Hi! This my first time posting. I went to my first appointment today with my hepatologist, and she said that she’s not convinced I have PSC. She thinks I may have Secondary Sclerosing Cholangitis with the main problem being my gallbladder and my, as she said, “tons of gallstones” and the stress those stones had been putting on my bile duct over the past six months or so. If this is true, that’s good news for me! I’ll be having my gallbladder out in March. Does anyone have this experience? I was reading about SSC in other topics, but found that most of the time those posting had much larger problems than gallstones.
Emily,
I’m glad you got some good news about the PSC. Hopefully someone will chime in with an answer to your questions. Have they prescribed anything to treat the stones like Ursodiol? That might bring some temporary relief while you wait on getting the gallbladder out. Keep in mind that sometimes those stones can get lodged in the bile ducts of the liver. There are times when this happens that they will do an ERCP to extract the stones. Hopefully this will not be the case in your situation. Take care and let us know how your surgery goes.
Mark
I actually have no gallbladder pain at the moment. I feel better than I have in months! We found all this because of s gallstone getting lodged in my bile duct. I had an ERCP in January to take care of it. That is how they found the stricture. After that I turned yellow and felt awful. I was referred to Froedtert in Milwaukee and they did another ERCP. Apparently the stent they originally put in was just too small and everything was backing up. At Froedtert they did a second ERCP, took out the stent, and used a balloon to open things up. BUT I still have a lot of stones so they want it to come out. I’m so glad I feel well for the moment, though! I haven’t felt this good since Christmas!
Hi Emily,
I was diagnosed with SSC, finally, last February at Mayo Clinic. My situation is different. I had a common bile duct cyst years ago. I had surgery at Froedtert to remove it along with my gallbladder. Everything was great until 2014, seven years post surgery. I got really really sick, my alk phos was over 1000, I had a bile stricture. I went back to Froedtert and had to have a stent surgically placed,because of my anatomy from my prior surgery, the tube went thru my skin, thru my liver to my intestine so my bile could drain out of my liver. The told me I’d have to have the tube in for a year then my duct would be stretched enough where it should stay open. A week after the tube placement I ended up with sepsis and was in the hospital for a week. I had to get the tube upsized. They told me I’d have to get the tube upsized about 4 times thru the year. After 8 tube replacements, 2 bouts of sepsis and being so sick for 5 months, I had to have same surgery again. I was good for about 7 months then had bouts of high fevers, pain, chills, etc every few months but I’d get better. My GI doc said it couldn’t be cholangitis because I got better and I’d be way sicker. I always felt it was cholangitis attacks. fevers, chills, pain started happening more often and I felt crappy all the time. I ended up going to Mayo and after further testing I was diagnosed with SSC due to repeated untreated bouts of cholangitis.
Hopefully your surgery will help you. But, if you have bouts of fever, chills, pain etc, get treated with antibiotics so you don’t damage the ducts further.
Best of luck! Keep us update.
Oh, I’m sorry to hear you’ve had such a tough journey! Thankfully I’ve had no signs of fever and chills throughout this entire process, and the only pain was directly associated with stones (if you don’t count IVs…ouch!).