Bile duct leak

[ginabeewell]

I’m about eight weeks from my liver resection - and several procedures to install drains and stents - and I still have 35-40 ml of fluid coming out of my drain each day.

The nurse told me today they believe that means the stents didn’t work, and my output seems to be steady vs decreasing. I can tell the surgeon (Kingham) is getting worried.

I don’t feel too bad - still a little short of breath but no fever or nausea. I might have a little swelling in my belly, but it’s subtle enough that my husband and I have debated whether or not it’s even there.

I just did some googling and found research papers about people with “intractable” bile duct leaking with reference to not healing after 8 weeks and high volume of output, but no idea if I fit the mold or my output is enough to be considered a real problem. Of course the paper references situations like this as being precursors to liver failure. : (

Has anyone experienced anything like this?

[CRguy]

Has anyone experienced anything like this?

Hey Gina
I am a lung and rectosigmoid guy with no direct hepatobiliary experience as a patient.
BUTT …. I am a vet with hepatobiliary experience as the surgeon

some talking points for the docs, maybe …
the discharge would seem low volume to me,
have they checked it for composition ( exudate versus transudate kind of thing ?)
some drains and implants will themselves, produce a fluid discharge as the body wants to try to get them out !
No infection = GOOD

Bile itself can be very irritating and would likely cause a severe intraperitoneal reaction unless VERY localized and walled off
( bile peritonitis is characterized by pain, abdominal swelling and fever )

So I guess the question is :
are they 100% sure it is a bile duct leak ? and is it bile leaking ?
are any stents/drains involved with causing pinpoint leaks somewhere ?
Could these issues be caused by a combination of other things ?
What are the blood tests looking like ? “clotting proteins” ( from the liver ) may be low due to surgeries and recovery ?

Just throwing some thoughts out here for you, because EVERYTHING needs to be on the table for discussion
while you are still having issues.

Best wishes for getting things under control

Harmony
CRguy

[martd]

I have a bile duct leaking right now, been leaking for about a year and half now. With mine it's pretty much contained in a cavity where the right side of my liver was. I didn't have drains after my liver surgery but there was a growing fluid collection that showed on scans every 3 months. It seemed to be growing 2 to 3 centimeters every scan and leveled off and stopped growing about 8 centimeters. Last August I had a drain put in it was draining about 90ml a day so they tried a stent for a few weeks, when it was removed they tested and it was still leaking. So now we're going to continue watching it. The doc thinks it might dry up still from the stent procedure, something about when the stent was put in they had to cut through a bile sphincter in the small intestine? I'm probably describing that wrong, but anyway the thought is with the relief in pressure from that it might dry up. So as of now they're not worried and just going to watch it. I'm feeling good and everything seems ok. My resection was done by one of the liver transplant teams at Mayo and they are doing my surveillance also, so I'm feeling fairly confident it's going to be ok.

[ginabeewell]

Thank you so much for weighing in with so much expertise! Totally appreciate it!

some talking points for the docs, maybe …
the discharge would seem low volume to me,
have they checked it for composition ( exudate versus transudate kind of thing ?)

They did initially but have not for a while. Instead they are monitoring color - how much yellow vs how much pink, that kind of thing. The past few days I have been at 25-30 ml, so maybe it's finally going down a bit??

some drains and implants will themselves, produce a fluid discharge as the body wants to try to get them out !
No infection = GOOD

This rings true to me. My instinct weeks ago was, "just get these drains out of me and I'll stop leaking." But of course the surgeon did not agree with my "instinct!"

Bile itself can be very irritating and would likely cause a severe intraperitoneal reaction unless VERY localized and walled off
( bile peritonitis is characterized by pain, abdominal swelling and fever )

That's interesting - I really have almost NO irritation happening. I don't feel sick, have a fever, anything like that. Wouldn't I feel worse if I had a bile duct leak?!

So I guess the question is :
are they 100% sure it is a bile duct leak ? and is it bile leaking ?
are any stents/drains involved with causing pinpoint leaks somewhere ?
Could these issues be caused by a combination of other things ?
What are the blood tests looking like ? “clotting proteins” ( from the liver ) may be low due to surgeries and recovery ?

CRguy

These are great questions. The leaks started before they put in the drain/stents so I don't think they would be to blame, but they don't seem to be helping. Yesterday's blood test looked fine / consistent with past results. A little low on red blood cell counts / anemia, but that's been happening since surgery. No major swings. I got a note back from MSK to say that Dr Kingham reviewed my labs and "isn't concerned" so that's good I guess?

Meantime I have been praying for spontaneous healing so I don't have to worry about this any more!!

[juliej]

My instinct weeks ago was, "just get these drains out of me and I'll stop leaking." But of course the surgeon did not agree with my "instinct!"

Meantime I have been praying for spontaneous healing so I don't have to worry about this any more!!

Gina, I completely empathize with you!!! I had a bile duct leak that just wouldn't stop. Weirdly (loooong story) it was after one of my lung surgeries. They placed a drain and waited for it to "resolve." It was putting out a significant amount of yellow bile (really sticky stuff!) and I made the mistake of checking out bile duct leaks online too. On one hand, I found articles about people who had lived for years with a bile leak/drainage bag. That didn't exactly reassure me! Then I read the real medical consequences about what it does to your health over the long term. That didn't help either.

I was sent to Dr. Karen Brown at MSK who found the problem area (two blocked bile ducts) and opened them up. The plan was to place a stent if necessary, but she managed to open them completely during the procedure. I had to stay overnight in the hospital in case there was any bleeding afterward. I was released the next day in high hopes the problem was solved (picture me hopping, skippimg, and jumping my way down York Avenue!).

BUT it took weeks and weeks and weeks for the output to slow down. It eventually did, a little at a time, and then suddenly (the last week) very quickly. My surgeon said he had faith it would heal itself eventually, but like your case, he became concerned as time went on. I wouldn't worry too much about what the nurse said. My output stayed consistent for a long time, then slightly went down, then went back to the old amount, and then finally (when I was tired, tired, tired of changing those stupid drainage bags), it started slowing down.

When it decides to do it, it will be quickly. My body was so ready to push that drain out of me, it actually shot out into the surgeon's hand when he removed it. Then I had a small bandage for a couple of days while it formed a scab. I was in the sleeping car of an Amtrak train (east coast to west coast in 5 days) when the scab fell off and I knew it was really, truly over.

This is just to let you know these things happen and they can resolve themselves after a little intervention. In the meantime, eat as healthy as you can to help your liver heal itself. I've been where you're at now, and it did get better. PM me if you have any questions.

F*cking bile leaks!!!

All best to you!
Juliej

[CRguy]

Hey Gina
I was planning to reply here ... BUTT as a lung thang guy
all I have to say is :
YOU got Juliej in the topic ... so you BE DOIN' GOOD !!!!

Juliej is the real deal = WORD !

Harmony sistas
On the Journey with you
CRguy

[ginabeewell]

Gina, I completely empathize with you!!! I had a bile duct leak that just wouldn't stop. Weirdly (loooong story) it was after one of my lung surgeries. They placed a drain and waited for it to "resolve." It was putting out a significant amount of yellow bile (really sticky stuff!) and I made the mistake of checking out bile duct leaks online too. On one hand, I found articles about people who had lived for years with a bile leak/drainage bag. That didn't exactly reassure me! Then I read the real medical consequences about what it does to your health over the long term. That didn't help either.

I was sent to Dr. Karen Brown at MSK who found the problem area (two blocked bile ducts) and opened them up. The plan was to place a stent if necessary, but she managed to open them completely during the procedure. I had to stay overnight in the hospital in case there was any bleeding afterward. I was released the next day in high hopes the problem was solved (picture me hopping, skippimg, and jumping my way down York Avenue!).

BUT it took weeks and weeks and weeks for the output to slow down. It eventually did, a little at a time, and then suddenly (the last week) very quickly. My surgeon said he had faith it would heal itself eventually, but like your case, he became concerned as time went on. I wouldn't worry too much about what the nurse said. My output stayed consistent for a long time, then slightly went down, then went back to the old amount, and then finally (when I was tired, tired, tired of changing those stupid drainage bags), it started slowing down.

When it decides to do it, it will be quickly. My body was so ready to push that drain out of me, it actually shot out into the surgeon's hand when he removed it. Then I had a small bandage for a couple of days while it formed a scab. I was in the sleeping car of an Amtrak train (east coast to west coast in 5 days) when the scab fell off and I knew it was really, truly over.

This is just to let you know these things happen and they can resolve themselves after a little intervention. In the meantime, eat as healthy as you can to help your liver heal itself. I've been where you're at now, and it did get better. PM me if you have any questions.

F*cking bile leaks!!!

All best to you!
Juliej

Thank you so much for sharing this. I think it helps to know that this kind of thing can happen and I’m not some oddball who is now at the edge of liver failure!

Like you, I’ve been up and down but lately have been consistent or down; this morning I think I was only about 25, after a few days of 30ish, after a few weeks of 40-50. My drain feels kind of achy the past day or so, but I can’t shake the feeling that it is a healing pain versus something getting worse. You know how you feel after a good workout - sore, but in a good way? Not exactly like that but kind of. Maybe the drain is bugging my insides more if things are drying up a bit?

Anyway my latest fun is that I seem to suddenly have restless leg syndrome. This can be brought on by low iron (which I have right now) or neuropathy. I’m trying to eat more red meat; in the meantime only Oxy seems to be able to soothe it, and even then only a little. It’s maddening and makes me a bad bed partner!

Trying to put it aside so we can have a few lovely days of Christmas celebration - we are keeping it low key and mostly done with wrapping / prep / etc. And after that: Istanbul!

[juliej]

Thank you so much for sharing this. I think it helps to know that this kind of thing can happen and I’m not some oddball who is now at the edge of liver failure!

Like you, I’ve been up and down but lately have been consistent or down; this morning I think I was only about 25, after a few days of 30ish, after a few weeks of 40-50. My drain feels kind of achy the past day or so, but I can’t shake the feeling that it is a healing pain versus something getting worse. You know how you feel after a good workout - sore, but in a good way? Not exactly like that but kind of. Maybe the drain is bugging my insides more if things are drying up a bit?

Anyway my latest fun is that I seem to suddenly have restless leg syndrome. This can be brought on by low iron (which I have right now) or neuropathy. I’m trying to eat more red meat; in the meantime only Oxy seems to be able to soothe it, and even then only a little. It’s maddening and makes me a bad bed partner!

Trying to put it aside so we can have a few lovely days of Christmas celebration - we are keeping it low key and mostly done with wrapping / prep / etc. And after that: Istanbul!

My drain got more achy the closer it got to drying up, so hopefully that's a good sign with yours too!

You might have them check your magnesium/potassium levels for the restless leg syndrome. I got low on potassium several times and needed an infusion. Plus you're losing fluid and salts with the bile drainage.

Instanbul!!! Please tell us all about it in an OT post --- photos, where you went, etc!

Juliej