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Ulcerative Colitis
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Posted 9/8/2008 5:57 PM (GMT 0)
So I have been diagnosed with UC and PSC back in 2005. My liver fxn tests have been going up and down more often than a roller coaster. I just had a blood test on thursday and my Alkaline Phos. was 563!!!! My GGT, SGPT, and SGOT (AST/ALT) is all above the norm. My doctor told me to start scheduling yearly abdominal ultrasounds and other cancer detecting tests. And a few years from now start getting a yrly colonoscopy for cancer detection. This is kinda scary since im only 21.
Also my Gastroenterologist recommended an colectomy b/c of my medium/severe UC. Dang it. I take my meds religiously. Argh.
Posted 9/8/2008 8:53 PM (GMT 0)
I believe Quincy has PSC and I am sure she will see your comment and reply.

There are more PSCers at www.j-pouch.org The PSCers on that board have all had colectomies. Between Quincy and the jpouchers you should find a wealth of information and support.

Sue
Posted 9/9/2008 5:50 AM (GMT 0)
Hi....yes, I have PSC diagnosed via MRCP (I refused the ERCP), but markers lean towards PBC (primary billiary cirrhosis)...mine is in early stages, with liver enzymes in the normal range now thanks to the URSO. My UC is mild, limited at this time to the lower rectum...treated with Asacol and Salofalk retention enemas.  Maintaining the status quo.

How were you diagnosed with PSC? through MRCP or ERCP?

In your situation, I'd do as much research as possible. Have you seen a liver specialist?

I don't think my experience will be as helpful as those suggested by Sue. Another place you should check out is http://www.pscpartners.org/

Lots of great info in the newsletters. 

Somehow I tend to believe that the PSC does better if the colon is behaving nicely....maybe having your colon removed will be a good thing overall.  Definitely do the research on that aspect.  I know that if one has a liver transplant, the UC can get worse...chicken or the egg...but something to consider for your future.

I'm sad to hear you have PSC.  I hope you get the support and answers to your questions.

quincy

Posted 9/9/2008 6:51 PM (GMT 0)
Thank for the reply. I was diagnosed via ERCP. (fun stuff!) I have also been getting a routine ultrasound and also had a liver biopsy. I remember when I had the ERCP they told me one of my biliary tracts is already stiffening. I am just scared because of the increased risk of liver cancer WITH my already chance of colon cancer.
Yea I have seen a specialist and my Gastroenterologist is, I think, one of the most sought after IBD doctor in the area. She has a liking for me (I probably remind her of her son) and she has been able to see me within a few days if I call.

I dont know. Whatever. Hopefully things will get better, right? yeah
Posted 9/10/2008 2:27 AM (GMT 0)

Blue587 said...
Thank for the reply. I was diagnosed via ERCP. (fun stuff!) I have also been getting a routine ultrasound and also had a liver biopsy. I remember when I had the ERCP they told me one of my biliary tracts is already stiffening. I am just scared because of the increased risk of liver cancer WITH my already chance of colon cancer.
Yea I have seen a specialist and my Gastroenterologist is, I think, one of the most sought after IBD doctor in the area. She has a liking for me (I probably remind her of her son) and she has been able to see me within a few days if I call.

I dont know. Whatever. Hopefully things will get better, right? yeah

The Dr at Mayo told me the URSO helps protect the colon from cancer so you should be ok there. Liver cancer with PSC is still not likely. If the liver gets bad you can get a transplant. No sweat. :)

I am suspected to have PSC, but no firm DX as of yet. I take URSO daily to try and help. All you can do is try to get straight between the ears, take care of yourself and your body and keep smiling. The rest of it will take care of itself.
Posted 9/10/2008 6:13 AM (GMT 0)
and don't drink!!!!!!
Posted 9/10/2008 6:25 AM (GMT 0)

UC Dude said...


The Dr at Mayo told me the URSO helps protect the colon from cancer so you should be ok there. Liver cancer with PSC is still not likely. If the liver gets bad you can get a transplant. No sweat. :)

I hadn't read that URSO helps protect the colon from cancer, but I do know that it's suspected that 5-ASA meds do.

The likelihood of cancer, be it liver, pancreatic, colon increases with having PSC.

A liver transplant buys time (the availability is usually tough), and one is considered to be put on the "list" after the billirubin ## reach a specific number ....the new liver will develop PSC as well..eventually.

PSC can also affect the pancreas...joy.

q

 

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