ALl right its been 3 months

rachel12yrsuv
rachel12yrsuv Member Posts: 435
in Head and Neck Cancer #1
And the dang peg tube still annoys the heck out of me. I really just want to go to hospital find the son of a gun who thought it was funny to place tube directly under my breast not allowing me to wear undergarment of choice due to pain, and its constantly getting bumped around so I keep getting granulated tissue that bleeds a little at every cleaning, and when I find him I will kick him his sensitive area over and over again so he might then have an idea that this placement sucks!

I have tried everything, I have started using the shoe string for night time and showering, day time its the tuck under bra, but everything sits right on that disk with those unhuman recetangular bumps at 6, 9,12,3 UGH!

Somebody tell me a fool proof way to wear this since I may have it for quite a while.....

HELP!


Rachel

Comments

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #2
    Mickey button?

    Hang in there, Rachel!

    There are alternative forms of PEG feeding tubes out there.  I understand that some of them lie pretty flat on the body. Dawn/Sweetblood ended up with a Mickey Button, I think.  Is there a gastroenterologist nearby that you could ask? Maybe they could swap it out? Or, refit you with a different bumper?

    Alternatively, can they loosen it a bit more so the bumps don't press down so hard?  Maybe then you could trim a small slab of memory foam or some other padding to cram under there full time?

    Also, don't be too hard on the seeming idiot who installed the thing.  They don't have a whole lot of options.  They had to go in and select the spot where the stomach was closest to the surface, to pop the pesky tube out through.  To pop out elsewhere would have been more problematic, and would have passed through more tissue/internal organs.  I've got a new bellybutton, just below my breastbone.

    Deb

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #3
    D Lewis said:

    Mickey button?

    Hang in there, Rachel!

    There are alternative forms of PEG feeding tubes out there.  I understand that some of them lie pretty flat on the body. Dawn/Sweetblood ended up with a Mickey Button, I think.  Is there a gastroenterologist nearby that you could ask? Maybe they could swap it out? Or, refit you with a different bumper?

    Alternatively, can they loosen it a bit more so the bumps don't press down so hard?  Maybe then you could trim a small slab of memory foam or some other padding to cram under there full time?

    Also, don't be too hard on the seeming idiot who installed the thing.  They don't have a whole lot of options.  They had to go in and select the spot where the stomach was closest to the surface, to pop the pesky tube out through.  To pop out elsewhere would have been more problematic, and would have passed through more tissue/internal organs.  I've got a new bellybutton, just below my breastbone.

    Deb

    Deb,
    I know that's probably
    Deb,

    I know that's probably why, but when I showed him the scar fro when I had treatment and the really bad experience he said wow we never put them that high. So God must have made me one funny looking belly inside.lol

    I know I should get it switched out, but I am scared, when they pulled up the 1st one 12yrs ago I past out fro shock. I don't want them poking and proding it without sedating me first.

    Little parinoid,

    Rachel
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #4
    rachel12yrsuv said:

    Deb,
    I know that's probably
    Deb,

    I know that's probably why, but when I showed him the scar fro when I had treatment and the really bad experience he said wow we never put them that high. So God must have made me one funny looking belly inside.lol

    I know I should get it switched out, but I am scared, when they pulled up the 1st one 12yrs ago I past out fro shock. I don't want them poking and proding it without sedating me first.

    Little parinoid,

    Rachel

    Ya it was pretty hard on me when they jerked mine out.

    I had some kind of muscle spasm and just laid there squeaking and gasping for about two minutes.  Scared them a bit, I think. Scared me.

    Deb

  • George_Baltimore
    George_Baltimore Member Posts: 303
    #5
    D Lewis said:

    Ya it was pretty hard on me when they jerked mine out.

    I had some kind of muscle spasm and just laid there squeaking and gasping for about two minutes.  Scared them a bit, I think. Scared me.

    Deb

    My second one is high also

    When I asked about this, the gastroenterologist said he couldn't use the old hole for some reason that I forgotten but it made sense at the time.  So if it's your second one, that is probably why it is so high.  LOL, not to make light of your situation but at least I don't have to worry about wearing a bra.  Sounds like you and I have the same kind with the four bumps on the inside of the flange.  You should be able to grip the tube with your fingers about half an inch from the flange and pull the flange out away from your skin.  I've adjusted mine at different times because of weight gain or loss.  Just sort of slide your fingers under the flange and move it out a little bit.

  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    #6
    Mine would get sore around it

    Mine would get sore around it sometimes, I always kept gauze pad between skin and it to help with the irritation. Mine was pretty high too. Wish I could be of more help.

  • peggylulu
    peggylulu Member Posts: 375
    #7
    boardwalkgirl said:

    Mine would get sore around it

    Mine would get sore around it sometimes, I always kept gauze pad between skin and it to help with the irritation. Mine was pretty high too. Wish I could be of more help.

    Peg

    I always had to keep gauze between it and skin on my Mother's  too !  Frown

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #8
    peggylulu said:

    Peg

    I always had to keep gauze between it and skin on my Mother's  too !  Frown

    Well....my lack of response is not for any reason other ....

    ..than as a guy I can't relate.  LOL  :)   However, after losing a total of 90lbs....it might just be that now I can relate if I still had my tube!  Muh ha ha ha ha.  (I hope the humor is okay, I am really sorry you are having fits with that thing).

     

    Tim

Discussion Boards