Anyone with Crohn's and diagnosed with PSC?

[Pamelastromley]

Just curious if anyone on here has been diagnosed with PSC? How did you find out? How bad is it? What do you do for treatment?
During my last ct, the radiologist suggested an MRCP of my liver to rule out PSC.. scheduled for the 29th. I'm full of anxiety and stress about it and really hope it's nothing.. but you all know how the mind likes to wander.

 

[mdopirak1948]

Unfortunately yes. There is no treatment. I required a liver transplant but am about to celebrate my 22nd anniversary of the transplant and lived a normal life. Some people can go a long time before transplant since disease progression rate variable

 

[GirlwiththeCurl]

My daughter has IBD, PSC, and autoimmune hepatitis. If you want to find some reliable information about it, search PSC Partners Seeking a Cure. The disease course is EXTREMELY variable, so you can't know what will happen when if you do end up with that diagnosis. (My daughter was diagnosed over three years ago and is still currently asymptomatic).

 

[SoccerMom47]

They are monitoring my Ds 17yo for this. . GirlwiththeCurl your post made me smile though! I love that she is asymptomatic.