Peg tube failed

PJ47
PJ47 Member Posts: 376
in Head and Neck Cancer #1

In hospital for observation due to failed gastrostony tube.  Missed 2rad. Tx

had laparoscopy placement Monday was in much pain from it and by 11am it had deflated & pulled out so went to er and resident surgeon put foley cath in as temp measure to keep holes open admitted to room at 3 am after they x ray and put iodine into cath to be sure was in right place.  Next day foley cath in stomach fell out was no inflated, so I put it back in As best I could.  Later surgeon took me to radiology to replace tube with a permanent tube.  He numbed the area which hurt but was unable to locate the stomach hole so after 3 x and 2 notes in hospital no tube.  

Mouth has deteriorated further and magic mouthwash does little for tongue ulcers.  I finally did order some mugard which will come thur.  Hoping it will help.  Very frustrated and discouraged at this point.  only 1 and 1/2 weeks of rad so far and not having tolerable side effects.  having to take pain med to get thru it. 

PJ

Comments

  • lornal
    lornal Member Posts: 428
    #2
    Sorry to hear that

    Sorry to hear about your bad tube experience.  Hope they get something in there soon so you can get your hydration.

    I went Friday to get my tube replaced with a different size.  Mine won't stay tight and is making a big mess.  The doc had to dilate the throat first, but when he tried, my oxygen sats went down.  So, stuck with leaking tube - and can't eat or drink anything.

    The ENT and GI will work something out, I'm sure.

    You'll start feeling good again when the rads are over - It will take a while - but worth it!

  • jim and i
    jim and i Member Posts: 1,788 Member
    #3
    PJ I am so sorry to hear

    PJ I am so sorry to hear about all these problems with your peg. When Jim's came out the ER doc just replaced it in ER. I do not understand why your ER didn't just replace it instead of putting in a foley. Are they going to try something else? I pray they can as you need your nutrition and hydration.

    Debbie

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    That's the pits...

    usually the tube part is one of the easier parts of treatment.....There are many different types of PEG tubes, tho....and for you the kind that has a disk on the inside might be the ticket to get it in and keep it there.  They do cause cramping during the first 2 or 3 days....but they shouldn't fall out....hope they get this resolved for you soon.

    Don't worry about missing a rad treatment or two.....I missed 3 days in a row when the machine broke down....and there were no ill effects from it....actually it was good for my neck.  I hope the Mugard helps.....I don't know after the sores are already in and taken hold....Mugard stings quite a bit even without sores.....and it's not a cure, only a preventative. 

    I was reading something yesterday at the Oncologist's office about holding ice or very cold water in your mouth starting thirty minutes before chemo, during the treatment, and for 30 minutes after.....it said the blood restriction due to the cold helped keep mouth sores in check......it might not help what you have now, but for your next chemo it might keep more from coming, or for the healed ones from coming back.

    Keep running the words "one day at a time" through your head.....you only have to get through this day.....tomorrow will take care of itself.

    p

     

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    rough road

    PJ,

    I had a PEG fail right in the middle of treatments.  Mine failed in the sense that it hurt incredibly bad to use.  I had the type they snake down your throat and pull through from the outside.  The second one worked without further incident.

    For mouth sores I had Lidocaine gel to apply directly on the sores (in addition to the magic mouth wash).  It is very numbing.

    Keep being strong, work with your body, use whatever meds and help you can get.  If you feel better to stand on your head, do it.  As tired and beat as you feel, stay in the game and try your hardest to work the problems.  Once you conquer this first obstacles you will feel better, but keep your eye on the prize we want you “cancer free” .

    I am sorry you are miserable right now, but as you adjust to treatment side effects it should get better and before you know it you will be finished.

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    ....another thought on those

    mouth sores.  Get some L-Glutamine powder at the health food store.....you mix 2 or 3 tablespoons in a liter of water.  Some people have said it heals them.....for me, it was something liquid I could put in my mouth to curb the dryness without stinging.  You can think of it as another form of hydration :).

    p

  • hwt
    hwt Member Posts: 2,328 Member
    #7
    phrannie51 said:

    ....another thought on those

    mouth sores.  Get some L-Glutamine powder at the health food store.....you mix 2 or 3 tablespoons in a liter of water.  Some people have said it heals them.....for me, it was something liquid I could put in my mouth to curb the dryness without stinging.  You can think of it as another form of hydration :).

    p

    Tough ride

    Sorry you are having so many issues early on, hopefully, things will start to improve or the pain meds will help. 

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #8
    I'm sorry!

    I'm so sorry about all of this!  I had the same kind Matt did, but was so sick before getting it...I missed rads for an entire week.  It was ok and got me back on my feet to finish the treatments.  I hope you get some relief soon! 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #9
    PJ, i had 2 feeding tubes

    PJ, i had 2 feeding tubes fall out.  Finally after it fell out the second time, they left it out.  they tried to get it back in but it wouldn't go.  i lost weight for the next 2 months and got down to 115 (i need to b about 135 to 140) before i had an interest or was able to eat.  that's been a while now and i'm at 14.  with you still being in tx, u probably need yours more than i did.  i hope they take care of this and keep it from falling out again.  Saying prayers for you.

    God bless you,

    dj

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