Dear neil,
primary sclerosing cholangitis is a condition of unknown cause in which there is inflammation and scarring of the bile ducts. The cause is unknown but many patients have inflammatory bowel disease (ulcerative colitis)suggesting an association between the conditions. The symptoms are those that you describe: fever, abdominal pain and often jaundice. At present, we lack effective medical therapy for this condition. Antibiotics are often necessary for acute symptoms. As was done in your case, it is necessary to exclude gall stone-induced cholangitis as the cause for the symptoms.
Dear Neil,
I have also experienced similar problems. I had my gall bladder out 2.5 yrs ago and developed narrowing of the bile duct. I had 2 ERCP's and a sphincterotomy which unfortunately was not successful as the bile duct stenosed within 5 months. I had then had an operation in January (1999) called a 'pancreaoseptoplasty' where by the bile duct and pancreatic duct are re--opened like a sphincterotomy but further up each duct. This is a new operation done for bilary dyskinesia. I continued to have RUQ pain and then developed an totally blocked pancreatic duct leading to acute and chronic pancreatitis. Have you heard anything similar to this as I am now possibly facing further surgery (whiples op.) Needless to say I am not keen to have further surgery. Please keep in touch. I would be very interested to hear of your progress.
HI NEIL
I suppose I should start by saying I have been diagnosed with SOD. I have had the last 6months from hell. I like you have had 2 sphinterotimies,and now looking down the barrel of a third, as I understand the only firm diagnosis comes from a Memnometry being performed, this is via an ECRP and A Attack is induced, the pressure of the Sphinter is measured according to the outside pressure. I am having one of these tomorrow.
I have only once in the last 6 months presented with the classic symtoms of SOD and that was where my liver funtion tests were abnormal. At its worst I spent 2 weeks in hospital on pain relief, and have been sent home with my own narcotics to control the pain,. I have had 2 weeks pain free and now been 5 weeks out of hospital,a record since JUNE 99.
My symtoms were uncomfortable to acute pain in the upper right quadrant, this pain was like I'd had an attack of Billlory Colic, or a gall bladder attack (mine was removed 3 years ago. the only other thing that was consistantly found was that My potasium levels were always very low, and that there was blood in my urine. I've had utrasounds xrays, blood tests, colonosgapgy, gastrosgraphy . After what I have been through, I can say that there is not a set of symtoms, as all I really have is the pain, that can nt be associated to any thing else. speak to your Gp and see if they can organize a billiary memometry.
good luck
After spending a fortune on various pills and potions to overcome indigestion I now feel that I may have problems with my sphincter of oddi. I had my gall bladder removed three years ago and had further complications with several attacks of pancreatitis after the endoscopy that was performed on me went wrong and dye was injected in my pancreas. Neil's description of the site of his pain seems very similar to my own with also a rather strange itching sensation. Fortunately the attacks that i have are not painfull but very uncomfortable and feel like a tight band around my waist that gets tighter and tighter. These attacks last for a week or so then go only to come back again in a couple of months. Any information anybody may have on this would be appreciated and I must say after my experiences before I am loathe to consult a doctor again.