Question about PEG TUBE

I had my last of 33 radiation treatments for throat stage 4a on April 25th. Praise God, I am able to swallow and don't even use me peg tube. I have to flush it daily but no feedings. Ive had a endoscope that came back clean and have a CT scan on thwe 15th of June. I am wondering if anyone has an idea as to how long I have to keep the tube in? Dr was evasive on my last visit.

Comments

  • pmj2011
    pmj2011 Member Posts: 25
    Hi Zepfreak
    Normally the dr will want to keep the peg in until you are maintaining the same weight and swallowing ok. I kept mine in until I got my 90 day pet an ct scan results back. Good luck and god bless. Paul
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    pmj2011 said:

    Hi Zepfreak
    Normally the dr will want to keep the peg in until you are maintaining the same weight and swallowing ok. I kept mine in until I got my 90 day pet an ct scan results back. Good luck and god bless. Paul

    Zepfreak
    Kept mine for a little over a year after my end of treatment, but that was my choice. Probably a standard is the forementioned about not using it and maintaining weight; however, for me, I factored-in the possibility of needing it again, and waited until after my 1-year Pet Scan came back clean. Biggest hassle was the monthly flushings, which cost $137, and an hour of pay. Do not suggest you do the same, but do think you should consider the "Clean scan results" aspect. If you are confident you are clean, and have no reason to suspect otherwise, and are no longer using it- your call.

    kcass
  • Daddisgrl
    Daddisgrl Member Posts: 116
    My hub had his out about the
    My hub had his out about the point you're at now. I subscribe to- if you don't need it; why keep it there? If you need it again; they can redo it.

    Are you maintaining your weight?
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Daddisgrl said:

    My hub had his out about the
    My hub had his out about the point you're at now. I subscribe to- if you don't need it; why keep it there? If you need it again; they can redo it.

    Are you maintaining your weight?

    Daddisgrl
    Glad you posted this, because it is key to why I kept mine, Daddisgrl. I had a G-tube, which is not the greatest for getting re-installed, and didn't even know other types of PEGs existed for most of the time I had mine.

    Reasons: 1) knowing there was a hole in my stomach wall the size of the tube, being a little over 5/16 of an inch big, I figured after it was pulled that place on my stomach wall would be covered with scar tissue, and I didn't know of any complications with that. Also, I figured one hole and spot of scar tissue was enough.

    2) there's about an inch of my innards that had a path 5/16" in diameter bored thru it, and I figured one such path was big enough to not want another

    3) my abdominal wall (which is different from the stomach) was breached once, and that was enough for me

    The thing I didn't figure on was the 2nd belly button remaining, and which could enable the Surgeon to start a reinstallation on the right path, though not sure that woulda made any difference, because G-tubes involve a procedure going-in thru the mouth, if I'm not mistaken. I now know my Surgeon will likely install a balloon PEG if I need another.

    Daddisgrl and Zepfreak, I truly do thank you for prompting me to give the reasons for why I kept my PEG for a little over 15-months, which I have never done, here, before. I can only say that the above reasons validated my keeping the PEG, in my mind, which is not to suggest that anyone else should apply my reasons for themselves. If I'd known I would still be C-free when I did get it pulled, I woulda had it yanked sooner, to be sure.

    thank you

    kcass
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Kent Cass said:

    Daddisgrl
    Glad you posted this, because it is key to why I kept mine, Daddisgrl. I had a G-tube, which is not the greatest for getting re-installed, and didn't even know other types of PEGs existed for most of the time I had mine.

    Reasons: 1) knowing there was a hole in my stomach wall the size of the tube, being a little over 5/16 of an inch big, I figured after it was pulled that place on my stomach wall would be covered with scar tissue, and I didn't know of any complications with that. Also, I figured one hole and spot of scar tissue was enough.

    2) there's about an inch of my innards that had a path 5/16" in diameter bored thru it, and I figured one such path was big enough to not want another

    3) my abdominal wall (which is different from the stomach) was breached once, and that was enough for me

    The thing I didn't figure on was the 2nd belly button remaining, and which could enable the Surgeon to start a reinstallation on the right path, though not sure that woulda made any difference, because G-tubes involve a procedure going-in thru the mouth, if I'm not mistaken. I now know my Surgeon will likely install a balloon PEG if I need another.

    Daddisgrl and Zepfreak, I truly do thank you for prompting me to give the reasons for why I kept my PEG for a little over 15-months, which I have never done, here, before. I can only say that the above reasons validated my keeping the PEG, in my mind, which is not to suggest that anyone else should apply my reasons for themselves. If I'd known I would still be C-free when I did get it pulled, I woulda had it yanked sooner, to be sure.

    thank you

    kcass

    Power Port
    Hmmmm Kent, maybe one of the reasons or same logic that I still have the port in my chest two years after chemo ended....LOL.

    JG
  • Daddisgrl
    Daddisgrl Member Posts: 116
    Kent Cass said:

    Daddisgrl
    Glad you posted this, because it is key to why I kept mine, Daddisgrl. I had a G-tube, which is not the greatest for getting re-installed, and didn't even know other types of PEGs existed for most of the time I had mine.

    Reasons: 1) knowing there was a hole in my stomach wall the size of the tube, being a little over 5/16 of an inch big, I figured after it was pulled that place on my stomach wall would be covered with scar tissue, and I didn't know of any complications with that. Also, I figured one hole and spot of scar tissue was enough.

    2) there's about an inch of my innards that had a path 5/16" in diameter bored thru it, and I figured one such path was big enough to not want another

    3) my abdominal wall (which is different from the stomach) was breached once, and that was enough for me

    The thing I didn't figure on was the 2nd belly button remaining, and which could enable the Surgeon to start a reinstallation on the right path, though not sure that woulda made any difference, because G-tubes involve a procedure going-in thru the mouth, if I'm not mistaken. I now know my Surgeon will likely install a balloon PEG if I need another.

    Daddisgrl and Zepfreak, I truly do thank you for prompting me to give the reasons for why I kept my PEG for a little over 15-months, which I have never done, here, before. I can only say that the above reasons validated my keeping the PEG, in my mind, which is not to suggest that anyone else should apply my reasons for themselves. If I'd known I would still be C-free when I did get it pulled, I woulda had it yanked sooner, to be sure.

    thank you

    kcass

    Kent; the Peg is installed a
    Kent; the Peg is installed a few different ways; there are actually videos on you tube.

    For someone like my hub; having it removed asap was the best decision. He did not use it until 2 weeks into treatment & once food didn't taste right; he refused to eat because he couldn't emotionally. He also had pain & stomach problems which just kept getting worst. After treatment ended; he was still able to use it until 2 weeks later; then he couldn't handle more then 1 can a day because his stomach had so much pain.

    I've spoken to the rad techs; they all say they would get a peg in the beginning & I agree with the reasons why- you're healthier to be put under- 2nd; after watching the videos on you tube; I can't imagine having throat radiation; then they fish the tube through your throat; talk about pain when you wake up!

    So; it was necessary during treatment but a few weeks after treatment when the throat starts healing & they should be able to eat; they should have it removed because you need to get the muscles moving again. I would rather a Dr give pain meds to help eat then to leave the tube in & have the person not even try.

    At another board I go to; there are people that can't swallow & if they were told exactly why- I feel they may have tried harder. Sure the rad oncologist says the muscles need to keep moving; but they really should explain it more; how the throat will close & you need to have it dilated.
  • zepfreak
    zepfreak Member Posts: 24
    Daddisgrl said:

    My hub had his out about the
    My hub had his out about the point you're at now. I subscribe to- if you don't need it; why keep it there? If you need it again; they can redo it.

    Are you maintaining your weight?

    weight
    I am maintaining my weight. I had to have all my teeth pulled before radiation treatment so i can only eat soft foods, but i do. I also drink 6 cans a day of isosource per dr. instructions. Thank everyone for posts, gives me many options to think about
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Daddisgrl said:

    Kent; the Peg is installed a
    Kent; the Peg is installed a few different ways; there are actually videos on you tube.

    For someone like my hub; having it removed asap was the best decision. He did not use it until 2 weeks into treatment & once food didn't taste right; he refused to eat because he couldn't emotionally. He also had pain & stomach problems which just kept getting worst. After treatment ended; he was still able to use it until 2 weeks later; then he couldn't handle more then 1 can a day because his stomach had so much pain.

    I've spoken to the rad techs; they all say they would get a peg in the beginning & I agree with the reasons why- you're healthier to be put under- 2nd; after watching the videos on you tube; I can't imagine having throat radiation; then they fish the tube through your throat; talk about pain when you wake up!

    So; it was necessary during treatment but a few weeks after treatment when the throat starts healing & they should be able to eat; they should have it removed because you need to get the muscles moving again. I would rather a Dr give pain meds to help eat then to leave the tube in & have the person not even try.

    At another board I go to; there are people that can't swallow & if they were told exactly why- I feel they may have tried harder. Sure the rad oncologist says the muscles need to keep moving; but they really should explain it more; how the throat will close & you need to have it dilated.

    Daddisgrl
    Did your husband have a stomach/digestive problem, too? Only pain I had was the first couple days, and that wasn't really in the stomach, but rather between the stomach and the skin. One gets constipation, but that happens to most all of us in tx, and has nothing to do with the PEG. I had my PEG for a little over 15-months, and there really never was a stomach issue like you speak of, for me. It almost seems that half of us with PEGs have had some pain beyond the first couple days, but I'm not sure his digestive issues are typical.

    In the past, the swallowing function has been discussed now and then, and a few have had problems along those lines where they needed procedures to help correct. Very important that one keeps the function going, but for me all I needed thru treatment was sipping water, and melted ice in the worst of times. My C was not in the throat, though I did have 2 tumors on the left side of my neck and got rads to the throat. So, yes it is critically important that one keeps the swallowing muscles working, but one can do that while one still has the PEG- so I'm not sure I follow the logic for that being a reason for getting the PEG yanked. Again, I never really used my PEG the last year that I had it, and I was eating the regular way all that time.


    I'm sorry to hear your husband had the problems he did, and do hope the C is gone from him for good, now.

    And zepfreak- if you haven't really used the PEG, I would think it's typical to not having to wait very long to get it taken out. Great to hear things went so well for you.


    kcass