CSN Login
Members Online: 8

PEG Tube

Hq18
Posts: 24
Joined: Mar 2011

So I had surgery today to have PEG tube put in and had a question for anyone that had this done. I am having fluid come back into the tube. I have not used it yet because can eat and dring at this time but it has filled up the tube approx 12". I was just wondering has anyone else experienced this and if so is this normal? Also another question on the ring to keep tight, how tight is tight and how hard to pull to get it tight? I am afraid to pull it too much and to pull it out. I called doctor but was confused by the answer so any help is appreciated.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

welcome to the "I can talk while I eat" club. liquid in the tube is normal - I had it - be prepared - sometimes the liquid is the color of what you eat. I dunno about your ring - sounds like I had a different type of feeding tube. Do well.

Hq18
Posts: 24
Joined: Mar 2011

Thanks Pam! That is exactly what happened. They told me soft foods for today so came home and had some oatmeal. Should I pop it open and drain the liquid from it?

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I was told to not "dump" the liquid in my tube - nurse said it contained stomach acids that I needed to break down what I ate. It also contains nutrients from whatever you ate earlier. I will say - for a while, I spent a lot of time looking at my tube, fascinated/disgusted by what I saw. When you flush your tube with water, the "gunk" goes down for a while.

I do know that sometimes, if you're feeling gassy, you can (over a sink, if you need to) hold the tube up, and "uncork" it - gas can be released that way.

Like Kent,I too wore my tube "high". being the female of the species, I hooked a clip on ID badge holder to my tube, and clipped it to my brassiere, so I could elimated the tape that sometimes irritated me. I wore an undershirt at all times, to help protect my tube. Some folks get a stretchy material (like a big tube top) that they step into, and wear around their waist with a hole cut in it for the tube. Trial and error, I'm afraid.

I also used the ID badge clip in the shower - I'd use either a length of dental floss to make a necklace or a cheap Hawaiian lei type thing, and clip my tube to that, so I didn't have to worry about it while showering - you'll find what works for you.

Also like Kent, I kept guaze pads on the PEG site for some time at first. You can buy hydrogen peroxide in spray bottles - that was wonderful for cleaning my PEG site.

Hq18
Posts: 24
Joined: Mar 2011

Pam, thanks again for the input! I greatly appreciate it! I really do appreciate any and all info I can get as I begin this journey/challenge!

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

I recall the red jello. Scared me, just for a minute...

Deb

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I know, right? For me, it was oatmeal with berries and juice.

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

The PEG tubing outside of the body gets taped to the upper-chest, as gravity comes into play, along with the position of the stomach. I used paper tape just about as far up on the tubing as possible, and would have to shave my chest in that area. AND YES, it is typical for some fluid to be seen for a couple inches at the bottom of the tubing- but it is not my experience that it should be completely filled with the tubing near-vertical to the up. When I would pop the top off the PEG, and coughed- yes, fluid would come all the way to the top, or the tube would be lowered near the level where it went into my body. There has to be empty space in the tubing to pour the feeding liquid into, slowly, or it will just overfill and make a mess, and not serve it's function.

Of note, I used 3x3 gauze pads, cut by myself with a diamond cutting to go around the tubing in the space between the base flap and skin, and in treatment changed the gauze daily, and always washed the area with Peroxide. And, I had no problems. Had the PEG for 15+-months, and Sweet had her's longer than that. Would advise you to make contact with the Health group who will provide your Jevity, ASAP. Option Care was who I used in the Quad Cities, and they showed me the ropes- did a great job. The 2.0 Jevity only required 4 feedings/day for me, but not everybody can degestively tolerate that concentration. A little cheaper, too!

The best of luck, Hq. Please do not hesitate to ask any questions, and please keep us informed. If you have a problem, Private Message me via the CSN email, and I will gladly give you my phone # and provide all the help I can.

kcass

Hq18
Posts: 24
Joined: Mar 2011

Thank you Kent! I started thinkging that was my problem because mine is just hanging there and hangs down below where it is placed. I asked at hospital about taping and they said no it's not needed. But I am thinking yes it is because it is also a nussance to deal with this long tube and when I go back to work don't need it moving all around. Thanks for the advice too taking care of the tube. On the gauze, did you do that the whole time you had the tube to avoid issues or only for a certain time? Also, I am not familiar with Jevity, what is that? Some form of liquid to get nutrients? Thanks again for the invite to send email and get # I just might do that. I am kind of going thru this alone right now because my wife left me too 3 weeks ago. I was with her for over 17yrs. We are still talking and trying to work things out and she said she will help support me thru this but in a different role. I do have other family members and friends for support too but difficult to reach out to them when my wife has been my main support person for so long. Thanks again, HQ18.

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

I did all of my rad and Chemo with out a PEG tube, but would like to welcome you here to CSN

All the best my friend
Hondo

Hq18
Posts: 24
Joined: Mar 2011

Wow! That is fantastic Hondo! I am hoping I don't have to use it but time will tell. I am really wondering because they were not able to find my primary source so they tell me will be doing more generalized radiation treatment to my throat.

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

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

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

Unknown Primary for me, too, which means they likely will have to apply more rads, unfortunately. I got zapped in 20 different places, which might be typical. I got Chemo with the rads, right from the get-go. Hope you don't get my Chemo delivery, but if you do- can advise you better than most on what's coming your way. I'm 23-months, post-treatment, Hq, returned to work a month after my last rad, and have been able to eat most anything I want over the last year-plus. You're gonna survive this thing, and will be okay.

A word of advice- if you're getting rads to the mouth, then start on the Flouride Trays before treatment even starts. That comes from the University of Iowa. Your teeth are gonna take a hit, and the best you can do is start of those Trays- Now.

kcass

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

Everyone basically touched on everything already. My first hose was pretty long and I would sort of wind it in a little coil and then I wore one of those stretchy netting things around my waist to hold in the tube close to me. It looks like the netting on a boneless leg of lamb roast. Lol. That was the most comfortable way for me. Im allergic to adhesive on the tape and I blister. My gauze pads were called drain sponges and the place when I got my formula, syringes and bags provided them. I liked the bigger ones like 4x5 I think. I would change that gauze few times a day.

I was also unknown primary. We are here 24/7 if you every have any questions. Can always PM me too.

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

They started me on the 4x4s, Sweet, but that took up more area, and, for a man, means more chest hair to shave off. Yeah, that was one of the reasons I opted for the 3x3. Funny thing, I also have a reaction to adhesive. With mine, I always thought it had something to do with sweat mixing with the adhesive, and just recently had another bad experience with such, and it was only paper tape. However, for some reason, during the C&R- never once had any problems with the paper tape! Still kinda blows my mind. I did get a couple red spots late in the game, but that's when the tape had been in place for a couple days. Had not even thought of that netting thing, but it does sound like a good option.

kcass

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

Well I suppose if I used the tape, I could have secured my hose, and waxed off my chest hair in one fell swoop. Multitasking. :) Just kidding I don't have chest hair...anymore. :D There's nothing wrong with a little manscaping, kcass.

I found out I was allergic to that tape when I had a heart monitor for 24 hrs. When we went to pull off the tape, I had blisters, huge blisters all over my chest and belly where the tape was. Let me tell you, I about fainted when my step mom ripped that tape off. Good grief that hurt!

Because the hose was so long, if I didn't have the bigger one, the tube chaffed my skin. The ace bandage is kind of a good idea, but it wouldn't breathe enough for me.

I stained and ruined more shirts with that peg tube hole weeping/bleeding. Even with a t shirt. I don't miss that thing. I called it the alien. Like in the movie Alien, that thing that pops out of the guys guts. Lol. I have a weird sense of humor.

Hq18
Posts: 24
Joined: Mar 2011

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.

Fire34
Posts: 353
Joined: Feb 2010

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
Dave

Hq18
Posts: 24
Joined: Mar 2011

Kent, thank you for the info! No they have not set me up yet with Home Care place yet. I can eat and drink right now but doctor recommened to get feeding tube in now before getting into treatment as he said it is easier so he may give this info to me next week when I start my treatment. If not, I will be asking now. Will keeping in touch! Thanks again!

robert77dr's picture
robert77dr
Posts: 54
Joined: Mar 2011

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 ??

Robert

D Lewis's picture
D Lewis
Posts: 1547
Joined: Jan 2010

I think the operative word here is siphon. Whenever my tube was lower than my stomach, the contents would siphon out. I had a sliding clip on my tube, that I could clip in closer to my body. When the clip was shut, no siphoning. Then, I had the cap on the end of the clip. When both were open, and I accidentally dropped the tubing, eeeek. So much for lunch.

I used to coil the tube and tape it to itself in a big loop. Then I would tuck part under my bra or into my sweatpants. My tube was originally quite long, as the gastro doc said that would make it easier to use, especially for those night-long slow feedings with the pump. Later, when my tube cap wore out, and I was less dependent on the night pump feedings, my doc cut the tube shorter and installed a new cap.

Deb

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hi HQ,
Just reading over your post and the replies and thought I'd share a couple of the things I learned with my PEG as I just got mine removed a couple months ago and the memories are still fresh.
The 3x3's and 4x4's do work good but were a little large and kinda scratchy so I switched to organic cotton rounds from any drugstore and just cut a little slit in them. These were softer than the medical pads and still big enough to soak up the little bit of oozing that never really stopped over the 4 months I had mine. I changed these daily and washed the area with Dr. Brawners soap and water daily. I did sterilize the area with peroxide as advised from this board for a couple weeks until my gastro told me that was a big no-no. Soap and water only. Apparently there is a risk of the peroxide following the outside of the tube down and potentially causing some problems. It also dried up the area around the tube pretty fast and caused a lot of itching. You'll figure out some ways of your own to secure the tube I'm sure. Like Sweet I had some reactions to the tape and didn't use it after day 2 or so. I used an Ace bandage with velcro to secure the tube when I went out but at home I just tucked it into my waistband with a little extra room to stretch without pulling it out. I also cut off about 8 inches of mine when I realized I didn't actually need 18 inches of tube. The fittings on the end pop out and can be put into the new end.
As for food; after I got a look at the ingredients in the cans that were provided and saw that they were basically corn syrup, preservatives and strange chemicals I made my own tube food and used it only. I'd be happy to share my recipe if you're interested. It might take a little more time but the healthy real food ingredients I used made all the difference in my overall health and I believe kept my side effects to a minimum.
You'll get used to the tube. You'll also be happy to get it removed when you are all done with treatment. Take the time to flush it with purified water after each feeding or 3 times daily if you aren't using it yet. If you take care of it, it will take care of you. Experiment with the feedings before you actually need to do them. I always preferred the kangaroo bags to the bolus method as I could set the pace pretty slow and read, watch a show or even take a nap. They should give you a portable iv pole to hang it from but I also used an s-hook to hang mine from all kinds of other places. It's nice to have the food be a little warm as the cold food doesn't feel good in the belly. Room temp at least. I'm sure it seems a little surreal to you having the tube as it did to me and probably everyone else on here. You do get used to it but when it's gone it's as if it were never there. Just a little scar.
Welcome to the board. Let us know how everything is going for you and any questions we can help you with. Keep your head up.

Bob

Hq18
Posts: 24
Joined: Mar 2011

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!

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

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.

Bob

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

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

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

I forget that all tubes are not the same. I like messing with all my gear and customizing everything, thus the tube t********. Probably best to start with racing stripes before cutting anything.

Bob

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

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.

Hq18
Posts: 24
Joined: Mar 2011

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!

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

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.

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Nothing scarier than an angry tube. Like a python ready to strike.

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

Funny. :) Hopefully he knows what I mean. Lol. 

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

My oozing didn't stop until the tube was removed. That is the reason for the cotton between skin and outside bolster.

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

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

hawk711's picture
hawk711
Posts: 532
Joined: Jan 2010

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
Steve

connieprice1's picture
connieprice1
Posts: 299
Joined: Oct 2010

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 & Connie

robert77dr's picture
robert77dr
Posts: 54
Joined: Mar 2011

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

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

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

kcass

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

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.

kcass

CeeVee
Posts: 2
Joined: Mar 2013

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!

Skiffin16's picture
Skiffin16
Posts: 8104
Joined: Sep 2009

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

CeeVee
Posts: 2
Joined: Mar 2013

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! 

Ruben and Jude's picture
Ruben and Jude
Posts: 154
Joined: Apr 2013

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

Thanks for posting.

Take care.   Jude

patricke's picture
patricke
Posts: 489
Joined: Aug 2006

I'm a long term pegger.  Fluid in the tube is normal.  I wouldn't worry about the tightness of the ring, I never have.  Your doc, no doubt, set the ring at the position that he/she felt was most appropriate.  If it extends above the surface of your stomach, it is no big deal, or at least it hasn't been for me; my bumper extends out about an inch.  Best of luck with it; I hope that you don't need to use it.

PATRICK

Papaw13
Posts: 13
Joined: Oct 2013

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. 

CivilMatt's picture
CivilMatt
Posts: 3094
Joined: May 2012

Pawpa13,

Welcome to the H&N forum, where many of us had PEG tubes, some for many years.

To get a real good response to your post you should start a new thread and repeat what you have already.  Sometimes these older threads fail to deliver the answers and information you deserve.

Many of the items you mention are doable, but recommended I do not know.  I was just a short termer and dripped Jevity only.

Best,

Matt

Papaw13
Posts: 13
Joined: Oct 2013

Thank you! I don't see how to start a new thread. I only have found how to reply to others. 

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

on the page of topics, look right beneath the words "head & neck", it says start a new topic.  just click on it.

dj

Hondo's picture
Hondo
Posts: 5936
Joined: Apr 2009

 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

Papaw13
Posts: 13
Joined: Oct 2013

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. 

phrannie51's picture
phrannie51
Posts: 3853
Joined: Mar 2012

If you put "tube feeding recipes" into google, you can find actual recipies for blended food for tube feeding.  The Drs. are probably just nervous that the food won't get blended enough, causing a clog or plug.  Making sure food is diluted enough with water, broth or milk....and the same consistancy and thickness as Ensure will get it down the tube.

Hondo is the expert on "regular" food down the tube.  Coca Cola will keep it nice and clean.

p

nick770's picture
nick770
Posts: 195
Joined: May 2012

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

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network