New to the site. Diagnosed two years ago. Looking for info

[Guest guest]

I was diagnosed with PSC over two years ago when I had my

gallbladder removed. I had an ERCP as my GI suspected I had stones.

Well no stones, but found PSC. Also had a liver biopsy. My LFTs were

elevated but everyone attributed that to the gallbladder. (Since my

gallbladder was removed my LFTs have been normal). My GI mentioned

that the Mayo Clinic was doing research with PSC and he suggested I

contact them. I started to do some research on PSC on the Internet

and came away very scared. Most of the info was very negative and

really didn't offer anything encouraging. I finally came across an

article about the Mayo Clinic and various clinincal trials they were

doing. I contacted the Mayo in ville FL and have been dealing

with them since. I am working with a great group of people to

monitor the disease. So far so good.

As I said earlier since my gallbladder was removed my LFTs have been

normal. I have not experienced any of the issues that come along

with PSC. While the doctors at Mayo do a great job in telling me

(based on where I am now) my prognosis is very good, no one knows

what will happen tomorrow. I have not meet anyone else with PSC and

have recently come across this site. I have done some looking around

on the site and there does seem to be a great deal of info.

In the back of my mind I am always questiong is today the day I

start to experience problems. I always ask the same questions to the

Doctors when I see them. I was diagnosed two years ago and I am 46.

Does that mean I'm going down hill from here? I'm fine now but what

about 6 months from now?

Can anyone share some of the experiences they've had with PSC? If

your LFTs were normal did the disease progress? How long did it

take? Am I looking at a liver transplant later in life? Poor qualtiy

of life later on? The Doctors have tried to answer these questions

for me but I'd like to hear from people who have actual experience.

Thanks for listening and hope to hear from someone.

Take care

[Guest guest]

:

PSC is different for everybody. I was diagnosed in 2001 at age 38. I have had

no problems related to my liver. I have had problems with Crohn's but not a

lot, or a constant thing. I take lots of medication (Urso, Asacol, Rythmol and

Imuran). I hate all the medication but I take it. I watch my diet and try to

treat my liver and body right (no alcohol, smoking, etc). I live a normal life.

I have a full-time, very stressful job at a Hospital. I am going to school

part-time to become a registered nurse and I am single with a 17 year old

daughter at home. Life is good. When illness strikes, you get through it.

When you are well, you enjoy every minute.

I have read all the articles about PSC. I was scared to death and planning for

the end of the death that I thought was right around the corner. I got really

tired of that. I don't search the internet anymore. I watch the postings here

and I depend on my specialist a lot but I don't let PSC consume my life. That

is how I choose to handle this. That may not be right for everyone but it is

for me.

There are really great people on this site and they are so wonderful about

welcoming people and answering questions. I searched for a while trying to find

a support group. I passed several up because I couldn't seem to find one that

was not all doom and gloom. I finally found the right one for me here and I am

very grateful.

Good luck to you.

in Texas

>>> " pscnomore " 10/2/2007 6:12 AM >>>

I was diagnosed with PSC over two years ago when I had my

gallbladder removed. I had an ERCP as my GI suspected I had stones.

Well no stones, but found PSC. Also had a liver biopsy. My LFTs were

elevated but everyone attributed that to the gallbladder. (Since my

gallbladder was removed my LFTs have been normal). My GI mentioned

that the Mayo Clinic was doing research with PSC and he suggested I

contact them. I started to do some research on PSC on the Internet

and came away very scared. Most of the info was very negative and

really didn't offer anything encouraging. I finally came across an

article about the Mayo Clinic and various clinincal trials they were

doing. I contacted the Mayo in ville FL and have been dealing

with them since. I am working with a great group of people to

monitor the disease. So far so good.

As I said earlier since my gallbladder was removed my LFTs have been

normal. I have not experienced any of the issues that come along

with PSC. While the doctors at Mayo do a great job in telling me

(based on where I am now) my prognosis is very good, no one knows

what will happen tomorrow. I have not meet anyone else with PSC and

have recently come across this site. I have done some looking around

on the site and there does seem to be a great deal of info.

In the back of my mind I am always questiong is today the day I

start to experience problems. I always ask the same questions to the

Doctors when I see them. I was diagnosed two years ago and I am 46.

Does that mean I'm going down hill from here? I'm fine now but what

about 6 months from now?

Can anyone share some of the experiences they've had with PSC? If

your LFTs were normal did the disease progress? How long did it

take? Am I looking at a liver transplant later in life? Poor qualtiy

of life later on? The Doctors have tried to answer these questions

for me but I'd like to hear from people who have actual experience.

Thanks for listening and hope to hear from someone.

Take care

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[Guest guest]

Hi ,

Thanks for the info. Good luck with school!

Take care

[Guest guest]

Micheal,

I recently joined the PSC-support group (June 2007). I was diagnosed with PSC back in 1989 when I became quite sick and they had to remove a lot my bile ducts (outside the liver) which they replaced with a section of my bowels. They also removed my gall bladder an part of my panaceas.

In 1991 I transferred up to Edmonton (it turned out to be only for a year) and so got myself a new family doctor. She was a fairly young and new doctor and was alarmed by my liver enzyme reading. She referred me to a specialist at the University of Alberta Hospital. The specialist wasn't nearly as alarmed by my LFT numbers, but added me to a research project he was running. The research involved low dosage chemotherapy (only on weekends). At first the numbers appeared good, but the pills made me feel lousy on the weekends and caused a toxic reaction.

For the most part I've my liver has done fairly well since diagnoses then. My liver enzyme tests were starting to rise dramatically in the late 1990's, but a treatment with CIPRO brought those numbers down and taking URSO, which I hadn't taken before then, kept the numbers down. Since 2004 I have also been taking warfarin to thin my blood after a couple of DVTs. I had thought it wasn't related to the PSC, but from the PSC support group I've found out it is related.

I have not had many of the symptoms mentioned in the PSC support group. PSC is different in everyone, but you might be spared of all or some of the symptoms meantioned in this group.Ian (51) PSC 89

I was diagnosed with PSC over two years ago when I had my gallbladder removed. I had an ERCP as my GI suspected I had stones. Well no stones, but found PSC. Also had a liver biopsy. My LFTs were elevated but everyone attributed that to the gallbladder. (Since my gallbladder was removed my LFTs have been normal). My GI mentioned that the Mayo Clinic was doing research with PSC and he suggested I contact them. I started to do some research on PSC on the Internet and came away very scared. Most of the info was very negative and really didn't offer anything encouraging. I finally came across an article about the Mayo Clinic and various clinincal trials they were doing. I contacted the Mayo in ville FL and have been dealing with them since. I am working with a great group of people to monitor the disease. So far so good.As I said earlier since my gallbladder was removed my LFTs have been normal. I have not experienced any of the issues that come along with PSC. While the doctors at Mayo do a great job in telling me (based on where I am now) my prognosis is very good, no one knows what will happen tomorrow. I have not meet anyone else with PSC and have recently come across this site. I have done some looking around on the site and there does seem to be a great deal of info. In the back of my mind I am always questiong is today the day I start to experience problems. I always ask the same questions to the Doctors when I see them. I was diagnosed two years ago and I am 46. Does that mean I'm going down hill from here? I'm fine now but what about 6 months from now? Can anyone share some of the experiences they've had with PSC? If your LFTs were normal did the disease progress? How long did it take? Am I looking at a liver transplant later in life? Poor qualtiy of life later on? The Doctors have tried to answer these questions for me but I'd like to hear from people who have actual experience.

Thanks for listening and hope to hear from someone.Take care -- Ian Cribb P.Eng

..

[Guest guest]

Hi , I was diagnosed with Ulcerative Colitis in 2003....put on all sorts of meds...Liver readings were elevated, no meds seem to work, very frustrated. Tried an infusion called Remicade...made liver functions go crazy, had an ERCP and was diagnosed with PSC in March 2006. Started taking Urso, colitis went into remission (yeah). I had my 1st bout of colangitis in May 06 - (hospital 4 days - fever, chills, pain in right quandrant) lots of antibiotics, steroids, etc - sent home 2 hours before my daughters 1st holy communion.....all good. Next episode was christmas night (SAME).... then again in May 07 (mothers day weekend). My common bile duct was clogged, told me NEXT time we need to do some surgery..... July 07 (my birthday!) Guess What....you're having surgery (removed bile duct and used intestinal

tract to attach to liver) The doctors (GI & Hepa's) hope this will delay any need for a liver transplant 10-20 years. I take Urso, Leviquin, Prednisone and Prilosec daily to keep me feeling well. Other than the ugly scar, I'm feeling pretty good. I too had those SAME questions you've been asking....but now I just focus on how lucky I am that its not something worse. I look around @ wheelchairs, cancer patients, sick children etc. and think....OKAY I can beat this!!! I just have to adjust, enjoy life, not deny myself anything (within reason), bought a convertible, and my family is heading to the Turks & Caicos islands for a well deserved vacation next month. By the way I'm 38, two girls 9 & 10 and a wonderful husband! Life is good! Keep in touch .....wishing you well! pscnomore wrote: I was diagnosed with PSC over two years ago when I had my gallbladder removed. I had an ERCP as my GI suspected I had stones. Well no stones, but found PSC. Also had a liver biopsy. My LFTs were elevated but everyone attributed that to the gallbladder. (Since my gallbladder was removed my LFTs have been normal). My GI mentioned that the Mayo Clinic was doing research with PSC and he suggested I contact them. I started to do some research on

PSC on the Internet and came away very scared. Most of the info was very negative and really didn't offer anything encouraging. I finally came across an article about the Mayo Clinic and various clinincal trials they were doing. I contacted the Mayo in ville FL and have been dealing with them since. I am working with a great group of people to monitor the disease. So far so good.As I said earlier since my gallbladder was removed my LFTs have been normal. I have not experienced any of the issues that come along with PSC. While the doctors at Mayo do a great job in telling me (based on where I am now) my prognosis is very good, no one knows what will happen tomorrow. I have not meet anyone else with PSC and have recently come across this site. I have done some looking around on the site and there does seem to be a great deal of info. In the back of my mind I am always questiong is today the day I

start to experience problems. I always ask the same questions to the Doctors when I see them. I was diagnosed two years ago and I am 46. Does that mean I'm going down hill from here? I'm fine now but what about 6 months from now? Can anyone share some of the experiences they've had with PSC? If your LFTs were normal did the disease progress? How long did it take? Am I looking at a liver transplant later in life? Poor qualtiy of life later on? The Doctors have tried to answer these questions for me but I'd like to hear from people who have actual experience.Thanks for listening and hope to hear from someone.Take care

Got a little couch potato?

Check out fun summer activities for kids.

[Guest guest]

Ian, Sounds like you had the same surgery I just had July 07. It's great to know you've gone so long and still are not in need of a transplant. Did your doctors give you a time span after your surgery on whether or not you'll need a transplant? What kind of medications are you taking if you don't mind me asking? Thanks, Live,Love,Laugh Ian Cribb wrote: Micheal, I recently joined the PSC-support group (June 2007). I was diagnosed with PSC back in 1989 when I became quite sick and they had to remove a lot my bile ducts (outside the liver) which they replaced with a section of my bowels. They also removed my gall bladder an part of my panaceas. In 1991 I transferred up to Edmonton (it turned out to be only for a year) and so got myself a new family doctor. She was a fairly young and new doctor and was alarmed by my liver enzyme reading. She referred me to a specialist at the University of Alberta Hospital. The specialist wasn't nearly as alarmed by my LFT numbers, but added me to a research project he was running. The research involved low dosage chemotherapy (only on weekends). At first the numbers appeared good, but the pills made me feel lousy on the weekends and caused a toxic reaction. For the most part I've my liver has done fairly well since diagnoses then. My liver enzyme tests were starting to rise dramatically in the late 1990's, but a treatment with CIPRO brought those numbers down and taking URSO, which I hadn't taken before then, kept the numbers down. Since 2004 I have also been taking warfarin to thin my blood after a couple of DVTs. I had thought it wasn't related to the PSC, but from the PSC support group I've found out it is related. I have not had many of the symptoms mentioned in the PSC support group. PSC is different in everyone, but you might be spared of all or some of the symptoms meantioned in this group.Ian (51) PSC 89 On 10/2/07, pscnomore <pscnomore (AT) yahoo (DOT) com> wrote: I was diagnosed with PSC over two years ago when I had my gallbladder removed. I had an ERCP as my GI suspected I had stones. Well no stones, but found PSC. Also had a liver biopsy. My LFTs were elevated but everyone attributed that to the gallbladder. (Since my gallbladder was removed my LFTs have been normal). My GI mentioned that the Mayo Clinic was doing research with PSC and he suggested I contact them. I started to do some research on PSC on the Internet and came away very scared. Most of the info was very negative and really didn't offer anything encouraging. I finally came across an article about the Mayo Clinic and various clinincal trials they were doing. I contacted the Mayo in ville FL and have been dealing with them since. I am working with a great group of people to monitor the disease. So far so

good.As I said earlier since my gallbladder was removed my LFTs have been normal. I have not experienced any of the issues that come along with PSC. While the doctors at Mayo do a great job in telling me (based on where I am now) my prognosis is very good, no one knows what will happen tomorrow. I have not meet anyone else with PSC and have recently come across this site. I have done some looking around on the site and there does seem to be a great deal of info. In the back of my mind I am always questiong is today the day I start to experience problems. I always ask the same questions to the Doctors when I see them. I was diagnosed two years ago and I am 46. Does that mean I'm going down hill from here? I'm fine now but what about 6 months from now? Can anyone share some of the experiences they've had with PSC? If your LFTs were normal did the disease progress? How long did it take? Am I looking at a

liver transplant later in life? Poor qualtiy of life later on? The Doctors have tried to answer these questions for me but I'd like to hear from people who have actual experience.Thanks for listening and hope to hear from someone.Take care-- Ian Cribb P.Eng .

Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games.

[Guest guest]

,

When I had my bile ducts removed and was diagnosed with PSC not much was known about PSC and they had not yet done a successful LIVER transplant at VGH (Vancouver General Hospital, B.C., Canada). In 1992 I was given an old medical text which listed the life expectancy of someone with PSC as six years (thankfully I have long passed that date). Also URSO was not available at that time. My LFT numbers started to rise dramatically in 1999, but taking CIPRO brought the numbers down and the introduction of URSO has kept the numbers done.

I also daily take;

- Warfarin - since September of 2004. A blood thinner since I have had several DVTs,

which I have found out from this site is related to PSC. - Synthoid - since June of 2006. My thyroid started giving my problems. I'm not aware of

a relationship to PSC.

- Aricept - since June of 2007. A drug to help with brain function since it was found I have

calcium deposits on the brain. I'm not aware of a relationship to PSC.

- Vitamin D (2000 iu/day) and fish oil (2000 mg/day) - since July of 2007. From this site

I've heard of those that have normal LFTs so I figured I try it. LFTs aren't normal yet but

closer to normal then they have been since 1989.

The youngest of my four sons is going to turn 13 this month, so it looks like I will see them all into adulthood. I pray that you will also be blessed with a long and wonderful life.

Reguards, Ian (51) PSC 89

Ian,

Sounds like you had the same surgery I just had July 07. It's great to know you've gone

so long and still are not in need of a transplant. Did your doctors give you a time span

after your surgery on whether or not you'll need a transplant? What kind of medications

are you taking if you don't mind me asking?

Thanks,

Live,Love,Laugh

Ian Cribb wrote:

Micheal,

I recently joined the PSC-support group (June 2007). I was diagnosed with PSC back in 1989 when I became quite sick and they had to remove a lot my bile ducts (outside the liver) which they replaced with a section of my bowels. They also removed my gall bladder an part of my panaceas.

In 1991 I transferred up to Edmonton (it turned out to be only for a year) and so got myself a new family doctor. She was a fairly young and new doctor and was alarmed by my liver enzyme reading. She referred me to a specialist at the University of Alberta Hospital. The specialist wasn't nearly as alarmed by my LFT numbers, but added me to a research project he was running. The research involved low dosage chemotherapy (only on weekends). At first the numbers appeared good, but the pills made me feel lousy on the weekends and caused a toxic reaction.

For the most part I've my liver has done fairly well since diagnoses then. My liver enzyme tests were starting to rise dramatically in the late 1990's, but a treatment with CIPRO brought those numbers down and taking URSO, which I hadn't taken before then, kept the numbers down. Since 2004 I have also been taking warfarin to thin my blood after a couple of DVTs. I had thought it wasn't related to the PSC, but from the PSC support group I've found out it is related.

I have not had many of the symptoms mentioned in the PSC support group. PSC is different in everyone, but you might be spared of all or some of the symptoms meantioned in this group.Ian (51) PSC 89

On 10/2/07, pscnomore <pscnomore@...

> wrote:

I was diagnosed with PSC over two years ago when I had my gallbladder removed. I had an ERCP as my GI suspected I had stones. Well no stones, but found PSC. Also had a liver biopsy. My LFTs were elevated but everyone attributed that to the gallbladder. (Since my gallbladder was removed my LFTs have been normal). My GI mentioned that the Mayo Clinic was doing research with PSC and he suggested I contact them. I started to do some research on PSC on the Internet and came away very scared. Most of the info was very negative and really didn't offer anything encouraging. I finally came across an article about the Mayo Clinic and various clinincal trials they were doing. I contacted the Mayo in ville FL and have been dealing with them since. I am working with a great group of people to monitor the disease. So far so good.As I said earlier since my gallbladder was removed my LFTs have been normal. I have not experienced any of the issues that come along with PSC. While the doctors at Mayo do a great job in telling me (based on where I am now) my prognosis is very good, no one knows what will happen tomorrow. I have not meet anyone else with PSC and have recently come across this site. I have done some looking around on the site and there does seem to be a great deal of info. In the back of my mind I am always questiong is today the day I start to experience problems. I always ask the same questions to the Doctors when I see them. I was diagnosed two years ago and I am 46. Does that mean I'm going down hill from here? I'm fine now but what about 6 months from now? Can anyone share some of the experiences they've had with PSC? If your LFTs were normal did the disease progress? How long did it take? Am I looking at a liver transplant later in life? Poor qualtiy of life later on? The Doctors have tried to answer these questions for me but I'd like to hear from people who have actual experience.

Thanks for listening and hope to hear from someone.Take care

-- Ian Cribb P.Eng .

Moody friends. Drama queens. Your life? Nope! - their life, your story.Play Sims Stories at Yahoo! Games.

-- Ian Cribb P.Eng.