Feeding tube questions

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ac
ac Member Posts: 88 Member
edited September 2011 in Head and Neck Cancer #1
Hi,

I know many people have been extolling the life saving virtues of the feeding tubes. But I generally like to view both sides of coin and also think it will help anyone no matter if they decided to get one or not. If you had a feeding tube, could you please answer these questions?

1. What type of feeding tube did you have (PEG/G/J) and when was it installed (pre or mid treatment)?

2. Was it installed by gastroenterologists (GI) or interventional radiologists (IR)? Does it make a difference who installs it?

3. Did you ever use it?

4. What complications did you have (if any)?

5. Any pain with day to day use, for example if you went to the bathroom with constipation or had to exert your abdominal muscles?

6. How many times did it get dislodged (if at all) and any pain associated with it?

7. Did you encounter any maintenance issues (for example it got clogged and what caused that) and how you overcame it?

Thanks very much for your help.

ac

Comments

  • jim and i
    jim and i Member Posts: 1,788 Member
    #2
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    1. Has a PEG before treatment

    2. IR, don't know who best the radiology oncologist ordered

    3. Used it One week into treatment because food had already started to taste really bad and had no appetite. Lost 40 lbs before treatment started.

    4. No complications

    5. no pain - doctor doesn't want you to strain even without PEG so took stool softner and prune juice.

    6. Never dislodged

    7. Clogged whenever did not flush right after unhooking from formula and occasionally.
    Formulas are sticky so keep flushed.
    Use carbonated beverages ie Coke, ginger ale in tube. Has to sit and bubble but will clear. then flush well with water.

    Good Luck
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
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    Answers
    1. PEG Tube. Installed almost one month prior to start of radiation.

    2. Installed by gastrointerologist.

    3. I started radiation on 4/6/09. I had to use it on 4/20/09. Starting that day, it was my exclusive means of both food and drink for a long time. Not able to e en drink for five months. Went with out food orally for nine months. Had my tube for 18 months. (I do not seem to be the average case though. My mouth side effects were very severe.)

    4. No complications with my tube at all.

    5. The only real pain was when it was installed. Day to day, it was uncomfortable at times. Like bending over to pick up something on the floor, I didn't pick up Nizzy while I had it. He is heavy and squirmy. Was afraid he'd hurt me, or get his foot caught on the tube. If I got hungry, or my stomach was empty and growling, that didn't feel very good. It would spasm, and that wasn't a pleasant feeling. I did best with regular timed feedings every four hours.

    6. Never got dislodged.

    7. Never got clogged. I even put things like baby food, prune juice, and Activia yogurt through it every day, never any issues. I had a bit of pink granulation tissue, which would bleed and be a little annoying. She just gave me cream to put on, and it would dry it up. Never had a problem in 18 months.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #4
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    FT Answers
    1) G-tube, installed a couple weeks before tx started

    2) A (regular) lead Surgeon at a Quad City Hospital installed it

    3) Used it exclusively for some 10-weeks, started at the end of week #1, mostly w/Jevity 2.0

    4) The plastic lip holding the ball seal at the top of the tube tore about a year after I got the PEG, but did not have to get a new PEG. By then I was only using it to flush/clean it to keep the path open

    5) No pain as the question asks. Only discomfort was in the abdominal entry area the first few days after it was installed

    6) Never got dislodged

    7) Did get clogged twice. Pouring Coca-Cola into it got it un-clogged. Just poured it in, and in less than a 1/2-hour the clog cleared

    kcass
  • buzz99
    buzz99 Member Posts: 404
    #5
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    Feeding Tube questions
    1. Installed pre treatment
    2. IR placed it
    3. Used it almost from day 1. Buzz quit eating after the first round of chemo, long before radiation started.
    4. First tube leaked and Buzz had skin breakdown around the tube. Changed to a silicon tube with no problems. He has had it for 1 year.
    5. No pain except when it was inserted. Buzz had severe muscle spasms for about 24 hours after.
    6. Never dislodged.
    7. Never clogged.

    Hope that helps. Karen
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
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    1. What type of feeding tube
    1. What type of feeding tube did you have (PEG/G/J) and when was it installed (pre or mid treatment)? PEG tube, rather than G or J. Knew to specify PEG, from reading here. Got it installed mid treatment, four weeks into eight weeks of radiation and chemo.

    2. Was it installed by gastroenterologists (GI) or interventional radiologists (IR)? Does it make a difference who installs it? Gastroenterologist, outpatient, wasn't even anesthetized to do it, they showed me how to use it before I left. Spent about 5 hours in outpatient to get it done, went home after, used it that night. No surgery needed. I know some folks who had a more complicated surgery to put in a G tube.

    3. Did you ever use it? Used it for all my food intake from that point. Sipped ice water and tepid green tea throughout the remainder of my treatment, but combined throat pain and nausea of chemo kept me from being able to eat enough by mouth. Never lost my swallow.

    4. What complications did you have (if any)? The incision appeared "red" a couple days after installation. Gastro doc put me on some antibiotic that was supposed to work best with skin infections. Made me hyper-photosensitive. This was a friday afternoon, following a radiation treatment. By the following Monday, my pre-existing radiation burns had worsened (with no treatments in the interim) to the point where I almost had third degree skin burns. I had to suspend radiation for a week for the burns to heal. They also suspended chemo for the week, to keep me in synch. I freaked out, convinced the gap in treatment would ruin everything, but it didn't. After a week of heavy 'biafine' ointment use, the burns cleared up nicely and treatment went on.

    5. Any pain with day to day use, for example if you went to the bathroom with constipation or had to exert your abdominal muscles? No pain. Pain in the ****, dealing with it in the shower, and keeping it tucked into my clothes. I was very grateful to have it. It became my friend.

    6. How many times did it get dislodged (if at all) and any pain associated with it? No dislodging. Mine was anchored in by a giant mushroom shaped flare at the end. It did get a few good yanks in the course of my using it, typically by my snagging it on things. Never dislodged, never even shifted. When it came time to remove it, it took such a giant yank, that I then understood why there was no chance of my ever removing it accidentally.

    7. Did you encounter any maintenance issues (for example it got clogged and what caused that) and how you overcame it? Never clogged. Stopper at the end wore out eventually, so they clipped off the old stopper and put a new one on. I really only had the thing for ten weeks or so, so not so much chance of anything breaking or needing replacement. Flushed it with water a few times a day, after every use. There was the time when I ate red jello, though. It backed up from my stomach into the tube, and momentarily freaked me out till I figured out what it was. A quick water flush solved that problem.

    The tube can be your friend. Mine saved my life when I needed it.

    Deb

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