Hello all. Been a member here for quite a few months but I’ve just been lurking, looking for answers to my questions i guess.
It felt weird to actually post on intro because i was hoping my condition would improve but this is my new normal i suppose.
I’ve only recently gotten a diagnosis for sclerosing cholangitis after a year of healing from surgery to repair my liver. i was in a car wreck in September of last year and sustained a bad liver laceration, almost bled to death before making it into surgery. Was in a medically induced coma for a week, was on a vent and had a chest tube. Spent another week in that hospital after stabilizing and waking up then two more weeks in a rehab hospital for intense therapy to help me function again. Wasn’t able to walk without help or even go to the bathroom or turn over in the bed. Spent three months total off work and recovering. Went back to work in December and thought i was going to be my old self again. Then the itching and jaundice started in February. They did and MRCP and scheduled me for an ERCP the next week. They were only able to dilate, too much stricture to place a stent. So here i am. I’d never had any illness or even been hospitalized and one car wreck has changed my life forever in that regard. My hepatologist tells me it is really rare to get this diagnosis from experiencing a trauma but i get to be one of those lucky few lol. Yellow pretty much all the time. I’m on Urso 500 three times a day, and take zofran and atarax for symptom management. Was recently started on questran to help with itching but nothing really seems to help. i try hard not to scratch but as I’m sure you all know it’s difficult, i have scabs from scratching so much. The fatigue is just as bad, i don’t seem to have he energy to do things like before. Used to be an avid hiker and was very fit and now i mostly sleep.
Sorry to drone on. Trying to accept the facts and find ways to manage the symptoms better and get back to my old self as much as possible with this diagnosis. Thanks for listening.
Good to hear from you and thanks for posting. Everything you describe are classic symptoms of PSC. Amidst the fatigue I want to encourage you to try and do at least 30 minutes of exercise a day, even something as simple as walking slowly up and down your street or on a treadmill. It’s very important especially as the disease progresses that you try to maintain your core strength. That will be so important if/when you need a transplant. Another option for your itching is a medication called Rifampin. I was on 300 mg twice a day for four years from diagnosis to transplant. It’s the only thing that alleviated my itching 98%. Ask your doctor about it. We are here for you to help in any way. Thanks again for your post.
I was diagnosed with PSC in 1988 and became symptomatic in 2010. I am on the transplant waiting list but feel great most of the time. As far as the the itching symptom, I have had the most success with rifampin and hydroxazine. My itching was terrible every night about 3:00am for months when I asked my hepatologist to be put on rifampin thanks to a suggestion I found on this website. It took about 2 or 3 weeks for it to work but I have not had any itching for the last 9 months. Best wishes, Make every day count!
Good to hear from you Happycamper. Glad the Rifampin brought you the relief you needed from the itching. That’s the only thing that would work for me.
Thanks for the suggestion. Had labwork done at my last visit when she started me on the questran a few weeks ago. Bilirubin was 12.5, ALT was 79, AST was 86 and alk phos was 618. She started me on Levaquin 750mg for 14 days then I went for more labs. Bilirubin is 9.5, ALT is 275, AST is 373 and alk phos is 965. Frustrating. Back to MRI I go on Monday.
Glad your bilirubin has come down more. I tell you though with that high of bilirubin I’m still suspicious of a stricture. I’ve had times when they couldn’t dilate to get into a particular duct, then the next time around, the same doctor took a little more time and effort and was able to finally get through. As long as that number stays that high the itching will certainly need something to keep it under control. Those ALT and AST numbers are really high. The alk phos as well. For me my alk phos never got above the low 400’s.
I know the fluctuating numbers can be discouraging but hang in there. Have you run your MELD score lately. Keep an eye on that as well. If it gets much above 12-15 I’d be seriously asking your hepatologist for consideration for transplant listing. That number might sound low right now, but it can climb pretty quickly if the conditions are right.
In case you don’t have it, here’s the link to run your MELD score - https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
According to that, my MELD score is 15.
When they did the ERCP in March, they said they couldn’t even get in the right common duct at all because there is a large ball of scar tissue blocking the opening. That side of my liver sustained the most damage from my car wreck. They said they had difficulty getting in the left common duct and the surgeon performing the procedure is supposed to be the best but I dunno. The doc I saw a few weeks ago is one I was just referred to; she’s the director of the transplant program here so I guess that must mean something. Guess I’ll know more after my MRI on Monday.
Thanks for the info. I’m lost with all of this. It’s all happening very quickly so when I get used to the idea of something, it changes then I’m lost again.
Hopefully you will get listed for transplant soon. You might ask if they can cut through that scar tissue if it’s not too extensive during an ERCP and get on up there to clear the duct. Not sure if that’s even possible but possibly a more experienced endoscopist could do something more.
I wish you the very best in your tests next week. If and when you get to transplant, don’t be overly fearful of the whole process. When it’s all over with barring any complications, you will feel better than you have in years. One day after transplant for me was 200%+ better than the years before with PSC. Such a dramatic difference of life.
Happy, this is the rollercoaster ride known as psc. It will test your patience, your stamina and your sense of humor. And granted, it’s not easy, physically or mentally.
Remember that knowledge is power. Here is a link for the interpreting the bloodwork tests we get:
Hope it helps.
Just wanted to let you know I love reading your experience and so appreciate your raw words of both the pros and cons. Mixed in some humor. Keep that humor going as sometimes a smile and laugh is the best we gonna get.
Love, Peace and Light to you!