Hello, from a newbie

[Guest guest]

Hi everyone. I am ee, 39 years old, married with 4 kids. I have

been diagnosed with CD since 1999, bowel resection in 2001, remission

since. Lately I felt symptomatic, and made an appt with the doc for

last Thursday. The 4 days prior to the appt I was sick with fever and

aches, and assumed it was CD related. I felt so sick the morning of

the appt I decided to go to the ER instead. This turned out to be a

very good decision. My liver enzymes were abnormal, and I actually

still don't know what they were. Instead of seeing the doc I had an

appt. with, his associate happened to be in the hospital and is one of

the top rated GIs in this area, and specializes in liver disease.

Lucky me! He named a few things this could be, including PSC which was

the one thing I was praying it was not, and scheduled a colonoscopy

and ERCP for Tuesday. The scope showed no signs of active CD (yay!)

but did confirm PSC.

The last few days have been a roller coaster. In just a few days I

have gone from " oh my God I am going to die young of liver disease! "

to " ok, I have chronic liver disease that I am just as likely to die

with as I am to die from " . I am in that adjustment phase, learning,

gathering the facts, and dealing with the huge change my life will

have. My first lesson- search engines are BAD. I ordered a good book

with appropriate resources and am looking here and there. Right now, I

am on URSO, and will be re-ERCPd in a year or two. I see the doc next

month for a follow up, and it will be the first time I will talk to

him with a clear head, I was sick or drugged before. I want to ask him

about the possibility of stents. Anyone have these? From what I have

read so far, I am reasonably optimistic about the effects of URSO. I

have found just one or two sites that calm me or otherwise say much

positive at all, so I am hoping for some good, yet honest,

encouragement and support here. I am scared, but not terrified. I am

not the type to sit around and wait to get sick, I intend to carry on

with my wonderful life, with a few adjustments of course. I am

following a low fat diet, I am obese and have already started to lose

weight. This is also due to the URSO I'm sure, aside from making me

nervous, it kills my appetite, and I am sure that will all subside right?

Anyway, I am really glad there is a place to come and talk. I look

forward to learning from everyone.

ee