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An alternative for your feeding tube

pinedog
Posts: 3
Joined: Mar 2005

While they may work well for most people, the Novartis products that were prescribed for me I found wanting. I have seen on other forums that many have concerns about the nutritional value of these canned feeds. For me they were almost toxic. I felt sick from them. They were my only source of nourishment so I had to find an alternative. I couldn't tolerate enough to give me the calories to keep from losing weight. Luckily my naturopath came up with a recipe made from real food that really worked. . . . a recipe that goes through the tube. You have to make it yourself with a juicer and a blender. It's a lot of work to prepare but it is amazing how much better I feel after switching. I am not posting the recipe here because I don't want people to think I'm selling anything. I'm not. Just know there is an alternative that is made up of fruits, vegetables, tofu, nut butter, oils and about 20 items in total that when sieved will run through the tube.

I am just over one month past four weeks of twice daily radiation treatments for stage three throat cancer. Didn't get the extreme sore throat but was glad to have the feeding tube as any food by mouth is impossible to eat. To me almost everything tastes like cardboard liberally seasoned with chalk. The only thing I can get down without the 'yuck' factor are shakes and smoothies. I sailed through the treatments but for three weeks afterwards I went from riding my bike to the hospital every day to hardly being able to get off the couch. With the canned stuff I couldn't tolerate enough to provide the calories needed to sustain my weight. I've lost 30 pounds. Since switching to the real food formula things have turned around and I am feeling much better. Yesterday I started an exercise program and am planning to be back at work in a month or so. I'm not saying my improvement is totally related to the food I am taking. The natural process of healing is also at work. But taking control of my situation has stabilized my weight and improved my mental and physical outlook.

I'd be interested to know if others have had similar experiences. I searched the web and found it almost impossible to locate an alternative to the cans of 'chemicals' the pharmaceutical companies offer for the feeding tube.

Clearblue
Posts: 188
Joined: Apr 2010

Hey dog,
just post the recipe here.
Were all intelligent enough to read it , check it or chuck it!
By the way im still looking for someone who has had a j-tube (in the loer intestine, and not a peg, which is in the stomach).
Dont know if its possible to prepare an alternative through this.

Clear

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

This thread was started in 2005. People keep topping it looking for Pinedog, and his recipe, to no avail, as far as I know. He has only ever posted three times, probably just on this thread back in 2005. As I have suggested to the others that have posted here, maybe check out that Lucy's real food. I am thinking that with a Vitamix or a HealthMaster emulsifier you can make peg tube food out of just about anything.

sarahjane7194
Posts: 1
Joined: Oct 2011

my mom is having the same problem. she was diagnost with throat cancer and is going through radiation also. she is unable to tolerate the food through her feeding tube and is worried. she is only getting about 1/3 of the nutrition she needs. she talked to her doctor who said" you know your fighting cancer right" and my mom said " i know but theres only so much i can do" i am worried too because my mother is not one to worry about herself, just us kids. i would love to have your recipes and i will prepare them for her. i feel helpless and if i can do this for her and it works, would feel like a miracle. Thank you Sarah

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Hi there. Not sure who you are asking for those recipes, but this thread is like six years old, and in the last two years that I've been here, I've never seen pinedog make a post. Maybe looking through this info can help you:

CONTAINS ADVENTURE BOB's TUBE FOOD RECIPE

LUCY's REAL FOOD. How to make real food for tube feeding instead of using canned

BEST WEIGHT GAINING DRINKS
These are good tips and recipes if you can only manage liquids. 

All around smoothie with nutrition analysis.  If you put it through a peg tube it must be emulsified and put through a strainer.  You don't want to clog the tube.  

Here is a good all around smoothie meal.  I did the nutritional analysis for you.  The first number is the amount in the smoothie, the second number, in the parentheses is what you would need for a 1600 calories per day.  I use a HealthMaster.   That or a vitamix is best.   I often have this for breakfast.   Especially good when you are on the go.  

1 medium apple
1 medium carrot 
1 banana
3 leaves of romaine 
1 tbs almond butter
1 cup milk
1 tbs flax seed oil
1 tbs protein powder

Total Calories (kcals) 597 -  (1658)
Protein (gm) 17 - (46)
Carbohydrate (gm) 76 - (130)
Total Fiber (gm) 10 - (25)
Total Fat (gm) 29 - (13.3 - 23.2)
Saturated Fat (gm) 5.4 (< 6.6)
Monounsaturated Fat (gm) 10 **
Polyunsaturated Fat (gm) 12 **
Linoleic (omega 6) (gm) 4.1 12
Alpha Linolenic (omega 3) (gm) 7.5 (1.1)
Cholesterol (mg) 19 (< 300)
Vitamin A (mcg RAE) 735 - (700)
Vitamin C (mg) 32.7 - (75)
Vitamin E (mg a-TE) 9.5 - (15)
Thiamin (mg) 0.4 - (1.1)
Riboflavin (mg) 0.8 - (1.1)
Niacin (mg) 4.1 - (14)
Folate (mcg, DFE) 148.4 - (400)
Vitamin B6 (mg) 0.9 - (1.3)
Vitamin B12 (mcg) 1.3 - (2.4)
Calcium (mg) 486.2 - (1000)
Phosphorus (mg) 485 - (700)
Magnesium (mg) 152 - (320)
Iron (mg) 3.2 - (18)
Zinc (mg) 3.1 -  (8)
Selenium (mcg) 11.7 - (55)
Potassium (mg) 1540 - (4700)
Sodium (mg) 288  - ( 1500 - 2300)
** Nutrient has no established recommendation.

You need a powerful blended that will liquify the food. Like these:

VITAMIX  Emulsifier Blender. It is my understanding they will give a discount for cancer patients.

HEALTHMASTER EMULSIFIER

Hondo's picture
Hondo
Posts: 5791
Joined: Apr 2009

I know don’t know much about making food, I only eat it when I feel good enough to eat it, but Sweet is the right Woman for the job. So for now all I can do it to Welcome you to CSN.

Wishing you and your Mom the best
Hondo

Greend's picture
Greend
Posts: 679
Joined: Feb 2010

I guess being from Alabama I am just too simple. About 2-3 months ago I decided, with my wife's help, to dump the Ensure diet and start using real food, The Ensure only diet was leaving me too tired all of the time and no energy. We started out with her measuring calories, amounts etc and then blending them all together. This works fine but is labor intensive. I then started just taking whatever food she cooked (I do not use food with gristle ot fat because it tends to jam my tube) adding whatever I thought might boost the balance (bananas, tofu, avacado, sunflower seeds, yogurt etc) and processing it through my 1200W butt kicking Ninja blender with a LOT of liquids. I have found that if there are objects in the mix that stop up my syringe then they too will plug my tube so when I'm drawing up my food into the syringe and something plugs it up I just pick off the offender and continue.

The tube port I have has a wide opening to accomodate the syringe and then connects to the flexible tube above the flushing port. What this means is that if the tube gets plugged, then it will most likely be plugged at this junction point and then I can flush it to clear the blockage and the jammed food will exit back through the tube entry point. Bottom line on this pitiful explanaton is that I don't have problems with the tube getting blocked.

I have processed Wendy's 1/2 pounder, KFC chicken bowl, oriental food, and a couple of meat loaf TV dinners. The key is adding enough liquids when you blend it to get a good puree. For liquids I have used V8 juice, gator ade, grape/apple/cherry juice, Silk, regular milk and even a couple of Sprites.

For breakfast I have eggs, sausage, oatmeal (fiber), toast or bisquit, and lots of orange juice.

Lunch is whatever everyone else has with a lot of liquid.

For dinner I have found that a mostly fruit meal sits better on the stomach and I sleep better.

The negative to this is that I have to urinate a lot more because of the fluid intake.

This is working GREAT for me and while I don't taste the food the psylogical boost from eating "normal" food is good. Not a lot of weight gain but a lot more energy.

Tonight I'm going to try a Snickers bar with a Budweiser for the liquid additive.

Hondo's picture
Hondo
Posts: 5791
Joined: Apr 2009

Glad to hear the PEG is working so well for you, if you don’t mind can you PM me and let me know what type of PEG tube you have. From what I read and see there are many types of PEG tubes, I am looking at one called a Button but not to sure how it will work for me.

Take care and continue to do well
Hondo

Canadian_Poppy
Posts: 1
Joined: Apr 2012

my husband has recently been diagnosed with esophageal cancer. he became dehydrated and malnoursihed and had a feeding tube placed a week ago. we are hoping to leave the hospital today. we have always eaten well and are very interested in making our own food rather than using only nestle formula. we have been working with a naturopath but she has no experience with feeding tubes. he will need all his strength to deal with the proposed treatment and we find questionable value in the 'sterile' cans, as promoted by the dieticion. we have always been interested in 'live' food. if you have any recipes or tips to share we would be very grateful for the help. good luck in your journey

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Welcome....

There are several links and information for your questions on the SuperThread. It's a post updated with information from many on here periodically by Sweetblood22 (Dawn & Nizzy).

Look under the Subject above about half way down the thread and you'll find many links;

SuperThread

Thoughts & Prayers,
John

edwardnorton
Posts: 1
Joined: Apr 2012

How about if someone asks for it???

rickmonro127
Posts: 1
Joined: Jul 2012

My name is rick and my father is on a feeding tube and needs to gain seven pounds before his treatment can proceed. The feedind suplament isn't working for him. I was hopeing that you would e-mail you recipe i would really be thankful. Thanks for your time and best of luck with your future treatment. rickmonro127@gmail.com

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

See Skiffin 16's post (up two from your post) and click on Super Thread. Hopefully, you will find what you need.

LucyVance's picture
LucyVance
Posts: 22
Joined: Feb 2008

Hi There - check out lucysrealfood.com for information and recipes - all free - and please share your discoveries with others there too! Thanks. 

Lucy!

LucyVance's picture
LucyVance
Posts: 22
Joined: Feb 2008

Yes - we've updated our website recently and are trying to add in more information and links. So anyone interested in making real food for the tube  - please get in touch with us at Lucy's RealFood for the Tube. I'm here to help and it's easiest to help each other when we're all helping. I'm interested in sharing your discoveries, recipes, suggesitons, points of view either anonymously or with attirbution.  I'd love it if you'd like to write a guest blog post too!  Let's just keep building great resources for each other and to help those who are new to tube feeding.  Anything we can do to make it easier - since we all know how tough it can be. 

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