My first day on this site – hello to all.

Hello all. What a great resource this is. So many experiences and valuable info to draw from. My story started back around 1990 when I was diagnosed with Crohn’s Disease. Follow-ups found high grade dysplasia so we chose to remove the colon and lower ‘parts’ so I have an ileostomy. Years later after stones caused pancreatitis, an ERCP determined I have Primary Sclerosing Cholangitis (PSC) – which was always a risk given my autoimmune Crohn’s Disease. The PSC has been stable for 20 years but starting Jan 1, 2020 my liver enzymes started to climb and most alarming so did my CA 19-9. The liver stabilized and I’ve never suffered from jaundice, but while the CA 19-9 should be less then 27, mine went from 140 to 300 to 800 to 1600 where it stabilized for many months and we in turn assumed it was a by-product of less risky inflammation caused by the PSC. Multiple MRI’s, 2 ERCP’s and a CT Scan didn’t detect any malignancy. But recently my CA 19-9 doubled to over 3200. Now the gastroenterologist and the surgical oncology team have shifted into high gear. The risk we’ve always been watching for is CCA given I’m at higher risk with my PSC. But with the rapid elevation of CA 19-9 the new theory shifted away from innocuous inflammatory response of PSC to a positive indication of hidden CCA (my scarring and narrowing in the bile ducts native to PSC is perhaps masking the lurking CCA). So absent any indication of metastasizing at this point, the surgical team is putting me on a transplant list. In one week I’ve secured a few volunteers that are a blood type match and I meet the transplant team shortly to continue my screening.

Their opinion is that while we don’t have a noticeable mass on images to date nor do we have a positive biopsy, my history of PSC and rising CA 19-9 means the rather dramatic pivot to a transplant is the most curative option and resolves the existing underperforming liver as it resets my PSC clock. So this may become a post-operative diagnosis where only after they remove the liver will pathology assess what is truly going on. Worst case we’ve introduced a transplant and life on immunosuppressants prematurely – best case is that we are acting so fast that we eradicate it and provide the longest possible life going forward.

I’m in Toronto, Canada with a hospital that does more liver transplants then the Mayo Clinic. I did open a file with Mayo Clinic and am currently enrolled with the Canadian Cleveland Clinic so that I can access a few different perspectives. I’ve gone from assuming CCA has taken over and my time is very limited to feeling like this is manageable (and everything in between). Reading posts has been comforting as so many using this site have amazing stories of resilience and perseverance.  I salute you all, including the moderators and those keeping this site vibrant.

Scott.

• This topic was modified 3 years, 9 months ago by Scott.
• This topic was modified 3 years, 9 months ago by Scott.