When I was diagnosed with primary biliary cholangitis (PBC), I found it difficult to explain to my loved ones what exactly was happening to my body. I had 5 years of healthcare experience, so I understood the medical terminology, what autoimmune disease is and what happens with PBC. But turning that into simpler terms was a little difficult at first, especially when explaining autoimmune disease.
An immune system off to war
Here’s the explanation I’ve found works best. When thinking about autoimmune disease, imagine that you have a group of soldiers in your immune system that protect your body from infection. The immune system finds something it needs to fight off, so it sends a group of soldiers (or the body’s natural defenses) out to that specific area of the body while the rest of the soldiers remain in their original location. The soldiers fight off whatever was deemed to be an infection — usually foreign invaders, like viruses or bacteria.
With autoimmune disease, the body mistakes its own healthy tissues as foreign bodies. So, our bodies attack healthy cells because our immune system can’t differentiate between healthy cells and foreign invaders. Once those soldiers finish fighting, instead of heading back to their original “campground” those soldiers stay where they are. This happens repeatedly, so the body has multiple areas where these soldiers are hyperactive and fighting off whatever they think is an invader. Inflammation builds up in these areas and become widespread.
In PBC, our body thinks that our bile ducts are foreign invaders. So, our body attacks the healthy cells in our bile ducts which, over time, destroys them. Bile is needed to help process nutrients and aids digestion. When the bile ducts become destroyed, bile can no longer safely pass through them. The bile backs up into the liver because it has nowhere to go, and liver damage results.
One form of damage is ascites, or extra fluid in the abdomen. I’ve never personally experienced it, but I do know that it can make your belly feel rock hard; it is painful, and can make you feel extremely bloated. When the bile has nowhere to go because it can’t get through the bile ducts, it can also leave us with scarring or fibrosis, then cirrhosis and finally liver failure requiring a liver transplant.
Ursodiol, the first-line treatment for primary biliary cholangitis, helps to protect the bile ducts. This medication helps to thin the bile our body produces. Thinning the bile helps it to naturally pass through our bile ducts in an easier and safer way to prevent the bile ducts from being destroyed. Our treatment is life-long, and we need to take medication every day to help protect our bile ducts and liver.
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