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...
Apparently it is not uncommon for doctors to focus in on gall bladder removal, especially if they find gallstones. That's what happened to me and of course it had no effect on my PSC other than to then send me to a real liver specialist.
You can live fine without a gall bladder so I wouldn't worry about it at all. That's probably why many are so keen to have it removed as it is a low risk operation these days with endoscopy.
Did they take a liver biopsy while they were in there to remove your gallbladder? They should have, as that is the only way to really confirm PSC as well as what type you have and how bad your liver is or is not.
Matt
Hi. A similar thing happened to me. I had gone to Doc just feeling run down, no energy and generally exhausted to the bone . The doc did blood tests and my LFTs were high. They sent me for an ultrasound on liver but all ok. I went back a year or so later to a different Doc who ran same tests and LFTs still very high and sent me for another liver ultrasound. All they found was a gallstone the size of a pin head but nothing else. The LFTs didn’t come down and my Doc said I was probably just one of those people with naturally high LFTs. Then I started to get bouts of pain like you and went back to Doc and she sent me to a gallbladder surgeon as her best guess was it was gallbladder pain. I had a MRI scan and this showed I had an issue with liver - in fact it showed that my left lobe had pretty much atrophied to the size of a fingernail! Not sure how the 2 ultrasounds in 2 years didn’t pick that up!! I then had a CT scan and was sent to a liver surgeon who couldn’t help but said it probably was PSC. Since then I have been referred to a specialist team for further tests and ongoing monitoring. I did get my gallbladder out in March this year and they did a liver biopsy at same time. The reason I had my gallbladder out was the view was PSC can make it worse over time so it’s a complication I don’t need in the future. I have now been diagnosed just over a year and am classed as asymptomatic as up until recently I have only had intermittent bouts of pain and fatigue. More recently I have started with itching which has got me down a bit of late - most especially because the stuff to take for it is like drinking wallpaper paste!!! I think from my research that everyone’s experience with PSC is different - for some they have it for decades with no issues and for others it progresses really fast. I felt daunted when I was first diagnosed but have joined a few support groups which I find a real help. Now I just take it day to day and try not to worry about it as I guess it won’t change any outcome!! I have not drank any alcohol since diagnosis but I am finding that a grind on special occasions so am going to indulge a little in the future. Wishing you all the best 
Matt, I'm not sure what happened to the rest of my post. It shows up in my account page, but not here in the thread. Anyway, i am copying and pasting it below. Hopefully, the original won't show up later and be a big, huge, double post. :/
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 to go through the process of listing. 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.
Hello Kaye,
I have had PSC for 3 years now and the itching can about drive you crazy at times. One thing that has worked for me pretty much all of the time is a Rx called Rifampin. I take 300MG twice a day and it really takes the itching away. It was originally developed for the treatment of tuberculosis but they have found it also helps with the itching associated with liver diseases. Ask your doctor about it. It's not 100% perfect, but it just about is most of the time for me and you don't have to drink the pasty stuff.
Mark
Kaye2105 said:
Hi. A similar thing happened to me. I had gone to Doc just feeling run down, no energy and generally exhausted to the bone . The doc did blood tests and my LFTs were high. They sent me for an ultrasound on liver but all ok. I went back a year or so later to a different Doc who ran same tests and LFTs still very high and sent me for another liver ultrasound. All they found was a gallstone the size of a pin head but nothing else. The LFTs didn't come down and my Doc said I was probably just one of those people with naturally high LFTs. Then I started to get bouts of pain like you and went back to Doc and she sent me to a gallbladder surgeon as her best guess was it was gallbladder pain. I had a MRI scan and this showed I had an issue with liver - in fact it showed that my left lobe had pretty much atrophied to the size of a fingernail! Not sure how the 2 ultrasounds in 2 years didn't pick that up!! I then had a CT scan and was sent to a liver surgeon who couldn't help but said it probably was PSC. Since then I have been referred to a specialist team for further tests and ongoing monitoring. I did get my gallbladder out in March this year and they did a liver biopsy at same time. The reason I had my gallbladder out was the view was PSC can make it worse over time so it's a complication I don't need in the future. I have now been diagnosed just over a year and am classed as asymptomatic as up until recently I have only had intermittent bouts of pain and fatigue. More recently I have started with itching which has got me down a bit of late - most especially because the stuff to take for it is like drinking wallpaper paste!!! I think from my research that everyone's experience with PSC is different - for some they have it for decades with no issues and for others it progresses really fast. I felt daunted when I was first diagnosed but have joined a few support groups which I find a real help. Now I just take it day to day and try not to worry about it as I guess it won't change any outcome!! I have not drank any alcohol since diagnosis but I am finding that a grind on special occasions so am going to indulge a little in the future. Wishing you all the best :-)
Thanks Mark - I am going to go back & see doc next week. I have been persevering with the Questran and have found mixing it with pineapple juice makes it more palatable! However, I think it will get more difficult to take as days go on so Rifampicin may be my next request of my GP. I made the mistake of thinking the itching had gone so didn’t take for a day & then it was back with a vengeance!! Do you need to take Rifampicin every day or just when itchy?
Kaye,
For me, if I don't take it twice a day every day it will come back with a vengeance as well. I have tried to wean myself off of it to one a day and that will work for several days and then it comes back terrible. You really must keep it in your system for it to work. Be mindful that this medicine will turn your urine orange and if you sweat a lot it might come out that way on your skin. It's just something you will have to get used to. But it's so much worth the trouble to be itch free for the most part. The biggest reason I tried to cut back from time to time is the cost of the drug. It costs me $75 a month for 60 capsules, so that really adds up. But I just couldn't live without it at this point.
I have also gone off and on again with Ursodiol. Currently taking 1200 MG a day. It seems to give me nausea at times so I asked the doctor about taking all 1200 MG at bedtime which he said was fine. The only problem there though, is I'm up and down to the restroom every two hours throughout the night. But it does seem to help keep the bile thinned down which helps with symptoms.
Have a good day.
Mark
Matt,
Sorry to hear of your diagnosis but welcome to the group now that you have gotten an accurate diagnosis of where things stand. I would really encourage you to get a good hepatologist that will watch your PSC. You will probably end up needing an ERCP procedure, which is not all that comfortable to get over at least for me, but it often relieves symptoms for a while if they can clear the ducts. I'm thinking the gall bladder being removed is only going to temporarily relieve your symptoms but there are things to help with the itching as I mentioned below in a reply to one of the other posters. Thankfully for most of us, this disease moves rather slowly. Please try to just go on with your life and live as normal as you can. The more you educate yourself about the disease the easier it will be to deal with. This is a good informational group on the topic. I would also encourage you to visit the PSC group on Yahoo.com. Here's the link for that one. Information is so valuable in dealing with an incurable disease. The group is called PSC-Support (http://groups.yahoo.com/neo/groups/psc-support/conversations/messages)
Thanks Mark, that’s helpful. To be honest, I stopped taking Urso in the summer because I had read so much stuff about it being of limited benefit - but since itching has started I have started to take again as my general symptoms have worsened since I did - it’s probably not related but who knows! However, I do feel nauseous pretty much all of the time lately - so I was interested that you said it makes you nauseous? I have always taken mine at bedtime though - 1g.
Thanks for support & advice
Kaye
Hi Matt,
I had PSC for 12 years and then received a liver transplant. Everything is good now. My gallbladder was the first thing related to PSC that my doctors found. When they removed it, they did a liver biopsy that showed I had Stage III Liver Cirrhosis, very consistent with PSC. Good riddance to that old gallbladder. You can learn a lot about PSC on this blog and you can also learn at www.pscpartners.org. Most gastroenterologists refer people with PSC to a hepatologist, a gastro doctor who specializes in the diseases of the liver. My GI referred me to Froedtert Hospital in Milwaukee, a transplant center who has quite a few hepatologists. Mine spent part of every office visit explaining what was happening to me. You can learn to live a close to normal life with PSC. If things go bad, as it did for me, a transplant cures the disease. It is important to take all the meds your doctor prescribes. Be confident, Be patient with yourself and enjoy life.
Paul