I too have PSC which was caught when i was diagnosed with UC in 1997. When I had step 1 of the j-pouch surgery in November I had some complications which caused my bilirubin (sp) to elevate and caused a jaundice effect. I have spoken to a highly regarded liver transplant Dr. and am taking Urso 3 x day to help "slow but not prevent the disease from progressing". At this time I am not on "the list" but as we all know things can change so all you can do is try and live life to its fullest. DB

Does anyone ever get pain under the ribs on your right side? Occasionally I get these sharp, knife -like pains that come and go very quickly. I feel that this area could be where a bile duct may be located. I am hoping that this disease lies dormant for a long, long time. This pouch of mine has given me enough trouble and it would be very difficult for me to deal with another medical issue.

Hello,
I was diagnosed with PSC in 1989 and had a liver transplant in 2003. In the years I had PSC there were some symptoms such as itching and night sweats but no limitations on my life style. I was active - finished a triathlon 6 weeks before and worked right up until the transplant.
The transplant itself was major surgery but the recovery was pretty quick, especially compared to the J-pouch process. Rejection meds have few side effects and you reduce your dose as time goes on.
I had yearly check ups and blood tests until my enzymes spiked about a year before the transplant and then I was monitored closely until the "call".
After the diagnosis I became a bit of an angry dude without realizing it. My wife "politely suggested" that I speak to a professional which helped immensely. I would suggest you listen to the people around you and take their advice on this type of thing.
Today I am living a fairly normal, active life as a husband, father and search and rescue coordinator with the Candian Coast Guard.

Yesterday I was diagnosed with PSC. I had my colon removed last year, a j-pouch formed in Feb this year and I am due to have the take down done in July. All this after fighting UC for 30 years.

I was not recovering well from the last surgery so I had my bloods done a the liver readings were elevated. They did go down a few weeks a later but then went up again. So my GI believes I have PSC. I am about to have an MRI and ultrsound scans to determine the extent of the disease.

My GI prescribed for me immediatley 2 x 500mg per day of Usodeoxycholic acid. Checking out the web it seems that this drug helps to slow up the onset of the disease and minmise its effects such a fatigue etc. However, it does not hold back the disease forever, although tests are proving to yield some positive results.

I really feel for you guys with PSC. Having UC, then all that surgery and then get on top of that PSC seems desparately unfair. How unlucky can you get. At the moment I am shell shocked. I thought having my colon removed etc would bring the ned to drugs, tests and living with a disease. Not to be. Now we have a liver transplant to look forward to.

What can you say!

Paul

I don't know how I missed this thread earlier. I too have PSC. I was diagnosed with it late last year, a month before getting the diagnosis of cancer. Worrying about a liver transplant suddenly becomes a lower priority when you get the cancer diagnosis, but now that the cancer is gone, it's suddenly a big deal again.

I was given a prescription but since my medical insurance wouldn't cover it in the dosage prescribed, I was waiting for my doctor to do something about that when the cancer thing came in. I have an appointment in a couple weeks to revisit the problem though. For the most part I feel pretty good, and my liver enzymes are lower than before the cancer surgery but still elevated. I do have another symptom which I'm assuming is from the liver problem. I have pitting edema in my feet and when it popped up a year ago, they said it was because I was protein deficient. I have been drinking a protein shake and that has worked great up until a month ago. The swelling came back and bumping up the amount of protein doesn't seem to make it go away. I do have itchy skin at times too, but I'm more worried about the lack of protein absorption at this point.

Paul,
I can commiserate with you. I, too, was shocked when this I was diagnosed. I had my colon removed in Dec., 1995, after cancer was diagnosed. This was due to U.C. After a routine blood test,about 6 years later, my liver enzymes were quite elevated. I had not even heard of this disease and was stunned that I had to deal with yet another chronic issue. I am on Ursodial also, three a day, and my enzymes are totally normal, with blood tests performed twice a year. Thank God. Once my GI said that this is not an indication that the disease is not progressing but then last week when I saw her she said maybe I am one of the patients that is responding well. You will learn to accept and live with it. I do not dwell on it any more and just try to enjoy every minute of my life while I am still somewhat healthy. My pouch is very disfunctional now for 12 years. I have to deal with a "flare" every day. I go to the bathroom between 10-15 times a day and have adjusted to it but it is not convenient many times.
Last year I had a tear in my rotator cuff so had surgery in Sept. I was doing nicely and three months ago my shoulder started to really hurt again. Well, I just had an MRI done yesterday and I have another tear. I did cry and am feeling sorry for myself. It is a wicked surgery and is on my right shoulder. I just dread to have to go through that again. That surgery was more painful then when my colon was removed, if you can believe that!! Oh, and in 2006 I had breast cancer. It was an early stage so alleluja to that but did have to have 37 treatments of radiation. Paul, life can suck, can't it?!!??
BUT..........I have a wonderufl husband, two sons, two beautiful grandchildren and a nice house and live in a beautiful area so there are lots of joys tucked into my life. I have my arms and legs and feet and that dreaded PSC has not struck yet. I just pray when it does that God will give me strength to deal with it. I always preached to my sons that attitude is more important than fact and I will be put up to that test...hopefully later than sooner.
I hope you have a good support system going. You can email me anytime and I know there is a site for PSC but it was kind of depressing to me. I initially would go on it after my diagnosis and then stopped because of all the sad situations. Don't need that now. Maybe when the demon stricks I will go back for support but until then will enjoy the sunshine every day.
Be well, Paul, and take one day at a time.
Donna

Well, they did do the tests to confirm my diagnosis. Yes, I have it. I'm supposed to check enzymes every three months. But I don't always. Doc said there is no treatment.
LoriP