New to the group and to PSC

[Guest guest]

Hi everyone,

My name is Ruth. I'm 34, a mother of two, and a university professor.

I live in the States, though I'm originally from Israel. I was

diagnosed with IBD in 2000, when I was still in Israel. Had it really

bad since then. They kept switching diagnosis from Crohn's to UC and

back. About 6 months ago I had my colon removed at Mayo Clinic

(Rochester) because of high-grade dysplasia. I had an ileorectostomy,

so no pouch or stoma. It was very successful and I felt great for the

first time in a long time!!! I had energy and could leave the house

without fear. A couple of weeks ago I went back to Mayo for follow up

and saw a new GI doctor, who suspected PSC. I had an ERCP and they

confirmed the diagnosis, though I have no symptoms now. Back in 2000,

when my IBD first showed up, I had abnormal liver values and some

jaundice, but it went away once I got on Imuran and Prednisone, so

they never followed up. Now they don't know if back then it was

already PSC or not.

The doctor I met with at Mayo didn't have a lot to tell me, just that

it's good that I don't have symptoms yet and that liver transplant

success rates are high for people with PSC. But I'm ful of questions:

What should I expect? How will I feel as my disease progresses? What

kind of life will I be able to lead? I was planning on having 1-2

more children. Will I be able to take care of them? Will I be there

to raise them? I'm at a loss, I don't know what the future holds for

me.

A final question - are there false positives with ERCPs, or is the

diagnosis certain?

I'd love to hear your experiences and thoughts on what to expect.

Thanks,

Ruth