New here with new problems - feedback PLEASE!

[Guest guest]

Hello everyone, I've heard so much about this place on J-Pouch.org

where I am a regular member. A little background:

In May 2005 I was diagnosed with colon cancer after 14 years of UC.

I was then whisked around and settled on Mayo Clinic for treatment

and a colectomy with J-pouch. At this time, I was also diagnosed

with PSC discovered with normal lab workups and elevated liver

function tests and subsequent ERCP.

Since 2005, I have functioned well with my J pouch and all screenings

there show that no cancer or dysplasia has returned. My PSC has also

been well behaved with a gradual/steady reduction of liver enzyeme

levels - until last week when I experienced some upper right quadrant

pain, a little itching, and a slight yellowing of my eye whites. So

I promptly scheduled a consultation and bloodwork to reveal that

suddenly my bilirubin jumped. It was normal with a .6 total in March

but jumped to 1.5 last week.

My GI is concerned that the sudden increase in bilirubin is a bad

signal and that it indicates probably cholangiocarcinoma. He also

suggested it might be a gallstone, but was more suggestive of CCA.

So, I have an ultrasound scheduled for tomorrow, a followup

appointment on Friday, and then we will schedule ERCP and tumor

market bloodwork.

I'm getting a little bit concerned about this since my PSC was

completely asymptomatic until now and we're immediately thinking that

we've reached worst case scenario of CCA!!!! I've put up with so

much with 14 years of UC, colon cancer, and subsequent J pouch - I

don't know how much more I can take with the PSC and CCA!

Any words of wisdom or experience would be GREATLY appreciated.

Thanks!

Rick