feeding tube issue

Dkatsmeow
Dkatsmeow Member Posts: 37
edited June 2021 in General Cancer
My email is now Dkatsmeow@outlook.com. Got my 2nd tube replacement 2 days ago. A balloon. It leaks at base horribly. Go thru a surgical pad every hour. Am permanently on feeding tube. Doc says stoma needs to "heal". Any suggestions. New shirt every 2 hrs. Getting annoying.

Comments

  • Carool
    Carool Member Posts: 787
    edited May 2021
    I haven’t had this situation, but I wanted to wish you luck.
  • legaljen1969
    legaljen1969 Member Posts: 763
    edited May 2021
    Oh my goodness, that definitely sounds like it's pretty disruptive to your life. I have not had to deal with that issue either, but at the very least your doctor needs to give you some better tips on how to prevent the leakage or better manage coping until it "heals." I would think maybe there is something they could do to minimize or stop that much leakage.
  • legaljen1969
    legaljen1969 Member Posts: 763
    edited May 2021
    I would say you need to document how much leakage you have- take pictures if necessary to show the doctor how much it is leaking. Like is your shirt soaked within two hours or it leaks enough to make a small spot every couple of hours? Is the leakage increasing? Decreasing? Stabilized, but the process is going on longer than you thought it would? I would document the amount and appearance of all leakage- consistency, is there odor?

    I am so sorry you have to deal with this. My friend's son had a feeding tube for a long time and he started having problems with stomach acid burning his skin (he was a little guy and we found out later that his mother was feeding him things that did not work well for his body and was not caring for the tube properly, but that's a whole different matter). I only tell that story because it may be important to know what is leaking from your stoma.
  • meyati
    meyati Member Posts: 308
    You can modify panty shields

    meanwhile---------
    Have you tried a nursing pad? You could cut a hole in the center-of course cut to the center to get it to fit around your feeding tube. The pads are to keep breast milk from turning your top from becoming a soggy mess. They are cheap, washible, at Amazon, Walmart, and one can make their own---adding a link for a DIY site remember to squish all of the letter together.

    https: // a home made from scratch . com /sewing -reusable -breast -pads
  • faithfully58
    faithfully58 Member Posts: 27
    edited June 2021
    I'm Greg's wife he to had leaking feeding tube..His whole shirt would be wet.So much so he lost 14lbs.before he had to go to ER.Where they put the wrong size tube in so we were back a week later.Where he was put in the hospital to have another surgery to replace it.It eventually got replaced and didn't leak.But while in the hospital for 23 days he got pneumonia and blood clots.He was sent home with a collapsed lung and hospice.Where he passed away Oct.17th..
  • legaljen1969
    legaljen1969 Member Posts: 763
    edited June 2021
    Faithfully, I am so glad to see you posting a little bit. I am sure this is a hard place to come back to at times, but we all care about you so very much. You were such a wonderful support to Greg and, by extension, to us. I had no idea about all of what he was going through at the end. That was rough for you both, no doubt. I hope you all had kind and compassionate people for the hospice journey.

    I have a friend who recently left his job at Boys & Girls Clubs to go work for a local hospice organization. He said it is the most rewarding job he has ever had- being able to offer some bit of comfort and compassion to patients and their loved ones. He says he receives more than he gives with every patient.

    God bless you. Please do come back from time to time and let us know how you are doing.

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