In early July 2022, I learned from the American Association for the Study of Liver Disease (AASLD) that they’ll be updating their PSC Guidance to limit the use of oral vancomycin to clinical trials. Their Guidance will also state that treating IBD associated with PSC is outside their scope. If this AASLD Guidance passes, insurance […]
3 Things That Help Me Emotionally Cope With Living With a Rare Disease
In honor of Rare Disease Day today, I’d like to share how I emotionally cope with living with the rare disease, primary sclerosing cholangitis (PSC) journey. I also have written a list for you at the bottom of this post sharing my top three favorite rare disease organizations! What is Primary Sclerosing Cholangitis? I live […]
3 Non-Invasive Tests to Find the Cause of My Elevated Liver Enzymes
When my gastroenterologist noticed I wasn’t responding to any medications for my ulcerative colitis and when she discovered I had elevated liver numbers in September 2017, she had me do three non-invasive tests to try to see if I had PSC. 1. FIBROSpect Specialty Blood Test We started with the simplest test: a FIBROSpect blood […]
Noticing Elevated Liver Enzymes in My Blood Work
Did you know a common sign of PSC is losing response to the IBD medications you try? Since my ulcerative colitis diagnosis in 2014, I’ve tried countless medications, including prednisone, 5-ASAs (like mesalamine, sulfasalazine, and Apriso), enemas, biologics, and more, and none of them brought me relief for more than a few months. I Failed […]
How to Prepare for a Liver Biopsy (Plus Tips to Help You Safely Recover)
Welcome back to my 4-part series all about the liver biopsy experience! Today I’m going to share how I prepared for my liver biopsy, beginning one month in advance! I also offer some tips about things that helped me recover. If you missed Part 1, definitely check it out because I talk all about the […]
The Remarkable Ways Vancomycin Improved My Ulcerative Colitis and Primary Sclerosing Cholangitis
I had elevated liver numbers near the end of 2017 and my gastroenterologist believed I had the rare liver disease, primary sclerosing cholangitis (PSC). Unfortunately, the results of my procedures (including a specialty blood test and an MRCP) were normal. That’s why my GI and I decided that I try vancomycin to see if it […]