Hey all,
I had my ERCP done in October. The dr was convinced immediately that all of my liver and duct woes were easily solved by the answer “papillary stenosis.” He cut the duct and called it a day without exploring the other bile ducts in the least. Here I am two months later with my enzymes still above normal.
The Dr who did the ERCP is not my GI here in town. My GI has now taken me off of birth control for a trial period and then more testing come March.
I’m disappointed that the dr didn’t do everything he could while he was performing the $16,000 ERCP procedure. I’m also frustrated that I’m right back where I started. I must admit I feel much better now that my duct is open and flowing regularly as it was 100% closed off. So the entire thing wasn’t in vain.
My husband is in a bit of denial. He wants to believe that the numbers will go down and that this will all go away. I have had elevated enzymes for over three years. It’s time to get answers, yet all I want to do is put everything off.
The liver is a complicated thing that controls a lot. Keep me in your prayers. Any thoughts or nice words would help.
A combination of tests should show whether you have PSC.. Blood tests showing high liver enzymes are part of the condition. In the later stages of PSC these levels do not generally drop following the operation you describe. You can read up on various websites what the stages of development are in PSC. Some of the best.are by the Mayo Clinic, such as:
If you have not been diagnosed with PSC or PBC and suspect you have it, a hepatologist at a teaching hospital is the specialist you need. PSC and PBC (Primary Biliary Cholangitis) are rare. My GI would not make the diagnosis, though I think he suspected PSC. Instead, he referred me to a hepatologist. The diagnosis was made from an MRI, Liver Function Tests and a liver biopsy (minor surgical procedure).
I did not have my first ERCP until nine years after diagnosis. It was done because my bilirubin went up and my MRI showed narrowing of my bile duct.
If you are feeling confused and worried, you are normal. Getting to know what the disease, if any, is will offer some peace of mind and let you be proactive about healthcare. Ask questions to become informed. I was diagnosed and then treated for PSC 12 years. I have a new liver now and am in very good health. Please keep a good outcome for yourself in your thoughts and prayers. That is so important.
Thank you so much for your thoughts and suggestions! I have done extensive research on PSC as that is what my GI thought I had going into my ERCP. Now that the numbers haven’t gone down after the stenosis is gone, PSC and PBC are still on the table. I am very positive and I know that no matter what happens I will fight for my health and the betterment of my life for myself and family!! Again, thank you!!!