Just diagnosed with Primary Sclerosing Cholangitis.
I was diagnosed in 2003 with ulcerative colitis, and a couple of months ago, had an MRI because I am going through a pretty bad flare up of UC, and the MRI showed that I now have Primary Sclerosing Cholangitis. PSC is a rate, chronic, progressive disease of the liver (6 per 100,000 people), and as the cause is not known. There is a strong association between PSC and chronic ulcerative colitis, and cancer of the bile ducts. PSC starts with an obstruction of the bile ducts and sclerosing of the liver. No, I`m not a drinker, this rare disease if from the ulcerative colitis inflammation over the last 8 years. While PSC is treated with medications, there is no cure for it, doctors can only care for people with PSC by reducing signs and symptoms of complications. Many medications have been studied in people with PSC, but so far non has been proved to slow or reverse the liver damage associated with this disease. A liver transplant is the only known cure for PSC, but transplant is typically reserved for people with severe liver damage, i.e. when it reaches cancer of the bile ducts or cirrhosis. Life expenctancy from diagnosis to liver transplant is 10 years. Without a liver transplant, the disease will continue on its own to get worse and worse, and there doesn`t seem to be much anyone can do about it at this time in research.
Has anyone out there been diagnosed with this rare disease, Primary Sclerosing Cholangitis. If so, it would be helpful to hear how you`re making out and how long you`ve had it, have you had to have any strictures for bile duct blockages, or balloon dilation of the strictures.
I will be going for a liver biopsy once my flare-up calms down to see just how much damage and what stage the disease is at.
Written by “Scared and Worried”
submitted in the colitis venting area