My husband Tom had 'external drain' tubes for most of his 4 year fight with CC. After his original CC resection, he had a JP drain tube coming out of his lower belly as the liver had developed a bile leak. And some of the bile had leaked into a cavity behind his liver so he had another tube coming out of his side. At that point I had to do nothing with either of those tubes, except measure and record how much bile his body was putting into those drains. (and of course, smell it for foul odor which would mean an infection).. He had those two drains for 7 1/2 months.
Then we jump months forward when he started turning jaundiced. He had another tumor that involved the hepatic artery and his bilirubin level was over 24K (over 24 but it's measured in the thousands) They tried to get an internal stent in at that time to relieve the pressure on the liver and to rid his body of the excess bile to lessen his bright yellow color. His urine was also dark brown as his kidneys were doing their part to help rid the body of the excess bile. They tried about 4 times to get an internal stent in using a different technique each time and were unsucessful, so the only route to go was an external drain.
I was onboard with that and so was he. His interventional radiologist never gave up trying to get the sent internalized. Each time a tube exchange was done, he looked for a path to get a stent inside and each time it was a no go. Even Mayo clinic tried twice and they could not do it.
With Toms' eternal drain, I flushed it daily, cleaned the site with a good antiseptic cleaner, even using a q-tip to clean out the 'hole' where the tube entered his body, then flushing everthing with the antiseptic cleaner, even the tube. I would then put a 4x4 gauze pad under the tube and another one (folded to size of course) over the top of the tube and then cover the entire site with a TEGADERM FILM! This is the best as far as bandages go. In the two years that he had that drain tube, he could take showers without fear that his bandage would get wet. I always used gloves when ever I touched his drain, or flushed it, or cleaned it. It just became a part of my daily routine.
External drains can also become clogged and then the CC patient can get a rather severe infection in the liver. This happend to Tom about 4 times in two years. They used to change out his tube ONLY after an infection. I am a good talker and talked his interventional radiologist to talk to his PCP and discuss doing the tube exchanges MORE frequently, we started at every 8 weeks, infection resulted. Moved to every 6 weeks, infection resulted. Moved to every 4 weeks and NO MORE infections! YEAH! So each and every month until Tom passed on 11/20/2011 he had a tube exchange. Never once during all the time that he lived with that tube did his skin break down at the site. A little red at the site of the stitches when they were first put in. Other than that, nothing. His doc and the nurses were amazed and kept telling me that whatever I was doing to "Keep it up" and that when they saw Tom's name on the schedule they knew that when they took his bandage off, his skin was going to be an nice as a baby's butt!
There were time's when Tom complained about the tube. He hated the first two - three days after a tube exchange cause the stitches hurt until the skin healed. He hated having the bag but realized that in the big scheme of things it did help him to look normal, rather than a glow in the dark yellow. He learned to pin it in place so that the tube could be pinned higher up on his shirt so the tube didn't show when we went in public. Eventually we talked the doc into shortening the tube a bit.
His doc that did the tube exchanges for Tom had done them so many times that he'd always tease that they were going to get the tube exchang down to less than 4 minutes. It generally took him about 5 min from the time he inserted the wire until the new tube was in place. And he also added more drain holes to the length of the tube that was inside the body. This also helped to keep the tube from plugging up so quickly. That is also why it is so important to flush the tube daily, to keep those holes open so that the bile comes out the tube into the bag, rather than to be leaking along the outside of the tube onto the bandage. If this happens - call the doc right away as it means the tube is plugged! You can try first flushing it 2x a day, but if it still leaks onto the bandage, INSIST on a tube exchange.
That too happened with Tom and is another indication that the external drain is plugged. And bile is VERY caustic to the skin so it's important that the site be cleaned every day, and that bandage is clean and dry with minimal 'stuff' on the bandage. The only day that I did not change the bandage was the day that the tube exchange was done. But I hated doing it the next day cause the bandage they put on was so yucky w/blood, etc.
Tegadern film is very expensive. We were lucky in the respect that Tom was a Veteran and got all of his medical supplies from the VA. They sent 4x4 gauze pads, 10CC flushes, Tegaderm film, gloves, etc. I had to buy Q tips and the antiseptic wash. Band Aid brand about $4 - $5 a bottle. At first I used the antiseptic that they give you when you get your ears pierced and that also worked well, but the bottles are so small that I switched to the Band Aid brand of antiseptic wash and that worked even better. I bought 6 bottles once when Walgreens was clearancing it out!
I hope this info is helpful, feel free to ask me any questions about tubes/exchanges/ flushing/cleaning the site, etc. I'm kinda like the resident expert on external tubes and bile bags. Even when Tom was inpatient, he'd tell the nurses right out...."No one touches my drain except my wife" and all the nurses were so extremely interested they asked if they could watch (and learn) while I did it. Many nurses had never even had a patient with a liver bile drain bag.
Go with God and hang in there!