We are very new at this. My husband found out he had Ulcerative Coltis at age 8. Thirty years later we just found out that he also has PSC. He is a very very active person, and is has literally no symptoms besides elevated liver counts. He just had an ERCP, and they put a stent in his pancreatic duct, and sphincterotomy. We are just dumbfounded. He feels totally fine. At what point do people generally start to feel symptomatic? All we see if 10-15 years liver transplant or death.. is it really that bad? We are looking for hope, and encouraging stories.
When people start to feel symptomatic I think depends on the person and the way the disease progresses. Mine didn’t get caught until a later stage and I had already been symptomatic for years.
But really, where there is life, there is hope. Medical science is progressing rapidly in this area, and scientists are working hard to make transplants safer and more available. Who knows where they will be in ten or fifteen years? I don’t know if that is the most comforting answer, but it does give me hope.
I also have PSC and Crohn’s Disease. It is certainly not the rosiest diagnosis. But there is always hope.
My daughter has crohns and psc and we almost lost her in 2012 when we were blessed with a liver for her. We started her on vancomyasin for her psc but only found out about it in 2011 which in her case turned out to be to late. If you google Dr Cox, Stanford and PSC you should be able to pull up his info. He is a very gracious doc and I spoke to him on numerous occasions, he appears to have good success with putting PSC in remission he aslo seemed somewhat disheartened that the Mayo study was being performed with a low dose. Vancomycin in capsule is extremely expensive, A coumpounding pharmacie can buy is unmixed in IV form and compound it for a resonable price; I only wish I had found it earlier as I believe that we would have avoided the need for a transplant. We were also blessed early in my daughters chrons disease to find Dr. Richard Kast who has pioneered the treatment of UC and Chrons with wellbutrin which also loweres TNF just like Humara or Remicade without the side effects. While my daughter was waiting for her transplant I was contacted by a GI at her hospital who was interested in why we were using wellbutrin, he confided in me that he had been in research prior to private practice and was getting ready to publish research on remicade demonstrating that it causes multiple sclerosis, he told me that he was in no uncertain terms told that his career would be destroyed if he published.
I just can't thank you all enough for your responses.
We had some good news. The doctor called, and the "gunk" they took out of his bile duct does not have any dysplastic cells! Small victories.. are still victories!
When you cite 10-15 years to requiring a transplant, it is my understanding that is old information. When I first became aware of PSC in late 2010, average 10 years to transplant was the most common number I saw. I've read that they are detecting it earlier, and up to 20 years average from diagnosis to transplant is more common now.
I've found that the key is simply to take care of myself the best I can -- eat well, of course no drinking, rest, minimize any unnecessary medications, prescription and OTC, because they can be hard on the liver, exercise as much as I feel up to, etc.
I am nearly 44, male. Diagnosed with UC at 13ish. Colon removed at 23. Diagnosed with PSC at 29. Been without symptoms now for fifteen years. Biopsies show the liver is worsening. Stage 3 PSC when I was Stage 1 at diagnosis. I assume I will get sick, as it seems everyone eventually does. But feel very lucky right now.