Help? Nutrition - Rose -Mrs D - ????
 

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

some ideas...
 

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.

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!

:eek:

Soy milk
 

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

Sorry I'm no help
 

Glad you received some good info.

rose

liquid flax oil...
 

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.
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.

Thans for tips!
 

:) Silverlady - I got some soy milk - going to give it a shot with the Instsnt breakfast and see how it "sits".......

Mrs D - printing out your info - apprciate the tips - I have ask lots more questions to the cardiologist about whats going on - he did bloodwork for conditions that can cause cardro-myopathy - all ok (exccept again amyloid need biopsy) - but it looks like its up to me to pull all together - so going to talk to GP after i get thru the surgery and see whaz up..... also, mixing supp with what my body is used to is probaby good idea - the juice tastes great but feels like its eating its way thru the rest of the way - so I have a feeling my guts just arent used to it - even though I got the lowest acid type fruit juices I could find.....

We did try erithromycin - but the docs took pity on me because the stomach cramps - even at a very small dose - were unbelileve - it does help some with gastroparesis though!

So thank you! My immediate goal for next two weeks is be strong enough for surgery - and find the right anestshesiologist who is willing to work on a heart patinet (I've already had it cancelled because of this)..... then move on to heart/back/gut issues etc...!

good luck...
 

on your surgery...hopefully you can prepare a bit before.

Surgery places huge needs on protein stores, and zinc levels for healing.

Keep us posted...we'll all be rootin for ya!

Mrs D
 

Thanks - just ordered the oil - and also looked at the cardiac link- my ejection fraction is over 11% below normal - this girl is going to do everything I can to try to stop this!!!

:eek:

Mrs D?
 

Hi - :)
I've tried using the flax oil with just broth.... and also the protein powder with the broth.... while easier initially to ingest - (and I gained 5 lbs in two weeks - which is great) - my intestines on both got VERY swollen and angry...... do you have an idea why they may be reacting like this? Obivously I'm absorbing the stuff with no problem cause of the weight gain - but the after results of being up all night in pain at this point isnt worth the trade off...

Any ideas?????:confused:
Thanks!

Well, the weight gain is good for you.
 

But I don't understand your description: swollen? Does this mean gas?

Angry? Does this mean diarrhea?

I could not find the ingredients (inert) on the net. And I am not at work
for a few days...so can't look there either.

Some powdered products put maltodextrin in them, to aid in mixing.
I personally have a problem with maltodextrin, so I would not be surprised
if others do too.

What kind of broth? You know bacteria LOVE broth...they grow them in broth.
Some bacteria in your bowels, might be having a field day with the broth (since you had antibiotics recently).

I am glad you are gaining:) ..I hope most of that is muscle gain. The whey protein is good for lean muscle mass.

Hi Mrs D...
 

Sorry - should have been more specific..... after I had surgery in October they thought I had C-Diff again - but after a couple of weeks dia. stopped and hasnt come back....

I had seen the nutritionalist just before surgery to try to both cut my constant nausea by lowering fat intake (and since only on liquids drinking lowest fat Ensure I can - which is 6gm/can) which at same time gain weight... I'm lacotse intolerant so no ice cream - etc... so the nutritionalist wanted me to try Beneprotein in juice - I just felt more nauseus with the juice....... she also suggested Carnation Instant Breakfast with soy milk - but again, same with the nausea (although yummy)....

I then tried the flax seed in the Ensure - but my lower intestines got very swollen and sore (not gas - just feel swollen) - (nausea about the same) ... so my lastest endevor was the protein powder in just bullioin cube broth - (I cant even drink the liquid low fat chicken broth, it tastes great but then I'm up all night sick - but can usually tolerate the boullion broth with no problem - of course it has no nutritional value) - the buillion is easier to tolerate.... going down was fine (just minimal nausea at first, and gained 5 lbs in two weeks - which was awesome) - but, lower intestions starting getting very very sore, and swollen - and just to test, stopped the powder and after a couple of days I'm back to normal pain and swelling is gone....... also tried a pro-biotic for a couple of days - felt my my guts were going to explode!

I know it takes your intestines a long time to adjust to any change - but this is getting scary because a permanent "J" tube (not "G" tube) (complete with IV is my last choice cause of infection, complicaitons, etc... I already have so many other health issues).... I know the protein powder helps me gain - the kind I was drinking - Beneprotein - I'm looking at the can - dont see ingredients other then Whey Protein Isolate (then it says Milk - could this be part of the problem) and also listed as ingredient soy lecthin)... I will give them (Novartis) a call tommorow and ask about the maltodextrin...

I really appreciate your help - who ever thought trying to eat and gain would be work?????? (I dont have an eating disorder and in fact LOVED to eat before I got the autonomic symtoms) - this is driving me nuts!!!!!!!!!!!!!!

Thanks for any help:)

Hi Kathy
 

How did you go with Novartis? It seems that certain things work for you, but after a week or so you get a bad reaction. Have you thought about rotating things around. Say on Monday have the Carnation,. Tuesday the Ensure, Wednesday the broth and so on...?

It just seems that having the same thing day after day is causing your nausea and intenstinal pain after about a week.

I know there are all sorts of things available in Australia but I don't know if it's basiaclly the same stuff. I am finding it difficult to comprehend that the nutritionist hasn't been abale to come up with something for you, and you are having to go through this.:mad:

Can you ask your doctor if you can be directed to other patients with gastroparesis so you can get some opinions & information from them?

When I go see the SF specialist over here, the waiting room is packed. She is the only one who does autonomic testing. I often wonder why can't we register somewhere where we can get in touch with each other to discuss like issues. I mean I can't be the only person who has autoimmune PN in the whole of Sydney. Yet there is no way for us to come together to communicate, even if it's only by email.

I want to offer more, but am unable to because i don't know alot about nutrition. Have you thought of talking to another nutritionist for more information?

Kmeb,
 

I am getting an impression that you still have lower bowel problems.

Cramping there, causes nausea. I have a complex severe GI congenital defect.
Let me share this with you. The feelings preceding an obstruction are silent, until ischemia starts to develop and then pain starts. There is really little
feeling in the intestines, otherwise. But you can feel cramping and distention from gas.

Feelings of "going to explode" suggest to me, GAS. And since you do not
consume fiber, which would help absorb gas produced by bacteria in the bowel,
your colon is not functioning properly.

The majority of whey products are lactose free. This is because the manufacturing process does not pick up the lactose portion.
example: http://www.qfac.com/whey_protein.html
Lactase enzyme is available in drops to add to any food/drink dairy based. And there is a Lactaid milk, which is very good (I use it).

I am starting to think that you may need l-glutamine supplementation. This amino acid is necessary for the normal maintenance of the lining of the GI tract. Please read this:
http://findarticles.com/p/articles/m...20/ai_20801957
The author is James LaValle...who co-wrote Drug Induced Nutrient Depletions textbook.
and this: http://en.wikipedia.org/wiki/Glutamine

I think you have multiple problems, and this makes your task much harder to
accomplish. Gastroparesis nerve damage, and nasty bacteria in the bowel!

Some whey protein products have extra l-glutamine added.
this is an example:
http://www.nowfoods.com/?action=itemdetail&item_id=3105

I am also worried that you are not getting enough potassium. This is a critical electrolyte.

Commercial bouillon contains hydrogenated fats, high sodium, and monosodium glutamate..which is an inorganic form of glutamate hard to tolerate.

And you need to consider that anything going into a J-tube will end up in the problematic colon anyway.

Have you tried simethicone? This helps one pass gas. It is available in a liquid form-- drops (intended for babies) but it can be used by adults. It may help with the gas/distention discomfort.

I don't know what else to suggest.:o

Aussie and Mrs.D.
 

I'm printing out your messages right now - thanks for the suggestions... As soon as the busines day starts out there I'm going to call Novartis and see about the powder - but I think your completely right about the small bowel problems Mrs D.... I have VERY good docs except for GI doc - and cannot find a motility speicialist...... the doc who diagnosed me with Gasptroparesis has moved out of state but even five years ago motility tests show very slow gastric empty times... and other docs have said after only listening to my intestines thats its obvious my problems are from lack to motility due to the neuropathy........ (the new GI doc I was just referred to wants me to start all over again with Gastric Empty Study, then barium swallow etc etc.. not the small bowel and other colon tests that should be done but I dont think he's familiiar with.... (but I have to work with him - he's best "buddies" with my GP - who is great) - so must tread very carefully because its taken years to find my neuro and GP - who welcome a complicated patient... (and they work together at their hopspital and are heads of their departments)

Will check out all the links and look into the suppllements mentioned... Also, I used to drink lactaid milk with my cereal before I got sick - maybe I could tolerate it - worth a try!

(and Mrs. D. - on the J tube - I agree - I do belong to a gastroparesis support group on line - and I know without testing first to see if my intestintes can tolerate the feedings that the tube will be just as bad -- BUT - again, the doctors get so bent if I suggest this to them....)

Aussie, also, what is SF?????

So, this group is truly a better help then them in this case..... I'm going to follow up on all of this and truly appreciate the hellp and suggestions......

(my goal is just one nausea free day - then we go from there!!!!!!!!!)

:)

SF=small fibre

what about strained baby food diluted in chicken broth
 

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.

Gaining Weight
 

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 :eek: - 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:mad: 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!