Janieg here again. I just thought of this and felt it relevant to another topic I read on this site of the procedures ERCP’s. Over 30 years ago my father went to the hospital for gallstones and had an ERCP. While in there they pulled a stone from his bile duct. Day by day he became sicker and sicker until each if his organs shut down and he died…
Well, upon the day I was diagnosed with PSC, I was going in to have an ERCP and read the brochure. It said that during the procedure there is a 1% chance that a person can get pancreatitis. I realized at that point, this is what happened to my father. Up until then it had always seemed a mystery. I was in tears going in for my procedure and when I came out the Dr./gastroenterologist I was seeing at the time said, “You are very sick!! You must find a liver specialist/hepatologist and you will need a liver transplant!” We had to change our entire medical network to get this Dr., who is the best in Detroit, MI and of course upon seeing him it wasn’t as horrific at that point as the other doctors ignorance made it appear to be. It’s interesting how you aren’t told things…until it’s too late. It in the case if my PCS I feel lucky to have a good Dr now and am taking Actigall twice a day so far with coumadin for blood clot in right hepatic vein.
Just thought I’d share this.
Thanks for sharing your story. I am sorry about your dear father. So much has advanced in medical science today that makes it possible to do many more medical procedures in ways that reduce risk of complications and usually very good outcomes. I’m glad your ERCP went well and you are getting the help you need. Just take one day at a time, be proactive in the knowledge and understanding of your disease, keep your family informed as you will need them involved in your care as things progress down the road. And remember, that we are here to support and give you the information you need to better manage your disease. Please feel free to chime in any time. Things do slow down a bit on the forum during the holidays, so don’t be discouraged if you don’t get many responses to your posts during this season of the year. Our folks here with PSC have a hard enough time managing the day to day things of life, and with the holidays there are so many other things to do like shopping, cooking, traveling, etc.
Welcome though and I hope you have a very Merry Christmas!
PSC 2011 / Liver Transplant 2015
I was the 1% who got pancreatitis after an ERCP. Let me tell you it was the worst experience of my life. Luckily we got to the hospital quickly, diagnosed and treated. I was in the hospital for 3 weeks (and on a feeding tube for part of it). I will not have an ERCP ever again.
I’m sorry you had such a poor experience with your ERCP procedure. May I ask, was this done by an advanced endoscopist physician tied with a transplant hospital or with your hometown GI doctor? As you have found out, the ERCP procedure is a very delicate and invasive procedure that has risk of complications. I would not trust any physician to perform this procedure on someone unless 1) they are tied with a major hospital that does liver transplants and 2) the doctor performing the procedure does this procedure day in an day out, not just on occasion. And once you find a good doctor for this procedure I’d make sure you use that same doctor each and every time. Please don’t say ever again, for with PSC this is something that often has to be done multiple times over the years to preserve not only quality of life, but to keep you alive. Without proper bile flow, the liver will fail a lot sooner. I wish you well in the days ahead, and again I’m so sorry you had to endure this pain.
PSC 2011 / Liver Transplant 2015
Hi fcmmark, the Dr who did the ERCP was my local gi. I now have a doctor at the Toronto Centre for Liver Disease so I am hoping this will never happen again.
Thanks for the update on that. The next time you need an ERCP, be bold enough to ask the physician who will be performing it. “Do you do these procedures daily”, or “Are you new to this, are you being trained, etc.”? I don’t want anyone in training, practicing on my bile ducts!!!
Please reach out anytime you have a question. We are here for you all the way through this process. You can survive and live a very long and healthy life. Don’t let PSC get in your way.
Thank you so much fcmmark. It was a relief to finally get a diagnosis however, it is a scary one! I am hopeful that everything goes well and that I just live a normal, healthy life.