ERCP results with questions

[Guest guest]

Hello,

I had my first ERCP today and the results were not great. The

report states:

" The intrahepatic ducts were diffuse strictured throughout both

lobes. The only normal apperaing segment was the common bile duct

and only about 2-3. Balloon occlusion cholangiogram was done and

still was unable to fill the ducts. The common bile duct was less

than 2mm in size. 12 cm of the common bile duct was dilated and a

12cm stent was placed. " There is more to it but that is the jist of

it.

I will go back in 4 weeks to have the stent removed and try to

balloon dilate more area. I'm also being refered to a Hepatologist

and having a liver biopsy.

These results seem pretty bad to me, he showed me the pictures and

there was really no flow. My questions are, has anyone started off

with such bad strictures and gone for a long time without the need

for transplant or does it seem like I'll be needing one sooner than

later?

I also wondered if the staging of the disease is only done by Liver

biopsy or can you determine the stage by ERCP?

He also upped my dose of URSO to 1200mg a day and then we will up it

again in 4 weeks.

I'm really upset these results are so bad, and really want to know

others experiences with how bad their strictures were starting off.

Sorry this is so long, I'm feeling a little overwhelmed.

Thanks for any replies,

Sands

[Guest guest]

Hi ;

Sorry to hear about all of the strictures. I hope that if the common

bile duct can be kept open, and bile flow accelerated (e.g. with

urso), this may decrease the rate of disease progression for you.

As I recall, Arne had a very difficult stricture opened by ERCP

several years ago, and has not had problems since (Arne, please

correct me if my recollection is wrong!).

I don't think that staging can be done by ERCP, but requires biopsy

and histological examination of the samples. The staging is described

on p. 751 of this article:

LaRusso NF, Shneider BL, Black D, Gores GJ, SP, Doo E,

Hoofnagle JH 2006 Primary sclerosing cholangitis: summary of a

workshop. Hepatology 44: 746-764.

http://www.niddk.nih.gov/fund/other/PSCSept2006.pdf

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

[Guest guest]

is correct - My CBD was dilated in 2001; I've been asymptomatic since. My

first cholangitis episode was in 2000. The local (Minneapolis metro) hospital

was unable to access the stricture. They were (thankfully) reluctant to perform

a liver biopsy, as I was septic at the time. The 2nd episode was almost exactly

a year later. Mayo (Rochester) was able to dilate it with minimal problems.

Stent was removed two week later.

What I remember of the 2000 radiographs is the standard beaded, corkscrewed CBD

consistent with PSC. There was minimal involvement in the intrahepatic ducts

though. Having the CBD opened up has apparently helped me greatly. Hope it's

the same for you!

Arne

---- wrote:

=============

Hi ;

....As I recall, Arne had a very difficult stricture opened by ERCP

several years ago, and has not had problems since (Arne, please

correct me if my recollection is wrong!)...

[Guest guest]

is correct - My CBD was dilated in 2001; I've been asymptomatic since. My

first cholangitis episode was in 2000. The local (Minneapolis metro) hospital

was unable to access the stricture. They were (thankfully) reluctant to perform

a liver biopsy, as I was septic at the time. The 2nd episode was almost exactly

a year later. Mayo (Rochester) was able to dilate it with minimal problems.

Stent was removed two week later.

What I remember of the 2000 radiographs is the standard beaded, corkscrewed CBD

consistent with PSC. There was minimal involvement in the intrahepatic ducts

though. Having the CBD opened up has apparently helped me greatly. Hope it's

the same for you!

Arne

---- wrote:

=============

Hi ;

....As I recall, Arne had a very difficult stricture opened by ERCP

several years ago, and has not had problems since (Arne, please

correct me if my recollection is wrong!)...

[Guest guest]

Hi ,

I hope the pain you reported in your second post resolves soon. If it is

pancreatitis, it will

soon declare itself. After ERCPs where my endoscopist dilates or places a stent,

he admits

the patient overnight and won't allow them to eat till the next day. Regarding

the first

question, about your ERCP report, don't despair. Things can look bad and yet

take a turn

for the better. Two years ago, I was told I'd get sick very soon, but instead,

my liver

function improved, becoming normal for the first time in 15 years.

I had a stricture that my endoscopist could not get dye through on two tries,

the second

with a Spy Scope. He referred me to hepatobiliary surgery, but I was still

feeling fine and

my LFTs were only slightly elevated. PTC (where they attempt to inject dye and

drain the

ducts via tubes going through the ribcage) also failed. Since surgery was a bad

risk

without a " map " , they told me to come back when I got sick. There must have been

some

drainage or I'd have been jaundiced. It was then, two years ago, I joined this

group and

learned about fish oil from . I added that to my high-dose urso (30

mg/kg/day) and my LFTs dropped to normal. A subsequent ERCP with a new edition

of the

Spy Scope was successful in opening the stricture, and showed normal biopsies of

the

duct lining. The damage was done to my left lobe, which atrophied, but so far

the right

compensates well and I still feel fine.

Wishing you the best,

Martha (MA)

UC, 1979 PSC 1992, still asymptomatic

>

> Hello,

> I had my first ERCP today and the results were not great. The

> report states:

[Guest guest]

Hi ,

I'm sorry to hear about your diagnosis. Here is some info that may be

helpful.

I'm new to the group and to PSC (diagnosed and joined this group in Nov

2007). I had a similar situation with my smaller ducts and the CBD. I

have diffuse strictures throughout the smaller ducts (as my liver

surgeon said " They are shot. " ) but he told me (with no guarantee) that

it would be a while before a transplant was necessary. The CDB had a

mass in it. I had a stent placed via ERCP, but ultimately they removed

the entire CBD through a procedure called a hepaticojejunostomy.

Basically, they removed (resected) the CBD and tied the ducts leading

to the CBD into my small intestine. The important thing is for the

bile to flow out of your liver successfully. Everyone can react

differently to PSC and I'm not saying this is the approach. However, I

hope it helps give you some perspective on what is possible. I am four

weeks post-surgery now, and back at work. I am on 1.2 g of URSO as

well.

I hope your next visit with the doctor goes well.

Take Care,

Severin

********

US/PSC 11/07

>

> Hello,

> I had my first ERCP today and the results were not great. The

> report states:

> I'm really upset these results are so bad, and really want to know

> others experiences with how bad their strictures were starting off.

> Sorry this is so long, I'm feeling a little overwhelmed.

> Thanks for any replies,

> Sands

>

[Guest guest]

,

My first cholangitis attack was triggered by a 100% occlusion of my CBD

in 2004. At the time they were unable to clear it or stent it via ERCP

but managed to " come in the back door " via a transhepatic percutaneous

biliary drainage and knock the sludge or stone loose.

That episode got me listed for transplant (I had been asymptomatic

since '00) and I still battle the occasional cholangitis attack, but

I'm living a mostly normal life. Since diagnosis I've celebrated nine

birthdays and anniversaries, the birth of a third child, and a new job

and will be completing my MBA in May. Just don't let the disease

define you.

Peace,

Bill Wise

PSC '00, Listed Tx '04