A Day in the Life of a PBC Patient

Gail Wright of the Canadian PBC Society talks about the symptoms that hinder a person with primary biliary cholangitis.

Primary biliary cholangitis (PBC), previously known as primary biliary cirrhosis, is a slowly progressive bile duct disease, which results from chronic inflammation of the small intrahepatic bile ducts.

[HamabaJuJu]

May God assist them and there be treatments discovered.

[biancajade]

I am very early stage and what she said about fatigue is so true.

[lauriefrost]

Thank you for this and for the work that you do, especially for those of us who can't do it.

It is the itching I dread. I haven't had that. But I have had multiple esophageal bleeds to the point I had a shunt (TIPS) installed and one bout of hepatic encephalopathy. Thank god for the internet or I would have only my daughter and husband to communicate with directly most days. It's the fatigue -- if I make plans, I end up cancelling. And the meds for the disease + Sjorgen's syndrome (dry mouth) have destroyed my teeth to the point I am embarrassed to meet new people.

[connieleary]

thank you for this honest explanation.

[veronacoleman]

As for the fatigue I use to think I was lazy, but could do nothing about it. When you tell the doc they give you a strange look like yea tell me another one. (Lie). My brain has gone on general strike. My short term memory is shot to pieces.

[sprmesavage]

Its crazy how ppl think i look healthy But im suffering from itching

[veronacoleman]

Ain’t that the truth the itching can make you go postal. People think you have fleas or something.but it drives you mad.

[leoarmitage]

My grandad just got diagnosed with this ten years to live So gutted

[Germatti]

I have several autoimmune diseases and am taking low-dose Naltrexone which is helping with many of my symptoms. I wonder if it wouldn't help themwith some of their symptoms. I had a stent placed during an ercp but the doctor perforated my common bile duct then the stent migrated out. I was down to 98 lb at one time. I'm still having problems. The itching can drive you crazy.

[hollyfisher]

Yes, like "Spiders" crawling up my back, under the skin, with an odd
tingling numbness, then the SO
annoying itching; I had to finally diagnose myself after my Docs could not put all the pieces together until recently, because of a positive antibody blood result~
Being that I have had Systemic Lupus for 25 years, this can be
one of the many complications of that also hard to treat disease...
Truly watching my chronic food allergies seems to help some and just have to keep on truckin' along somehow as we all do in this life❣:)