New diagnosis

[Guest guest]

Hi Everyone,

I have just come across the yahoo group in searching the web for

information on PSC. I was just recently diagnosed in May with PSC. I

was diagnosed with Ulcerative Colitis in 2002 while I was a hockey

player at the University of Minnesota Duluth.

The UC has always responded well to Asacol, after they diagnosed it.

To get to that point was another story. I know many of you are no

stranger to long waits and numerous appointments, as I have read in a

few of the posts. Since 2002 I have been on and off of the drug. I am

not a person that wants to take drugs if I don't have to.

I am a 25 year old healthy female. I have been athletic since I was a

kid and I trained quite seriously, to the elite level, when I was

playing ice hockey. Now I much more relaxed with exercising but

maintain a pretty slender, athletic build.

In January of 08, I began to itch. I did not go to see a doctor till

the end of March because at first I thought it was my detergent or

something else. When I started to itch my feet so much they were

bleeding, I knew it was time to go in. They found that my liver

enzymes were elevated. I don't have my records on me to know which

ones, I just know they were way above the normal limit.

Finding this, the doctor sent me for a liver ultrasound. From the

ultrasound they saw the inflammation in the Common Bile Duct. From

here I went back to the Gastro and he scheduled me for an ERCP. From

the ERCP brushings, there was no evidence of cancer, however he did

see some narrowing of the Common Bile Duct. His copy of the records

say, " ...hopefully we will not have to stent her very soon. "

Of course all of this is new to me. I had looked up on the Mayo Clinic

website for some questions to ask the Gastro. However, he proceeded to

tell me there is not much I can do but monitor it and go on living.

I really wanted to know more about the disease and especially how diet

affects it.

I have since moved back to Duluth, Minnesota to work at UMD. I sent my

records down to a recommended liver specialist 10 days ago, but have

not yet heard back on an appointment. The specialist is at the Mayo

Clinic in Rochester, MN. I am hoping I hear from them soon, but again,

another waiting period!

I wanted to just introduce myself and I hope that I can get to know

more of you. I know that the support will really help. I am in the

dark about PSC and all anyone seems to say is, you cannot really treat

it (besides the Ursodiol 2x/day and Cholestyramine 4x/day, Asacol

3x/day), we don't know what causes it, we don't know how fast it will

progress, and the only treatment is a transplant. For me, athletics

has left me with a lot of mental toughness and I refuse to think that

is all I can do.

If anyone has any dietary suggestions I would really appreciate them.

Is there anything anyone has found that helps back off the symptoms?

Is there anything anyone would recommend to help with itching?

Even though I take the cholestyramine, I still am sometimes itching

like crazy. Even my nose, eyes, and ears itch but mostly by back and

feet. I also have been occasionally getting heartburn, and the other

day I actually threw a dinner up after I had some of the worst

heartburn I have had, rivaling some of my 2002 UC episodes.

I guess the greatest unknown for me now is, how am I supposed to tell

if it is getting worse or better? If I am itching more, is that bad?

If I am getting heartburn more often, is that related?

As you can see I have a lot of questions. I appreciate anyone taking

the time to read my story. I have accepted that I have this disease

and now I would like to be proactive. I thank you for your support.

nne Vasichek