I’m new here and new to PSC if that what I have.
My journey began with the birth of my daughter with a 4th degree tear and a diagnosis of Crohn’s dx. I had several repairs for fistulas and another major surgery which removed my appendix, gallbladder and uterus… colostomy bag.
I continued to have major complications from my Crohn’s dx and tried remicade which I had a reaction. 6-mp and maintained with medications for diarrhea and nausea for several years until June of 2020 when the found another fistula and in doing this they discovered stage 2 rectal cancer and had to remove the rectum. During an MRCP they discovered my biliary duct (intraheptic and extra bile duct dilation to the level of the ampulla) nothing was obstructing it. I was dilated to 2mm at this point in time. They watched it, 4mm, 8mm, 12mm, 14mm then last year I had a spinal cord stimulator implanted that I developed bacterial meningitis and had emergency surgery to have it remove and had 5 weeks of vanco and another one IV. After the infection my liver enzymes spiked. (Let it be noted I was diagnosed with NAFLD previously) my GI ordered a MRI and noted “PSC” on the paperwork. After the MRI she sent me a message stating I had PBC that my immunoglobulin M was positive, ANA positive, C-reactive, C-reactive high sensitivity, positive, alkaline phosphate, ALT, AST elevated. Bilirubin fine.
When I went to see her she backtracked on everything, basically said you don’t have either. Your use of pain meds for your Crohn’s dx off and on is your problem. I haven’t taken a pain pill in 4 years, mind you. She suggested a endoscopy to get an accurate measurement because everyone measures differently according to depending on the radiologist.
I found a GI at another hospital that doesn’t take me seriously. I’d like a new doc in salt lake for yet for now this is the best I can do. I am having issues with absorption. Doing iron infusions, B-12 shots at home, calcium, magnesium, etc.
I am exhausted all the time yet am doing my best to stay positive. I joined a wonderful liver group and have found friends with similar issues.
So that’s that. Thanks for taking the time to read my story!
Lasardo, so sorry for all the issues you have had to work through. Perhaps find yourself a heptologist who has experience with PSC- at least in order to get real clarity on your condition. If you do have PSC, you will need one to work in consultation with your gastro.
Lasardo,
Thank you for reaching out to this PSC Community. You have been down quite a long road of illness and now the possibility of PSC. We welcome you to our community and are here to support you in any way we can. If you have any questions about PSC please feel free to post and someone will respond. You are not alone in this journey and we will be here for you.
As Jace said, to be sure about PSC and for future treatment you need to be under the care of a transplant hepatologist. I would suggest contacting the hepatology department at the closest transplant hospital to you. They are highly specialized gastroenterologist in the diagnosis and treatment of liver disease including PSC. I noticed you are from Utah. I am providing a link of 3 transplant hospitals in Utah. I would encourage you to get an appointment with one of these locations. If you are near a state line that you could cross into another state that offers a better liver transplant program, this link will also show transplant centers in other states.
We look forward to hearing from you again. We all have faced similar life changing/threatening conditions with our PSC and we wish only the best for you. Just live each day to the fullest.
Mark
PSC 2011 / Liver Transplant 2015