PEG Tube
Comments
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Good call KentKent Cass said:Bob & HQ
Think Bob had a different kinda tube than mine, as mine was not a drip one. Know Sweet talks of that kind, as do others, and I know there are several different types. Think mine was designed around the Civil War time of the 1800s! I literally had to slowly pour the contents of the cans into the top of my tube via the large syringe tube. Would suggest caution, HQ, about getting any ideas of altering your's, as you might not get the same type of PEG as Bob, and could lead to serious complications with seals being maintained.
Bob mentioned other options than Jevity, and I would not discourage you from exploring such, including Bob's recipe. Many others have also spoken of other liquids, and my smarts along these lines is not the sort of thing I'd put any money behind. I did not even know of this site when I went thru treatment, and took the Jevity as a given for my Nutrition, as that was the only thing Option Care had to offer. We all agree that Nutrition is critical during treatment, so whatever you choose- make sure you are getting as much Nutrition as you can tolerate= it is the ammo your body needs to fight this battle. With the Jevity, and my reduced intake during the worst of times, I lost some 18% of my body weight for awhile. Have gained it all back, and then some, but it took awhile.
kcass
I forget that all tubes are not the same. I like messing with all my gear and customizing everything, thus the tube trimming. Probably best to start with racing stripes before cutting anything.
Bob0 -
Tube food recipeHq18 said:Everyone, thank you so much
Everyone, thank you so much for the advice and support I really appreciate it! I am a little nervous now because I am looking at this thing and I have not changed by gauze as of yet and it has been almost 24hrs since placed. I am also looking at it trying to figure out how I am going to get this gauze off because it looks like there is no end. I am going to try here in just a little bit because going to attempt a shower. I woke up in severe pain this morning but does not help that took last pain pill at like 7pm and now 540am, then hiccupped and that did not help at all! Bob-I would be interested in your receipes as I get ready for this venture. Keep the advice coming because I do appreciate it and it helps because I am very scared as I take this venture on without my wife. I am finding it really difficult at 43yrs old, to reach out to other friends/family for help/support because my wife has been my support for over 17yrs and I did rely on her alot, too much I guess since she left me. Some professionals say that she may be just a stress runner so hoping to work things out with her soon! But for now here I am fighting this knowing I need to reach out to these people, there is alot of them including my wonderful children, but it is difficult for me and new waters for me because I have not been that kind of person. I have 6 wonderful children and all live locally but one that lives out of state and he is going crazy not being here to help. It's difficult reaching out to my children as I am always used to being the strong one for them and the rest of my family. Well enough rambling, so again thank you everyone for the info and anything else that can help is greatly appreciated. Off to try to change my gauze and attempt a shower!
HQ,
I made this with a Vitamix. If you don't have one, you can order one from Vitamix and they will give you a significant discount with a note from your doc stating that you will be using a feeding tube.
Almond Milk: I soaked organic raw almonds overnight and then peeled the hulls off them. This makes the milk smoother to go down the tube easier. Add 1 cup of the rinsed almonds to 3 cups of purified water in the Vitamix. Blend for about 2 minutes on high. This makes 32 ounces of milk which is the base for the tube food.
To the 32 ounces of milk add: 2 scoops NOW Tru-Food Vegan, 2 scoops Manitoba Harvest Hemp pro 70 hemp powder, 2 tablespoon organic olive oil, 1/2 cup organic prune juice. Blend until smooth.
This makes a 52 ounce beverage that contains 1800 calories. If you make and use 1 1/2 of these daily you will get 2700 calories. I would drip them over 3 daily sessions but you could certainly do more sessions and less volume of fluid.
The NOW Tru-Food Vegan and the hemp powder can be purchased online from AllStar Health for the best deals. I would often add an apple and some kale or other greens to this blend for the extra veggies but the NOW mix provides 100%+ of everything you need.
Making the almond milk in advance and refrigerating it made things easier.
One other tip. Camelbak makes a long cleaning brush for their hydration backpacks that worked perfectly in my tube to clean it out from time to time. As the visiting nurse told me: Take care not to go too deep.
Happy Tubing.
Bob0 -
Tubesadventurebob said:Good call Kent
I forget that all tubes are not the same. I like messing with all my gear and customizing everything, thus the tube trimming. Probably best to start with racing stripes before cutting anything.
Bob
I'm not sure how to explain this, I am having brain fog at the moment, but it isn't the tube that was any different when I drip fed or used the syringe. The hose was the same on the first two pegs I had, then with the mic-key button, the hose was just detachable.
It was the delivery method that changed. I could do any of them with my peg tubes. The gravity bags just look like an IV bag that has a christmas tree end that connects into the end of your hose of the peg. With the pump is the same thing, the bag is just a little different because there is a little tubing section that goes into the machine to pump the formula through.0 -
Fluorde TraysHq18 said:My radient doctor recommened
My radient doctor recommened the Flouride Trays but my dentist wanted me to try this special flouride tooth paste 1st. So I guess I am stuck with the tooth paste for now. Time will tell I guess. From what the doctor told me it sounds like I am going to want the trays because it sounds like during radiation is not going to be pretty and difficult to even brush because of how sore its going to be.
Hq
My dentist recommended MI paste it seems like it would be a lot easier than trays. I got mine on Amazon,com. ends up beng about $10.00 a tube. I started using mine the first day of rads. Biotene tooth paste helped with the dry mouth for me, but not as much as others. I am still using the MI paste to date and brush with Crest. My dry mouth is the worse at night and that is when I use the paste.
Hope & Prayers on your treatment
Dave0 -
My peg tube looks just likesweetblood22 said:Tubes
I'm not sure how to explain this, I am having brain fog at the moment, but it isn't the tube that was any different when I drip fed or used the syringe. The hose was the same on the first two pegs I had, then with the mic-key button, the hose was just detachable.
It was the delivery method that changed. I could do any of them with my peg tubes. The gravity bags just look like an IV bag that has a christmas tree end that connects into the end of your hose of the peg. With the pump is the same thing, the bag is just a little different because there is a little tubing section that goes into the machine to pump the formula through.
My peg tube looks just like an IV tube right about the same size and approx 18" long. It is a nusance and I am trying to get used to it. Again I just had it put in yesterday. Still very sore from the surgery. I wish they would of given some care instructions with it so a person would know what is ok and what is not. I seen early that someone posted that their oozing never stopped, is that case with everyone? Thanks again for all of your input, I do greatly appreciate it. Good night for now!0 -
OozingHq18 said:My peg tube looks just like
My peg tube looks just like an IV tube right about the same size and approx 18" long. It is a nusance and I am trying to get used to it. Again I just had it put in yesterday. Still very sore from the surgery. I wish they would of given some care instructions with it so a person would know what is ok and what is not. I seen early that someone posted that their oozing never stopped, is that case with everyone? Thanks again for all of your input, I do greatly appreciate it. Good night for now!
Yes, mine always oozed and bled and that is why I always kept a drain sponge there and I changed it pretty much every time I fed myself.
I was real sore for a few days. I ended up losening my bumper a bit because that thing was way too tight and killing me. I couldn't even stand up straight. There are some directions of how to take care of your tube in one if the links in the Peg Tube section of the superthread. You just don't want it to look angry or infected.0 -
oozingHq18 said:My peg tube looks just like
My peg tube looks just like an IV tube right about the same size and approx 18" long. It is a nusance and I am trying to get used to it. Again I just had it put in yesterday. Still very sore from the surgery. I wish they would of given some care instructions with it so a person would know what is ok and what is not. I seen early that someone posted that their oozing never stopped, is that case with everyone? Thanks again for all of your input, I do greatly appreciate it. Good night for now!
My oozing didn't stop until the tube was removed. That is the reason for the cotton between skin and outside bolster.0 -
Angry tubesweetblood22 said:Oozing
Yes, mine always oozed and bled and that is why I always kept a drain sponge there and I changed it pretty much every time I fed myself.
I was real sore for a few days. I ended up losening my bumper a bit because that thing was way too tight and killing me. I couldn't even stand up straight. There are some directions of how to take care of your tube in one if the links in the Peg Tube section of the superthread. You just don't want it to look angry or infected.
Nothing scarier than an angry tube. Like a python ready to strike.0 -
Adventurebob.adventurebob said:Angry tube
Nothing scarier than an angry tube. Like a python ready to strike.
Funny.
Hopefully he knows what I mean. Lol. 0 -
PEG site careHq18 said:My peg tube looks just like
My peg tube looks just like an IV tube right about the same size and approx 18" long. It is a nusance and I am trying to get used to it. Again I just had it put in yesterday. Still very sore from the surgery. I wish they would of given some care instructions with it so a person would know what is ok and what is not. I seen early that someone posted that their oozing never stopped, is that case with everyone? Thanks again for all of your input, I do greatly appreciate it. Good night for now!
For the PEG site,there are 2 x 2 gauze squares with the slit in them. Walgreens, who supplied the tube feeding formula, delivered them to us. Buzz needed the gauze placed between his skin and the bolster because his skin became irritated with just the plastic against it. We were told we did not need a dressing but found we did. For redness around the tube, someone on the forum recommended Calmoseptine ointment which you can buy at Walgreens. It is made for the skin around gastric tubes. It worked really well. Buzz's tube leaked a whole lot at first and had to be changed but a little bit of oozing of clear fluid is normal. We were told to wash the skin around the tube every day with soap and water. I am a former RN and we used peroxide in the past but it is not recommended now. Hope I have been helpful and continue to be as you embark on this journey. Karen0 -
Beware the TUBEbuzz99 said:PEG site care
For the PEG site,there are 2 x 2 gauze squares with the slit in them. Walgreens, who supplied the tube feeding formula, delivered them to us. Buzz needed the gauze placed between his skin and the bolster because his skin became irritated with just the plastic against it. We were told we did not need a dressing but found we did. For redness around the tube, someone on the forum recommended Calmoseptine ointment which you can buy at Walgreens. It is made for the skin around gastric tubes. It worked really well. Buzz's tube leaked a whole lot at first and had to be changed but a little bit of oozing of clear fluid is normal. We were told to wash the skin around the tube every day with soap and water. I am a former RN and we used peroxide in the past but it is not recommended now. Hope I have been helpful and continue to be as you embark on this journey. Karen
I love all the comments. My tube is like all others, taped to my (shaven) chest above the equator so as not to fill up with liquid. The tube becomes a life of it's own at times, but it sure was a god send for me. I got nutrition during the painful mouth days after rads. Keep it clean and flush it often with water and at the end of the day with Coke or Pepsi.....That stuff cleans out anything!!
Good luck
Steve0 -
The pegtube will be a blessing
Hi Hq, My wife Connie and I were afraid to have the peg tube installed because of the thought of it but without it she would have suffered. We did not have it from the beginning so she started using it from day one. Actually it's not so bad at all and we flush it before and after she puts her liquid diet or pain meds through it. Sometimes the contents of her stomach back up into it but a simple flush pushes it back into the stomach and cleans it. I admire anyone who can survive without one but also wonder if it is really worth toughing it out without one. You will be glad you got it soon and don't let a little back up bother you. Goodluck with your treatments and use it when you are ready. I remember the day Connie got it, the nurse in the recovery room told her that in a couple of weeks her hair would start growing back (from chemo treatments) and sure enough it did. Although Connie's hair is only about 1/2 inch she feels so good to have a little hair on top. Get Well Soon, from Homer & Connie0 -
Peg tube feeding
Hi Hq
I have had mine for 5+ mo I am still on the ensure which I hate and have not had any getup.
Tuesday my wife took her juicer and made carrot juice and I started taking 2 cups along with the ensure It made me feel a lot stronger. Belive It or not I cut 3 yards of grass with my riding mower today.And still have my tube In. It may just be in my head but I fell better get carrots out of the produce section (fresh) Good luck.
Robert0 -
robertrobert77dr said:Peg tube feeding
Hi Hq
I have had mine for 5+ mo I am still on the ensure which I hate and have not had any getup.
Tuesday my wife took her juicer and made carrot juice and I started taking 2 cups along with the ensure It made me feel a lot stronger. Belive It or not I cut 3 yards of grass with my riding mower today.And still have my tube In. It may just be in my head but I fell better get carrots out of the produce section (fresh) Good luck.
Robert
Check Sweet's Superthread- there's a link to good things to put in the PEG. Sorry to hear this non-eating has stuck around for so long, but I do understand. I was able to start on the buttered and syrup pancakes after a couple weeks. Have thought about what I mght've tried if I was a far down the road as you, and still using the PEG. Ever tried anything like Cranberry Juice? Or even V8? Those were the two that came to my (lazy) mind.
And welcome, Robert
kcass0 -
TapeKent Cass said:Jevity, etc
Jevity is the brand name of the stuff typically recommended for PEG feedings, as it is custom-made for C&R Nutritional value. They should have set you up with a Home Healthcare place, like Option Care, to supply you with the Jevity. It's liquid that comes in kinda small cans. I used to get it in 24-can cases for $45, back in early-09.
As for the gauze, especially when using the PEG, and early-on, there will be seepage around the flap area of the tube, and if you don't change may run the risk of infection, and the stuff will dry-up to a crust that's not cool. As you are starting, I would advise on your next trip to Walgreen's, to get
1. Bottle of Peroxide
2. Couple boxes of 3x3 gauze pads
3. Bag of cotton balls
4. Couple rolls of 2" Paper Tape
5. Plastic bottle of Coca-Cola, in case the PEG tube gets clogged- that'll clear the clog
Did you get any huge syringes, yet? That's what you use in the feedings. Take the plunger out, and use the big syringe tube- that's the funnel you will use to pour the Jevity into. The Healthcare place provided me with mine. Rinse after each use, and a good idea to use a new one every couple weeks/week.
The person who told you it's okay to just let the tube hang there, or flop around, doesn't know much about living with a PEG, and should not have advised you. Trust me, Sweet, and everybody else, here, on this. Keep it taped to the upper chest, except when feeding and changing the gauze around the base.
Also, depending on your model of PEG, when you pop the top off for feedings- do so carefully, as the plastic can tear, as mind eventually did. So, handle with care.
kcass
What Is the best tape to use I keep mine taped down but the tape keeps coming off I want some that will hold it in place I have been useing 1 in wide by 3M do I need 2 in ??
Robert0 -
Taperobert77dr said:Peg tube feeding
Hi Hq
I have had mine for 5+ mo I am still on the ensure which I hate and have not had any getup.
Tuesday my wife took her juicer and made carrot juice and I started taking 2 cups along with the ensure It made me feel a lot stronger. Belive It or not I cut 3 yards of grass with my riding mower today.And still have my tube In. It may just be in my head but I fell better get carrots out of the produce section (fresh) Good luck.
Robert
To answer your Tape question, I used 2" Paper tape, Robert, that can be bought at most any Pharmacy. It might come loose a little, but should hold in place good enough.
kcass0 -
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!
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Welcome CV...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!
This thread is actually about two years old...
You might want to start a new one, introduce yourself...
Tons of awesome people on here...
Best,
John
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Search Led HereSkiffin16 said:Welcome CV...
This thread is actually about two years old...
You might want to start a new one, introduce yourself...
Tons of awesome people on here...
Best,
John
Thanks Skiffin. Nice to meet you.
Yeah, I came here because this thread came up listed first in my search. I had a radical neck dissection (both sides) but I lived through it and now I have managed to survive just fine on liquids only for over 2 years. (I can work full time, exercise 20 min a day, and maintain my body weight within a two pound range:)
I had to learn it all by trial and error. The first time I got covered in my own stomach contents I figured "there has to be a better way". I have managed to find a few better ways to do things and just wanted to share them. It's just really hard to find anyone in the same situation as me that I might could help out.
I didn't want to start a new thread since the search engine led to this one. I just gave this one a bump. (Which just did again: )
I am sure open to ideas though. If you know a better place to post, let me know and I will be glad to do it!
Thank you!
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