Carolis Disease

A close friend has been diagnosed as having a very rare disease called Carolis. He is 36 and has been suffering from gallstone attacks or cholangitis these past few years. He has been to specialists and surgeons and received a range of advise from gall bladder removal, yes endoscopy no endoscopy, rightlobe removal to liver transplant. He has lost of weight,otherwise between attacks feels quite normal. Ofcourse he would like to treat his condition non surgiocally if possible..what is the latest research is their any medication that will help him live with this disease?

[Thomas D Schiano, MD]

unfortunately there is no medical treatment for this entity short of antibiotics for episodes of cholangitis.  I really do not think surgery is a viable option, unless it primarily involved only 1 lobe of the liver.  this would need to be carried out at a major liver center.  i am somewhat concerned about the weightloss.  rarely, patients with caroli's can develop cholangiocarcinoma.  You definitely should be treated by a liver specialist.