G tube questions

amr2662
amr2662 Member Posts: 45 Member
in Head and Neck Cancer #1
A few weeks ago I had a G-tube put because it was getting to difficult to swallow. I had an open surgical procedure because the PEG tube insertion was unsuccessful. I am 4 weeks out and the incision is healed up well but I still have a lot of discomfort around the tube. It is a large tube (24 French) and is held in with stitches. Every time I move it pulls around the tube at the stitches. I keep it taped to me to secure it all the time per my surgeon's instructions. Did anyone else have this type of tube? I am going to have a tube forever and I am already wanting to yank it out! The low profile buttons look like they would be much more comfortable. My surgeon keeps telling me this one is better because it doesn't get clogged.

Meredith

Comments

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #2
    meredith
    "unsuccessful?" Not sure I understand, because you do have a G-tube/PEG, don't you? Are you just saying that it had to be installed with an Op? Mine was, also. I had a G-tube, but no stitches- not even when they took it out. Not sure what buttons are. My tube was the older-type with 3/8" OD tube, and the dome inside my stomach measured some 15/16" in diameter. And, stitches are only temporary, so are you getting your's out soon?

    Yes, as to keeping it taped to the upper chest. Sweet used a net-like wrap, I think, to keep her's in place, and that would be more skin-friendly.

    kcass
  • amr2662
    amr2662 Member Posts: 45 Member
    #3
    Kent Cass said:

    meredith
    "unsuccessful?" Not sure I understand, because you do have a G-tube/PEG, don't you? Are you just saying that it had to be installed with an Op? Mine was, also. I had a G-tube, but no stitches- not even when they took it out. Not sure what buttons are. My tube was the older-type with 3/8" OD tube, and the dome inside my stomach measured some 15/16" in diameter. And, stitches are only temporary, so are you getting your's out soon?

    Yes, as to keeping it taped to the upper chest. Sweet used a net-like wrap, I think, to keep her's in place, and that would be more skin-friendly.

    kcass

    Kent
    Thanks for responding. They tried to put the tube in endoscopically (PEG) but they ran into difficulty and it was too risky - so the next day I had the open surgical tube placement. My tube fits the description you gave. If you didn't have stitches, did you have something that rested up against your skin to hold it in place? My surgeon says the stitches stay in. These are some hefty stitches. Thick like upholstery thread. I don't go back to see the surgeon for a 3 weeks so there is no way they are coming out before then. I am very limited in how I can tape it up because the stitches only let the tube go one way without painfully pulling.

    Meredith
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
    amr2662 said:

    Kent
    Thanks for responding. They tried to put the tube in endoscopically (PEG) but they ran into difficulty and it was too risky - so the next day I had the open surgical tube placement. My tube fits the description you gave. If you didn't have stitches, did you have something that rested up against your skin to hold it in place? My surgeon says the stitches stay in. These are some hefty stitches. Thick like upholstery thread. I don't go back to see the surgeon for a 3 weeks so there is no way they are coming out before then. I am very limited in how I can tape it up because the stitches only let the tube go one way without painfully pulling.

    Meredith

    Hi Meredith
    I had three 'different' pegs. I never had stitches when they put mine in. I am guessing that because they had to do it a different way you ended up having them. I did have a little bumper that rested against my belly that held it in place there. I did not use tape because I'm allergic to adhesive. I had a stretchy netting that went around my waist to hold the tubing in place. Just make sure they cut it wide or long enough. Whichever way you want to say it. It needs to be at least 24". But I'm tiny, may need to be wider for a larger person. If it's too short it just rolls down and doesn't work. I would hand wash them every day. I had about five in rotation. I had one way that I always coiled the tube around that it hurt and pulled less too.

    I had my tube for 18 months and the last one I had was the low profile mic-key button. So much more comfy. That tube hanging there all the time was annoying. If you haven't seen the low profile one, there is a picture of it in the peg tube section of the HNC Superthread. Or on my expressions pages. With the low profile one, there are two different size hoses that you can connect to it, but the little connector button part is narrow. I could see how it could possibly get clogged easier, depending on what you were putting thru your tube. Mine never clogged. By the time I got it though, I was only putting thru nutren and water through it. During rads, I put thru the canned nutrition, yogurt, and baby food thru my tube.

    I think I saw that you said you will always have the tube? Do you know if you will be using only canned nutrtion? If you do decide to make your own peg tube food, and you got the low profile one, you would definitely need to process the food with a good emulsifier like a vitamix or healthmaster or highspeed excellent blender, then possibly strain it thru a fine mesh seive and make sure plenty of water to flush after.

    Any questions feel free to ask.

    Sweet
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #5
    sweetblood22 said:

    Hi Meredith
    I had three 'different' pegs. I never had stitches when they put mine in. I am guessing that because they had to do it a different way you ended up having them. I did have a little bumper that rested against my belly that held it in place there. I did not use tape because I'm allergic to adhesive. I had a stretchy netting that went around my waist to hold the tubing in place. Just make sure they cut it wide or long enough. Whichever way you want to say it. It needs to be at least 24". But I'm tiny, may need to be wider for a larger person. If it's too short it just rolls down and doesn't work. I would hand wash them every day. I had about five in rotation. I had one way that I always coiled the tube around that it hurt and pulled less too.

    I had my tube for 18 months and the last one I had was the low profile mic-key button. So much more comfy. That tube hanging there all the time was annoying. If you haven't seen the low profile one, there is a picture of it in the peg tube section of the HNC Superthread. Or on my expressions pages. With the low profile one, there are two different size hoses that you can connect to it, but the little connector button part is narrow. I could see how it could possibly get clogged easier, depending on what you were putting thru your tube. Mine never clogged. By the time I got it though, I was only putting thru nutren and water through it. During rads, I put thru the canned nutrition, yogurt, and baby food thru my tube.

    I think I saw that you said you will always have the tube? Do you know if you will be using only canned nutrtion? If you do decide to make your own peg tube food, and you got the low profile one, you would definitely need to process the food with a good emulsifier like a vitamix or healthmaster or highspeed excellent blender, then possibly strain it thru a fine mesh seive and make sure plenty of water to flush after.

    Any questions feel free to ask.

    Sweet

    Same
    Though I only had the one PEG for my 15-months, mine also had a "bumper" holding it in place against my weewittle belly. If you have stitches there, it is unlike any PEG I'm familiar with. And, does make me wonder why your Surgeon used that type of PEG. My Surgeon told me, long after the fact, that he cares for a woman who is a PEG lifer, and uses a balloon PEG, which can easily be replaced. Your's may be clog-proof, according to your Surgeon, but replacement will likely take another OP, if the need arises.

    So, are you getting cared for at a major C medical center, or are you small town? Just wondered, based on the PEG choice your Surgeon gave you.

    kcass
  • Mikki332
    Mikki332 Member Posts: 49
    #6
    Similiar experience
    Hi Meredith...
    My husband had his gtube inserted surgically as well (first procedure didn't work as his stomach had to be pulled down and stitched into place). His tube had a balloon at the end and the bumpers that you speak of. His was also stitched into place with two hefty stitches (top and bottom). The surgeon wanted said the stitches could be removed after 2-3 wees, but Gary was afraid the tube would fall out (it kept getting loser as he lost weight), so he left them in. Eventually, the stitches became quite infected and had to be removed. The doc assured us that the tube would not fall out (that there was supposed to be "give" in the tube). Gary could pull his tube out about 2"....we kept saying that it seemed like it would fall out. Low and behold, it fell out in the middle of the night.....they did get another one in without surgery, but it had to be a smaller tube since the stoma started closing before we could get to the doc. I'm guessing that the stitches won't be forever for you. Gary used an ace bandage to wrap his tube, but it gets hot and messy. Sweet's idea is so much better!

    PS We did ask about a Mickey button when he had his PEG done, but the docs said no....they only use it in children around here. However, I've read many blogs and posts about folks successfully using it. Good luck!
    Mikki
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #7
    Mikki332 said:

    Similiar experience
    Hi Meredith...
    My husband had his gtube inserted surgically as well (first procedure didn't work as his stomach had to be pulled down and stitched into place). His tube had a balloon at the end and the bumpers that you speak of. His was also stitched into place with two hefty stitches (top and bottom). The surgeon wanted said the stitches could be removed after 2-3 wees, but Gary was afraid the tube would fall out (it kept getting loser as he lost weight), so he left them in. Eventually, the stitches became quite infected and had to be removed. The doc assured us that the tube would not fall out (that there was supposed to be "give" in the tube). Gary could pull his tube out about 2"....we kept saying that it seemed like it would fall out. Low and behold, it fell out in the middle of the night.....they did get another one in without surgery, but it had to be a smaller tube since the stoma started closing before we could get to the doc. I'm guessing that the stitches won't be forever for you. Gary used an ace bandage to wrap his tube, but it gets hot and messy. Sweet's idea is so much better!

    PS We did ask about a Mickey button when he had his PEG done, but the docs said no....they only use it in children around here. However, I've read many blogs and posts about folks successfully using it. Good luck!
    Mikki

    Well Mikki, that stinks that
    Well Mikki, that stinks that they wouldn't do it for an adult. Yes, that mesh netting I just got from my gastro lady that used to change my tube. Much cooler than an ace bandage, for sure. It always reminded me of the butchers netting that goes over a roast tho. Felt like a big boneless leg of lamb Lol
  • Greend
    Greend Member Posts: 678
    #8
    sweetblood22 said:

    Well Mikki, that stinks that
    Well Mikki, that stinks that they wouldn't do it for an adult. Yes, that mesh netting I just got from my gastro lady that used to change my tube. Much cooler than an ace bandage, for sure. It always reminded me of the butchers netting that goes over a roast tho. Felt like a big boneless leg of lamb Lol

    $#@#$ Tube
    14 years after treatment they had to insert the g-tube (rest of my life as well). I too asked about the button and 100% recommended the tube. I do have a "rubber" thing that holds it in place against the skin. After time you learn to live with it and all the little secrets. My biggest problem with it is that I know some day it will come out and have to be replaced. We have a house in Mexico and I have been reluctant to go down for fear that it will come out while I'm down there. Guess I'd best learn to say "can you put another one of these $#$%% things back in" in spanish.

    Good luck.

    Denny
  • amr2662
    amr2662 Member Posts: 45 Member
    #9
    Greend said:

    $#@#$ Tube
    14 years after treatment they had to insert the g-tube (rest of my life as well). I too asked about the button and 100% recommended the tube. I do have a "rubber" thing that holds it in place against the skin. After time you learn to live with it and all the little secrets. My biggest problem with it is that I know some day it will come out and have to be replaced. We have a house in Mexico and I have been reluctant to go down for fear that it will come out while I'm down there. Guess I'd best learn to say "can you put another one of these $#$%% things back in" in spanish.

    Good luck.

    Denny

    Wow-Me too Denny
    I too did not need my tube until 12 years post radiation. I made it through 7 weeks of radiation for Stage 4B NPC and although I probably needed a tube, I never had one put in. I was reluctant to share that little fact with the group. It is not very encouraging. I am grateful to be alive, but the side effects are hard to deal with and people don't understand why I am having side effects 12 years later.
    Meredith
  • Greend
    Greend Member Posts: 678
    #10
    amr2662 said:

    Wow-Me too Denny
    I too did not need my tube until 12 years post radiation. I made it through 7 weeks of radiation for Stage 4B NPC and although I probably needed a tube, I never had one put in. I was reluctant to share that little fact with the group. It is not very encouraging. I am grateful to be alive, but the side effects are hard to deal with and people don't understand why I am having side effects 12 years later.
    Meredith

    I can name that tune
    In the last 15 months I have lost left vocal cord, total numbness of chin, partial numbness to the right side of my face, numbness to tongue and have more difficulty swallowing. I had lost weight to the point the Dr was afraid I would be too thin to get a tube so they inserted it at 145 lbs. I have gaind more weight since I got the tube (158lbs now) but had two bouts with pneumonia (one on New Years on a cruise ship) which the Dr think was from inhaling food that would be stuck in my throat for days. Since I started 100% tube I have not had any more problems. Dr says these after effects are not un-common but normally show up at the seven year point so I just say I got an extra seven years :>).

    Good news is I have adjusted. I miss working but at least I'm on this side of the dirt.
  • amr2662
    amr2662 Member Posts: 45 Member
    #11
    Greend said:

    I can name that tune
    In the last 15 months I have lost left vocal cord, total numbness of chin, partial numbness to the right side of my face, numbness to tongue and have more difficulty swallowing. I had lost weight to the point the Dr was afraid I would be too thin to get a tube so they inserted it at 145 lbs. I have gaind more weight since I got the tube (158lbs now) but had two bouts with pneumonia (one on New Years on a cruise ship) which the Dr think was from inhaling food that would be stuck in my throat for days. Since I started 100% tube I have not had any more problems. Dr says these after effects are not un-common but normally show up at the seven year point so I just say I got an extra seven years :>).

    Good news is I have adjusted. I miss working but at least I'm on this side of the dirt.

    I lost my left vocal cord 18
    I lost my left vocal cord 18 months post rads, left shoulder weakness five years out, right shoulder 7 years out, left side of tongue 9 years out and right side 10 years out. Left side of face is weak and right side is just starting. Got to the point where I just could eat enough anymore to maintain weight no matter what I tried. I spent 2-3 hours a night trying to barely get in 800 cal a day. I am currently still working although I am not sure how much longer I will be able to even with the tube. Speaking problems make work frustrating at times.
    Currently going through the "could it be a recurrence scans" for the increase swallowing problems.
    Not that I would wish this on anyone, but it is strangely nice to know I am not alone.
  • amr2662
    amr2662 Member Posts: 45 Member
    #12
    Greend said:

    I can name that tune
    In the last 15 months I have lost left vocal cord, total numbness of chin, partial numbness to the right side of my face, numbness to tongue and have more difficulty swallowing. I had lost weight to the point the Dr was afraid I would be too thin to get a tube so they inserted it at 145 lbs. I have gaind more weight since I got the tube (158lbs now) but had two bouts with pneumonia (one on New Years on a cruise ship) which the Dr think was from inhaling food that would be stuck in my throat for days. Since I started 100% tube I have not had any more problems. Dr says these after effects are not un-common but normally show up at the seven year point so I just say I got an extra seven years :>).

    Good news is I have adjusted. I miss working but at least I'm on this side of the dirt.

    I lost my left vocal cord 18
    I lost my left vocal cord 18 months post rads, left shoulder weakness five years out, right shoulder 7 years out, left side of tongue 9 years out and right side 10 years out. Left side of face is weak and right side is just starting. Got to the point where I just could eat enough anymore to maintain weight no matter what I tried. I spent 2-3 hours a night trying to barely get in 800 cal a day. I am currently still working although I am not sure how much longer I will be able to even with the tube. Speaking problems make work frustrating at times.
    Currently going through the "could it be a recurrence scans" for the increase swallowing problems.
    Not that I would wish this on anyone, but it is strangely nice to know I am not alone.
  • Greend
    Greend Member Posts: 678
    #13
    amr2662 said:

    I lost my left vocal cord 18
    I lost my left vocal cord 18 months post rads, left shoulder weakness five years out, right shoulder 7 years out, left side of tongue 9 years out and right side 10 years out. Left side of face is weak and right side is just starting. Got to the point where I just could eat enough anymore to maintain weight no matter what I tried. I spent 2-3 hours a night trying to barely get in 800 cal a day. I am currently still working although I am not sure how much longer I will be able to even with the tube. Speaking problems make work frustrating at times.
    Currently going through the "could it be a recurrence scans" for the increase swallowing problems.
    Not that I would wish this on anyone, but it is strangely nice to know I am not alone.

    left vs right
    Sounds like you had left side damage where I had right side...let's get together and make either one well or one really messed up person :>)

    I was the VP os a mid-sized IT company and because of my loss of voice I finally had to apply for short term disability which will convert to long term in July. I hate not working but I had no choice. In July I must apply for social security disability (per my insurance company) which will be even more paperwork. I very well understand the frustrations of trying to talk, folks actually tell me I have a bad line when on the phone. I don't remember the last tme I was able to order food for my wife at a drive through.

    You mentioned your hesitation about telling this in this forum and my thoughts are the more people know the better prepared they will be if they encounter this problem (it is not normal, we are some of the chosen few). I wish I had known about the trigeminal nerve when all this started, it would have saved me a lot of Dr visits and frustration. It really does mess up the face, shoulder and upper back By the way, one other symptom I have is a periodic very sharp and intense pain running the length of the right side of my lower jaw. Dr said it should last a few minutes and then go away...guess what, my last session lasted 5 days. Oh well another day above ground and seeing my wife and grandchildren.

    Good luck to you..you have been going through this much longer than I.

    Denny

    By the way, swallowing problem is common....doubt the cancer has returned. Let us know

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