RE: Greetings (and a question)

[Guest guest]

Welcome ,

Do you have IBD, that could account for some of the pain. I don't

know anything about ammonia and the intestines.

Dawn

>

> Hi all,

> I'm new. Diagnosed in November, I signed up with this group on

> Christmas. I've been reading everything voraciously, learning as

much

> as I can, and it has been great. Although there are heartbreaks,

this

> group is fantastic! It's almost like being part of a Capra

movie

> (It's a Wonderful Life). So thanks for that!

>

> I am curious to see if anyone is in a situation similar to mine,

> however. I have had several really bad cholangitis attacks (turning

> yellow, really bad itching, extreme fatigue, and white stools--not

just

> light, some were white). When I was finally diagnosed with PSC

(long

> story there) I did the basic research and figured I was probably

stage

> three with my liver (or worse). As it turns out, my biopsy came

back

> with very light liver damage--stage one. One thing I've discerned

from

> reading these posts is that everyone's path with PSC is a little

> different. But my situation does seem to be a little odd.

Obviously,

> infection has probably been the culprit, but are there any other

> factors I should be watching out for that could account for early

stage

> attacks like this? I have noted that I get a LOT of " gas pains " (on

my

> left side and other places) with these attacks, accompanied by the

> natural expulsion of said gasses. At this point, my GI suspects

it's

> just swallowing air, maybe because of the other pain. I'm not

> convinced, however. Can ammonia build up do this? Any thoughts?

>

> Anyway, I'm looking forward to being a part of this group,

hopefully

> for a good long time!

>

>

[Guest guest]

,

Welcome! Could your infections maybe be a result of a stricture in a bile duct? If that is the case maybe an ERCP with dilation would help. My main symptom throughout my psc journey was infections. My hep would perform ERCP's within about 6 weeks of each other with ballooning in the assumption that doing it in quick sequence would keep the ducts open longer. It must have worked because toward the end before tx my ERCP's were still about a year apart. HTH

Again welcome! You are in a great place for information and support from a wonderful group of people.

Blessings,

Barby - KS

UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 29 years , 5 sons, 2 daughters in law, 1 granddaughter, 1 grandson , granddaughter due 3/09 and 1 golden retriever

[Guest guest]

Hi ,

My experience was a little like yours, without the jaundice. I

have had repeated infections. They started in 2003 right after Christmas, and

hit every few months since then. I’d be just fine and in half an hour

would go to fevers of 102 or 103, chills, very sleepy, no appetite. But I’ve

never gotten jaundiced. Some nights my skin would itch terribly though, even

when I wasn’t sick. And I always had very dark circles under my eyes. I just

never looked well, regardless of whether I was running a fever or not.

I had a Roux-en-Y in 2005, which took care of the common bile

duct – they couldn’t even get in a stint, so replacing the duct was

the only option. But within 6 months I had more infections. Colangiograms showed

that the internal ducts were scarred closed too. I have a great interventional

radiologist, and he got a biliary drain tube in. I’ve had a couple of

small infections since – but with much lower fevers. But my hep dr says

it’s time to do a transplant anyway – the liver is shot.

So yes, everyone’s journey is different.

Nita

From:

[mailto: ] On Behalf

Of scotty73ohio

Sent: Sunday, January 18, 2009 4:25 PM

To:

Subject: Greetings (and a question)

Hi all,

I'm new. Diagnosed in November, I signed up with this group on

Christmas. I've been reading everything voraciously, learning as much

as I can, and it has been great. Although there are heartbreaks, this

group is fantastic! It's almost like being part of a Capra movie

(It's a Wonderful Life). So thanks for that!

I am curious to see if anyone is in a situation similar to mine,

however. I have had several really bad cholangitis attacks (turning

yellow, really bad itching, extreme fatigue, and white stools--not just

light, some were white). When I was finally diagnosed with PSC (long

story there) I did the basic research and figured I was probably stage

three with my liver (or worse). As it turns out, my biopsy came back

with very light liver damage--stage one. One thing I've discerned from

reading these posts is that everyone's path with PSC is a little

different. But my situation does seem to be a little odd. Obviously,

infection has probably been the culprit, but are there any other

factors I should be watching out for that could account for early stage

attacks like this? I have noted that I get a LOT of " gas pains " (on

my

left side and other places) with these attacks, accompanied by the

natural expulsion of said gasses. At this point, my GI suspects it's

just swallowing air, maybe because of the other pain. I'm not

convinced, however. Can ammonia build up do this? Any thoughts?

Anyway, I'm looking forward to being a part of this group, hopefully

for a good long time!