery » Stoma Subforum » EEN for perianal disease (but have ileostomy)


07-16-2018, 01:56 PM   #1
Nosebag
 
Join Date: Jun 2014
Location: Ireland

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EEN for perianal disease (but have ileostomy)

Hi everyone

I'm going to ask this question to everyone even though it's probably a stupid question to ask so here goes.
I have an end ileostomy the last 3 years with my large intestine still in place. I decided to keep my ileostomy as when I had a previous loop ileostomy I took no crohns meds and I was really well.
I have never had perianal abscess or fistula but over a year ago even though my large intestine is diverted I got an abscess in the perianal area. I was fine for two years with no crohns meds and over the last 7 months my disease has gone crazy. I am taking stelara every four weeks but I now have arthritis,erythema nodusum,lung pain, severe pain in my diverted colon and fissures/rash that continues to spread around my perianal region. I pass blood/mucus from my back passage most days even though there is no food passing through.
I don't how I was fine for two years with no meds and now my disease has exploded.
My stupid question is would a elemental/semi elemental liquid diet help even though the crohns is effecting the diverted colon?
08-14-2018, 11:58 AM   #2
ncman
 
Join Date: Sep 2014
Location: United Kingdom

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Hi Nosebag, Sorry to hear you're going through this. Interesting question. My understanding of the elemental drinks is that they give the gut bacteria less to do - everything is already broken down - hence reducing the inflammatory response. As there is no food passing through your diverted colon, I doubt they'd help directly, although may help in reducing the overall inflammatory response in general, which may calm it slightly.

So my totally unqualified thoughts would be that the diverted colon was a separate problem to the CD flare up. How are you getting on anyway?
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Advocate of the dietary treatment of Crohn's, as detailed in The essential guide to controlling Crohn's Disease, Colitis and Other IBDs by Professor John Hunter

Other supplements as needed: Adcal D3, Sytron (liquid iron, much more gentle on the stomach)
08-14-2018, 03:01 PM   #3
Nosebag
 
Join Date: Jun 2014
Location: Ireland

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Thanks for your reply I really appreciate any advice. I am on the semi elemental diet the last week and it's definitely improved my abdominal pain which is great. As for my perianal inflammation and other issues it hasn't really had an effect. I don't know if it could and will just take more time.
It's a bit more difficult with an ileostomy doing a liquid diet particularly since I haven't a great amount of small intestine. I have lost weight already so I don't know if staying on the drinks for a long period of time is a good idea.

Thanks again for your advice.
08-14-2018, 09:20 PM   #4
my little penguin
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Nose bag you shouldnít be losing weight on amino acid based formula
(Elemental formula )
It only takes a few inches of healthy intestine to absorb the nutrients
They use it for short guy syndrome

You will lose weight
If your not drinking enough

Ds was on 2000 -2250 calories at age 7 of formula

Age 14 he drinks 48 oz of neocate jr plus a lot of solid foods
Neocate jr makes a prebiotics version that thins the bm
Or regular which causes more constioation due to lack of waste

Amino acid based has very little waste

Some do get liquid in
Liquid out thing happening
But elemental shouldnít cause that

Good luck
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08-15-2018, 04:14 AM   #5
Nosebag
 
Join Date: Jun 2014
Location: Ireland

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Nose bag you shouldnít be losing weight on amino acid based formula
(Elemental formula )
It only takes a few inches of healthy intestine to absorb the nutrients
They use it for short guy syndrome

You will lose weight
If your not drinking enough

Ds was on 2000 -2250 calories at age 7 of formula

Age 14 he drinks 48 oz of neocate jr plus a lot of solid foods
Neocate jr makes a prebiotics version that thins the bm
Or regular which causes more constioation due to lack of waste

Amino acid based has very little waste

Some do get liquid in
Liquid out thing happening
But elemental shouldnít cause that

Good luck
Hi
08-15-2018, 04:23 AM   #6
Nosebag
 
Join Date: Jun 2014
Location: Ireland

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Sorry My Little Penguin

It's semi elemental I'm on because I used EO28 before for an elemental diet and lost a lot of muscle mass. I have read studies that have stated this seems to be common with elemental diet as opposed to semi elemental.

I'm definitely not drinking enough then because I'm only on 1800cals. I don't think they agree with me to be honest so maybe elemental will be better absorbed.

Thanks for your advice
08-15-2018, 07:08 AM   #7
my little penguin
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They no longer make e028
It used to be used as a supplemental formula meaning it was elemental but not complete nutrition
So you couldnít use e028 as your sole nutrition
Also was meant for kids under 13 so not the right nutrition for an adult


Elemental might help but make sure itís COMPLETE nutrition
And itís for adults otherwise you will have issues

1800 is not near enough
Semi elemental probably isnít being absorbed depending how short or inflamed your gut is
Your GI should be able to get you samples of complete nutrition amino acid based formula for adults

Most amino acid based canít be done orally due to taste
And needs an ng tube
Teenagers put it in at night so their feeds and pull in the am

My kiddo drinks all his neocate jr chocolate orally
Given his age he is ok with it still but soon he wonít be able to use it
If he needed complete nutrition solely from formula

He is using his for growth /weight right now plus food

Vionex is elemental and for adults
Not sure what else is available in Ireland
08-15-2018, 08:58 AM   #8
Nosebag
 
Join Date: Jun 2014
Location: Ireland

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They no longer make e028
It used to be used as a supplemental formuila meaning it was elemental but not complete nutrition
So you couldnít use e028 as your sole nutrition
Also was meant for kids under 13 so not the right nutrition for an adult


Elemental might help but make sure itís COMPLETE nutrition
And itís for adults otherwise you will have issues

1800 is not near enough
Semi elemental probably isnít being absorbed depending how short or inflamed your gut is
Your GI should be able to get you samples of complete nutrition amino acid based formula for adults

Most amino acid based canít be done orally due to taste
And needs an ng tube
Teenagers put it in at night so their feeds and pull in the am

My kiddo drinks all his neocate jr chocolate orally
Given his age he is ok with it still but soon he wonít be able to use it
If he needed complete nutrition solely from formula

He is using his for growth /weight right now plus food

Vionex is elemental and for adults
Not sure what else is available in Ireland
Hi

As far as I know E028 is nutritionally complete. I know it comes up as E028 extra do maybe there are different types. I have received E028 orally and through the ng tube. Also Professor Hunter recommends it for adults as treatment for finding dietary triggers.

I have asked about vivonex before but it doesn't seem to be available here. There will have to be an alternative if E028 is no longer available.

I have been on a number of different ng feeds but was trying to avoid being fed by my if possible.

Where are you located my little penguin?
08-15-2018, 03:56 PM   #9
my little penguin
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We are in the US
Eo38 splash
Is now neocate splash in the US at least
https://www.neocate.com/splash/

A few years ago at least inthe US
Eo28 splash was not nutrionall complete
But the newer version is complete
But only for little kids under 13
08-15-2018, 06:46 PM   #10
Maya142
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I believe the formula for Neocate Splash is very similar to the old EO28 - the packaging did change and there are slight changes to the formula, but that is it.

We were told EO28 was nutritionally complete - or at least, I understood that it was several years ago, when my daughter was severely underweight and was being put on formula. But I may have misunderstood.

There are several adult elemental formulas - Tolerex is another one I think.

This is the difference between the old EO28 Splash and Neocate Spalsh according to the site:
At Nutricia, we work hard to ensure that individuals receive the best possible nutritional support. We periodically improve our products based on the latest medical and scientific knowledge. The new and improved Neocate Splash is now upgraded to better meet the nutritional needs of children and teens.

Improvements:

Increased level of protein equivalents (PE) per drink box*
Increased levels of 27 out of 29 vitamins and minerals*
New look packaging
Simpler name ("E028" has been removed)
* Compared to Neocate E028 Splash

Similarities:

Amino acid-based
Hypoallergenic
Same 3 flavor options
Same clinical indications
Note that Neocate Splash is replacing Neocate E028 Splash will be discontinued starting October 2017.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
08-23-2018, 04:01 AM   #11
ncman
 
Join Date: Sep 2014
Location: United Kingdom

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Cheers for the heads up mlp, I had no idea they'd stopped producing e028! But no, the adult version (or what's left of it if you still have some lying around!) is nutritionally complete - I know that Prof Hunter had at least one patient on it for many months (not CD related, something to do with malabsorption and growth issues).

What's the main other difference between the elemental feeds?

Because elemental/semi-elemental is to do with the length of amino acid chains.

So the differing elemental feeds - would I be right in thinking it is how the fat is formulated?
08-23-2018, 04:55 PM   #12
Maya142
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One of the semi-elemental formulas - Peptamen Jr - contains hydrolyzed whey protein in the US - my daughter was unable to handle that (caused diarrhea about 10 times a day), but was able to tolerate elemental, amino acid based formula (Neocate Splash).

The difference in the protein in elemental vs. semi-elemental formula made a big difference to her gut.

In terms of fat, Peptamen Jr. had 9.6 g and Neocate had 12.1 g. Adult Peptamen had about 9 g too.
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