Skip to content

Primary Sclerosing Cholangitis – From Colitis

Just diagnosed with Primary Sclerosing Cholangitis.

I was diagnosed in 2003 with ulcerative colitis, and a couple of months ago, had an MRI because I am going through a pretty bad flare up of UC, and the MRI showed that I now have Primary Sclerosing Cholangitis. PSC is a rate, chronic, progressive disease of the liver (6 per 100,000 people), and as the cause is not known. There is a strong association between PSC and chronic ulcerative colitis, and cancer of the bile ducts. PSC starts with an obstruction of the bile ducts and sclerosing of the liver. No, I`m not a drinker, this rare disease if from the ulcerative colitis inflammation over the last 8 years. While PSC is treated with medications, there is no cure for it, doctors can only care for people with PSC by reducing signs and symptoms of complications. Many medications have been studied in people with PSC, but so far non has been proved to slow or reverse the liver damage associated with this disease. A liver transplant is the only known cure for PSC, but transplant is typically reserved for people with severe liver damage, i.e. when it reaches cancer of the bile ducts or cirrhosis. Life expenctancy from diagnosis to liver transplant is 10 years. Without a liver transplant, the disease will continue on its own to get worse and worse, and there doesn`t seem to be much anyone can do about it at this time in research.

Has anyone out there been diagnosed with this rare disease, Primary Sclerosing Cholangitis. If so, it would be helpful to hear how you`re making out and how long you`ve had it, have you had to have any strictures for bile duct blockages, or balloon dilation of the strictures.

I will be going for a liver biopsy once my flare-up calms down to see just how much damage and what stage the disease is at.


Written by “Scared and Worried”

submitted in the colitis venting area

39 thoughts on “Primary Sclerosing Cholangitis – From Colitis”

    1. Hi UC mama,
      Actually, I didn’t have any pain what-so-ever. I had an ERCP done when I was first diagnosed with UC and high liver enzymes back in 2003, and this was simply a follow up (unfortunately 8 years later) to check out why the enzymes were still showing high. So my gastro doc did the MRI and this is where the results have taken me.

    2. I was diagnosed with PSC in 1980 when my gallbladder was removed. Prognosis was 5 years … at that time, liver transplants were still experimental and I was basically given a death sentence. December 1990 (obviously the dr. missed the 5 year mark) I was hospitalized with complications of PSC and told I was a prime candidate for liver transplantation. In Nov. 1992 I was evaluated for Liver transplantation and placed on the waiting list in January 1993. I had my liver transplant June 1993.
      The hardest part of the transplant process is the waiting and wondering if you will find a match.
      The down side of transplant is that the anti-rejection medications bring on another set of health issues but they normally don’t happen immediately.
      Rule #1…. Follow transplant protocol! I’ve had too many friends think they “know their body better than the dr.” That may be so but stay on top of everything, your medications, your diet, and your physical activity. Follow your dr.s advice exclusively. Make sure ALL medical personnel are communicating.
      Rule #2… After transplant be cautious of public places or people who are “under the weather” their “little cold” can kill YOU.
      Rule #3… wipe down all surfaces with a bleach wipe. This will help you stay ahead of the game.

      good Luck and God Bless

  1. Scared and Worried-

    I am 29 years old and was diagnosed with severe UC in 2005. At the time of my diagnosis, my liver enzymes were very elevated. However, my docs chose to wait to deal with those until we got the UC under control. I began Remicade in August 2006 and showed great improvement with the UC. I went to the Medical University of South Carolina and had an MRI and it was inconclusive for PSC. Next they did an ERCP. An ERCP consists of an upper endoscopy, they then use a catheter to insert dye into your bile ducts and x-ray the ducts for any evidence of PSC. I had definite signs of PSC but no dominant strictures. The PSC diagnosis was on December 30, 2006. ERCP is the best way to diagnose and/or treat PSC but it caused me to get very sick with Pancreatitis/Cholangitis for a few days, but that is a known risk factor for the procedure.

    On the day of diagnosis of PSC, I heard the same thing: You’ve got 10 years and you will need a new liver to survive. I am thankful that today I am asymptomatic as far as any pain or severe symptoms go. I have elevated liver enzymes all the time and there is nothing they can do about that, but I can deal with it. I’m prayerful that I will continue just like this, but we never know what the future holds.

    My docs tried to put me on Ursodiol to lower my liver enzymes, but my main liver specialist decided that Urso would only lower my levels, but not help me battle the disease any. Urso would simply be a cosmetic fix for the liver enzymes.

    I’ve had one or two instances of severe upper right quadrant pain attributed to the PSC but they did not last long. One was possibly a gall stone.

    I have not had to have any stents or balloons in my bile ducts as of yet, and I’m a good 5 years from diagnosis. Praise the Lord.

    I am still on Remicade and docs seem to think it may help the PSC but they won’t officially say that due to no testing. I hate to be on Remicade but it saved me from having my colon completely removed, so I guess we have to count our blessings.

    If I can ever help you or you have any questions, please let me know.

    -Matt Wright

    1. Hi Matt,
      Thanks for your info. I see my gastro/hemotology specialist on Wednesday to discuss what’s in store from here. Keep in touch and I will do the same when I see what she says.
      Much appreciated.

    2. Matt,

      I was just browsing looking for information on PSC and came across the site and your comment. My son is 10 yrs old and was diagnosed with UC, Autoiimune Hepatitis and PSC. He is currently being seen by MUSC, but I took him Cincinnati Children’s last week for a second opinion. He’s taking Prednisone 35 mg and 6MP 50mg. He initially took 55mg of Prednisone, but is slowly tapering off. The GI specialist at MUSC says “he’ll be fine”, but I have to say after reading up on PSC it has me a little discouraged. How are you doing and do you have any tips you can share that are helping you? Anything would help as I am a very scared momma. Thank You and God Bless,


      1. Keri,

        My husband was also diagnosed by MUSC. He passed away from cholangiocarcinoma less than a year later. If you ever need to talk I’m in the Lexington sc area. Make sure to seek out other Physcians if you don’t feel comfortable with the care he is receiving.

        Jennifer Evand

  2. Hey Matt,

    A couple of weeks ago a blood test showed that I had elevated liver enzyme levels. I also use Remicade, but my doc suggested that I stop to see if that’s why my levels were elevated. I skipped my next infusion and my levels have gone down a lot. Obviously I’m not a doctor, but maybe you should look into that? I know it’s known that you have PSC, but stopping the Remicade may lower the enzyme levels.


    1. Sam-

      Unfortunately, my liver enzymes were elveated for a year prior to starting Remicade and have remianed eleveated once on Remicade….

  3. I have also just been diagnosed with PSC… I am 37 had UC for 12 years and 5 moths ago had my colon removed (jpouch constructed in that surgery) and in-between surgeries my liver numbers were extremely elevated and that lead to a series of testing. Thus the news of a new diagnosis. I had my take down surgery 8 weeks ago and the liver consultant wants to catch up and discuss options.. I just want to get over the surgery before facing new issues… With that said I finally feel like I have energy again and feeling well. So after Christmas I will be acting on my PSC.

    1. Hi Colette,
      thanks for responding to PSC. This is new for me and I am seeing my Gastro/hemo doctor on Wednesday to get more in-depth info on what is actually in store for me.

      Keep in touch and let me know how you’re doing and what you find out with your doctor appointment down the road, and I will do the same (that is if you want me to.)

      Take care,

  4. i believe the problem lies in the UC medication we take. i think this is why the doctors want to do frequent blood tests to check our liver. i have stopped all my medication…it was causing to many side effects. i have elected to have the surgery. none of the mediation was working for me…and i was not taking any more steroids. i really do not trust the medication used to control UC.

    this is really scary to know you can/have get PSC…..

  5. I was diagnosed with a mild case of PSC about a year ago. My diagnosis came when I did a trial of azathioprine and my liver enzymes became elevated. My gastro has said up till now that there doesn’t seem to be any proven treatment as yet for PSC.

    My next appointment is in February and I am hoping there will some more definitive word then. As I am 56, I am going to retire in about a year while I still can enjoy life. That way I have time to work on fitness. I am also finding that my mind is continually fuzzy and I think this may be an effect of the PSC.

  6. Hi scared and worried,

    I have had PSC for more than 10 years and there are many support groups on the net:

    To join a global group of PSCers and caregivers for social
    connection, education and sharing, check out Facebook at:

    To join the group go to and type in PSC Partners Seeking a Cure, or click on the link above.


    Chaim Boermeester

  7. Hey, I was diagnosed with PSC 5 months ago. I thought I had arthritis so went to doctors and they did routine blood test and it came back with “abnormal liver function”. Took 5 months a ultrasound on my liver and then an MRI for them to diagnose PSC and during that time I suddenly started to get UC symptoms. Googled PSC and found that UC usually comes with it, checked the symptoms and pretty much diagnosed myself! Told the doctor who scheduled me for a flexisigmoidoscopy and they confirmed I had UC. All happened in one big go! I wouldn’t know I had PSC if they hadn;t diagnosed me as I’m pretty much asymptomatic, and since they put me on ursodeoxycholic acid by liver function tests have actually gone back to normal so I’m very lucky there, It’s the UC that makes my life suck! From reading other people’s experiences on face book etc I know I’m very lucky with the lack of issues I’m having with PSC but I know that it may get worse in the future. Reading what some other people have gone thru is pretty scary but the fact that, like those with very bad UC, they’re still fighting proves that whatever happens you can survive and keep life worth living! Also many people with PSC in the facebook groups have gotten past the 10 year diagnosis-liver transpant average timeline without any severe problems. It doesn’t happen to everyone. One thing someone said is that you’re far more likely to die with PSC than of PSC. Like UC it’s prograssive but no death sentence. Just got to take each day as it comes! Good luck!

  8. Hi, i was diagnosed with both UC and PSC 2 years ago when i was just 13. It was caught early and im on 7 tablets a day and coping well, im quite lucky, i dont get much flare ups and i havent had a liver biopsy. Good luck with everything! :)

  9. So I was diagnosed with PSC first about 6 years ago when I was 20. I was having colitis symptoms and of course the doctors brushed it off as something I ate, blah blah blah. Until they did normal blood work which showed I had really high liver enzymes. After months turned into years I finally had an ERCP done which showed the PSC. They also did a biopsy, I believe to test for cancer but it came out negative. I’ve been on 1000 mg of Ursodiol daily. The doctors left it at that.

    I was still having colitis symptoms and it wasn’t until 2 years ago that I had a colonoscopy which found the colitis. Apparently a high percentage of people with PSC also have colitis (but not everyone with colitis have PSC) so I am pretty upset they didn’t test me for colitis when they diagnosed the PSC. I went through 4 years of unnecessary pain and irregular bowel movements. I am not on remicade, just 5ASA and the azathioprine (after being on prednisone which I will never, ever take again).

    Let me tell you, as bad as the colitis is, the pain from my liver but even be worse. I am saying this as I am currently in a flare-up. Actually, yes it is way worse. My pain is a constant sharp pain. I did have gallstones which were removed during my second ERCP. They also inserted a stint to help with the flow of the bile. The doctor said since the bile ducts are blocked, the bile wasn’t moving and just forming stones. Even with the stint, I am in severe pain.

    I also have a burning pain in the stomach (upper middle). My liver specialist and my gastroenterologist are in the same office and they each blame the pain on the other organ. The liver doctor says my upper stomach pain is from the colitis/chrons and the gastroenterologist says it’s from the liver. I really don’t get a straight answer. But all I know is I have severe upper right pain, burning upper middle pain, and a sharp lower pain. Plus the fatigue completely drains me, I literally cannot get out of bed.

    As for the liver transplant, I was told they use your bilirubin levels as a marker to put you on the transplant list. Once you hit 50 on 3 consecutive times, they will list you and hopefully transplant you before you hit 100. I went from a level of 7 to 41 within a matter a months, which really scared me, but thankfully I went back down to about 26.

    Just to vent a little more, PSC is NOT an infectious liver disease like Hepatitis A, B, or C so you cannot contract it from anyone else nor pass it others. I just hate it when you tell people you have a liver disease and they automatically think Hepatitis C. Also, I do not drink and have not for over 11 years. I was told it’s just an autoimmune disorder.

    So we’re not alone after all. I’m sorry that we’re all in this position but let’s keep positive and hope for the best!!! Good luck to all of you!!! In the meantime, I’ll be closely watching what my brother and sister consume because the way my liver is feeling, I’ll probably be needed that transplant soon.

  10. my daughter is 18 and 2 years ago was feeling tired and sick and had blood tests. High liver readings were found. An Ultra sound was done on the liver and the gall baller was empty and liver enlarged. The blood results kept getting worse they put it down to a reaction to the cotraceptive pill. She stopped this. In time the readings went down but then up again, she had had a ct scan, mri and nothing had shown up. Then a liver biopsy and ercp. Finally they suggested psc and a colonosopy. Which we had today. Looks like colitis is present. She is generally well, no colitis symtoms, the liver funtion tests have gone up and down she gets tired but it is a worry.

  11. Hi

    I just found out today from a MRI, I have subtle, mild beading of the bilary ducts, PSC. It started 8 months ago with elevated liver enzymes (in the 160’s). Levels did not budge for 4 months. I did a liver biopsy which showed stage 1 agitation, autoimmune hepatitis (i already have discoid Lupus, which affects skin). Ultra sound showed no issues.

    I have been on meds for a month, 50mg of immuran and started out on 30 mg of prenisone. Right now I am down to 15 mg of prednisone.

    Liver levels after 3 weeks on meds….ast and alt came down to around 115 and mt milirubin levels are now within range (they were slightly elevated to begin with.

    Next step will be colonoscopy and ercp, but my next appt is in two weeks. I do blood draws every two weeks.

    Bottom line, I am scared. I am grateful that they found this in the beginning stages, autoimmune’s….ugghhhh.

    Anyone else been through this??? Or have any advice, thank you:0)

    1. Anyone who has been diagnosed with PSC – can you tell me about what your ALP number was when you were first diagnosed? My daughter has colitis and an ALP of 192, ALT of 56 and AST of 23. Very worried about PSC. Thank you.

  12. this is not intended to scare anyone- i have been reading this site here and there when my husband was diagnosed with PSC and noticed a commonality that is not discussed- this is to INFORM you and not scare you. my husband had UC for 10+ years and for 2 years had high liver enzymes. he was diagnosed with PSC and had no symptoms other than the high liver enzymes. they did an MRI and found a mass- cholangiocarcinoma. a month later he became ill- my husband was under 30 years old and he passed away a few months after. my message is: make sure your PSC is managed and you have the proper diagnostics done to understand what stage your disease is at- even if you feel and look healthy.

  13. My husband was diagnosed with PSC in late 2008. By September 2009 he was diagnosed with Cholangiocarcinoma. January 2010 he passed away at the age of 30. Go to a good doctor! I recommend Mayo Clinic.

  14. I also have had ulcerative colitis now for 3 years. I only had 2 infusions of infliximab, my last was in October where i had allergic reaction and was taken off it. My liver test since the start of January has continued to rise and is now over 600, i havent been on any meds since the infliximab and now i am really worried and scared

    1. Mary- the same thing happened to my husband- he started back on the infusions with more benadryl. you need to have someone monitor your liver function.

  15. And now it’s dropped again, weird, they are putting it down to the azathioprine and allapurinol combo getting out of my system although these pills didnt cause this issue before only the azathioprine on it’s on and when i recently went back on them i was only on them 4 days so i am really unsure if that can cause such high liver levels, no i am really confused lol

  16. Hi. I was diagnosed with PSC when I was 12 years old. I am 33 now and am still living with it. In the last 4 years my PSC has got much worse putting me in hospital anything from 3-5 times a year. I have the most extreme pain imaginable, vomiting, severe itching, confusion, rapid weight loss ( 3 stone ). I now also have thickening of the gallbladder and Cirrohsis. I had an assessment for a liver transplant 2 weeks ago and have now been placed on the transplant list. My blood group is B+ so there is a 18 month waiting list. If you are lucky to have blood group AB or A the waiting time is much shorter. I wouldn’t wish this disease on anyone, I have never known so much pain in all my life. I hope everyone on here does not have to wait 21 years to get a transplant.

  17. Hi
    It has been lonely until I read everyone’s comments, I am a single mum and worry about the future. Bit scary reading the wives of past PSC. and I am sorry for your loss. I was diagnosed with UC 2007 and had 2 bowel operations 2013 with J pouch formation and now waiting for the reversal. Though do not know if they will continue with the surgery With the routine post operation blood test my liver enzymes were found to be elevated and now waiting on confirmation of diagnosis by MRI on 13 August. Reading about PSC makes me think I am itchy and I have found pineapple juice gives me abdominal pain(does anyone else have this)
    All the best to everybody

  18. I was diagnosed with PSC 11 years ago at the age of 37. I was very sick at the time and they performed a liver biopsy to see if I had UC. I didn’t but found out that I had PSC and Alpha 1 (Alpha one antitrypsin deficiency) . My doctor was stumped. Eventually about 4 years later, UC reared it’s ugly head. I’m on no meds for my UC but been taking 1000 mg of Ursodiol a day for 10 years and my levels have been hovering about 200 for many years. Every year I go for a colonoscopy, endoscopy and MRI to check on my UC and PCS. Just got word last month that my liver/bile duct have remained unchanged for 11 years. I feel great (knock on wood), I have had no flair ups of my UC in years and have no pain associated with PCS. I was researching how long someone can live with having PSC without dying from the disease but instead found this site. This is the first time I’ve publicly written about my diseases. I’m a healthy 48 year woman of 2 amazing teenagers and my hope is that I live long enough for grandchildren. Does anyone know what the longest surviving PSC patient was before needing a liver transplant?

    1. Helen,
      I don’t know the longest surviving patient with PSC, but it sounds like you are in “good shape” with your diseases. My UC was diagnosed in 1991, and I was diagnosed with PSC in 1998, at the age of 33. It was found when I had my gall bladder removed. I had been pretty much asymptomatic, PSC-wise for 14 years. I am pretty sure I had one or two minor cholangitis attacks over that span, but did not know what they were at the time. I took Urso, as well. My UC was controlled easily with the old version of Asacol.

      My PSC “broke bad” kind of suddenly in June of 2012. Things went downhill rapidly from there, and I ended up with a liver transplant in October of 2013. My 1-year anniversary is almost here. :)

      My UC came back pretty hard starting in February of this year. I have been trying to tame it with SCD and Asacol, but it’s not looking too promising at this point. But, my liver is working like a well-oiled machine!

      Keep up with the yearly monitoring (or whatever the docs recommend). It sounds like they are on top of things. I know it’s scary when you read some of the statistics about PSC. And it is a very serious disease… that has you “waiting for the other shoe to drop”, at times. I think I lived in mortal fear of cholangiocarcinoma more than the thought of a transplant. But there were long periods where it stayed far back in my mind. Doing too much reading/researching can sometimes bring more anxiety than we need, haha. I have to step away from researching every once in a while, for my own sanity. ;)

      Knowing that I would probably need a transplant some day, I tried to stay physically fit and ready (as if I anyone could really be ready for something like that). Although I was not able to play any sports or work out once I became very sick with the PSC, the docs said that keeping myself in shape over the years was going to be valuable during my surgery and recovery. They were right, and I, luckily, did quite well, relative to many others. I was in the hospital for only 1 week. :) Everyone is different though, of course. I try to take the same approach post-transplant as I did pre-transplant: stay as active as I can, eat clean and stay positive.

      I also have 2 great kids, 21 and 20 years old. I plan on being around for any grandkids that may come along. I think you will be, too. :)

      1. Helen and Kelly,

        Are either of you still on this site? If so I would love to talk to both of you or either of you. I am a 43 year old woman just diagnosed with PSC and scared. I have two beautiful children and a loving husband I need to be around for. Please contact me if you can. I would love to talk.

  19. mom of a PSC UC son

    ALL; My son was in his sophomore year of college when he came home with pain in his side- after five long months of tests they determined he indeed had PSC- then a few months after started to have bowel issues and thus his diagnosis was UC.- He has been on the 7 pills a day of Urso and the 5 pills a day of Asacol- he had the stint put in to help with the drainage and tha helped 100% and his liver enzymes, from where we started in the high 700’s, came down to the low 140’s -we tried uceris but he got a pancreatic attack and had to stop- but that medicine brought his liver count down to normal-Now seven years later his liver counts are climbing back up again- this week it’s over 200 (220)- and his colonoscopy shows way too much activity in portions of his colon thus the Dr. wants him to start the medicine simponi- I am fearful of this drug- with his immune system already working at a minimal state- taking this drug will really wipe out what he has left?–But the Dr. seems to think the Asacol isn’t doing any thing any longer- My son is an active 27 yr. old male with a full time job as an aerospace engineer designer and teaches four nights a week at night youth ministry to Catholic Christian children who are making their first holy communion and confirmation- – and plays hardball baseball on Sunday afternoons- so he doesn’t miss a beat at all-
    He hasn’t had any issues with pain-jaundice-fatigue or any attacks that I can tell- just the itching every now and again, mostly because he doesn’t take his meds as he should. He has always been tall and thin (6′ 2′ 150lbs) and keeps himself in shape working out either by exercise or playing baseball-lives at home and eats really well-not a junk food person.
    I would like to know if anyone out there has tried simponi? If you have and are around the same age as my son age 27- what side effects did you have and how did it react with PSC? Can anyone give me some positives because everything I read is all negative about this drug and that it shouldn’t be taken with persons having any liver issues..

    Thanks and good luck to all of you out there dealing with PSC and UC– as a mom it is very helpful to know there are some of you hanging on after the dreaded ’10’ year (the year most need the liver transplant) mark and living life to its fullest. May God grant all of you many more years and also remember – having an illness like this, is not just yours that you are living, but so are the people around you-my son doesn’t get that- he doesn’t communicate to us when he does fell bad or hurts. And what makes me upset and is my biggest fear- is that by the time he does say something and really is in pain or has issues- it will be too late for any doctor to help. Maybe it’s because he is young and still at home that he feels like this. I’m not sure. But as a mom- it scares me that I cant help him if he doesn’t talk about anything with regards to his illness. Its like we are in a euphoria and as long as he is walking and talking and doing all the things he does- no one ever says or asks about it. ugh……:(

  20. My daughter was diagnosed with PSC when she was 9 years old. It was devastating but go saw us through. She had her transplant at the age of 12. She is 18 years old and entering in her first year of college. She desires to be a CRNA. We came across the best doctors in the world at Jackson Memorial Hospital in Miami Florida. We couldn’t have asked for better and knowledgeable doctors in this field of transplant. One advice I can provide is to follow the doctor’s instructions because many have experienced rejection from the organ because of not following the doctor’s advice to the letter. Just remember to rely on God and not your own understanding.

    1. Landy, my boy is 13 and got the dreaded news 4 days ago, the shock did not settle yet and road ahead of us seems pretty rocky. If you are available to talk to, I would really appreciate it. Thanks.

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.