Feeding tube scare

debbieg5
debbieg5 Member Posts: 167
edited March 2014 in Head and Neck Cancer #1
Late Saturday night, I brought Ken his final meds for the evening in the syringe. He pulled up his shirt and went to get the end of the tube pulled up. When he pulls it up, I see this brown, rubber piece. For a moment, I thought it was a rubber band for your hair and I was wondering how that got mixed up under his shirt. Then we both looked at each other and realized that it was the INSIDE end of the feeding tube. We looked down at his abdomen and saw an empty hole. then we looked at each other again and we both had the same look... holy $h!t. (Ken's tube is not to just help out with getting extra calories; it is his only way of consuming nutrition, liquids and meds. He cannot take anything by mouth.) He got up and started trying to push the tube back in there again. It went up inside him but we couldn't be sure where. So we spent Sunday morning/afternoon at the ER. They did an xray and determined that it was indeed back in his stomach. Whew!!

But all this made me start thinking....is the feeding tube supposed to be "anchored" inside the stomach with sutures or something? What exactly holds it in? He has lost a lot of weight since it was put in and I guess the surrounding tissue is not as firm or tight as it was before. I guess we need to talk to the doctor to see if anything has to be done to keep this from happening again. The ER doctors and nurses were of no help in any of this. They just suggested putting some gauze pads and tape around it to help secure it.

Just wondering if any of you on the board knew about these things.
Debbie

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    There are 2-3 different kinds
    Mine was held in place by rubber bumpers on either side of the flesh. The bumpers are about quarter size and shaped like a doughnut with the inside of the doughnut hole holding the feding tube. It's a friction fit on either side. Picture two doughnuts on a paper towel roll. Between the two doughnuts picture a piece of paper with a hole cut out the size of the towel roll. That is the skin. The bumpers hold the tube in place by pressure and friction only and are made to be adjustable back and forth. Seems like your assestment of why it came out is correct. Try pulling up on the tube until you feel it snug up against the abdomen. Then rotate the outside bumber down snuggly. You want a little bit of play here or else the skin gets rubbed really raw. By all means go see the doctor who put it in. I had to go back twice for adjustments.
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #3
    FEEDING TUBE OUT
    Sounds like my tube. I accidentally pulled mine out getting up out of a chair. I went to my Interventional Radiology Clinic the very same day and they were able to manually push it back in under the direction of the x ray scope. Mine was originally sutured to the skin just by the hole. I now tape it to me each day that I clean it, and have had no issues ever since.

    Hope this helps

    Mike
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #4
    Wow.
    So sorry you had such a scare. My feeding tube was anchored inside by a large mushroom-shaped flare at the end of the tube. Kept it completely in place. In fact, when I had it removed, it took one heck of a long slow pull to get it out. eeeeek.

    If this is Ken's only means of receiving nutrition, you might want to follow up with a Gastroenterologist specialist on the subject. There are a number of new models of tubes that have either a mushroom, or a balloon, or some other thing on the iside to firmly anchor it in place.

    It is my understanding that as long as it is re-inserted quickly, the tube will go back into place. If you wait a few hours, it won't. So, perhaps a Gastro doc could simply and quickly insert a new tube through the existing hole, and then inflate it to anchor it in place.

    When they thought my tube was wearing out, they showed me a new one that they figured they could install as I described above. The cap on my tube broke. They ended up simply cutting off the end of the tube and attaching a new cap.

    Good luck. Please follow up with this. It will reduce a lot of worries.

    Deb
  • debbieg5
    debbieg5 Member Posts: 167
    #5
    tube designs
    I'm not sure if his had the "donut" mechanism or not. It looked like the piece that came out was a pointed rubber piece with little, round nodules on it. Maybe that was supposed to provide the needed friction to keep it in place.
    I am remembering now that he had an incident a few months ago while he was feeding. He uses the gravity bag with a long tube attached. The phone rang and he forgot that he was attached and accidentally stepped on the tube when standing up. It did not come all the way out then but it was very loose....slid in and out real easily. Maybe he dislodged a more permanent connection at that time and then things are so loose now that it just slid out.

    Seeing as how this is going to be in for a long time (perhaps permanently) we had better have it looked at.
    Thanks everyone.
    Debbie
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #6
    debbieg5 said:

    tube designs
    I'm not sure if his had the "donut" mechanism or not. It looked like the piece that came out was a pointed rubber piece with little, round nodules on it. Maybe that was supposed to provide the needed friction to keep it in place.
    I am remembering now that he had an incident a few months ago while he was feeding. He uses the gravity bag with a long tube attached. The phone rang and he forgot that he was attached and accidentally stepped on the tube when standing up. It did not come all the way out then but it was very loose....slid in and out real easily. Maybe he dislodged a more permanent connection at that time and then things are so loose now that it just slid out.

    Seeing as how this is going to be in for a long time (perhaps permanently) we had better have it looked at.
    Thanks everyone.
    Debbie

    tube
    I had mine for four years and it fell out three times. Mine was designed with an internal balloon as its anchor, and eventually the solution inserted into the balloon evaporates or leaks -- for whatever reason it disappears. As indicated elsewhere, if you get to the ER pronto they can insert a temporary replacement to keep the hole open, while you also make an appt with GastroMan or ENTMan to get another 'permanent' replacement.

    While you are at it, if you have not yet been advised of such, the 'hole' is a wound and should be treated as such. You (or him) should make an effort to clean it every day with hydrogen peroxide and occasionally even with an antifungal ointment or some such (check with doc about best way to provide continued maintenance.

    Take care,

    Joe
  • Mikki332
    Mikki332 Member Posts: 49
    #7
    debbieg5 said:

    tube designs
    I'm not sure if his had the "donut" mechanism or not. It looked like the piece that came out was a pointed rubber piece with little, round nodules on it. Maybe that was supposed to provide the needed friction to keep it in place.
    I am remembering now that he had an incident a few months ago while he was feeding. He uses the gravity bag with a long tube attached. The phone rang and he forgot that he was attached and accidentally stepped on the tube when standing up. It did not come all the way out then but it was very loose....slid in and out real easily. Maybe he dislodged a more permanent connection at that time and then things are so loose now that it just slid out.

    Seeing as how this is going to be in for a long time (perhaps permanently) we had better have it looked at.
    Thanks everyone.
    Debbie

    Same scare here....
    Debbie....
    My husband is also on a tube for all nutrition and meds. It has a balloon inside (it was put in surgically since they had to suture his stomach to the chest wall...it rode too high). Anyway, he came out with 2 sutures to hold it in for 2 weeks. He kept complaining that it felt loose, and didn't have the stitches removed for almost a month (when they became infected). Five days after the stitches came out, he woke up without a tube; it fell out. We already had an appt. with the surgeon that morning to look at the infection, so we went in early. However, we don't know how long it was out in the night, and we live an hour away from the docs....by the time we got there, the original one couldn't be replaced. They were able to put in a smaller one, though. As with you, we were just told to use gauze (which we had been doing, including tape and a "wrap" to hold it in place). I guess they can deflate after a while, and weight loss can also be an issue. I'm glad that your husband was able to have it put back in....it's not like you need any more stress, right?
    Mikki
  • debbieg5
    debbieg5 Member Posts: 167
    #8
    debbieg5 said:

    tube designs
    I'm not sure if his had the "donut" mechanism or not. It looked like the piece that came out was a pointed rubber piece with little, round nodules on it. Maybe that was supposed to provide the needed friction to keep it in place.
    I am remembering now that he had an incident a few months ago while he was feeding. He uses the gravity bag with a long tube attached. The phone rang and he forgot that he was attached and accidentally stepped on the tube when standing up. It did not come all the way out then but it was very loose....slid in and out real easily. Maybe he dislodged a more permanent connection at that time and then things are so loose now that it just slid out.

    Seeing as how this is going to be in for a long time (perhaps permanently) we had better have it looked at.
    Thanks everyone.
    Debbie

    agh.....fell out again
    Well, I'm writing this from the waiting room of Intervention Radiology. We already had to come to Georgetown today to get bloodwork done in prep for chemo (possibly tomorrow) and have a visit with our ENT. I got Ken set up with his feeding this morning and went back downstairs to get my own breakfast. Then I started hearing this banging noise. Couldn't figure out at first what it was, then realized it was Ken trying to get my attention (he has no voice box). I ran up the stairs to see what was so urgent and there he was holding the tube in his hand again. So we both got ready as quick as possible and came up to Georgetown. I called the ENT on the way and left a message about what had happened to see if he could get something in the works. After we got here, he took a quick look and called IR to tell them that he was sending us down.
    The doc said he should be able to re-insert the tube without sedating him since we got here so soon after it happened. They are hoping to do it with local numbing. Ken's type of tube is called a "pig tail" and that's just what it looks like. there is supposed to be a string in there that keeps the tube in a curled position so that it doesn't come out. But I guess the string is gone and the "curl" is coming loose. The doc said it is normal to replace them every 3 or 4 months. I guess when we had it put in, we didn't plan on having it this long.
    Ken feels like everything that can go wrong does. He is in such a black hole mentally. If I didn't have to stay busy keeping the household together, I would be in the same place.
  • ratface
    ratface Member Posts: 1,337 Member
    #9
    debbieg5 said:

    agh.....fell out again
    Well, I'm writing this from the waiting room of Intervention Radiology. We already had to come to Georgetown today to get bloodwork done in prep for chemo (possibly tomorrow) and have a visit with our ENT. I got Ken set up with his feeding this morning and went back downstairs to get my own breakfast. Then I started hearing this banging noise. Couldn't figure out at first what it was, then realized it was Ken trying to get my attention (he has no voice box). I ran up the stairs to see what was so urgent and there he was holding the tube in his hand again. So we both got ready as quick as possible and came up to Georgetown. I called the ENT on the way and left a message about what had happened to see if he could get something in the works. After we got here, he took a quick look and called IR to tell them that he was sending us down.
    The doc said he should be able to re-insert the tube without sedating him since we got here so soon after it happened. They are hoping to do it with local numbing. Ken's type of tube is called a "pig tail" and that's just what it looks like. there is supposed to be a string in there that keeps the tube in a curled position so that it doesn't come out. But I guess the string is gone and the "curl" is coming loose. The doc said it is normal to replace them every 3 or 4 months. I guess when we had it put in, we didn't plan on having it this long.
    Ken feels like everything that can go wrong does. He is in such a black hole mentally. If I didn't have to stay busy keeping the household together, I would be in the same place.

    It drove me insane also
    I had such trouble with mine that it really frustrated me. Several trips back and forth to get it right and then trying to fight cancer at the same time can be overwelming. On some days the pain at the tube site was worse than the neck. happy is the day it is gone, hang in there. As a side note I started wrapping my torso with a wide Ace bandage to avoid further calamities.
  • rozaroo
    rozaroo Member Posts: 665
    #10
    ratface said:

    It drove me insane also
    I had such trouble with mine that it really frustrated me. Several trips back and forth to get it right and then trying to fight cancer at the same time can be overwelming. On some days the pain at the tube site was worse than the neck. happy is the day it is gone, hang in there. As a side note I started wrapping my torso with a wide Ace bandage to avoid further calamities.

    Tube
    So sorry & as if you need this. Mine was in so tight my Dr couldn't get it out on the first tug. Second tug it popped out. No pain. I was happy about that part. I sure hope they got it
    in right this time. I truly feel for you both!
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #11
    rozaroo said:

    Tube
    So sorry & as if you need this. Mine was in so tight my Dr couldn't get it out on the first tug. Second tug it popped out. No pain. I was happy about that part. I sure hope they got it
    in right this time. I truly feel for you both!

    tube
    Mine was like Deb's- a big mushroom inside the stomach, which measured 15/16" in diameter. Not a problem with it coming out- wasn't all that easy for the Surgeon to even yank out. Kinda wonder why they would even use a tube that'd come out that easy.

    kcass
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #12
    Kent Cass said:

    tube
    Mine was like Deb's- a big mushroom inside the stomach, which measured 15/16" in diameter. Not a problem with it coming out- wasn't all that easy for the Surgeon to even yank out. Kinda wonder why they would even use a tube that'd come out that easy.

    kcass

    eeek
    Everytime I read this is makes me sick to my stomach. I was always petrified that I was going to get my tube stuck on something or the dog was going to rip it out by accident since he is always velcroed to me. I had a nettin that went around mr belly to keep it from dangling. I was much happier when they switched me from the tube to my mickey-button. its low profile, and there is no tube to get caught on stuff. It's even invisible under clothing.
  • debbieg5
    debbieg5 Member Posts: 167
    #13
    debbieg5 said:

    agh.....fell out again
    Well, I'm writing this from the waiting room of Intervention Radiology. We already had to come to Georgetown today to get bloodwork done in prep for chemo (possibly tomorrow) and have a visit with our ENT. I got Ken set up with his feeding this morning and went back downstairs to get my own breakfast. Then I started hearing this banging noise. Couldn't figure out at first what it was, then realized it was Ken trying to get my attention (he has no voice box). I ran up the stairs to see what was so urgent and there he was holding the tube in his hand again. So we both got ready as quick as possible and came up to Georgetown. I called the ENT on the way and left a message about what had happened to see if he could get something in the works. After we got here, he took a quick look and called IR to tell them that he was sending us down.
    The doc said he should be able to re-insert the tube without sedating him since we got here so soon after it happened. They are hoping to do it with local numbing. Ken's type of tube is called a "pig tail" and that's just what it looks like. there is supposed to be a string in there that keeps the tube in a curled position so that it doesn't come out. But I guess the string is gone and the "curl" is coming loose. The doc said it is normal to replace them every 3 or 4 months. I guess when we had it put in, we didn't plan on having it this long.
    Ken feels like everything that can go wrong does. He is in such a black hole mentally. If I didn't have to stay busy keeping the household together, I would be in the same place.

    OK now
    the new tube seems to be doing well. the doc said he had to push pretty hard to get it back in....a little more time and we would have been SOL. Ken was sort of sore the next day but he has so many other issues, that was the least of his worries.

    Just a side note....the secretary at our church has a daughter with many severe medical issues. She has had a feeding tube almost her entire life (I think she's 5 or 6). Anyway, the mom is required to replace her feeding tube HERSELF every 3 or 4 months. So I guess we're lucky that they don't make us all do it ourselves.

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