A new member

[Guest guest]

I am SO happy to have discovered your support group! For the past couple weeks, I have been reading your messages, but this is the first time that I have posted . It is wonderful to find a group of people who share my experiences and especially who are such a source of knowledge about PSC. I have found an excellent hepatologist who answers all my questions thoroughly, and I've done some reading about the disease, but the information from all of you adds a very special dimension to my understanding of PSC and my new lifestyle.

After being very healthy for all my 58 years, last April I suddenly landed in the emergency room with pain, fever, chills, etc. Luckily, I found a hepatologist who was able to diagnose PSC relatively quickly. I then went through what all of you have experienced off and on: five months of recurrent bouts of cholangitis. I had four ERCPs which included the extraction of two dozen stones and the insertion and removal of several different stents. Now, a year later, I am thrilled to be asymptomatic except the fatigue, and I am on a high dosage of Ursodiol. I have some questions for all of you.

1. I know that there is no time line for disease progression, but I would love to hear about some of your personal experiences. After your stents were taken out, how long a period have you had without cholangitis attacks, strictures, or other problems? Am I lucky to have had seven asymptomatic months or could this last for a long time?

2. How long has this support group been in existence, and how many members do you have?

3. Where are some of the main centers nationwide and worldwide where research is being done on PSC?

4. Do you have any dietary suggestions? I have been working with a nutritionist to balance my diet, mainly to cut down my fat intake, which helps a lot. It has also helped to eat three smaller meals and add a morning and afternoon healthy snack.

Thanks for any suggestions...

Ricky

PSC 4/04