Advice for newly diagnosed PSC'ers

I'm new to this support group but I want to stress some important things about PSC for any newly diagnosed PSC'ers.

I got diagnosed with PSC fifteen years ago. I take Ursodiol for the PSC, and Salofalk for the UC. When I was diagnosed I read that the average time until transplant was 12 years after diagnosis. I also read that the most number of years you could expect until transplant was about 21 years. I don't know how true these statistics are today.

In any case, it has been like living under a cloud ever since.

Who would have thought I'd do so well? I have had hardly any issues with UC, maybe once a year feeling some bowel pain.

I'm getting a little more fatigued now, and a little itchier at times. But here's the point:

I always expected the worst, but I've been given the best! Things can go badly, but they can also go extremely well!

I wish PSC hadn't stopped me from having children. I became worried that I might die before my children were twelve. My gastroenterologist didn't directly discourage me, but realistically those statistics I read colored my outlook greatly. He said many PSC'ers have children, and that I should let him know if I was planning to have any so that the UC would be well-controlled. Other than that, he didn't say much. But what I read changed me greatly.

So my advice is : Imagine the best possible outlook, not the worst. And carry on with your life. If you have children, somebody will look after them if you die. Don't be afraid to live!! And if you're doing reasonably well, it might be better not to even tell people you have PSC.

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Thank’s Lara!!good advice for all PSC’ers and their family.Just tryin’ to change my outlook and this one helped me!


This is INCREDIBLY encouraging. Is it ok for me to know where you live and how old you are? My 23 year old daughter has just been diagnosed with stage one PSC but we still have to get the MRCP o rule out large duct. This post from you has given me such hope…look forward to your response.

I live in Canada and I'm 46. My complexion is healthy, and nobody could tell I'm ill. Even though I was diagnosed fifteen years ago, I probably had the disease for 21 years. This is not to brag but to say things can go better than expected.

One other thing: your daughter can increase her life expectancy in many normal ways. For instance, she can take the bus instead of drive a car. She can exercise and eat well and sleep well. She can stay out of bars. She can control many things. If she would like to be a mother, don't delay because youth is best for all that stuff! I truly believe that. I've achieved certain successes in life, and many people will disagree with me on this, but a woman's crowning achievement in life is to take care of a child, and that one eluded me.

What is the reference to taking a bus instead of driving a car? I'm not familiar with this precaution. I too am very young and recently diagnosed.

I am trying to find statistics to support this, but essentially I believe if you take a bus every day vs. drive a car every day, you will be less likely to sustain injury or death. As a PSCer, you can get all wrapped up in worry about your longevity. But say I told you that the most accidents in a given area occurred on the Labor Day weekend. Would you change your vacation for the week after Labor Day? If not, why not? This becomes an interesting question. You could spend all your evenings worrying about dying from PSC, but a simple error such as not looking both ways while crossing could end up taking you instead.


Thanks for your encouraging post. I, too am doing well. Probably had PSC at least 6 years ago when I presented with an elevated alkaline phosphatase and mildly elevated transaminases. Now I am one year into the diagnosis and remain without symptoms, nl bilirubin and liver function tests, no itching, no GI symptoms (mild ulcerative colitis as is commonly seen with this disease). Anyway, I too read about the prognosis and initially was depressed by my long term outlook. My doctor tells me that those stats are somewhat skewed. Historically, PSC was diagnosed after patients had symptoms, but now more are being picked up with lab abnormalities only....and for those many many years can pass without an issue. I am on urso (low dose) and sulfasalazine and am doing great. My only symptom is what I let in my head!

Thanks for the info guys. I know that your mental health directly effects your physical health. For some personalities perhaps feeling more in control of what could happen to them by taking everyday precautions is a better and less stressful lifestyle. While I admit this may be a natural tendency of mine, I think that I would be overall happier if I could let go of the everyday vulnerability to life-threatening accidents that truthfully are out of my control. I think doing everything I can to make my body as healthy as possible (proper diet, exercising, abstaining from alcohol and drugs, and staying as mentally healthy as possible) is beneficial to me, and I intend to do those things in the manner that best suits me. I think the most important part of self-reflection is learning about what you need to be happiest, and giving that to yourself. Every person is different, so this obviously looks different for every person. Another great thing that I've learned is to be patient with yourself. In tougher times (actually before I was diagnosed interestingly), I wrote myself a small note of 5 things as a reminder: patience (w/ self and others), positive self talk, perspective, self discipline, and integrity. I usually keep this note inside my flip phone so that I see it regularly.

As an ex UCer, I have learned that some of the best things we can do is to:

1. Focus on the long-tem

2. Have a good sense of humor

3. Keep positive-$&$%^&#$%^ hard to do at times

Was diagnosed with PSC in April and I am still trying to get used to it.

On the bus/car issue, I heard that most accidents occur within 5 miles of home. So I moved.

Jeff, you actually made me laugh. Thank you so much! I was just diagnosed with PSC in November. Worse things could have happened. :)

Bunny, that's a very good point about the statistics. I hadn't thought of that. But it makes sense that understanding the point of diagnosis is critical to understanding the statistics. Lily, perspective is a good point. There are people with a lot worse things than I have.

It's actually harder to see a well person misuse their body than to see another sick person. If you see all these teenagers and college students from rich families fritter away their opportunities by taking drugs, drinking alcohol, or wasting time, it's discouraging.

Lara, I completely agree! Our last school break my old friends wanted to get together and all of my symptoms were acting up and my bilirubin was through the roof. I also had mono (hence high levels). I was so sick, and I told them all to go without me and enjoy their healthy bodies.

It's been a good thing too though. Because I've spent so much time homebound this past year (before mono I had recurring tonsilitis and a tonsilectomy for 4 months!), whenever I actually am healthy I can't be stopped. I've danced my whole life, but once I finished high school I only took sporadic classes because I wasn't going to make a career out of it. You know, it's time and money so I had to minimize it. Now I take dance classes any chance I can get. I honestly haven't been this "in shape" for about three years.

My niece was just diagnosed with 'advanced' PSC. We are all devastated because there is such a lack of information, treatment, etc. We never knew this disease existed. I'm interested in the staging referred to. Her doctor didn't stage her, just said 'advanced'.

Lara, Happy Holidays. Anytime I get anxious, I come back and read this post of yours to remain positive. Is there a specific regimen of diet or exercise or sleep you followed to get through the past 15 years? Of course no or very little alcohol and a healthy diet, other than that, any alternative diet like turmeric capsules for inflammation or anything that you ascribe as the reason for these 15 years? I looked up pictures of Manitoba, so beautiful.

Look forward to hearing back. Wish you the very best during this holiday season.

Hi Be Positive,

I'm thinking about your moniker. Years ago my cousin and her friends wanted me to pick a different name for myself for the evening, and I picked "Relax". They actually called me that all evening. That was hilarious.

I break all sleep rules.

I believe it's better to exercise a bit every day than to exercise for a longer period every second day.

I eat quality foods. My preference is to eat six meals per day. I don't believe in any alternative diet. My gastroenterologist said to try probiotics and I haven't done so yet, other than what's in yogurt. He said to take vitamins too, which I haven't done. He also said to drink coffee twice per day, but I'm only doing so once per day. He wants me to take a colonoscopy every two years, but I try to stretch it to five years.

I think the secret to my success is to be rebellious and difficult. lol.

I urge everybody to watch the video by comedian Billy Connolly on colonscopy. It's on youtube but it's a little different than the one that was originally on there. You will laugh so hard that your intestines will heal! Laughter is incredibly important for the digestive system and body in general.

Thanks so much Lara. Moniker, yes, I had to remain positive for my daughter - hence the moniker. This diagnosis for her was a zinger out of the blue, and as a mother, I had to try anything to remain hopeful including the name here…she remains light hearted and continuing with her plans to apply to medical schools. Small meals 6 times a day and exercise everyday for a shorter duration both make sense.

I checked out Billy Connolly on colonoscopy, link above…it is indeed hilarious!

Wish everyone the very best and loads of laughter this holiday season.

wow great advice! i too suffered from psc and uc for several years. i am a few weeks out of a liver transplant and feeling great. lately ive been thinking about everything you go threw as a psc'er, and its mine boggling. my suggestion is to take it day by day. alot of people suggest focusing on your future, but to me that can be overwhelming. if you take it slow and just focus on getting threw the day at hand life can seem alot easier. be greatful for every day and keep your head up. there is always someone out there suffering from something way worse than you. be strong and never give up hope of getting better. psc can really mess with your head and emotions. but dont worry, in the end you will be a stronger person physically and mentally!