New here new to PSC?

I’m 48. I have had Crohn’s dx. Since giving birth to my daughter in 2000 at age 26 after a 4th degree tear and removal of my gallbladder, appendix and uterus I had complications and received a permanent colonoscopy bag. My Crohn’s continued to be a problem until I was 45 and I finally went into remission. Unfortunately at this point they found stage 2 rectal cancer and I had to have my rectum removed.
When looking at my MRI at this time they noticed my biliary duct dilated to 2mm but we left it alone. The cancer was the issue at this point in time. It was June of 2020 and things were hectic with Covid. However, they ordered a MRCP after the surgery it was now 4mm and continued to 8mm, 12mm and is now 14mm on my last MRCP.
My liver enzymes spiked and I’ve noticed yellow eyes all last year prior to being alerted or anything I have non alcoholic fatty liver. My ANA is positive, my immunoglobulin M is positive, C-reactive positive, etc. however the doctor told me I had PBC when sending me a message through the system then on the MRI put PSC but when I saw her she back tracked everything.
I’m not sure what to do. Any opinions should be helpful.
Thanks and hello…

Hi Lasardo,
You are going through so much I’m sorry you are now dealing with liver problems. My suggestion would be to get an appointment with a hepatologist tied with a transplant hospital and let he/she review all your imaging and other records. Whether you have PSC or PBC you need to be under their care. Many hepatologist will let you self refer for an appointment. Keep in touch.

Mark
PSC 2011 / Liver Transplant 2015

1 Like

Thank you for responding. Your words are both kind and helpful. I should have noted that the doctor is a gastroenterologist that reviewed my records. The hospital I’m at is a teaching hospital and I sense a lack of confidence. I would prefer to have another doctor within the practice review my records but I’m not sure how to do that. Without stepping on anyone’s toes.

Keep in mind not all GI’s are hepatologists so there is a difference. Wouldn’t worry about his toes just be nice and ask for a liver specialist for a second opinion.

1 Like

Lasardo,
It is best to get to a hepatologist. They are liver specialists, where GI docs are generalists.

Sorry you are having to deal with multiple issues like this. There are quite a few members here who also have Chrons, as well as those who have UC.

You’re not alone.
Jeff

2 Likes