Catheter installed but bilirubin keeps rising

Michael:

Hi, this is Margaret and I’m considered by many to be the ‘tube’ expert. My husband Tom has had an external drain tube to control his high bilirubin levels since December ’09, and previous to that he had a JP drain and an extra drain because he’d developed a pocket of bile behind his liver (which was infected) and his liver was leaking bile from the cut side of the liver after his resection.

What I’ve learned during this course is:
1) Flush the drain one time per day with a 10ml 0.9% Sodium Chlorie flush

The way I do this is put gloves on(vinyl exam gloves) to uncap the drain, swab it with an alcohol swab, get the air out of the flush and attach the flush to the drain, and slowly push the solution into the drain tube. Then I take the flush off and toss it and let the liquid (flush and bile) drain onto some kleenix. I swab the cap with an alcohol swab to ensure it is clean. Then swab the end of the drain and put the cap back on.

2) Take off the old bandage and the old gauze pads. I then use a Band Aid Antiseptic Wash on a Q-tip and clean the site where the tube enters the body. It sometimes take 2 -3 Q-tips to ensure that the site (hole) where the tube enters the body is clean. Then I hold a kleenix against Tom’s side and squirt the entire area including the hole with the antiseptic wash and the blue part of the tube as well. With the same kleenix I then wipe down the entire area.

3) Rebandage the site. I use 4×4 gauze pads. There are two in a package. I take one and fold it in half, then fold it into thirds. I place that under the tube and position the tube where I want it to lay. I take the other gauze pad and fold that in half, then fold one end over to cover the top of the wound and partially cover the other folded gauze (so none of the wound is showing. Tom holds it in place with one finger. Then I open a Tegaderm Film (made by 3m) 4×4 3/4 inch size and place that over the bandage.

The nice thing about the tegaderm film is that the skin does not break down at all. It is easy to apply once you get the hang of it. Tom can shower and his bandage does not get wet. The film does not make his skin sore at all. We have been using the Tegaderm film on his site for almost two years now.

This is my routine on a daily basis and he has had very few infections since I started this process. One month after a tube exchange his doctor said “No need to flush it every day, you can switch to every other day. I did that an within 2 weeks he was in the hospital with a severe infection in the liver and had to have an emergency tube exchange and spent 4 weeks on antibotics. Now I’ve gone back to the every day flush and change and so far (knock on wood) no infections! And the doc’s and nurses are AMAZED at how healthy the skin is around the site. Bile, as you may know is very tough on the skin and can cause it to break down rapidly.

Tom has a size 12 tube and his doctor modifies it by adding extra holes so that the bile has more places to get into the tube. Without that modification it tends to plug up very quickly. The reason for the daily flushing is to keep those holes open so that the bile does not fill the holes and block them.

Tom’s bilirubin levels at his highest point was 26,900, most recently he’s been at about 4,000 to 6,000 but it took a jump up to 10,500 at his last blood work. His color is still looking good and he’s NEVER had any itching with his bilirubin levels so he is one of the lucky ones. His Alk Phosphatase was 867 and one of the chemo nurses was concerned until I told her that for the past year that number was around 958 and prior to his surgery it was as high as 1958, so the 867 was actually pretty good for him!

Things that can cause the bili level to go up. A recent tube exchange, the tube being plugged or not in the correct position, an infection in the liver, any kind of cold,flu, etc other than the normal way you feel.

If your doc is not having you flush the tube, I think this is something that you should discuss! You can also ask him/her to add extra holes in the tube like my hubby’s doc does. And also they can switch to a size 12 tube (which is what Tom has had for the past 2 years as the smaller ones just plugged up right away) And since his doc has started adding more holes, it’s been great. We also started watching the time frame between tube exchanges. Anyone with a long term tube going into their body is prone to infections and they can be nasty ones and the infection can kill you quicker than the cancer!

At first they were doing tube exchanges only when he got an infection. Then I talked to his team of doctors and said I wanted to try doing the tube exchange BEFORE he got an infection, so they scheduled them every 2 months. He still got an infection. So I talked them into every 6 weeks and he still got an infection…so after much prodding from my end we went to a every 4 week cycle and since they started doing that he has only had one infection – so now he is on the schedule every 4 weeks for a tube exchange.

I hope this information is helpful to you. Feel free to ask any other questions and if I can assist I will be happy to share my knowledge with you!

Go with God and KEEP KICKIN’ THAT cancer.

Margaret

Dear Michael,

My Dad suffered from a bacterial blood infection too after a stent change. IV antibiotics soon kicked it into touch. He too suffered from stomach pains and had problems with bowel movements, we don’t know if the IV antibiotics added to this. They prescribed movicol but this made my Dad worse (he did have a colostomy bag from when he had bowel cancer). Like Marion said fluid intake is really important and my Dad learnt what foods were easier to digest which also helped. I remember Dads stomach feeling bruised after his infection but this only lasted a few days, and a good nights rest in your own bed works wonders too.

So glad also that your bilirubin level has dropped, 20 to 10 is fantastic!!

Also my Dad was put on a permanent low dose of ciprofloxin (sp) antibiotics to help keep further infections at bay. This seemed to work well for him.

Best wishes

Andrea

Michael, I live about 5 minutes from Chandler AZ and we still have lots of horses out here!!! Good news about the Bilirubin but those infections are the pits! When Teddy’s temp would start climbing and he got the chills, I knew what was coming and took him right in. If you keep itching, we used to get a cream called Sarna (Walgreen’s/CVS) and it really worked good. Hope you get to go home real soon and recoop really fast from this bump in the road!

Michael,

Sending lots of best wishes your way. The cc journey always seems like a rollecoaster ride or 2 steps forward 3 steps back BUT like Mustangmort said you are one tough dude. xx

@ Marion, thank you for your kind words. When Dad was jaundiced I searched the net looking for all sorts of advice and the tomato and lemon juice were always mentioned. I think they are supposed to help the bile flow better and make it less sticky, which is what you want when you have stents/drains. Hope you are ok xx

walkingthepass…To experience immediate relief is amazing. Please, do start a Alternative thread whenever you are ready to do so. This is the kind of information people are looking for.
I am wishing for continued success coming your way.
All my best,
Marion