This is my first post here so I guess I will just tell my story from the beginning. About a month ago I went to my PCP for a routine physical. Everything appeared normal. I had never had a blood test before so my doctor ordered one. When the results came in my liver enzymes were pretty high: ALP 727, AST 349, ALT 349, bilirubin and albumin were normal. I was referred to a local GI doc who ordered an MRCP which revealed mild biliary dilation. I also got a colonoscopy which showed I had IBD of an indeterminate type (probably UC) My GI suspected I had PSC and recommended I go to the Mayo Clinic for further evaluation.
Last Monday I drove to Mayo and spent a week there getting tests and meeting with doctors. My PSC was confirmed. They found a 2cm long stricture in my common bile duct which they dilated with an ERCP balloon. I guess some good news is that none of my strictures were particularly narrow and are still fairly mild. Because my transferase levels are so high they did a liver biopsy to find out if I have autoimmune hepatitis. I am still waiting for the results on that. I am going back to Mayo in six months for another MRCP to get an idea of how fast my PSC is progressing.
It is bizarre knowing I have such a serious disease when I have no symptoms of PSC or UC. Despite my lack of symptoms the hepatologist I saw said I probably have already had PSC for several years which was a huge shock. I am still trying to process all this mentally. I feel like now I am just waiting for the symptoms to start showing themselves. I am incredibly concerned about a premature death, either from getting cancer or dying on the transplant list. I wonder how long I will remain asymptomatic for. Thank you for taking time to read my experience (so far).
Conscious, about the only good thing about PSC is that it generally progresses slowly. Many people live for years, and decades, with it. Yes, a symptom will rise up as well.
When I was diagnosed after an ERCP, it took some time for the diagnosis to sink in. It is NOT a death sentence. It will take some time to understand what PSC is, what it does and what can be done about it. When I researched, I found a study that said that the average length of time from diagnosis to transplant was 12 years. I made it to just over 4.
From your post, you are asymptomatic, which is wonderful. I hope you stay that way for a long time, and live your life the way you want.
Just having PSC or colitis is enough, but having both can be a challenge when you have symptoms. There a quite a few members here who have both, .If you do a search for colitis or uc on this website, you can find old posts with a lot of info, and you are welcome to post any questions or thoughts.
I understand the concern about cancer, It can be a double-edged sword. Hoping to stay asymptomatic as long as possible at a higher risk of cancer the longer you have it, or do you hope your health goes to %^&&$^ quickly and get a transplant sooner?
That question drove me nuts.
Thanks Jeff! Glad to hear you’re doing well post transplant. For me, I would prefer to just get transplanted as soon as possible but I know that’s not how the system works.
Sounds a little like my story. First had high LFT at 22 and a subsequent Ultrasound showed nothing abnormal. Levels remained high while I was asymptomatic til 34, when I had my gallbladder out. The following year I switched PCP and enzymes were very high and I underwent a MRCP, ERCP, and liver biopsy which showed no evidence of any disease. Confined to f/u with my liver doc every 6 months(and a new blood or genetic test each visit) until July of 2019 when an MRCP showed PSC which was confirmed by ERCP. Aside from itching since 2014(controlled now by cholestryamine) I’m asymptotic and don’t have anything holding me back at 38.
My best advice; keep a positive mindset and have faith in your God, body, and modern medicine, and trust that everything will work out the way it should.
My son was diagnosed in December 2016 initially based on very high enzyme levels. MRCP and colonscopy confirmed Crohns and PSC. My son has been and remains totally asymptomatic. He’s now 25 and has never had an issue. He started Vancomycin in October 2017 and November test results showed his levels dropped in month as follows:
ALK PHOS: 587-179 (eventually normalizing March 2018)
AST: 202-26
ALT: 478-46
Everything has been normal since then.
Make sure you are working with a heptologist connected to a transplant hospital, who has PSC experience. Do research here on Vancomycin and talk to your doctor about it.
Very relatable story. The uncertainty itself is very hard to deal with. Similarly, I was diagnosed at 20 y/o when I had elevated liver function labs after completing Accutane. That was almost 5 years ago and I have yet to be symptomatic. I did however get diagnosed with IBD last fall, uncertain whether UC or Chrohn’s, without typical presentation of either. I am extremely grateful to be feeling “normal” this far into my diagnosis, however my biggest struggle when I was diagnosed was the “what-if’s” regarding reaching milestones in my young adult life. PSC’s coarse differs so much from person to person, all you can do is take each day as it comes. As hard as that is Living with a chronic disease can really put things into perspective for the better. It doesn’t seem fair to have to worry about your health at such a young age, but know you are not alone!
Living with a chronic disease can really put things into perspective for the better. It doesn’t seem fair to have to worry about your health at such a young age, but know you are not alone!