Topic: external bile drainage bag

I have an external bile drainage bag and I keep getting bile infections. The last time (just 2 weeks home from the hospital tomorrow) I got sepsis.  Horrible.  I came home with IV antibiotics.  Finished them 5 days ago and my bile is stinky again.  This usually means infection starting.  Has anyone heard of taking antibiotics all the time?   I hate this bag. I hate this smell.  I have been in the hospital 5 times since April. 
Anyone ?
Thanks so much.
Jan47

Re: external bile drainage bag

Hi Jan,
Your story is so familiar to me.  My husband, Gary, had a bile leak for over a year and went through all the infections, odors, leaks and antibiotics that you are experiencing.  His leak never sealed itself ( a first for his surgeon at Duke) and Gary ended up having it repaired surgically after they had tried everything else.  That did the trick for him, but in your case it's likely the leak will heal eventually.  I know it's annoying, stinky, messy and a constanrt source of worry about infection, but it is one of the complications that can happen with CC.  Hang in there...you'll ride it out. 
Thoughts and prayers go out to you, Elaine

Live each day to the fullest

Re: external bile drainage bag

Thanks so much.  I will try to hang in. 
Bless you,
Jan47

Re: external bile drainage bag

I hope things are improving for you, Jan.

Best wishes
Julia

"Time may be a great healer, but it's a lousy beautician."

Re: external bile drainage bag

Jan,
External drains cause so many of us problems. You might want to talk to your doctor about the smell. Get on those antibiotics before the infection can take hold.

If you ever want to really complain about your drain, talk to either me or Kristin. I think we hate them more than anyone else. In my case, I was allergic to the plastic...can I say ouchy and itchy! Kristin is like your case, slow to heal. MAny of have empathy for you right now. Hang in there.

And to your question...some people stay on antibiotics during chemo so I bet you could do the same while the drain heals.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: external bile drainage bag

I have finally persuaded myself that "my bile bag is my friend." The bile drain is a big nuisance, but with it, I feel like a human being... without it, I would quickly become a sick, miserable, mess and tormented by horrific itching (the state I was in for 2 months before I finally got the drain and bag.) So, it's not wonderful, but I'm so much better off. It took about 6 weeks for my drain to settle down and behave.

Contrary to what others have said, my bile always stinks-- something like rotten rubber bands. Changing the bag helps but the new one starts stinking after a couple weeks too. (Could that be what's happening in your case?) My sweet husband and lovely friends insist that they can't smell it, but I can!

Hang in there! Things will get better.

Kristin

Peace, hope, and healing to all!