[BEGLET]

Hi - for our nutritional experts out there - a question.....

I have severe gastroparesis (stomach paralysis and also affecting intestines) and have for 6 years now - part of my autonomic neruopathy.... I have been lkiving only on liquids but its getting worse - and have constant nausea even with mediciations I take all day long to just be able to digest the liquid (I'm drinking Ensure - 6 gm fat - 250 caloreis...)

Met with dietician and GI doc last week - since I'm unable to gain weight and after losing 30 lbs last year (I'm skinny to start with - NOT a good thing) - I've been able to gain back about 7 - but have surgery in two weeks which may snatch all that away (had surgery at Christmas and lost 10 lbs in 5 days)..... although I'm getting IVIG that is giving me increased energy in general and better balance - the GI symtoms symtoms unforutnately are not getting better - and the docs are making one last ditch effort to change diet before putting in a "J" tube (which may or may not work - this type of tube bypasses your stomch and goes straight into intestines - requires consant IV feeds of liquid supllements and pump to run - and would for life - there can be a multitude of complications - including serious infetions, emergency vists as tubes come out of place etc.... they want that as a last resort.)

They feel if I can reduce the fat intake in my diet even more but at the same time increase calories it may help the digestion/nausea/and help me gain weight......

I was given a protein powder (BenePROTEIN) to mix with juice - to substiutute instead of an Ensure - but I find myself doubled over in pain and even sicker from the stuff..... They also suggested Carnation Instant Breakfast - which has no fat powdered - (I'm lactose intolerant too) - and I'm going to try mixing that with maybe soy milk (which I havent yet tried) or water - that will give me nutritional needs but only has about 150 calories if not mixed with milk - our goal is 2000 a day......... the clear "liquid" nutritional supplements sold by Ensure and Boost - while no fat - have had the same dobling over in pain effects.....

Any suggestions anyone????????

My goal is: NO FIBER (its too hard to digest)
As little FAT as possible (again, too hard to digest)
Lots of protein and of course the vitamins and minerals I've been gettiing in Ensure (I dont have malabsorbtion - my blood counts are good right now)
Celiac is not a problem.
Ideal calories - 2,000/day.
Can only tolerate about 40 oz liquid a day - spread out in tiny "meals"

Appreciate any suggestions...

Thanks

[mrsD]

First off kmeb--- everyone is very unique with food issues.
After searching Ensure...I can tell you that the maltodextin in there would
make me totally sick...I avoid that additive like the plague. Also carrageenan,
is hard for some people.

Benefiber is guar gum, and is a clear fiber, not a protein source.
There is a product Resource Beneprotein... is that what you meant?
I don't see why you could not mix either (depending on which you have)
into the Ensure...since you are "used" to Ensure.
When introducing a new thing, don't do a full portion. Start with only
a 10% addition, which is very small, and you might tolerate that.
Instead of juice I'd do 10% of the Beneprotein into Ensure once a day.
Then increase to 10% in two feedings the next day. Stop at any intolerance.
Coast for a while at your found comfort zone.

You must have adequate fat... without EFAs the body cannot maintain the
nervous system. I don't know why you can't digest fats...do you need
digestive enzymes? Have you tried them? It is not clear from Ensure how much omega-3 you are really getting...you should call them up and ask
for a gram amount/serving. They do not list it on their label. Since fat delays stomach emptying, you could add any additional EFA to the last swallow, which you saved for later, when the majority of the feeding is past time. You know how that goes..how long that takes. If the fat is taken away from volume you might tolerate it better.
It would be such a small volume, it would be easier to
tolerate that way...instead of a full stomach of liquid, that has delayed emptying. There is liquid flax oil you could try, in tiny incriments like with the protein powder.

Ensure is not meant to be a meal replacement 100% forever... it just does not have
all the nutrients we need daily. For temporary use, it is okay, but many
commerical formulas are not complete. An example is that in the preemie baby world they have just discovered that the TPN used for certain newborns was killing them because of inadequate omega-3 content. And this is after 20 yrs of experience with TPN (total parentaral nutrition given IV).

A "G" tube may work for you... there is a gal on another forum whose daughter with brain damage had one put in, and now she can go back to school. You do need technique, but it can be done.

None of the interventions/foods/made commercially can keep a person going forever. They all have limits, based on current knowledge. They get a bit better each year, but all have weaknesses.

You are seeing specialists, and I would only suggest at this time that
you try the things they offer, but only in very small amounts to work up
to a tolerable level.

I hope you find solutions soon.

[BEGLET]

Mrs D. -
sorry - its beneprotein - not benefiber! (and is made by Resouce)

Unforutnately - with gastropareiss there is damage done to vegas nerve - so stomach and intestines dont contract as necessary to push thru food - and there are ony a few medications on the market that will help with this (reglan - domperidone - propulsid) - all have bad side affects/and or are contraindicated for those with heart issues (I also have heart rythm problems and advancing cardiomyopathy - I'm hoping from the autonomic issues too - although the docs are again telling me to get tested for cardiac amyloid based on tests done a couple week ago that show priogression of cardiomypathy from a year ago)....

Fat is very diffiuclt to digest - as is fiber - thus gastroparesis goes against the norm we are taught (fresh fruits, veggies, etc. those are totally off limits) some peoplw with the disease can tolerate fish or no skin chicken - but depends on severity.... we know I need a little fat - but again - as little as possible.... (digestive enzymes dont help)

Unfortunatey - a G tube wont work because my stomch doesnt push food thru - so best case senario is J tube - and last step TPN (straight into veins) which carries even more deadly side affects - again - this is probaby for life as I've declined over 6 years - not improved.... (the Ensure actually has kept me alive again with normal blood work for 6 years - but the nausea is becoming so debiliting its hard to think straight)

I will try maybe even smaller amounts of the "powder" with different liquids as you suggested - maybe the old guts just need time to adjust? (also, appreciagte info on liquid flax oil - can you recommend where I could get on-line to try some and a good brand - I know this is your area!)

Neuropathy has much farther reaching consequences if it starts to affects other nerves I'm finding - and its scary!

[Silverlady]

Karen,
I use soy milk. I've found the soy milk in a vanilla flavor to be very good. I read the ingredients of it this morning and it has omega 3's and 6's in it. The last one we got was Silk brand. But Walmart has a brand that is equally good. I just don't care for the plain flavor, but the vanilla is good.
Billye

[rose]

Glad you received some good info.

rose

[mrsD]

You could start this with DROPS... 20drops is about a milliliter in volume.

If you put 10 drops in one feeding, once a day.
Then if you tolerate that do 10 drops in 2 feedings.
If you tolerate that do 10 drops in 3 feedings.
up to 5 feedings would give you 1/2 teaspoonful of flax oil.

This would not overload your feedings with fat, but at the end of the day
you would be ahead with the nutrient. And it would then help you heal.
Fat slows stomach emptying for everyone. But in small increments you will not notice it.
This is the best flax oil on the planet:
http://www.iherb.com/store/ProductDe...&pid=BAR-00016
Keep in the fridge when you open it. (it has an expiration date)

The same with the protein. You can mix a small amount (there is a scoop in
it) with water, and add to your Ensure 10% of one scoop only to start. Forget the fruit juice... use what works for you.

I would worry about the cardiomyopathy.. from protein starvation.
Also carnitine is used for cardiomyopathy...it is available OTC in caps, which you can mix into the Ensure.

Metabolic

* Endocrine diseases - Hyperthyroidism, hypothyroidism, acromegaly, myxedema, hypoparathyroidism, hyperparathyroidism, other

* Diabetes mellitus

* Electrolyte imbalance - Potassium, phosphate, magnesium, other

* Nutritional - Thiamine deficiency (beriberi), protein deficiency, starvation, carnitine deficiency

from http://www.emedicine.com/med/topic289.htm

Start slowly, and introduce the protein and fat, slowly, very slowly.

Have you tried the erythromycin therapy? It is listed on some gastro sites, and also used in patients with scleroderma who lose GI function.

Also since your nerve is suspect, I'd try high dose thiamine. This really works for many neuropathies, and although an old treatment, it is still valuable, and inexpensive.

[kasobie]

Originally Posted by kmeb

Mrs D. -
sorry - its beneprotein - not benefiber! (and is made by Resouce)

Unforutnately - with gastropareiss there is damage done to vegas nerve - so stomach and intestines dont contract as necessary to push thru food - and there are ony a few medications on the market that will help with this (reglan - domperidone - propulsid) - all have bad side affects/and or are contraindicated for those with heart issues (I also have heart rythm problems and advancing cardiomyopathy - I'm hoping from the autonomic issues too - although the docs are again telling me to get tested for cardiac amyloid based on tests done a couple week ago that show priogression of cardiomypathy from a year ago)....

Fat is very diffiuclt to digest - as is fiber - thus gastroparesis goes against the norm we are taught (fresh fruits, veggies, etc. those are totally off limits) some peoplw with the disease can tolerate fish or no skin chicken - but depends on severity.... we know I need a little fat - but again - as little as possible.... (digestive enzymes dont help)

Unfortunatey - a G tube wont work because my stomch doesnt push food thru - so best case senario is J tube - and last step TPN (straight into veins) which carries even more deadly side affects - again - this is probaby for life as I've declined over 6 years - not improved.... (the Ensure actually has kept me alive again with normal blood work for 6 years - but the nausea is becoming so debiliting its hard to think straight)

I will try maybe even smaller amounts of the "powder" with different liquids as you suggested - maybe the old guts just need time to adjust? (also, appreciagte info on liquid flax oil - can you recommend where I could get on-line to try some and a good brand - I know this is your area!)

Neuropathy has much farther reaching consequences if it starts to affects other nerves I'm finding - and its scary!

FROM KASOBIE, in a medical field. This is a long time after your comments, but what about strained baby foods which could be further liquified with chicken or beef broth as tolerated? That way you have a wide range of choices.

[BEGLET]

Thanks for strained baby food suggestion - I'm actually seeing my GI doc tomorrow after a recent weight loss of 9 more lbs (very bad thing) - I moved to a more hadicapped accessible place in the past month - but it took a real physcial toll - and my doc is going to be very upset about the loss as I am too - but I couldnt help it - the physical stress was so hard on me I just lost and lost (I'm starving all the time but the gut just cant handle it) - now I'm about settled and am going to work on gaining however I can.... also been computerless (yes, again for those of you who know my luck with puters) so timing of your e is perfect - just got back on line.....

Heres to gaining weight!