Billiary Cirrhosis

[AllHis]

ok. I'm desperate for answers... 3 years and counting.

I was wondering if anyone has billiary cirrhosis. I'm struggling for a diagnosis. I'm now looking at an evaluation for Sjogren's and Scleroderma. One of the comorbidities of Sjogren's is billiary cirrhosis. (Very interesting...)

Just diagnosed with Barrett's Esophagus. I need another EGD for more biopsies. Dysplasia is undetermined. And my LES isn't working.

Soooo frustrating. I had my gall bladder removed 18 years ago. Never any stones, it just stopped functioning. I tell doc after doc, it's not acid reflux, but bile reflux. PPI's are killing my kidneys and so I continue to advocate for myself. This is taking a toll.

[Ktltel]

Hello, on this forum Healthunlocked, there is a group called PBC. It used to be called Biliary Cirrhosis but has been renamed Primary Biliary Cholangitis or PBC. It's a progressive disease that currently has no cure. Our own bodies are attacking the biliary system. This leads to fibrosis, and then ultimately Cirrhosis. There are two medications out that supposedly slow the disease down for some. Ursodiol and Ocaliva. They start with Ursodiol. I've had PBC for atleast 10 years and am now in stage 4 fibrosis. It's scary. I'm 61. If and when I move into acute Cirrhosis.....liver transplantation is my only hope to stay alive. It really is a silent killer as most days I feel normal. I suffer from fatigue and the occasional upper right quadrant pain. Other than that.....I get along ok. Hope this information helps. Please keep in mind....my doctor states most people with PBC die "with" the disease...not from it. Again, for most people it is a very slow progressing disease.

Stella

[AllHis in reply to Ktltel]

Thank you! Best wishes!

[SteelersFan14]

My mom had PBC. One morning I left to go to work and 6 hours later she was jaundice. I brought her to the ER and she was admitted to the hospital for almost 2 weeks. The entire time there was a debate as to if it was a gastroenterology or cardiac issue. Turns out it was both. There was so much pressure on the right side of her chest and heart that it was putting pressure onto her liver.

Long story short, Ktltel is right (although I'm not a doctor). My mom died with PBC but not of it. It was ultimately her heart issues that killed her although I found out when my mom died that her GI doc that her PBC progressed quite badly.

[MLB_77 in reply to SteelersFan14]

So she didn’t know she had it? I’m so sorry. How do you test for it? What do you look for ?

[SteelersFan14 in reply to MLB_77]

She didn't know she had it until she became jaundiced and had very scans of her liver. She died almost 5 years to the date of her diagnosis of PBC.

[AllHis in reply to SteelersFan14]

So very helpful. Thank you so much for responding. It is so difficult to hear about your mom. Take care, my friend.

Health & hugs!