Hello-

October 4, 2000

I have been a lurker around this group for a couple of weeks now, and

I thought this is a good time to introduce myself.

My name is Sandee, live in Michigan. I was diagnosed with PSC just

last July. I had a gall bladder attack - not incredibly painful, but

enough to know I needed to get seen. I had an incredibly miserable

time in the ER, but they pulled that offending stone out via ERCP.

One of the house officer/docs mentioned I had something called

sclerosing cholangitis at that time, but I really didn't think

anything of it. The couple of days I spent in the hospital, all sorts

of docs came to my bedside to lecture me on the need for my gall

bladder to come out. When I got home, I looked up PSC on the 'net.

There is a lot of scary stuff out there! When I saw the GI who did

the ERCP, he said it was much too dangerous to take out the

gallbladder. I found this frightening - I didn't want another ER

visit like the first. Got another doc who agreed with me about

getting the gallbladder out. He referred me to a surgeon, but I had a

cholangitis attack right before my appointment. IV antibiotics

inpatient, followed by oral at home for 2 days, then gallbladder

surgery. Happy me, she (surgeon) did it with laparoscopy - small

scar.

I have enjoyed reading the comments in this group; you all send the

message that there is plenty of life with PSC. I have two imprtant

questions:

1) Is there any difference between Actigall and Urso? (I'm on Urso.)

2) Someone posted about a cat and a bird. Did the bird live?

Sandee

October 4, 2000

HI Sandee,

Welcome to the group, but sorry you NEED to be here. I am 30 yrs old and was

dx with PCS in Jan 1999 via ERCP (had ERCP for what they thought was a

gallstone). Haven't had time to post much lately, and actually it is quite

late right now and I must go to bed. Just wanted to welcome you.

Dawn

October 4, 2000

Sandee--

Welcome to the group. Sorry that there is one more person diagnosed with

PSC. You will find this group very knowledgeable and caring -- you've

probably noticed that in the last couple of weeks. Hopefully since you were

just diagnosed there will be enough medical advances that you won't need a

transplant by the time your liver gets to that stage. Hopefully there will

be another treatment by then. I was on Actigall and don't know if there's a

diff between it and Urso, so I'll let someone who knows respond to that.

Where in Michigan are you from? My Mom's whole family lives in Saginaw.

Take Care.

Laurie, TX 5/5/00

Hello-

> I have been a lurker around this group for a couple of weeks now, and

> I thought this is a good time to introduce myself.

> My name is Sandee, live in Michigan. I was diagnosed with PSC just

> last July. I had a gall bladder attack - not incredibly painful, but

> enough to know I needed to get seen. I had an incredibly miserable

> time in the ER, but they pulled that offending stone out via ERCP.

> One of the house officer/docs mentioned I had something called

> sclerosing cholangitis at that time, but I really didn't think

> anything of it. The couple of days I spent in the hospital, all sorts

> of docs came to my bedside to lecture me on the need for my gall

> bladder to come out. When I got home, I looked up PSC on the 'net.

> There is a lot of scary stuff out there! When I saw the GI who did

> the ERCP, he said it was much too dangerous to take out the

> gallbladder. I found this frightening - I didn't want another ER

> visit like the first. Got another doc who agreed with me about

> getting the gallbladder out. He referred me to a surgeon, but I had a

> cholangitis attack right before my appointment. IV antibiotics

> inpatient, followed by oral at home for 2 days, then gallbladder

> surgery. Happy me, she (surgeon) did it with laparoscopy - small

> scar.

> I have enjoyed reading the comments in this group; you all send the

> message that there is plenty of life with PSC. I have two imprtant

> questions:

> 1) Is there any difference between Actigall and Urso? (I'm on Urso.)

> 2) Someone posted about a cat and a bird. Did the bird live?

> Sandee

>

October 4, 2000

Sandee,

Welcome to the group. So sorry to hear that we have another one that has been

dx with this. But to be dx with this disease and finding this group means you

will be able to get a lot of valuable information from the group. You will

also find us quiet caring and personal. Some of us have had the disease

anywhere from 1 year up to 10 or 15 years. We have a member that is a Dr. and

has had a transplant and some very knowledgeable med techs as well.

As far as the Urso and Actigall goes, I don't think there is much of a

difference. But I will let Aubrey or Tim handle that one.

Please tells us a few things about yourself. Where in Mich. do you live. I

have in-laws in Oscoda, just below Alpena.

Take care and again, glad you found us.

Larry, 51 years old, dx UC-95 dx PSC-96, Baltimore

October 5, 2000

Welcome Sandee

It sounds like you have been thru the wringer....but at least you have come

out feeling better and not having to worry about another gall bladder

attack....Those laparoscopic surgeries are great...I had on last Dec....for

female reasons...and it was alot easier than to recover from the larger

surgeries....had plenty of them....

I am here because my 17..18 next week...has PSC along with some other

auto-immune diseases....He was diagnosed when he was 9...

This group as you have already seen can be a big help...info and support...

Hope we talk again...

Luanne Ty's mom

October 5, 2000

Welcome Sandee,

There seem to have been several people who found out about their PSC while

having gallbladder stone problems. My husband Phil had a similar situation

except he didn't have a stone that was removed during his ERCP and it wasn't

pronounced that he had PSC in the calm manor yours was. The doctor came out

very animated " THIS IS TERRIBLE - IT'S WHAT I SUSPECTED ITS PRIMARY

SCLOROSING CHOLANGITIS " this was all while they were wheeling Phil away

screaming in pain because not knowing how severely his bile ducts were

constricted, they didn't sedate him enough and the die trying to go through

sent him into excruciating pain.

He too had his gallbladder removed once they were able to get the infections

cleared and also got an infection right before the surgery. He then went

almost a year before having another attack and it's been 6 months since that

episode. My husband Phil is on the transplant list at UCLA, due to the

infections he had that first few months.

I was wondering about the bird too.

I agree with you, one has to live life to the fullest inbetween attacks.

This group is informative and supportive hope you find it helpful.

Peg, wife of Phil(57), UC 30 yrs, dx PSC 12/98, listed 2/2000-status 3, live

in So. Calif.