Hello my name is matt jones. I was diagnosed with PSC a few weeks ago. I was having horrible stomach pain right below the rib cage on the right side. I went to the er and had an untra sound done and they told me that my gallbladder had to come out but they also had seen 2 spots on my liver witch turned out to be nothing but it caused the doctor to take a closer look at me. they did some test and was diagnosed with psc. They are sending me to a specialist to take care of me i guess. I am 31 years old and i cant beleave this is happending to me. ive done alot of recerch and it scares me but ever since they took my gallbladder out i have felt fine. My question is, is that normal? will i feel pain, fatige, itching and fever or any of the other symptoms later? did taking my gallbladder out only temperaraly fix me and i'll get sicker as my life goes on??? oh and sorry, i'm a terrible speller. lol...
Matt, I had a similar situation. I had pain, nausea, etc. due to a bad gall bladder when I was 33 (1998). They removed my gall bladder, and then during imaging to check to make sure nothing was leaking, they saw "beading" and narrowing in my bile ducts. It was PSC. The docs said everyone is different, and I may not get sick for many years, or things could go south much more quickly. The put me on urso (its effectiveness is up for debate) for many years, and I really didn't have any symptoms or do much followup on it for a long time. I would check in with my gastro doctor once a year or so. I didn't get all the MRIs he recommended either. But, don't be like me. Get imaging and labs done as recommended. Anyway, I had a normal life until June of 2012, when my bilirubin went way up, I got cholangitis and pacreatitis all in the same 2-week period or so. That's when I went through the transplant evaluation, was in and out of the hospital many times for various cholangitis attacks and ERCPs, and got listed for transplant. It takes a while. I had horrible itching, jaundice, and fatigue for a year and a half. I just had a liver transplant on October 10, 2013, and am recovering pretty well so far. All that to say that you may be a person who doesn't really have issues with your PSC for a long time, or, depending on the amount of damage (if any) you already have, you may have problems sooner. There is no set course or timeline to attach yourself to, unfortunately. I would seek out a good liver specialist and stay current on testing, if he/she recommends any, even if you feel fine. Good luck.
I too had my gall bladder removed and most likely the reason it needed to be removed was my PSC had blocked up and caused damage to it. Having my gall bladder out did make me feel better. I am sure your specialist will work with you to understand PSC and the possibility that you will have periodic flares with it and there are medications that can help with that. My situation was one that would go for good lengths of time and not bother me at all. Having bloodwork to check for elevated levels and knowing what to look for and call your doctor when you see symptoms helps in controlling your health. I've had PSC for about 20 years and I still do things I want to do and every person's journey with this disease will not be the same. Educate yourself, be sure to learn signs of symptoms, and if you are asked to take a medicine, please do. I've raised 2 children, taught high school and have recently retired and am thinking of return to the work force. You control your PSC, try not to let it control you. I hope for you the best and believe you can have a wonderful life, you just happen to also have PSC.
Hello Mattj. Welcome!
My fiance is 31 as well. He had read the article below and found some comfort in it.
http://www.pscpartners.org/20s30s
Reading up on your condition is great, however do not get sucked into the dark vortex of the doom and gloom. I think it is good to soak up information, just try not to let it overwhelm you. As far as what symptoms you will have... who knows. The people have have commented to your post did a great job in responding to you. They are right. Try not to live with PSC defining you. Take it day by day. Do see your doctor regularly, take control of your diet and drinking, stay up to date on lab work and as annoying as it may sound, try to relax. I understand this is your health and you have the right to be worked up but just as the other members said, you can still live a great life. This is an awesome group of people that have given a great deal of real life experiences and advice to me personally. It is comforting to know people out there understand you.
Take care.
-G
Oh! Your bad spelling is A-OK with me. Lol.