Status
Not open for further replies.

affected

Guru status reached
Joined
Apr 26, 2013
Messages
16,096
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
We were not going to get to see the gastroenterologist about having a PEG inserted until December, but our speech pathologist had a chat to him and we got brought forward.

We went to see him today and he has set the procedure for Friday 11th.

So I feel like I'm entering a whole new phase, and rather nervous. I know I can learn to look after it no problem, I was a nurse many, many years back, and so that bit is OK.

I think for me it's the change in relationship - I'm going to again be more carer than wife, and extra level of his dependency on me. His hands are not stable enough by any means that he will be able to self feed through it.

I will do a search here and I'm sure I will find many old topics about the PEG, looking after it, recipes and all kinds of things. At first I'm a bit unsure to try making our own food for it, though I'm really heartened that some people are doing this successfully.

I'm so thankful that I have this place to come for help and advice. We have great health service support here, but there's nothing like the people here who have been living it.
 
I was really afraid of the peg when I learned that my mom would have to get one. For us it was a very easy transition to make. She no longer has to worry about choking her food or meds down. She still can (barely) eat some pureed foods and ice cream, but if it is a particularly bad swallowing day she doesn't have to take anything by mouth. My mom still has the use of her limbs but my family and I do the feedings because she could never understand how to do it herself (86). I'm sure this will become second-nature for you in no time at all.

We only do jevity 1.5 thru the tube for her nutrition. I don't put real food thru the tube. She also gets meds and a syringe full of prune juice daily to maintain regularity. Good Luck!
 
Tillie

There is a member here who has developed recipes for the PEG, she wrote several blogs about it. Her name is Rose. I pray you both will do just fine and the PEG will be a big help.
 
When my wife got her feeding peg, she could still eat.

3/4 eating 1/4 feeding peg.

We were told that 4 containers of Nutrent 1.5 was a full day, so she got 1 container and ate.

Then 2 containers................50/50
then 3 containers...................25/75
then ( lat November ) 4.........0/100

When she went to 100%, the nurse recommended we try 2 Nutrent 1.5 and 2 Jevity 1.0 ( something about fiber in Jevity )

I am curious why people would go to the work of feeding prepared food via peg.
Is it for cost saving reasons?

The person with the tube doesn't have taste buds in their stomach so thus they are getting no enjoyment out of either.

Also, with prepared foods one has to be VERY careful not to plug up the peg.

My wife has had peg nearly 2 years now and no problems whatsoever.

Not only has it given her an extra year of life to see the kids and grankids, it has relieved me ( the caregiver ) of watching her choke as she struggled o eat .
 
I am also curious as to why people prepare their own food to put in the tube. Don't we have enough to do?
 
thanks I do appreciate honest input.

regarding recipes for real food - my PALS likes the idea of real food rather than synthetic which it seems most peg formulas are.

I'm happy really to go with the commercial stuff, it's true I have more than enough to do, but I know also that some people are preparing their own food, so I'm interested in thinking the options through.

I'm not at all worried about learning to look after it, and I agree it will be a relief for us both as meal times are so long and drawn out and he struggles so much.

I think it's more just the fact of progressing along another big notch ...

Bowser can I ask if you have had any problems with constipation or diarrhoea with the peg diet?
 
Tillie, it seems my wife has had problems with constipation even before ALS and prune juice seemed to be too much for her to handle ( a total 180 to the extreme )

The Hospice nurse has been helpful with suggestions and by giving her 2 over the counter stool softener pills and a spoon of stool softener powder daily, she is perfect in that regards.

Since I am quit different than the wife with bm's, it would probably cause me to be " loose as a goose "

The way we are now doing it is working out perfectly ( fingers crossed)
 
thanks, that's good to know bowser.

I think that some people like to use some home prepared foods in the peg to help with fibre, but I could be wrong ...
 
My only concern about the commercially prepared formulas is that there is so many hidden MSGs in it. MSG is a neurotoxin.
Everyone knows that some people react to the food ingredient monosodium glutamate. What many don’t know, is that more than 40 different ingredients contain the chemical in monosodium glutamate (processed free glutamic acid) that causes these reactions. The following list has been compiled over the last 20 years from consumer reports and information provided by manufacturers and food technologists.

There is a very long list of ingredients
Glutamic acid (E 620)2
Glutamate (E 620)
Monosodium glutamate (E 621)
Monopotassium glutamate (E 622)
Calcium glutamate (E 623)
Monoammonium glutamate (E 624)
Magnesium glutamate (E 625)
Natrium glutamate
Anything “hydrolyzed”
Any “hydrolyzed protein”
Calcium caseinate, Sodium caseinate
Yeast extract, Torula yeast
Yeast food, Yeast nutrient
Autolyzed yeast
Gelatin
Textured protein
Whey protein
Whey protein concentrate
Whey protein isolate
Soy protein
Soy protein concentrate
Soy protein isolate
Anything “protein”
Anything “protein fortified”
Soy sauce
Soy sauce extract
Protease
Anything “enzyme modified”
Anything containing “enzymes”
Anything “fermented”
Vetsin
Ajinomoto
Umami


Names of ingredients that often contain or produce processed free glutamic acid during processing:

Carrageenan (E 407)
Bouillon and broth
Stock
Any “flavors” or “flavoring”
Maltodextrin
Citric acid, Citrate (E 330)
Anything “ultra-pasteurized”
Barley malt
Pectin (E 440)
Malt extract
Seasonings

(1) Glutamic acid found in unadulterated protein does not cause adverse reactions. To cause adverse reactions, the glutamic acid must have been processed/manufactured or come from protein that has been fermented.

(2) E numbers are use in Europe in place of food additive names.

Check out the ingredients in the formulas. I stopped giving Tim "Boost, Ensure, etc." as they contained many of these ingredients.
Now Tim is still able to speak, chew and swallow, so I haven't had to deal with a feeding tube yet, but I do make a smoothy every day for him. He becomes shaky, and depressed if he doesn't get it when we are travelling. I started making a big batch and keeping it in a cooler for him when we are away from home. He regained the 30 lbs that he lost initially, and then a little bit more.
 
been making my own health drink for almost 4 years but do use whey protein would you share what you use in tim's smoothie. I use lot of fruit, berries, grapes, apples, oranges, ect and 10-15 grams of creatine still looking for ways to improve it
 
been making my own health drink for almost 4 years but do use whey protein would you share what you use in tim's smoothie. I use lot of fruit, berries, grapes, apples, oranges, ect and 10-15 grams of creatine still looking for ways to improve it

Do you use RAW whey protein? It is shown that high heat damages the amino acids and nutrients that give whey its immune supporting qualities.

I prefer to use organic if I can, and all of these ingredients can be purchased at Costco. You can also order it from Nutiva online, and it is even less expensive, and it will be delivered to your door.
I actually don't use any protein whey at all. I use organic vanilla yogurt 3/4 cup, 1/3 cup of organic hemp hearts ( extremely high in protein and minerals), 2 TBSP organic Chia seeds, 4 TBSP or more of organic coconut oil. 1 organic banana, juice of choice (carrot, pomegranate, cranberry, grapefruit, etc) to make it thinner, Echinacea and Gold seal drop, grape seed extract 1 dropper, Ennerex Greens (usually gluten free) 1TBSP ground organic flax seed, and 1/2 cup of frozen fruit. Tim loves peaches, strawberries, and grapes. Blend ++++
I also throw in some bee pollen.

I have it down to a system, and it takes about 5-10 minutes to make, and I make my breakfast while it is blending. I also eat yogurt with hemp hearts, chia seeds and fresh fruit. I find that I can go a lot longer before I get hungry. Because I am never sure I will get a break at work, and I have a tendency to become hypoglycemic, I find that this works better than any other breakfast I have had in the past.
 
Do you use RAW whey protein? It is shown that high heat damages the amino acids and nutrients that give whey its immune supporting qualities.

I prefer to use organic if I can, and all of these ingredients can be purchased at Costco. You can also order it from Nutiva online, and it is even less expensive, and it will be delivered to your door.
I actually don't use any protein whey at all. I use organic vanilla yogurt 3/4 cup, 1/3 cup of organic hemp hearts ( extremely high in protein and minerals), 2 TBSP organic Chia seeds, 4 TBSP or more of organic coconut oil. 1 organic banana, juice of choice (carrot, pomegranate, cranberry, grapefruit, etc) to make it thinner, Echinacea and Gold seal drop, grape seed extract 1 dropper, Ennerex Greens (usually gluten free) 1TBSP ground organic flax seed, and 1/2 cup of frozen fruit. Tim loves peaches, strawberries, and grapes. Blend ++++
I also throw in some bee pollen.

I have it down to a system, and it takes about 5-10 minutes to make, and I make my breakfast while it is blending. I also eat yogurt with hemp hearts, chia seeds and fresh fruit. I find that I can go a lot longer before I get hungry. Because I am never sure I will get a break at work, and I have a tendency to become hypoglycemic, I find that this works better than any other breakfast I have had in the past.

"Tim loves peaches, strawberries, and grapes "

How can he tell if it is being fed thru a feeding peg ? ( topic of this thread was feeding peg )
 
Hi Tillie.
As Vicki said,rose is very knowledgable about peg care and food.......she does have blogs and wrote on the gadgets forum.
She does not come on the forum much now but can contact her if you want any advice........she actually has a web site now I think dedicated to the peg.
I see we have 3 new peg forums opened by david......would be good to get rose back to share her knowledge.
 
What a great idea David THANK YOU

It makes a lot of sense to organise a PEG section.
 
Status
Not open for further replies.
Back
Top