I am so frustrated with this DRAIN!

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.

Kristin:

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 4x4 folded in half and half again under the tube up next to the stitches (bottom side of the tube) then take another 4x4, 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.

Margaret

Kristen,
  I have not had time to post the past month or so but have been reading about your trials. All I can say is that if this was happening to me or my Tom I would be raising holy ****. Seriously, I do not think this is "normal" or some thing you just have to "live" with at all! There have been some pretty appalling stories on here lately about what people are being put through and yours is one of them. Tom had many external drains during the first 6 months he was diagnosed and they NEVER leaked, not a bit. Pain is not normal either. He had some pain when he had two drains placed for brachytherapy but that was because it layed too close to a nerve. That was just a temporary drain for a few weeks. I really, really think you need to go to an expert at these procedures. I don't know how big the hospital is where you are treated but the bigger the better as far as I'm concerned- when it comes to this. The more practice they have and expert they are the better! I can't imagine what you're going through and am very sorry to hear all of this when you've been doing so well for so long. I hope you can get this taken care of as soon as possible. I can't even imagine a Dr. telling us Tom would just have to live with bile leaking all over him all the time. No way!! Is it leaking inside you too?!! It must be just running out of your liver. That's absolutely crazy. Please go to a University Hospital or somewhere else where they can take care of this for you.  Sorry for being overbearing but it really, really isn't normal!!!  Take care, Mary

Kristin:

I'm very happy that you have decided to make the trip to Wisconsin to see your grandma!  That is awesome.  I agree, you can be 'leaky' here or there, it makes no difference, it is what it is!

Tom is about 6ft, 117 lbs.  Very skinny.  But with the bile leaking out of the hole the doctor decided to go with the larger 12 guage tube.  The extra holes (that the doctor modified himself) just allows for more bile to go through the tube and not follow down the outside of the tube which means bile leaking out of the wound in the side.  Since they have done that Tom only has leakage when flushing the tube. 

I don't know what your 'size' would have to do with the larger drain tube, but when they suggested it for Tom we were all for it, if it meant not having bile leak all over everything. 

Remember the bleach for getting bile out of clothes.  I discovered that bleach would work one day by draining his bile into the sink and adding bleach (just to see what would happen) and wonder of wonders, it turned the bile into clear liquid!  Therefore I knew that bleach would take the bile stains out of sheets, blankets, clothes!  No more bile stains in this house.

The home-made bandages made out of depends or diapers work well too.  They absorb more than gauze pads!  Sometimes you just have to be inventive! 

As a side note, it may be just a matter of time too for the 'path' that the drain tube takes to start to close up on the drain tube.  (that never happened in Tom's case) If/when it happens you will notice less and less leakage.  (I'm hoping it happens soon, for your sake)

Go luck, keep us posted and let me know how the new bandages work.  Remember to build a slot in them so that the drain tube has a place to go.  I always cut a large square then cut one slot down to about the center, taped all the edges, place that over the wound with the tube in the slot.  Then tape it up!

Go with God and KEEP KICKIN' THAT cancer.

Margaret

Kristin,
I feel so bad for you. The drain pain is something you cant describe if you never had it. I travelled with the drain to visit a friend in Copenhagen (a 4 1/2 hour train ride). I suggest bringing loads of medicine, several pillows so you can prop yourself in different ways on the journey, a bottle of antiseptic gel, and a good understanding of how to live within your limitations. For me that meant not going to the antique district in Copenhagen and taking taxis (I am the cheapest person around and spending  money on taxis hurts. But I needed them so that was that.) It meant not lifting the baby (which also was hard not to do) and all sorts of other things.  I remember having the constant struggle of what I wanted to do versus what I could do given the drain and its pain. But I managed and you will too.

Have a wonderful time.

Kris

Kristin, looks like we will be in Milwaukee for 2 weeks about the 7th of August.
Wish you were there at the same time and we could pull Darla in and maybe Margaret.

This post is for Beth O.  Beth, actually bile should have almost no smell.  If the bile is starting to smell, that means an infection is starting.  Tom had an external stent for 7 1/2 months after his initial resection and one of the things we had to watch out for was if the bile started to smell.  (never happened) if anything the bile should have a slightly sweet smell.  This past month with Tom's now 6 month old external drain, the bile started to smell and it was putrid, and the first thing the doc did was a tube exchange and put him on Levaqin (antibotic) right away.  Now the bile is back to it's sweet smelling self.

Margaret

Kristin - if you email me your home address, I have some 'extra long' tegaderm film that I am willing to mail to you to try it out over your bandages!  The VA (Veterans Administration) sent about 10 packages of this oversized Tegaderm Film and we have not used it nor do we plan to cause they finally got the correct size sent to us (and we have plenty)!  You could cut this oversized film into three pieces or just cut in half and use it over the drain site.  This would work well over the 'depends' bandages or over the gauze.

I know it is very expensive and your insurance may not even cover it for you, but this did not cost us anything, so pop me an email.  My email address is 77rusticacres@bayland.net

And please also let me know when you will be in Wisconsin.  I would love to meet you, Darla, Lainy and Teddy when / if you are all in Wisconsin.  Milwaukee is about 1 1/2 hours from home, so I have no problem taking a road trip. We have been there so often in the past two years that I can just put my car on autopilot and it would find the way!

And if Tom is extra special nice, I'd even bring him along .... he would love to meet Teddy!

Go with God,
Margaret

I sure hope we can work this out.  It will be great if we can all get together.