Primary Sclerosing Cholangitis is a chronic progressive liver disease that affects the bile ducts. Many people live with severe fatigue itching jaundice abdominal pain infections vitamin deficiencies and cognitive issues long before the disease is taken seriously. Some of us will ultimately need a liver transplant.
You may not look sick but you can be fighting a battle no one sees.
Living with a colectomy is often portrayed as a cure, but for many of us the journey does not end there. Chronic pouchitis can bring ongoing inflammation, pain, urgency, frequent bowel movements, fatigue, malabsorption, and repeated courses of antibiotics or biologics. Daily life requires constant planning around bathrooms, food tolerance, hydration, and energy levels, while managing complications that are often invisible to others. Even after major surgery, the disease can persist in new forms, reminding us that survival and quality of life are ongoing battles.
You may not look sick but you can be fighting a battle no one sees.
Conditions We Live With
Primary Sclerosing Cholangitis PSC
A rare autoimmune liver disease causing bile duct inflammation scarring infections and eventual liver failure.
Symptoms are often minimized until advanced disease develops.
Mast Cell Activation Syndrome MCAS
A condition where mast cells release chemicals inappropriately causing allergic type reactions
flushing pain gastrointestinal symptoms brain fog and medication intolerance.
Ehlers Danlos Syndrome EDS
A connective tissue disorder leading to joint instability chronic pain fatigue
gastrointestinal dysfunction and autonomic issues.
Postural Orthostatic Tachycardia Syndrome POTS
A disorder of the autonomic nervous system causing heart rate spikes dizziness
blood pressure instability fatigue and exercise intolerance.
Ulcerative Colitis UC
An inflammatory bowel disease causing chronic diarrhea bleeding pain fatigue
and increased cancer risk. Often linked with PSC.
Chronic Pancreatitis
Ongoing pancreatic inflammation leading to severe pain malabsorption weight loss
and diabetes risk.
Finding Our Way
We are not medical experts. We are people living this life trying to survive it. Many of us face delayed diagnoses dismissal fragmented care and a lack of knowledgeable providers especially for complex overlapping conditions.
This site exists to share information research and lived experience while we find our way through these illnesses together. We will update this site as our journey continues.