Well, I still don't have definite answers. His doc says that it could be caused by a narrowed duct (not seen in ERCP), inflammation caused by the ERCP, or just that the stent is narrow and therefore doesn't let the enzymes pass freely (seems supported in this excellent PSC bit:
http://www.hopkinsmedicine.org/gastroenterology_hepatology/_pdfs/li...).
Let me share what has been going on with John and see if anyone has any advice/feedback (which I would appreciate greatly).
John's symptoms started this summer with fatigue, pancreatitis, gallbladder sludge, and high liver enzymes. His dad and brother have UC. His doctor at the time subjected him to huge amounts of tests and procedures, including a colonoscopy/endoscopy in July that was normal and showed no inflammation. His ANCA levels were normal.
At the end of July he started itching at night, and it got to a point where we were up every night, all night, doing cold compresses over all of his body with round the clock Atarax and Benadryl. The itching only improved with Cholestyramine. He had his first ERCP in August where a 1 cm stricture was found in his common bile duct and a stent was placed. There were no other abnormalities in his ducts and the docs at UCSF told us they thought it was caused y a congenital malformation.
It is worth mentioning here that he was given Augmentin after the ERCP that made him very sick with diarrhea. At the time of the ERCP he was only taking Cholestyramine and his stools were normal with that.
After the ERCP John's stools were normal for a couple of days, and then he got oily diarrhea with the Augmentin and even after stopping the Augmentin had abnormal stools until he got on Creon (pancreatic enzymes). His amylase and Lipase were normal and all his other blood tests normalized within 3 weeks.
Before his second ERCP John had halved his Creon dose and was feeling well. He did a stool test though that showed high calprotectin levels indicative of inflammation in the intestines and an IBD (1200). he still had no symptoms of an IBD.
His second ERCP was in September. The doctor said that the stricture was a lot better. He replaced the stent with another one the same size and said he thinks that he won't need to replace it next time (just balloon dilate it). Again there was no other bile duct damage. John was given Augmentin again (last time!!!). He developed diarrhea and huge mouth sores. Somehow his poop was abnormal with lower enzymes and we had to up the Creon dose to normal levels again.
His new doctor ordered Prometheus tests. They came back VERY positive for UC. So now they are saying that he has PSC and want to do a colonoscopy and a liver biopsy. I am fine with the liver biopsy, but I don't understand the need for another colonoscopy as he is still asymptomatic for UC. Any idea what they might be looking for?
John is feeling good right now with the CREON and the stent. He is set to do blood tests next week. Another question I have: if the stent is removed, the stricture is gone, and there are no abnormalities in the ducts, should we sit and wait with regular blood tests (my preference) or start him on Vanco? What are your experiences with disease progression? what do you know about c-diff?