Like most people, I had no idea what Primary Sclerosing Cholangitis was until a doctor informed me I might have it, but he wasn’t quite sure (more on this and my diagnosis in the next post). I want to spend a few minutes sharing what PSC is to help answer some of the common questions.
PSC is a rare chronic liver condition that predominantly affects older men – I guess I like to break the mold. Essentially the bile ducts inside and outside the liver become inflamed which leads to scarring, narrowing of the ducts and eventually blockages. This damages the liver which can potentially lead to liver failure and the need to have a transplant.
There is no known cause of PSC at this time but it is often found in individuals with Ulcerative Colitis. (My journey actually started with a diagnosis of Ulcerative Proctitis which is a less severe form of UC.)
And no – PSC is not caused by drinking alcohol. My family and friends reading this are smiling because they know how little alcohol I drank pre-diagnosis that it’s a joke. 🙂
Common symptoms of PSC include itching, fatigue, nausea, vomiting, insomnia, abnormal stool/urine, etc. I had not been experiencing any of these symptom upon my diagnosis and until September 2016.
Unfortunately, there is no cure for PSC at this time, but there are medications and surgical options to help alleviate symptoms if needed. One of those surgeries can involve having a stent inserted in the bile ducts to provide relief. However, even if you can manage the symptoms, PSC can sometimes continue to damage the liver to the point where a transplant is needed. And even if you get a transplant, it’s possible PSC can recur. The good news is there are some great trials being conducted currently and a number of doctors are hopeful a cure can be found.
There are currently no dietary restrictions suggested for PSC patients. However, there have been a variety of one-off success stories of dietary changes that have lead to improvement in symptoms and slowing progression of the disease. I’m currently testing out a gluten free diet to see if that helps with some of my recurring symptoms. My thought is that it can’t hurt to try.
When people find out I have a liver condition, the most common question I get is, “Can you drink alcohol?” It’s typically recommended that anyone with a liver condition shouldn’t drink alcohol, so I don’t. A number of my doctors have indicated that a drink on a special occasion wouldn’t hurt, but why risk it if I don’t need to?
That’s PSC. For those of you stressing out thinking that I need a liver transplant ASAP – don’t worry! I’m in the very early stages of PSC and my liver is still healthy. The condition generally progresses slowly and in some cases, not at all. The good news is, many PSC patients live long healthy lives with PSC and/or post-liver transplant.
While living with PSC may really stink at times, it isn’t anything I can’t handle because I know God is in control.
Thanks for joining me on this journey.
~Liver Life to the Fullest