Patient Comments: Primary Sclerosing Cholangitis - Complications


What complications have you experienced with primary sclerosing cholangitis? Submit Your Comment

Comment from: Katherine , 45-54 Female (Patient) Published: September 25

I am in early stages of primary sclerosing cholangitis. I have extreme fatigue, sometimes nausea, upper right quad pain, itching, IBS (irritable bowel syndrome). I started ursodiol but it causes diarrhea.

Comment from: Jason, 45-54 Male (Patient) Published: February 07

I was diagnosed with primary sclerosing cholangitis about 7 years ago, but have had abdominal pain for the last 17 years at least. I also have fatty diarrhea, abdominal pain, extreme itching, and fatigue.

Comment from: ajeanna91, 45-54 Female (Patient) Published: May 01

I have not been diagnosed, but I have a lot of the symptoms of primary sclerosing cholangitis. I had my gallbladder removed in 2011. Immediately I started retaining fluid. I could not pass my urine, I would sit and strain for 30 minutes to pass very little. I contacted the surgeon, he said we would discuss at my 2nd week follow up. In 2 weeks I had gained almost 30 lb. and still was not passing my urine. I brought this issue and concern back up to the doctor at my follow up appointment. He simply stated I would need to go to my family physician as it was not caused nor did it have anything to do with surgery and he released me. After numerous tests and being diagnosed with severe edema and peripheral neurology, I continue to have a shingles breakout at least once a year. My specialist that was helping me retired, and I have not found anyone who truly cares to get to the truth. I suffer from severe depression and I am ready to give up on ever being well and living a normal life. I just stay at home and only go out when I have to. I am so embarrassed with the way I look and always have bad breakouts on my face and neck continuously due to infection in my body somewhere. I want to get my life back to at least somewhat normal. I have accepted I will never be the same again as far as my health. I just want some answers and direction to go to get help.

Comment from: Alleif, 55-64 Female (Patient) Published: June 04

I was diagnosed with primary sclerosing cholangitis (PSC) 3 years ago and have been taking ursodeoxycholic acid since then. I have recently been experiencing stomach pains and diarrhea.


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