Secondary biliary sclerosing cholangitis

[Theliverpatient]

Looking for people with the same condition as mine

Secondary biliary sclerosing cholangitis

( after hepaticojejunostomy following a laparoscopic cholecystectomy with complications due to medical neglect.)

[Hidden]

Hello,welcome to this forum.

Sorry to hear you have complications following your cholycystectomy.

You have quite a rare condition but I do hope that someone here on the forum will be able to share their eperience with you.

regards

[Ally1966]

Hi i had micro surgery for many gallstones 29 years ago and I was the first patient in Northern Ireland to have it. I was waiting for the big surgery and I was approached by the consultant as i had 4 very young children, i jumped at the chance. Despite my mammy begging me to go for the proper surgery. I didn't know i was the first or that I was essentially a Guinea pig. I had 65 gallstones and I could go home the next day. I went home despite being in terrible pain and sickness. I was home 3 days when I became very ill and jaundiced and I spent 2 weeks in HDU. Since then ive had several bouts of pancreatitis and billiary sepsis and ascending cholingitiis. Im constantly fatigued and it has ruined my life. I was diagnosed with the condition you have. I filled in forms to get my hospital notes from the hospital where I had this surgery, but they had dissapeared?? I don't drink alcohol and never have done but i have other complex health issues. If i could turn back time I would have waited. My lfts are always deranged and I have spent 2 months at a time in hospital. I had 3 ERCP,s but they made me very ill so im left living in constant pain and nausea. My bile duct gets blocked as it doesn't work properly. I wish i had listened to my mammy. I was 24, im now 54 and it has ruined my life. Thank you for listening i hope I can help you in some way. Xox