I am so frustrated with this DRAIN!

Discussion Board Forums General Discussion I am so frustrated with this DRAIN!

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    My husband Tom had a lot of leakage with his drain tube at the onset. One of the main things is to keep the site as clean and as dry as possible. Tom’s interventional radman who initially inserted the drain was concerned about the leakage because bile can do a number on the skin. After about 6 weeks, he went to a larger drain tube and added additional holes to the part of the drain tube that was in the liver. (I think he said the tube he now has in is a number 12 tube) Yes, it is a 12 gauge drain tube.

    Since then the only ‘drainage’ that we have is when I flush the tube (1 or 2 times a day) otherwise the site stays dry. Normally we flush it 1x a day unless he starts getting sludge in the bag, then we flush it 2x a day.

    Yes, changing the dressing is a chore, but I look at it this way, Tom is still here with me, and although he hates the drain bag (probably as much as you do) it’s a small price to pay to still have him here. I’m certain that your loved ones feel the same.

    As for the bile ruining clothes, all I can say is to invest in some white t-shirts. And if the bile gets on the t-shirt, bleach takes it out instantly! Pour bleach on the stain, the bile is gone, then wash the T shirt.

    Before we got tegadermfilm, we used depends as bandages. We cut pieces to go over the wound, with a slit in them for the tube, taped the edges good then taped it over the site with paper tape or what ever kind of tape you have. The plastic from the outside of the depends stopped the bile from leaking all over his clothes and all over the bed. (It worked!) And if you don’t have any depends, a baby diaper will do the same thing.

    Or see if you can get some Tegadermfilm. It’s expensive, but you put your gauze on, I use one 4×4 folded in half and half again under the tube up next to the stitches (bottom side of the tube) then take another 4×4, folded in half and in half again and place that over the top of the tube and stitches, making sure you cover the wound, then place the tegadermfilm over that. In your case, you may have to use more gauze unless you can convince your interventional radman to exchange the tube for a larger gauge tube, modified with more drain holes as they did in toms case. (Ask them to do that!)

    Tom has had the external drain tube since december and so far his doctors are very pleased with the look of the wound and at how clean the site is, no damage to the skin at all.

    Good luck Kristin. And I think you need to take that trip to Wisconsin to see Grandma. Where does she live?

    Go with God and KEEP KICKIN’ THAT cancer.



    Kristin…. I do remember a poster from the U.K, who went through a similar experience and it took almost a year for it to settle down, but eventually, she conquered it. I am wishing for you to go on fast track so that you can join your grandma on her special day.
    Hopefully someone can come up with an answer, soon.
    As always,
    best wishes are coming your way


    Kristin, we feel so bad for you. Teddy had an external drain bag 5 years ago
    and his leaked. What we don’t understand are the stitches. I sure would love to talk to you. we are going out to dinner but you could call me in the morning.
    If you e mail me I will e mail my number back to you. I really would like to talk to you about this drain.


    Oh Kirstin,

    I wish I had some answers for you, but unfortunately I don’t. I feel so badly for you. You don’t need all the pain and frustration. I am glad to hear you have gotten some relief of the symptoms but at what cost? It just doesm’t seem right that there is nothing that can be done and you should have to just learn to live with this situation. There has to be something that can be done. I am hoping that someone will pop in with some suggestions for you.

    I will be hoping something can be done and you will be able to get back here to Wisconsin to be with your Grandma and the rest of your family.

    Try to hang in there. Come back here and complain all you want. Hopefully venting will help a little and we are all here ready and willing to listen.

    Take care Kirstin.

    Love & Hugs,


    After six weeks and four different drains from two hospitals, my external drain is STILL a mess.

    The hole is still leaking like mad (I have to use 5 gauze pads plus a surgical dressing, and change the whole nasty mess multiple times a day), there are days when I have agonizing, stinging pain every time I move (like yesterday), and the stitches keep slipping into and out of the hole. I can hardly leave the house. I’ve wrecked half my clothes with bile stains. I am so so so sick of this! And the last time I went to have it checked, 2 weeks ago, the doctor said that was “the best they could do” and I’d just have to live with it. Please tell me that isn’t true… At least that pain can’t be normal, can it? Even oxycodone doesn’t touch it.

    All I want in this world is to go up to Wisconsin and visit my family and see my Grandma (who is 100, and the dearest person in the world to me) before I start chemo. But the way things are, I can’t even go to the grocery store.

    Has anyone had trouble this bad with an external drain and finally had it work OK? How did they fix it? The bile is draining into the bag just fine and I’ve gotten a lot of relief from my symptoms, but the rest of it is just misery.

    Thanks for listening! I hope you’re all having a better day.


Viewing 5 posts - 16 through 20 (of 20 total)
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