Hello Folks,
I came across this great site a number of months ago and have been doing lots of ready; especially regarding the vancomycin stuff.
I thought I would jump in here and share a bit of my story.
I was diagnosed with psc in 2003 ish around the age of 14 with a uc diagnosis the following year. Life carried on for me being an active teenager but over the years I had to slowly do less and less, especially with regards to sports.
The uc didn’t give me much trouble in those days and I would get a yearly flare up of cholangitis. Things kept slowly going downhill until fall 2011 when I became quite ill, ending me up in Windsor hospital over the month of Dec. That was quite the experience as my ascites veins burst in my throat while there. Rather disturbing to say the least.
From there I went to London hospital where the liver team is and I waited a week before getting my transplant.
After transplant, I recovered very quickly and was doing quite well for the first year or two, when my uc started to really kick in. Since then, it has been an roller coaster of ups and downs dealing with uc.
Two years ago in the spring of 2019 my Alk. Phos. liver enzyme number was becoming rather elevated and the decision to move forward with an ERCP (after an MRI indicating a narrowing of the native bile duct) to investigate a native bile duct narrowing was made. At this point, the attempt to change my Tacrolimus medication to Sirolimus was also made. This procedure led to an allergic reaction to the Sirolimus medication and a bacterial infection of my native bile duct. I was promptly switched back to Tacrolimus with a course of Prednisone to counter the inflammation resulting from the bacterial cholangitis and had a liver biopsy to diagnose the bacterial cholangitis.
From there I had repeating episodes of cholangitis (with antibiotic (Cipro. + Flagyl) treatment) finally leading to a full constricting of my native bile duct which was diagnosed via another ERCP in November 2019. This led to the decision to proceed with a choledochoduodenostomy to remove the blocked bile duct in January 2020. This surgery led to a number of post surgery complications and extended recovery time. Since then my Alk. Phos. blood work numbers have continued to be significantly elevated.
I was placed on the drug Vedolizumab (Entyvio) in an attempt to bring my active Ulcerative Colitis (UC) under control in hopes that this would also reduce the strain on liver. This has had a noticeable effect on my UC, however my other liver enzyme (AST, ALT, Bilirubin) numbers have become elevated with a slow and steady increase in my bilirubin.
This is where my most recent events have transpired with talking to my doctors about vancomycin, which has not gone so well. My recent appointment left me with a bad taste in my mouth, prompting me to write a letter. The last couple paragraphs above here are the beginning of that letter. I will post it in a separate post.
Anyway, maybe I can be of some assistance to some folks on here, as I’ve learned a lot over the years in terms of keeping my quality of life up surrounding all of this.
Simon
I am also more than happy to answer questions regarding my specific situation.