How to live with Primary Sclerosing Cholangitis (PSC)

Posted by donnadpw @donnadpw, Jun 26, 2013

I have just been diagnosed with this disease and really are scared. I am a type of person who loves to stay on the go but, the last 5 years my energy levels has been really down. Need some advice.

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You can find good information at mayoclinic.com. in the Health Information Section. Look under Diseases and Conditions Section.
I had PSC for 10 years before it progressed to liver failure and the need for a liver transplant in 2009. Let me know if I an be of any help.

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@rosemarya

You can find good information at mayoclinic.com. in the Health Information Section. Look under Diseases and Conditions Section.
I had PSC for 10 years before it progressed to liver failure and the need for a liver transplant in 2009. Let me know if I an be of any help.

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Do you still have issues with pain when you eat just about anything? I know they told me I had to eat a low fat diet. I am taking the ursoldiol medicine have you taken it?

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Yes, I took ursodiol when I had PSC. And I was told to eat a ‘heart healthy’ diet. I never had pain when eating, but I dealt with repeated bouts of indigestion and nausea.

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@rosemarya

Yes, I took ursodiol when I had PSC. And I was told to eat a ‘heart healthy’ diet. I never had pain when eating, but I dealt with repeated bouts of indigestion and nausea.

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So you don’t have PSC no more. I know I have indigestion and nausea as well as pain.

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@rosemarya

Yes, I took ursodiol when I had PSC. And I was told to eat a ‘heart healthy’ diet. I never had pain when eating, but I dealt with repeated bouts of indigestion and nausea.

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Sorry for the confusion. The way I understand It: PSC is a disease that affects the bile ducts of the liver. When I received my liver transplant, my damaged liver and bile ducts were removed. My transplanted liver does not have the disease. So that is why I say “had”.
I am healthy now, but I have not forgotten what it is like to live with the fears and discomforts of PSC.

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@rosemarya

Yes, I took ursodiol when I had PSC. And I was told to eat a ‘heart healthy’ diet. I never had pain when eating, but I dealt with repeated bouts of indigestion and nausea.

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that is okay I am glad you explain more in detail about it. I know my husband told me the doctors told him I had a severe infection. So I must be past stage one.

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