PEG Tube
Comments
-
Hq
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.
kcass0 -
Thanks Pam! That is exactlyPam M said:welcome
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.
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?0 -
Thank you Kent! I startedKent Cass said:Hq
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
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, HQ18.0 -
Don't DrainHq18 said:Thanks Pam! That is exactly
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?
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.0 -
Hi HqHq18 said:Thank you Kent! I started
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.
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
Hondo0 -
Pam, thanks again for thePam M said:Don't Drain
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.
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!0 -
Wow! That is fantasticHondo said:Hi Hq
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
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.0 -
Jevity, etcHq18 said:Thank you Kent! I started
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.
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.
kcass0 -
No PrimaryKent 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
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.
kcass0 -
Hi thereKent Cass said:No Primary
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
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.0 -
Yessweetblood22 said:Hi there
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.
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.
kcass0 -
Tube
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.
Bob0 -
Chest hair.Kent Cass said:Yes
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
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. 
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.0 -
Everyone, thank you so muchadventurebob said:Tube
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
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!0 -
Kent, thank you for theKent 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
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!0 -
My radient doctor recommenedKent Cass said:No Primary
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
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.0 -
Bwa ha ha ha ha haPam M said:welcome
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.
I recall the red jello. Scared me, just for a minute...
Deb0 -
SiphonKent Cass said:Hq
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
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.
Deb0 -
Bob & HQadventurebob said:Tube
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
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.
kcass0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.6K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 308 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 395 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 671 Leukemia
- 791 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 234 Multiple Myeloma
- 7.1K Ovarian Cancer
- 56 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.4K Prostate Cancer
- 1.2K Rare and Other Cancers
- 534 Sarcoma
- 719 Skin Cancer
- 646 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.9K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards