PEG Tube
Comments
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PEG
Hey dj, welcome to CSN. I've had my PEG for a long time, I never leave home without it. Recovery time is individualized of course, so just take as much time as you need, there really is no rush. I don't know how much time you will have before you start your Rads and Chemo, that is a big depends of course. Once your tube placement recovery is complete, there's not much that you can't do. I am a very active person, and my tube doesn't slow me down, but I am careful. When I say active I mean that I hike, backpack, run, surf (taking a hiatus for now though), canoe, bike, and one of my favorites, workout (i.e, weight lifting). After much trial and error, of how to best keep my tube safely in place, ah yes, there was the very long phase of duct taping it to my chest for strenuous activities, which actually worked very well for many years. I ran a half marathon and a marathon with my tube duct taped to my chest, along with many long hot, strenuous hikes, and backpacks. About 2 years ago, though I happily discovered the wonder of the Under Armour Compression Shirt, OMG, it's awesome, a miracle; no more duct tape needed!!! Now, I use Nexcare 1 inch cloth tape, held in place with the Compression Shirt, and my tube stays in place every time. In regard to concerns about stretching, during activities which require it, such as hiking, indoor gym rock climbing, backpacking, surfing, working out, etc., my strategy is to tape my tube between my pectoral muscles so that when I extend my arms fully the tube does not move, because it is in a fairly neutral position. During every day life, I just use the Nexcare cloth tape (I have found that this brand works best for me) and do tape it to my pectoral muscle, or at least to the skin covering it, and it stays in place with no problems. Hopefully, you won't have your PEG tube in long enough to need utilize any of my strategies, but if you do, these are some ideas that you can consider experimenting with to see what works for you.
PATRICK0 -
Thanks Patrick. That infopatricke said:PEG
Hey dj, welcome to CSN. I've had my PEG for a long time, I never leave home without it. Recovery time is individualized of course, so just take as much time as you need, there really is no rush. I don't know how much time you will have before you start your Rads and Chemo, that is a big depends of course. Once your tube placement recovery is complete, there's not much that you can't do. I am a very active person, and my tube doesn't slow me down, but I am careful. When I say active I mean that I hike, backpack, run, surf (taking a hiatus for now though), canoe, bike, and one of my favorites, workout (i.e, weight lifting). After much trial and error, of how to best keep my tube safely in place, ah yes, there was the very long phase of duct taping it to my chest for strenuous activities, which actually worked very well for many years. I ran a half marathon and a marathon with my tube duct taped to my chest, along with many long hot, strenuous hikes, and backpacks. About 2 years ago, though I happily discovered the wonder of the Under Armour Compression Shirt, OMG, it's awesome, a miracle; no more duct tape needed!!! Now, I use Nexcare 1 inch cloth tape, held in place with the Compression Shirt, and my tube stays in place every time. In regard to concerns about stretching, during activities which require it, such as hiking, indoor gym rock climbing, backpacking, surfing, working out, etc., my strategy is to tape my tube between my pectoral muscles so that when I extend my arms fully the tube does not move, because it is in a fairly neutral position. During every day life, I just use the Nexcare cloth tape (I have found that this brand works best for me) and do tape it to my pectoral muscle, or at least to the skin covering it, and it stays in place with no problems. Hopefully, you won't have your PEG tube in long enough to need utilize any of my strategies, but if you do, these are some ideas that you can consider experimenting with to see what works for you.
PATRICK
Thanks Patrick. That info will be very helpful. Had PEG Tube put in Friday morning. I have never felt such excruciating pain as I have on day 1&2. I don't like taking pain meds but found myself taking every 4 hours first day and still felt the pain. So now today on day 3 finally working on getting rid of nausea from them. Still feel a pulling and pain at site. Thought this would be relieved by now. Heard some tubes have a dial to relieve pressure but mine doesn't. It says they have it placed at 2cm on discharge papers. It's hard to straighten up when walking. Hope this gets better soon. Start radiation and chemo in 2 days on Tuesday. My tube is located about 2" up and left of belly button. Don't know if the positioning has anything to do with it or not.0 -
dj...I'm walking in your footsteps....dj12 said:Thanks Patrick. That info
Thanks Patrick. That info will be very helpful. Had PEG Tube put in Friday morning. I have never felt such excruciating pain as I have on day 1&2. I don't like taking pain meds but found myself taking every 4 hours first day and still felt the pain. So now today on day 3 finally working on getting rid of nausea from them. Still feel a pulling and pain at site. Thought this would be relieved by now. Heard some tubes have a dial to relieve pressure but mine doesn't. It says they have it placed at 2cm on discharge papers. It's hard to straighten up when walking. Hope this gets better soon. Start radiation and chemo in 2 days on Tuesday. My tube is located about 2" up and left of belly button. Don't know if the positioning has anything to do with it or not.
literally....shuffling along, bent over like an old lady. I had mine put in Weds, and have never in my life suffered such agonizing pain...late yesterday afternoon the cramping and spasms eased up (tho it felt like they were hanging there waiting to attack at any moment)...I still can't stand up straight, but the cramping is all gone. Mine is in approximately the same place as yours.
On Friday they did a CT of mine, because of the pain...what I was told is that they sometimes run up against or even thru the edge of the liver...and that's where all the pain comes from...it's also why for some people it's easy peasy, with little or no pain.
If I got mine on Weds, and finally felt some relief on Sat afternoon...then give yourself till tomorrow, and keep taking the pain meds if you can.
p0 -
Thanks P51. I get a ripplingphrannie51 said:dj...I'm walking in your footsteps....
literally....shuffling along, bent over like an old lady. I had mine put in Weds, and have never in my life suffered such agonizing pain...late yesterday afternoon the cramping and spasms eased up (tho it felt like they were hanging there waiting to attack at any moment)...I still can't stand up straight, but the cramping is all gone. Mine is in approximately the same place as yours.
On Friday they did a CT of mine, because of the pain...what I was told is that they sometimes run up against or even thru the edge of the liver...and that's where all the pain comes from...it's also why for some people it's easy peasy, with little or no pain.
If I got mine on Weds, and finally felt some relief on Sat afternoon...then give yourself till tomorrow, and keep taking the pain meds if you can.
p
Thanks P51. I get a rippling type pain in my stomach when I eat. Is that what you meant by spasms. First day my whole left side hurt like somebody broke my ribs. That went away on day 2. But it still hurts to cough or take deep breathes. Were you able to loosen your
T-crossbar? Can't take pain meds anymore cause of nausea. Can't chance having to get sick. Yikes could not even imagine the pain that would cause0 -
I am also a female too. Sodj12 said:Thanks P51. I get a rippling
Thanks P51. I get a rippling type pain in my stomach when I eat. Is that what you meant by spasms. First day my whole left side hurt like somebody broke my ribs. That went away on day 2. But it still hurts to cough or take deep breathes. Were you able to loosen your
T-crossbar? Can't take pain meds anymore cause of nausea. Can't chance having to get sick. Yikes could not even imagine the pain that would cause
I am also a female too. So not sure if that has anything to do with the pain thing or not.0 -
Yes, I get the rippling when I first start to eat...dj12 said:Thanks P51. I get a rippling
Thanks P51. I get a rippling type pain in my stomach when I eat. Is that what you meant by spasms. First day my whole left side hurt like somebody broke my ribs. That went away on day 2. But it still hurts to cough or take deep breathes. Were you able to loosen your
T-crossbar? Can't take pain meds anymore cause of nausea. Can't chance having to get sick. Yikes could not even imagine the pain that would cause
but that in itself isn't painful...just a weird sensation that makes me hold still and wait for a spasm...and by spasm, which I would have described as a massive charlie horse in my gut...left side, with refered pain all the way from my shoulder to my hip.
I don't know what you mean by a T-crossbar...is that what the part just on the outside of the hole looks like on yours? Mine is a circular plastic piece about the size of a half-dollar. There is a clamp about two inches down the tube...is that what you mean?
If the meds are making you sick, my Dr. told me to go ahead and use Advil or Alieve to help with pain also. She said 3 or 4 Advil...Can you take those instead?
I thought the same thing about getting sick....OMG, the pain would send ya to the moon.
p0 -
Yes that's the piece my tubephrannie51 said:Yes, I get the rippling when I first start to eat...
but that in itself isn't painful...just a weird sensation that makes me hold still and wait for a spasm...and by spasm, which I would have described as a massive charlie horse in my gut...left side, with refered pain all the way from my shoulder to my hip.
I don't know what you mean by a T-crossbar...is that what the part just on the outside of the hole looks like on yours? Mine is a circular plastic piece about the size of a half-dollar. There is a clamp about two inches down the tube...is that what you mean?
If the meds are making you sick, my Dr. told me to go ahead and use Advil or Alieve to help with pain also. She said 3 or 4 Advil...Can you take those instead?
I thought the same thing about getting sick....OMG, the pain would send ya to the moon.
p
Yes that's the piece my tube comes out. The bar piece looks like the top of the "T" and the tube is the bottom part of the "T". I have a
"C" clamp to open and close off the tube when not using. My biggest concern is not being able to lay on that table for my first radiation treatment Tuesday because of pain from tube. I weigh 115 5'3. They have been telling me to put on weight but from wisdom teeth being pulled recently and now this tube. I feel bad for you with spasms up and down your whole side. I just feel it in the stomach. I am gonna try some Tylenol thanks.0 -
Wondering if anyone else haddj12 said:Yes that's the piece my tube
Yes that's the piece my tube comes out. The bar piece looks like the top of the "T" and the tube is the bottom part of the "T". I have a
"C" clamp to open and close off the tube when not using. My biggest concern is not being able to lay on that table for my first radiation treatment Tuesday because of pain from tube. I weigh 115 5'3. They have been telling me to put on weight but from wisdom teeth being pulled recently and now this tube. I feel bad for you with spasms up and down your whole side. I just feel it in the stomach. I am gonna try some Tylenol thanks.
Wondering if anyone else had tightness of tube adjusted after a couple of days?0 -
peg tube
Hello,
I've had my peg tube for awhile. The pain at first was muscle spasms. The doctor gave me muscle relaxers that helped a great deal. Also pain meds. It took about three
weeks to heal to where I did not feel pain or muscle spasms.0 -
MY PEGImthesurvivor said:peg tube
Hello,
I've had my peg tube for awhile. The pain at first was muscle spasms. The doctor gave me muscle relaxers that helped a great deal. Also pain meds. It took about three
weeks to heal to where I did not feel pain or muscle spasms.
I'll post a picture of the PEG I had on my Expressions page.
Wonder if the physiology of women make the PEG more complicated than it is for us men. Like I've said, I drove myself home from the Op and hospital, and went to work the next morning. Seems like in the past a number of other women have spoken of painful times after placement, so it might have something to do with the innards difference between men and women.
kcass0 -
Well, they always say....women are more complicated...LOLKent Cass said:MY PEG
I'll post a picture of the PEG I had on my Expressions page.
Wonder if the physiology of women make the PEG more complicated than it is for us men. Like I've said, I drove myself home from the Op and hospital, and went to work the next morning. Seems like in the past a number of other women have spoken of painful times after placement, so it might have something to do with the innards difference between men and women.
kcass
I was going to ask how long I was going to have to walk like this, but Pat says it took about 3 weeks for his to heal...yet you, Kent...were working the next day...so maybe I'll be somewhere inthe middle.
It's a worrisome little addition to my body, too. I don't mean just the hurting part...but I keep wondering if it's "ok"...I accidently bumped it tonight putting on a sweater, and was cursing like a sailor, I embarrassed myself...owie owie! I walk around protecting it like a newborn kitten...The butt Dr. sent home a book to go with it, all very good reading of course...but I vaguely remember him standing above my bed giving me aftercare instructions...well, I remember his face and remember his lips moving...but I don't remember anything he said. Is it ok to bend (I'm always bending to do things in the house, for the dog, in the yard)? Lift light things?
Does this thing cause a lot of gas? I seem to burp more than I ever have (and that hurts), but a lot of gas in my intestinal tract, too...I thought maybe they pump you full of air when they put it in, but after 4 days, you'd think that would be over.
With all that has gone on in the last week...and all that is in front of me this week...THIS little life line is by far the most worrysome (much more than the lung).
p0 -
P51phrannie51 said:Well, they always say....women are more complicated...LOL
I was going to ask how long I was going to have to walk like this, but Pat says it took about 3 weeks for his to heal...yet you, Kent...were working the next day...so maybe I'll be somewhere inthe middle.
It's a worrisome little addition to my body, too. I don't mean just the hurting part...but I keep wondering if it's "ok"...I accidently bumped it tonight putting on a sweater, and was cursing like a sailor, I embarrassed myself...owie owie! I walk around protecting it like a newborn kitten...The butt Dr. sent home a book to go with it, all very good reading of course...but I vaguely remember him standing above my bed giving me aftercare instructions...well, I remember his face and remember his lips moving...but I don't remember anything he said. Is it ok to bend (I'm always bending to do things in the house, for the dog, in the yard)? Lift light things?
Does this thing cause a lot of gas? I seem to burp more than I ever have (and that hurts), but a lot of gas in my intestinal tract, too...I thought maybe they pump you full of air when they put it in, but after 4 days, you'd think that would be over.
With all that has gone on in the last week...and all that is in front of me this week...THIS little life line is by far the most worrysome (much more than the lung).
p
Negative to the gas thing, as I remember. Know others have spoken of bad belching episodes, but don't know if they were PEG-related. Haven't seen that discussed in quite awhile, but was a topic some time ago.
Wondered if you checked-out my Expressions page, and your PEG is like mine? Know there are different types of PEGs. One does have to take it slow and be careful for awhile. The liver is actually lower on the body's right side, but does extend upwards to the left base of the ribcage, so may be possible it is/was part of this thing you are dealing with. Did your Surgeon, by chance, tell you if they've installed many others with PEGs? Could be that's the literature he/she also had to read! My Surgeon and Onco office didn't tell me anything- got all my info from the Home Healthcare gal. Didn't even see my Surgeon after the Op.
Not sure how to put some bad humor on you, Phrannie, but when they take the PEG out all they do is put pressure on your tummy and yank it out, after twisting it around a bit to break any potential seal with the stomach wall. I don't say that to scare you, but rather to illustrate that it's typical for the body to mend around the tube, and for it to become only a painfree nuissance. At least that's my 15-month experience with the PEG.
kcass0 -
The only difference in our tubes that I can see....Kent Cass said:P51
Negative to the gas thing, as I remember. Know others have spoken of bad belching episodes, but don't know if they were PEG-related. Haven't seen that discussed in quite awhile, but was a topic some time ago.
Wondered if you checked-out my Expressions page, and your PEG is like mine? Know there are different types of PEGs. One does have to take it slow and be careful for awhile. The liver is actually lower on the body's right side, but does extend upwards to the left base of the ribcage, so may be possible it is/was part of this thing you are dealing with. Did your Surgeon, by chance, tell you if they've installed many others with PEGs? Could be that's the literature he/she also had to read! My Surgeon and Onco office didn't tell me anything- got all my info from the Home Healthcare gal. Didn't even see my Surgeon after the Op.
Not sure how to put some bad humor on you, Phrannie, but when they take the PEG out all they do is put pressure on your tummy and yank it out, after twisting it around a bit to break any potential seal with the stomach wall. I don't say that to scare you, but rather to illustrate that it's typical for the body to mend around the tube, and for it to become only a painfree nuissance. At least that's my 15-month experience with the PEG.
kcass
is that instead of a little T bar thing that would be on the outside touching the skin, I have a little circular thing, just a tad smaller than a half-dollar sitting on my skin. The end of the tube looks the same with the two little knobbies where you'd put in the food (don't know why there are two, but that part looks the same).
Home Health is supposed to be here again tomorrow...I'm going to really drill her on this little apparatus...I think part of my nervousness comes from having pierced ears...I have multiple piercings in my ears. It takes a while for them to heal up (and that's just an earlobe)...at first they get infected easily, and bumping them, sleeping on them etc...generally irritating them postpones healing. Now THIS is a big thing, thru a whole lot more tissue...but a piercing none the less...
The Dr. told me at the consult how they take them out...he said like a starting a lawnmower...LOL. If it's hooked into my liver somehow, I hope they plan on knocking me out...I don't want to end my PEG tube experience like I started it.
p0 -
You'll adapt.phrannie51 said:Well, they always say....women are more complicated...LOL
I was going to ask how long I was going to have to walk like this, but Pat says it took about 3 weeks for his to heal...yet you, Kent...were working the next day...so maybe I'll be somewhere inthe middle.
It's a worrisome little addition to my body, too. I don't mean just the hurting part...but I keep wondering if it's "ok"...I accidently bumped it tonight putting on a sweater, and was cursing like a sailor, I embarrassed myself...owie owie! I walk around protecting it like a newborn kitten...The butt Dr. sent home a book to go with it, all very good reading of course...but I vaguely remember him standing above my bed giving me aftercare instructions...well, I remember his face and remember his lips moving...but I don't remember anything he said. Is it ok to bend (I'm always bending to do things in the house, for the dog, in the yard)? Lift light things?
Does this thing cause a lot of gas? I seem to burp more than I ever have (and that hurts), but a lot of gas in my intestinal tract, too...I thought maybe they pump you full of air when they put it in, but after 4 days, you'd think that would be over.
With all that has gone on in the last week...and all that is in front of me this week...THIS little life line is by far the most worrysome (much more than the lung).
p
I've had my Peg Tube out now for two years, and I still giggle at myself when removing my sweatshirts/T-Shirts, etc.. You will learn to hold the front of the garment that you are removing over your head. Grab it at the bottom front......hold it out so as not to mess with the tube, and take it over your head. Habits are hard to break, cause I'm still doing it that way. You'll also adapt to different methods of taking a shower. Hang in there....we are all pulling for ya.
Larry0 -
Well I'm into day 4 and I'mphrannie51 said:The only difference in our tubes that I can see....
is that instead of a little T bar thing that would be on the outside touching the skin, I have a little circular thing, just a tad smaller than a half-dollar sitting on my skin. The end of the tube looks the same with the two little knobbies where you'd put in the food (don't know why there are two, but that part looks the same).
Home Health is supposed to be here again tomorrow...I'm going to really drill her on this little apparatus...I think part of my nervousness comes from having pierced ears...I have multiple piercings in my ears. It takes a while for them to heal up (and that's just an earlobe)...at first they get infected easily, and bumping them, sleeping on them etc...generally irritating them postpones healing. Now THIS is a big thing, thru a whole lot more tissue...but a piercing none the less...
The Dr. told me at the consult how they take them out...he said like a starting a lawnmower...LOL. If it's hooked into my liver somehow, I hope they plan on knocking me out...I don't want to end my PEG tube experience like I started it.
p
Well I'm into day 4 and I'm still really bloated. They didn't say anything to me before they decided to pump my stomach full of air. Called the doctor's office today regarding pain and getting the tube loosened (really pinching my skin) and all she said was that it was normal for the pain and tightness. You just have let it run it's course. Easy for her to say. This has turned in something I never imagined. Hard to take deep breaths, cough or sneeze. She said don't worry you won't tear anything. Don't even ask what was going through my mind at that point. And then she suggested putting ice packs on my stomach.0 -
Yesterday was my day 4, and I was having a lot of gas...dj12 said:Well I'm into day 4 and I'm
Well I'm into day 4 and I'm still really bloated. They didn't say anything to me before they decided to pump my stomach full of air. Called the doctor's office today regarding pain and getting the tube loosened (really pinching my skin) and all she said was that it was normal for the pain and tightness. You just have let it run it's course. Easy for her to say. This has turned in something I never imagined. Hard to take deep breaths, cough or sneeze. She said don't worry you won't tear anything. Don't even ask what was going through my mind at that point. And then she suggested putting ice packs on my stomach.
and bloat (still have some)...there is swelling at the incision site, so it is tighter between the stopper on my skin (in your case the little T bar)...I had trouble getting the gauze thingee under it this morning...Home Health came and said mine was fine also. I've had no "inside" pain today (the horrible cramping, just the little flutters that hurt for just a second, and then are gone) and surgery pain (outside pain)....so give it one more day, and see if that's what it takes to get some of these symptoms in check.
I took Alieve today (the the liquid gels), and that seemed to help some (once I start moving around, it hurts more). Don't eat anything that is gassy...I've been eating my power shakes in the morning, and a smaller one at night, with darn little in terms of veggies etc, to avoid anything that might bloat me up more.
IF it's still really hurting tomorrow, or the swelling is worse I'd insist that they at least look at it. It is surgery afterall, and there's the chance of infection...besides, it will ease your mind. I think it's horrible that they just let you sit at home worrying and wondering if all is ok.
Do try the icepacks...they might take that swelling down...and ease some of the pain...really, I'm not much of an icepacker...but it sure worked when they put the chest tube in last week.
p0 -
Thanks P51. I hope so.phrannie51 said:Yesterday was my day 4, and I was having a lot of gas...
and bloat (still have some)...there is swelling at the incision site, so it is tighter between the stopper on my skin (in your case the little T bar)...I had trouble getting the gauze thingee under it this morning...Home Health came and said mine was fine also. I've had no "inside" pain today (the horrible cramping, just the little flutters that hurt for just a second, and then are gone) and surgery pain (outside pain)....so give it one more day, and see if that's what it takes to get some of these symptoms in check.
I took Alieve today (the the liquid gels), and that seemed to help some (once I start moving around, it hurts more). Don't eat anything that is gassy...I've been eating my power shakes in the morning, and a smaller one at night, with darn little in terms of veggies etc, to avoid anything that might bloat me up more.
IF it's still really hurting tomorrow, or the swelling is worse I'd insist that they at least look at it. It is surgery afterall, and there's the chance of infection...besides, it will ease your mind. I think it's horrible that they just let you sit at home worrying and wondering if all is ok.
Do try the icepacks...they might take that swelling down...and ease some of the pain...really, I'm not much of an icepacker...but it sure worked when they put the chest tube in last week.
p
Thanks P51. I hope so. Radiation starts tomorrow and I'm hoping I won't have any problems with laying there knowing I can't take deep breathes. I thought I would be fine with the radiation but now additional stomach pain doesn't help it at all. Also know a couple guys that had peg tubes but they were back to normal in a couple days.0 -
I think Kent may have hit on something.....dj12 said:Thanks P51. I hope so.
Thanks P51. I hope so. Radiation starts tomorrow and I'm hoping I won't have any problems with laying there knowing I can't take deep breathes. I thought I would be fine with the radiation but now additional stomach pain doesn't help it at all. Also know a couple guys that had peg tubes but they were back to normal in a couple days.
that women have more trouble with them in the start then men...maybe something slightly different in the surgery area in how we're put together?
I start both chemo and radiation tomorrow, and didn't think about not taking deep breaths, now I am, tho
....are you getting the cramps when you breath deep? I'm wondering about calling the Dr. who put it in, explain that you are starting rads, and still can't take a deep breath. All you might really need is a few muscle relaxants to get you thru the next few days (rather than pain meds)...he might just prescibe you some (or even have some samples in his office).
Are you doing any walking? I'm wondering if the fact that have to walk to care for my dog might be why the bloat didn't last. It hasn't been comfortable doing it, but I don't have a lot of choice. Just slow walking, no power walking.
p0
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