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Looking for Non Conventional Peg Tube Formula

Eugene389
Posts: 9
Joined: Jul 2006

Hi everyone,

I don't swallow because of a constricted esophagus as a result of radiation for squamous cell carcinoma of the head and neck with an unknown primary (means I had a lump on my neck, but the source of the cancer was never found). Consequently I was treated with the largest amount of radiation allowed.

I was 49 at time of cancer and am now 58 (male). I've had a peg tube now for 9 years. I do fairly well on it. I take 9 cans of Jevity 1 Cal along with a fibre formula I discovered at a health store. I do, however, take prevacid to prevent heartburn or acid reflux. I never took an antacid before in my life before I started on the commercial adult nutrition cans.

My problem is this. Before I had my head and neck squamous cell carcinoma I weighed 172 pounds. Now I weigh 149 pounds. My strength has diminsished and I keep getting forearm pulls, biceps pulls and tendonitis in the upper part of both of my arms as well as rubbery legs.

Nutritionists seem to just want to put me on another formula (although I haven't talked to one in about a year and a half).

What I'm looking for is a formula by which I can put real food down my peg tube. Does anyone know of such a formula instead of these soy protein cans with all kinds of vitamins and minerals. I would consider a commercial product that uses mostly real food or a home made concoction. However the commercial formula would probably be covered by insurance and the home made wouldn't. I'm on limited income.

Also I can offer advice to anyone interested on dry mouth, mouth mucous, peg tube maintenance, stoma irritation, ear wax build-up.

Thanks

tobagogirl
Posts: 11
Joined: Apr 2002

I have had a PEG tube for the past 4 years following massive doses of radiation to head and neck for squamous cell carcinoma of the left sinus and left submandibullar gland (6 months apart). Unlike you I weighed just about 100 lbs before my first surgery and now I weigh close to 120lbs. I cook my meals just as though I was going to chow down, then put them through the blender and VOILA! I supplement with Ensure Plus. When I am "eating" the smell of my meals makes me feel like I am actually eating. Although I miss many of the meals that I used to enjoy, like sushi and many other ethnic cuisines. As a Caribbean woman, I love okra and find that when I make my "stoups" - stew and soup, with this veggie, it helps with the consistency to go down the tube. My tube is a size 24, which makes for easy ingestion of almost everything that I cook.
How often have you had to change your tube? What do you do to prolong the life of the tube? How do you control mouth mucous? Do you cough a lot when there is a build-up?
Please let me hear from you. Any other suggestions that I could make to help you return to real food, I'd be happy to make.
june
PS; I am also 58, and life is great. I changed careers from radio talk show host and PR director of a government agency to "farmer". Life is good!

Eugene389
Posts: 9
Joined: Jul 2006

Hi June,

Thanks for responding.

My tube is a 20 french, I believe.

Sounds that you make a stew out of everything that you ingest. Do you overcook the meat so it will shred up and enable it to be blenderized well. I too do a little cooking for my mother and brother and niece once in a while. I enjoy the smell too of the food cooking.

Were you every on the conventional formulas like ensure and if you were, how did you tolerate them?

I'd be interested to know how you came up with your recipes and possibly give me one to fool around with.

I'm on my 4th feeding tube. The last one lasted me 3 years and was still going strong, but it had a lot of accumulated stuff on the walls, so I decided to get a new one.

While searching around about a new formula I came across a woman who has what she termed as a "button" inserted in the stoma to her stomach which, I would imagine can't stick out more than a 1/4" to 1/2" out of her stomach. She then attaches a removable tube to it when she wants to feed. Removes it after the feeding and cleans the tube.

To prolong the life of my tube I flush it twice with about 4 oz of water after each feeding. While I'm flusing it I take my index finger and thumb of my right hand and roll it back and forth over the length of the tube, compressing both sides against the other side, which I believe helps any food that clings to the inner walls of the tube to break loose and get flushed down the tube. I also have a clamp on my tube which I keep about at the 6 " mark (my tube is about 12". It's a plastic clamp. After I feed and flush I put the clamp on at the 6 " mark and make sure any fluid is below the clamp. This clamp is like a clamp you would see on an IV line in the hospital and you just open and close it by adjusting the teeth (it's very simple). It also eliminates the terrible smell that can sometimes be smelled at the top of one's feeding tube.

About once a week I clean the top of my tube with a Q-tip-gotta be very careful that the cotton doesn't go down the tube. Sometimes it comes off the Q-tip when it gets wet.

To control mouth mucous isn't easy. What I do is carry a thermos of luke warm water around with me when I'm not at home. I gargle with it and it loosens up the thick mucous. I spit it out of course. Might do that two or three times until it feels comfortable. Then I take biotene mouthwash, swish it around my mouth covering every spot and especially the teeth and spit that out. I make sure I breathe through my mouth. The biotene keeps my mouth moist and protects from germs and I believe helps prevent cavities. I've had 4 cavities in 9 years. Of course the mucous will build up again, I just repeat the procedure.

As far as coughing goes, it comes and goes. I seem to have a problem more in the summer because I have seasonal allergies and the mucous keeps coming. I do a lot of spitting and plenty of times it just seems to appear from no where and be in the middle of my throat and of course you have to cough and spit to get it out of there.

I hope this helps you.

Eugene389

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

I'm surprised your doctor hasn't referred you to a gastroenterologist to have your constricted esophagus dilated. I had to have 3 dilations within 3 mos post radiation.

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

My fiance had cancer in the base of his tongue and we use homemade food in his feeding tube. His doctor's were amazed that he was able to actually put on weight on a regular basis. On my website I've posted free recipes and basic instructions and equipment for people who are also interested in making homemade food. Check out lucysrealfood.com for this information. Would love to hear your feedback - I think it's very likely that if you start using real food you'll eventually have success in gaining weight again. Wishing you all the best.

jdeh@comcast.net
Posts: 2
Joined: Dec 2009

Eugene. how do I find your other info on subjects like dry mouth etc. I am new to this website.

My symptoms were similar to yours although my esophagus did not become restricted. I was treated with radiation and erbitux in aug and sep of 2009 and am still on a PEG. I am able to swallow ok but my sense of smell and taste are really messed up so bad that anything I try to eat thru the mouth is digusting taste and smellwise. Hopefully, my sense of taste and smell will eventually allow me to resume feeding by mouth. You can imagine a Thanksgiving dinner with all the wonderful things to eat that are disgusting to smell or taste because of the damgge due to radiation.

Also have a bad case of dry mouth and would appreciate any advice on that. In General I would like to be able to navigate this site to find topics such as this of to locater specific users info such as yourself.

Thanks, Jeff

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

Jeff,

If you go to the top right corner of this window, you will see "Search CSN content". Click that button and then type in the question or key words you are seeking. All the listings that pertain will pop up in a list. I have found that very helpful in my various searches.

There is a plethera (sp?) of info on this list about ways to cope with dry mouth.

Quickly, here are some comments that I have copied and saved for future reference. I didn't note who gave me this info, so I guess I am plagerizing, but hopefully it will be helpful and folks will forgive me if they see their words below:

• Stoppers4 Dry Mouth Spray and I get it on line at http://www.drugstore.com/ (Karen here--I just ordered this for Kevin, and he really likes it better than biotene spray!!!)

• Salagen & Evoxac

• Oasis, Oral balance, OralMoist, Salivart

• Chewing gum helps me with saliva though I have to get fresh gum often because it turns to powder in a short time. (Karen here--biotene gum has been a savior for Kevin!)

• homeopathics to help create saliva
My husband is a survivor of H&N stage IV. we are ready to celebrate 7 years in remission. He has dry mouth and excessive post nasal drip. I found several homeopathics that have helped with making saliva. You can order them from www. affordable Natural Supplements.com
for increasing saliva we use Nux Moschata 200c
for post nasal drip we use Hydrastis Canadensis 30c

• My husband could not speak after Radiation treatment so I took him to an accupuncturist from Korea who got his voice back after 40 min of treatment. It was a much more aggressive treatment than Chinese accupuncture. He also treated him a 2nd and 3rd time to help stimulate saliva ... this worked...it was amazing. I could actually really kiss my husband again.

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