I also have PSC! I was very scared at first too and when you go on all the web sites to read about
it, it does nothing but scare the **** out of you. I went back to my doc and he reassured me that it is in most cases a VERY slow progressing disease, more like 30 years. Try not to worry and stress too much about
it. Mine tends to flare with my cd flares. I have been able to tell the difference in the pains mostly because the PSC pain is higher up and is coupled with white or light colored bms. You need to go to www.acg.gi.org for more useful info. It is the site my gi recommended to have the best info. Good luck and keep your chin up!
Dx CD 2003 but probably had it 10 years prior
Dx Primary Sclerossing Cholangitis 2006
GB out '95, Appendix out '96, Kidney stent '02/stone removal '02, Resection '04, fistulectomy '06 2x, tubal '05
Currently on 100mg 6mp and Remicade every 8 weeks, Ambien as needed, predsnisone