Re: New Psc...

December 31, 2008

Glad you found us, but sorry you are here.

Dawn

>

> Hi all....I've been recently diagnosed with PSC...and maybe Crones

or

> UC... LUCKY ME!...The last two months have been a blur....Been

going

> through this for a year...long story....Maybe I've had it when my

old

> GI said I had " fatty liver " four years ago....Anyway....My new GI

> sent me to UCI medical center and they tried to get into my major

> papilla (but couldn't it, was closed up like Lehman bros!) Why

> couldn't they do it???...They didn't put me under with a general

> anesthesia, local only!... so I guess I fought like mother

protecting

> her young.... I went back to my GI and they quickly got me re-

> scheduled (apparently UCI is the best place to go around here

because

> the have a ERSP device with ultra sound at the end of it) I go back

> on the 26th of Jan...In the meantime I went back to my GI and under

> General ERSP... I had a very small stent but into my Major papilla

> (to let the bile flow)and a bunch of stuff has happened ever

since...

>

> The itching stopped (a good thing)

> I'm sore in my upper chest area

> No appetite

> Have had chills and fever along with nausea

> Dia-dodo with blood

> I'm tired a bunch

>

> I'm glad I had the ERCP because it stop the severe itching...now it

> only mild....but all this other stuff is this normal for PSCer? If

> so,... I'm sorry for us all, but I'm not one to back down from a

> challenge! Any ideas were to start?

>

> Don in San Clemente.

>

December 31, 2008

Glad you found us, but sorry you are here.

Dawn

>

> Hi all....I've been recently diagnosed with PSC...and maybe Crones

or

> UC... LUCKY ME!...The last two months have been a blur....Been

going

> through this for a year...long story....Maybe I've had it when my

old

> GI said I had " fatty liver " four years ago....Anyway....My new GI

> sent me to UCI medical center and they tried to get into my major

> papilla (but couldn't it, was closed up like Lehman bros!) Why

> couldn't they do it???...They didn't put me under with a general

> anesthesia, local only!... so I guess I fought like mother

protecting

> her young.... I went back to my GI and they quickly got me re-

> scheduled (apparently UCI is the best place to go around here

because

> the have a ERSP device with ultra sound at the end of it) I go back

> on the 26th of Jan...In the meantime I went back to my GI and under

> General ERSP... I had a very small stent but into my Major papilla

> (to let the bile flow)and a bunch of stuff has happened ever

since...

>

> The itching stopped (a good thing)

> I'm sore in my upper chest area

> No appetite

> Have had chills and fever along with nausea

> Dia-dodo with blood

> I'm tired a bunch

>

> I'm glad I had the ERCP because it stop the severe itching...now it

> only mild....but all this other stuff is this normal for PSCer? If

> so,... I'm sorry for us all, but I'm not one to back down from a

> challenge! Any ideas were to start?

>

> Don in San Clemente.

>

December 31, 2008

Hi Don,

Sorry to say that all of what you describe is par for the course. You get really tired and no appetite because your blood chemistry is all off with the enzymes. Same thing, i think, for the mental fog. You didn't mention that, but if you start to notice that you can't think as well as you used to - no worries. It's normal and reversable.Chills and fever are caused by pockets of infection in the liver. Sometimes they can put in a biliary drain tube to improve draining even further, but you docs would be the best judge of that.Blood in poop may be more a matter of inflammatory bowel disease that frequently goes hand in hand with this lovely little condition... But again, your doctor should know about it and all of the other symptoms you are experiencing.

Hope this helps,Anita

New Psc...

Hi all....I've been recently diagnosed with PSC...and maybe Crones or UC... LUCKY ME!...The last two months have been a blur....Been going through this for a year...long story....Maybe I've had it when my old GI said I had "fatty liver" four years ago....Anyway....My new GI sent me to UCI medical center and they tried to get into my major papilla (but couldn't it, was closed up like Lehman bros!) Why couldn't they do it???...They didn't put me under with a general anesthesia, local only!... so I guess I fought like mother protecting her young.... I went back to my GI and they quickly got me re-scheduled (apparently UCI is the best place to go around here because the have a ERSP device with ultra sound at the end of it) I go back on the 26th of Jan...In the meantime I went back to my GI and under General ERSP... I had a very small stent but into my Major papilla (to let the bile flow)and a bunch of stuff has happened ever since...The itching stopped (a good thing)I'm sore in my upper chest areaNo appetiteHave had chills and fever along with nausea Dia-dodo with blood I'm tired a bunchI'm glad I had the ERCP because it stop the severe itching...now it only mild....but all this other stuff is this normal for PSCer? If so,... I'm sorry for us all, but I'm not one to back down from a challenge! Any ideas were to start?Don in San Clemente.

December 31, 2008

Hi Don,

Sorry to say that all of what you describe is par for the course. You get really tired and no appetite because your blood chemistry is all off with the enzymes. Same thing, i think, for the mental fog. You didn't mention that, but if you start to notice that you can't think as well as you used to - no worries. It's normal and reversable.Chills and fever are caused by pockets of infection in the liver. Sometimes they can put in a biliary drain tube to improve draining even further, but you docs would be the best judge of that.Blood in poop may be more a matter of inflammatory bowel disease that frequently goes hand in hand with this lovely little condition... But again, your doctor should know about it and all of the other symptoms you are experiencing.

Hope this helps,Anita

New Psc...

Hi all....I've been recently diagnosed with PSC...and maybe Crones or UC... LUCKY ME!...The last two months have been a blur....Been going through this for a year...long story....Maybe I've had it when my old GI said I had "fatty liver" four years ago....Anyway....My new GI sent me to UCI medical center and they tried to get into my major papilla (but couldn't it, was closed up like Lehman bros!) Why couldn't they do it???...They didn't put me under with a general anesthesia, local only!... so I guess I fought like mother protecting her young.... I went back to my GI and they quickly got me re-scheduled (apparently UCI is the best place to go around here because the have a ERSP device with ultra sound at the end of it) I go back on the 26th of Jan...In the meantime I went back to my GI and under General ERSP... I had a very small stent but into my Major papilla (to let the bile flow)and a bunch of stuff has happened ever since...The itching stopped (a good thing)I'm sore in my upper chest areaNo appetiteHave had chills and fever along with nausea Dia-dodo with blood I'm tired a bunchI'm glad I had the ERCP because it stop the severe itching...now it only mild....but all this other stuff is this normal for PSCer? If so,... I'm sorry for us all, but I'm not one to back down from a challenge! Any ideas were to start?Don in San Clemente.

December 31, 2008

Hi Don,

Sorry to say that all of what you describe is par for the course. You get really tired and no appetite because your blood chemistry is all off with the enzymes. Same thing, i think, for the mental fog. You didn't mention that, but if you start to notice that you can't think as well as you used to - no worries. It's normal and reversable.Chills and fever are caused by pockets of infection in the liver. Sometimes they can put in a biliary drain tube to improve draining even further, but you docs would be the best judge of that.Blood in poop may be more a matter of inflammatory bowel disease that frequently goes hand in hand with this lovely little condition... But again, your doctor should know about it and all of the other symptoms you are experiencing.

Hope this helps,Anita

New Psc...

Hi all....I've been recently diagnosed with PSC...and maybe Crones or UC... LUCKY ME!...The last two months have been a blur....Been going through this for a year...long story....Maybe I've had it when my old GI said I had "fatty liver" four years ago....Anyway....My new GI sent me to UCI medical center and they tried to get into my major papilla (but couldn't it, was closed up like Lehman bros!) Why couldn't they do it???...They didn't put me under with a general anesthesia, local only!... so I guess I fought like mother protecting her young.... I went back to my GI and they quickly got me re-scheduled (apparently UCI is the best place to go around here because the have a ERSP device with ultra sound at the end of it) I go back on the 26th of Jan...In the meantime I went back to my GI and under General ERSP... I had a very small stent but into my Major papilla (to let the bile flow)and a bunch of stuff has happened ever since...The itching stopped (a good thing)I'm sore in my upper chest areaNo appetiteHave had chills and fever along with nausea Dia-dodo with blood I'm tired a bunchI'm glad I had the ERCP because it stop the severe itching...now it only mild....but all this other stuff is this normal for PSCer? If so,... I'm sorry for us all, but I'm not one to back down from a challenge! Any ideas were to start?Don in San Clemente.

December 31, 2008

Hi Don

Welcome to 2009 and to our group.

Sorry you have been diagnosed with PSC and maybe Crohn's disease.

I am sorry I am unable to help with your symptoms,I do hope that other

members of the group can help,

My only advice is to drink lots of water, it is important not to become

dehydrated.

from the bottom of the world in New Zealand.

>

> Hi all....I've been recently diagnosed with PSC...and maybe Crones or

December 31, 2008

Hi Don

Welcome to 2009 and to our group.

Sorry you have been diagnosed with PSC and maybe Crohn's disease.

I am sorry I am unable to help with your symptoms,I do hope that other

members of the group can help,

My only advice is to drink lots of water, it is important not to become

dehydrated.

from the bottom of the world in New Zealand.

>

> Hi all....I've been recently diagnosed with PSC...and maybe Crones or

December 31, 2008

Hi Don

Welcome to 2009 and to our group.

Sorry you have been diagnosed with PSC and maybe Crohn's disease.

I am sorry I am unable to help with your symptoms,I do hope that other

members of the group can help,

My only advice is to drink lots of water, it is important not to become

dehydrated.

from the bottom of the world in New Zealand.

>

> Hi all....I've been recently diagnosed with PSC...and maybe Crones or

December 31, 2008

Oh – one more thing… misdiagnosis is very common. First the GI

doctor thought I had autoimmune hepatitis, then the surgeon thought I had an

annular pancreas. It’s been about 10 years now, and I finally know what’s wrong

with me.

From:

[mailto: ] On Behalf

Of culsaws

Sent: Wednesday, December 31, 2008 3:46 PM

To:

Subject: New Psc...

Hi all....I've been recently diagnosed with

PSC...and maybe Crones or

UC... LUCKY ME!...The last two months have been a blur....Been going

through this for a year...long story....Maybe I've had it when my old

GI said I had " fatty liver " four years ago....Anyway....My new GI

sent me to UCI medical center and they tried to get into my major

papilla (but couldn't it, was closed up like Lehman bros!) Why

couldn't they do it???...They didn't put me under with a general

anesthesia, local only!... so I guess I fought like mother protecting

her young.... I went back to my GI and they quickly got me re-

scheduled (apparently UCI is the best place to go around here because

the have a ERSP device with ultra sound at the end of it) I go back

on the 26th of Jan...In the meantime I went back to my GI and under

General ERSP... I had a very small stent but into my Major papilla

(to let the bile flow)and a bunch of stuff has happened ever since...

The itching stopped (a good thing)

I'm sore in my upper chest area

No appetite

Have had chills and fever along with nausea

Dia-dodo with blood

I'm tired a bunch

I'm glad I had the ERCP because it stop the severe itching...now it

only mild....but all this other stuff is this normal for PSCer? If

so,... I'm sorry for us all, but I'm not one to back down from a

challenge! Any ideas were to start?

Don in San Clemente.

December 31, 2008