Suspected PSC - Advice needed

Hi everyone!

I’m not really sure where to start as this is all very new to me. I am a 23 year old male and I have had elevated liver markers for over three years but have always been well and healthy weight. I was referred to a gastroenterologist who has ruled out numerous conditions from blood tests.

I then went for an abdominal MRI which showed mild abnormality of some small ducts inside my liver. My gastroenterologist has now referred me for a biopsy and colonoscopy to diagnose PSC.

My doctor has reassured me that I haven’t been diagnosed yet but, even though I have no symptoms of IBD, I’m convinced I probably do have this. I’m a risk-averse person and being confronted with stats on bile duct and bowel cancer (aside from liver deterioration) and it’s a lot to take in, especially as I am due to move country for work reasons in a week.

Is the vagueness of the MRI a sign that I might not have this or a milder version of it? Is there any significance of the abnormalities being limited to “some” of the bile ducts inside my liver?

Any responses are appreciated as I am completely out of my depth :frowning:

Hello and welcome to the group. The MRCP will give the doctor a good idea of strictures in your bile ducts, plus I hope he ran a full spectrum of labs as well. This would be CMP and CBC labs. If there is a suspicion though of PSC, you need to leave the gastro doctor and get in with a full fledged hepatologist. This is a specialist in the diagnosis and treatment of liver disease. If the Gastro recommends an ERCP, again see the hepatologist first and let his/her team associated with a transplant hospital do the procedure. These folks do these day in and day out. This is a very invasive but necessary procedure for the PSC patient but you don’t want an inexperienced person that doesn’t do these all the time to perform or you may end up with a bad pancreatitis attack and end up in the hospital.
Regarding limiting abnormalities to only some of the bile ducts, in the early stages the strictures inside the ducts will appear in various places, so this makes no difference. They will tend to move around to different locations as the disease progresses.
I know this is a lot to take in at one time, but be assured we are here for you. This is not a death sentence so I encourage you to continue to make your plans for life, schooling, etc and not let this disease, if you find out you do have it, stop you from fulfilling your hopes and dreams.
Also, it is common for patients to have either UC or IBD with PSC. With restricted bile flow, the stomach cannot break down the fats in our foods as well so that creates all kinds of stomach issues. I’d encourage you to keep a bottle of Imodium type tablets on hand to keep the diarrhea under control if you have those sort of issues. Take care and keep in touch.

Mark Wilson
PSC 2011 / Liver Transplant 2015

Thank you for your response, Mark.

I am wondering at this stage if I stand to benefit from an actual confirmed diagnosis if there is no treatment for this, especially if I have no symptoms.

I’m not a bury-head-in-sand type but I’m wondering if I should just try and get regular blood tests for the mean time. This would obvious have to change if symptoms progress.

I’m just aware of the potential for psychosomatic symptoms (I suffer from anxiety, as is) and I’m keen to avoid invasive treatments that come with risks of their own :S

Yes, you need to know of a confirmed diagnosis. Even though there is no treatment for PSC, there are ways to manage the disease until it progresses to a point that you need a transplant. You must always keep hope alive with this disease, no matter how bad things seem. For there is a wonderful life at the end of this long tunnel should you need that life-saving transplant. I’m living proof that it’s worth it all. I got my transplant in 2015 after a long battle with PSC, but I was able to work with no days missed for disease related sickness. Now each patient is different and we all have varying issues that come up, but I had a wife and children and many other things to live for. I never thought twice of pursuing what needed to be done to reach the end goal.
As far as invasive treatments, you don’t need to rule out the ERCP procedure. If you have PSC then those ducts will get blocked. If you don’t seek appropriate intervention your liver will be destroyed by the blockage keeping bile from draining and you will die. Please keep all options on the table. I do hope you can overcome any anxiety about all this. You need to keep trusted family members or friends very involved in all this and take someone with you to each appointment.
If PSC is confirmed, they will initially want labs probably every 6 months, then those will increase in frequency as your MELD score climbs higher over time. Please reach out to this forum and let us as a group help you through this. You do not have to face this battle alone.
Take care.