I Have Primary Sclerosing Cholangitis

A Primary Sclerosing Cholangitis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Primary Sclerosing Cholangitis. You're not alone. 51 People

    My Book

    Hello everybody, I have been struggling with PSC for 6 years. My health has been going up and down but I still enjoy my life because my partner is very supportive. I have recently written a book: Primary Sclerosing Cholangitis what now? And I would really appreciate any feedback...
    Stropdas Stropdas
    46-50, M
    2 Responses Mar 25, 2013

    My Daughter May Have This

    My daughter is currently going through testing to find out what is wrong with her and after much research online about liver diseases this is the one I found that fits best with her symptoms. Needless to say I am terrified that this will be it. For months she has had problems...
    wynnwillow wynnwillow
    51-55, F
    3 Responses Oct 26, 2012

    I Was Diagnosed With PSC 22 Years Ago

    Hi all. I was diagnosed with PSC 22 years ago, I was only 11. At the time and up until only a few years ago I didn't believe there was anything wrong with me as I had no symptoms. I still kept up with all my out patient appointments and medication, then a few years ago I became...
    Carla19 Carla19
    2 Responses Mar 21, 2013

    My Life As A Teen With PSC

    It all began July 1, 2011. Past few months I hadn't felt right, I was just sick and cranky, going from the bed, to restroom to the couch. Sleeping, breaking into cold sweats. We all thought for past few months I was just sick. So We medicated me with Niquil, Thinking it will pass...
    AllisonBoone15 AllisonBoone15
    18-21, F
    2 Responses May 12, 2013

    How I Got Here

    I was 23 when I was diagnosed with PSC.  I was told many things that year.  I was told first that I wouldn't live long, then that my life would be very painful.  I quit going to the doctor at that point.  I didn't think that I...
    kiki33 kiki33
    36-40, F
    2 Responses Sep 30, 2009

    My 30 year old daughter was diagnosed with

    acute severe onset ulcerative colitis and primary sclerosing cholangitis in early April. She was also born with a moderate intellectual disability and mild autism. I'm overwhelmed to say the least.
    deleted deleted
    1 Response Jun 11, 2015

    Finally A Diagnoses

    After visiting my liver doctor yesterday....after 2 years of a diagnoses of cirrhosis NOS I finally have a correct diagnosis PSC. In the last 2 years I have underwent 13 varicie surgeries, being drained, hospitalizations, specialists, weekly labs, chronic fatigue, extremely high...
    janileann janileann
    41-45, F
    1 Response Aug 29, 2013

    Since Psc

    Hi I have been diagnosed with PSC since I was 19 that was 9 years ago I don't like thinking about it . my Bile ducts were pretty scared when we found out they were not able to get a stint in the first time I had a ercp. My Gastro told me when I woke up the bad news but since I...
    mammaof2monsters mammaof2monsters
    Oct 16, 2010

    Life Since Being Diagnosed With Psc

    I was almost 21 when i was diagnosed with PSC. they tell me the reason i have it is because of havin UC also. i had never heard of PSC before being diagnosed with it so it came as a huge shocker to me and my family. i know i can get through it because i was diagnosed with UC when...
    agsf0414 agsf0414
    22-25, F
    3 Responses Aug 29, 2010

    Oh Gosh Where To Begin :)

    My name is Brooke and I am 29. The doctors have no idea when I developed this, but they think I have had it since I was a child. My liver enzymes were always very high. Not a big drinker so it was odd they were like 7 times the normal level of liver enzymes. At first they thought...
    BrookeRyan BrookeRyan
    26-30, F
    17 Responses May 28, 2010

    I Need More Information And Some Direction..

     I was diagnosed with PSC about a year ago. I was put on Urisodiol 1 tab 3x a day. They did not seem concerned about putting me on a liver transplant list yet, so that makes me wonder why. The rest of my health is excellent. Anyhow I was curious if anyone had experience...
    WorriedDad2012 WorriedDad2012
    46-50, M
    4 Responses Nov 21, 2012

    My Grandmother Is Struggling With This

    Hello Everyone, I am fourteen years old, and I am posting this because my grandmother has had this for many years, but lately has had an increase in problems. Specifically what I need to know is, have any of you ever experienced intermittent intense heat concentrated on...
    Tess1313 Tess1313
    3 Responses Nov 24, 2012

    When You Have Faith, Perseverence And Courage, There Is Nothing You Cannot Achieve. Primary Sclerosing Cholangitis Is NOT A Death Sentence.

    What is Primary Sclerosing Cholangitis? Primary Sclerosing Cholangitis (PSC) is a chronic or long term disease that slowly damages the bile ducts inside and outside the liver. A bile duct is any one of a number of long tube-like structures that carry bile to the gall bladder and...
    Stropdas Stropdas
    46-50, M
    Mar 26, 2013

    I had my colon removed

    when I was 11 due too ulcerative colitis. 6 months ago I was diagnosed with primary sclerosing cholangitis and autoimmune hepatitis. I am only 21 and struggling with symptoms .
    sarah22evans sarah22evans
    22-25, F
    Nov 23, 2014

    Just Diagnosed With Psc

    Hi all, I am 30 years old and I have just recently been diagnosed with (benine PSC) I am scared, I am scared shitless to be honest with you. I would like to chat to those who understand my condition and know what I am going through.   When I was 28 I was diagnosed with...
    SAbabe1 SAbabe1
    7 Responses Sep 1, 2011

    Knowledge And Courage. These Are The Elements Of Greatness. Because They Are Immortal They Bestow Immortality.

    If you have been diagnosed with PSC, these are the basic questions you should ask your doctor. “How severe is the liver damage?” “What stage am I at?” “What treatments do you recommend? “Will the treatments slow down the progression of the disease?” “Will any...
    Stropdas Stropdas
    46-50, M
    Mar 27, 2013

    I had a liver transplant in 2003

    for PSC. In 2013, PSC came back in a rage. I had bile duct surgery in June of 2013, now liver numbers are down, but liver biopsy shows liver is degrading. MELD is now 6, was 14 last year, only a matter of time. I am 62 and not really sure I want to go though this again. What...
    tzeiher tzeiher
    61-65, M
    1 Response Jul 15, 2014

    My Own Living Hell!

    When I first found out I had PSC I was 19. I had just joined the Air Force and was getting ready to make it a career. It all started in about October of 2006 I started losing A LOT of weight  but didn't worry too much because I was taking a diet pill that I was told was...
    afbaby18 afbaby18
    22-25, F
    11 Responses Nov 21, 2009


    why do so many people with this disorder have to have colostomys?
    wynnwillow wynnwillow
    51-55, F
    2 Responses Oct 29, 2012
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