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Hello All,

For those who have had a PTC, are there typical bile drainage volumes

that you came to expect?

I'm in the range of 2800 ml per day, when I read that typical bile

outputs for a healthy person is in the range of 400-800 ml per day.

Although that's the first full day of having this drain. I'm wondering

if that amount will reduce with time.

Are there negative effects to draining too much bile?

Thanks ...

Micahel - 45

PSC, Crohns 2000

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Although possibly unpleasant, you may be interested in reading message 47169 and

threads (reproduced below).

Arne

- RE: Steve,Tim,BarbUK,Ron

Before I made the decision to, I didn’t know you could either. And my Doctors

certainly didn’t know you could. But, as I said, the alternative was having an

NG tube hanging out of my nose and “looped over my ear†(my Doctor’s exact

words for what to do with the tube when I was done emptying the bile into the

tube), and I just didn’t want to do that. I figured that if it was ok to get

it into my stomach through an NG tube, than it shouldn’t be any problem

getting it there by drinking it, and that there had to be a way to make it

palatable enough to drink it. Turned out not to be half as bad as some of the

stuff I got fed during Fraternity pledging. Getting the bile back into my system

was the only way to keep me alive long enough for them to figure out how to

reconnect the liver to the jejeunum, so yes, it did what it was supposed to.

As for the possibility that you might have to do it some day…I don’t think

that has a high probability. I’ve never heard of anyone else doing it, and it

only worked in my case because by the time they diagnosed my PSC, although the

Common Bile Duct was completely occluded, about half of the liver was still

unaffected.

Not my preferred after dinner beverage, either, but you do what you gotta do.

Steve R

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>Whoa....before you start drinking your bile...bile is excreted into

the duodenum and is never in the stomach. It is pretty corrosive

stuff.

- your case sounds eerily similar to my brothers. His CBD

was completely obstructed and had a PTC for 5 months. His bile

output was large and although I can't give you an exact amount, he

emptied his bag 4-5 times a day even once at night. I would guess he

was in the range of 2000 ml/day.

Biggest risk with heavy bile drainage is dehydration. In a well

person, the liquid in the bile is reabsorbed in the intestines and

the remaining solids are excreted in feces (the dark color). You

need to replace that volume of liquid that you are empting out of

your bag each day by drinking more.

As I recall even though your duct seemed obstructed you were still

getting bile to your intestines as you could tell by the color. I

would imagine you will reach the point where all is going into the

bag. You then might experience some problems digesting fat and they

will be seen in your stool.

People can go on indefinitely with a PTC and all their bile draining

to the bag and still live an active life.

By the way, when they did surgery to get the CCA out of my brother,

they found none. What looks like CCA and acts like CCA is not always

CCA, sometimes it is just PSC. I am hoping for the same results for

you!!!!

Judy

>

> Hello All,

>

> For those who have had a PTC, are there typical bile drainage

volumes

> that you came to expect?

>

> I'm in the range of 2800 ml per day, when I read that typical bile

> outputs for a healthy person is in the range of 400-800 ml per day.

> Although that's the first full day of having this drain. I'm

wondering

> if that amount will reduce with time.

>

> Are there negative effects to draining too much bile?

>

>

>

> Thanks ...

>

>

>

> Micahel - 45

>

> PSC, Crohns 2000

>

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Judy,

Thanks for sharing your brothers story. I'll start to increase my

water and Gatorade intake just for the fluids.

As far as the PTC drain, it just hurts when I breathe deep or burp or

hiccup or laugh. It feels like a knife going in my side. I hope to

get rid of this ASAP. I know that means the CBD has to be open or

the bile needs to be going into the gut somehow, like Roux En Y (HJ).

Regarding the CCA; I like happy endings like your brothers. Thanks

for the hope. Please pray for a diagnosis of no cancer in me.

Thanks Judy ... :)

- 45

PSC, Crohns 2000

> >Whoa....before you start drinking your bile...bile is excreted

into

> the duodenum and is never in the stomach. It is pretty corrosive

> stuff.

>

> - your case sounds eerily similar to my brothers. His CBD

> was completely obstructed and had a PTC for 5 months. His bile

> output was large and although I can't give you an exact amount, he

> emptied his bag 4-5 times a day even once at night. I would guess

he

> was in the range of 2000 ml/day.

>

> Biggest risk with heavy bile drainage is dehydration. In a well

> person, the liquid in the bile is reabsorbed in the intestines and

> the remaining solids are excreted in feces (the dark color). You

> need to replace that volume of liquid that you are empting out of

> your bag each day by drinking more.

>

> As I recall even though your duct seemed obstructed you were still

> getting bile to your intestines as you could tell by the color. I

> would imagine you will reach the point where all is going into the

> bag. You then might experience some problems digesting fat and

they

> will be seen in your stool.

>

> People can go on indefinitely with a PTC and all their bile

draining

> to the bag and still live an active life.

>

> By the way, when they did surgery to get the CCA out of my brother,

> they found none. What looks like CCA and acts like CCA is not

always

> CCA, sometimes it is just PSC. I am hoping for the same results

for

> you!!!!

>

> Judy

> >

> > Hello All,

> >

> > For those who have had a PTC, are there typical bile drainage

> volumes

> > that you came to expect?

> >

> > I'm in the range of 2800 ml per day, when I read that typical bile

> > outputs for a healthy person is in the range of 400-800 ml per

day.

> > Although that's the first full day of having this drain. I'm

> wondering

> > if that amount will reduce with time.

> >

> > Are there negative effects to draining too much bile?

> >

> >

> >

> > Thanks ...

> >

> >

> >

> > Micahel - 45

> >

> > PSC, Crohns 2000

> >

>

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