Crohn's Disease Forum » General IBD Discussion » Anyone with Crohn's and diagnosed with PSC?


11-04-2018, 05:37 PM   #1
Pamelastromley
 
Join Date: Aug 2018
Location: Minnesota
Anyone with Crohn's and diagnosed with PSC?

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.
11-15-2018, 11:30 AM   #2
mdopirak1948
 
Join Date: Nov 2018
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
11-16-2018, 04:24 PM   #3
GirlwiththeCurl
Senior Member
 
GirlwiththeCurl's Avatar
 
Join Date: Jun 2015
Location: Wyoming
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).
__________________
Dx
Primary sclerosing cholangitis
Autoimmune hepatitis
PSC-related inflammatory bowel disease

Medications
Azathioprine 20mg
Flagyl
Ursodiol 125 mg x2
Concerta 27mg (ADHD)
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