PEG Tube

Is anyone else on here a life long PEG user? My husband had his entire tongue, tonsils, lymph nodes, and a small section of his jaw removed. Will be on PEG feeds forever. Just starthing chemo and rad. We just taught him texting. Next we are going to teach him the computer so he can get on here and hopefully talk with others. We have lots of questions. 

Our first one has already been answered, about the tube having colored fluids in bottom of it. 

Can you gain weight on tube feeds alone? Boost and two cal? Later down the road, can you put other things in tube? Smoothies? A beer? Regular food that you put through a blender? 

That's all for now, but we have more. 

Papaw13 said:

PEG ?s

Is anyone else on here a life long PEG user? My husband had his entire tongue, tonsils, lymph nodes, and a small section of his jaw removed. Will be on PEG feeds forever. Just starthing chemo and rad. We just taught him texting. Next we are going to teach him the computer so he can get on here and hopefully talk with others. We have lots of questions. 

Our first one has already been answered, about the tube having colored fluids in bottom of it. 

Can you gain weight on tube feeds alone? Boost and two cal? Later down the road, can you put other things in tube? Smoothies? A beer? Regular food that you put through a blender? 

That's all for now, but we have more. 

 Welcome to CSN

Yes I am also on the PEG for life, had it now for the past 2 years. You can gain weight but not by drinking Boost alone. I eat just about anything that my wife can cook and sometime we eat out just like normal people, did I say normal. I carry a Nutribullet blender in my bag and when the food comes I put it in the blender add water and there it is PEG tube food. I find the only way for me to gain weight I must eat 5 times a day; it is a little hard at times but I went from 140lbs to 162lbs in 4 months.

Take care and God bless and keep you both

Hondo

Hondo said:

Hi Papaw

 Welcome to CSN

Yes I am also on the PEG for life, had it now for the past 2 years. You can gain weight but not by drinking Boost alone. I eat just about anything that my wife can cook and sometime we eat out just like normal people, did I say normal. I carry a Nutribullet blender in my bag and when the food comes I put it in the blender add water and there it is PEG tube food. I find the only way for me to gain weight I must eat 5 times a day; it is a little hard at times but I went from 140lbs to 162lbs in 4 months.

Take care and God bless and keep you both

Hondo

Thank you Hondo. So far Docs only say to use Two Cal and Boost. My husband has a very high metabolism and always ate whatever he wanted. He began at 150 lbs. and is now 112 lbs. Any info you can share will be appreciated. It's great to hear that there can be " normal life" on a lifelong PEG tube. 

Pawpa,

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Papaw13 said:

Thank you

Thank you Hondo. So far Docs only say to use Two Cal and Boost. My husband has a very high metabolism and always ate whatever he wanted. He began at 150 lbs. and is now 112 lbs. Any info you can share will be appreciated. It's great to hear that there can be " normal life" on a lifelong PEG tube. 

Try lucysrealfood.com‎

It's a website that will show you how to make real food, blended formula for the feeding tube. Basic instructions, recipes for a blended diet and lots of tube feeding information

CeeVee said:

My Experience

I have been on a PEG tube for over two years.  Mine has a "stopcock" that allows it to be turned on and off.  I cover the end with a flap top sandwich baggie and use a bread tie to seal it off.  This way if it comes open it is contained.  If you tube does not have a stop cock, cover the end with "Finger Cots" (that can be purchased at any pharmacy) and use a bread tie or tape to seal.  (Finger cots are latex and designed to fit over fingers but they are perfect for PEGs.)  Doing either of these things will help prevent "accidents" where stuff comes out of your tube.

Instead of fastening the tube to my skin with tape, I do much like the lady above and use paper tape to tape it to a sleveless t-shirt.  (Tape to strap part of the tank top.)  This keeps it above the backwash level and keeps it out of the way.

Maintaining weight is easy with my tube.  I use Jevity, Ensure, Liquid Yogurt (dilluted with milk), and PASTURIZED LIQUID EGG WHITES.  The eggs whites are the true secret because they are pure protein and can be poured directly into the tube.

If there is a lot of leakage around the site where the tube goes in, then the seal is not good.  The tube either needs to be pumped up more or replaced.  I just have a tiny bit of leakage and I use alcohol preps a few times a day to keep the entry site clean between showers.  When the leakage becomes severe (enough to make a spot on my t-shirt) I schedule a replacement.  My specalist just switches them out in the office so there is no surgery involved.

I still have hopes to get on real food again someday, but until then, it sure is easy to pack my lunch.

Best of luck to all of you!

Hey CeeVee, those are some great ideas, especially the pasturized egg whites. And the finger probe, good one!

Thanks for posting.

Take care.   Jude

Hi there ,

I just recently , in the last couple of days had my tube removed after 7 months. Im not sure what country you are in ? But in Australia here my tube had a ring , you are not supposed to touch this , its supposed to be tight for the 1st week or so, when the hole etc settles, nurses release it to a more comfortable looser spot.

It seemed to weep now and then, so I used gauze, taped to my skin initially. But noticed red marks after a while from the tape. So what I did was use 2 smaller square gauzes. I would fold one in half and place it under the bottom part of ring, 2nd would be folded in half and placed on top half of ring , under it. I would then only tape the bottom half of gauze to top half of gauze without touching my skin at all. Worked out excellent and stopped getting red rashes from the tape, was no longer on my skin. Dont forget to trun the tube too , only once a day. Drs recommended once in the shower every morning. 

Hope it works out for you , you will get soooo used to it, will be like 2nd nature. I am so glad now mine is gone, but did feel a bit lost when they removed it.

Robyn