Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Michele, Good luck to you both. My pain was often below my sternum - especially before I had my gallbladder out. My pain after tx has been there, too, which is why it has me baffled and nervous, too. Other than pain killers, I say avoid fat like the plague. It makes matters worse whether the cause is cholangitis or just a stone caught in the duct. My prayers are with you tomorrow! Deb in VA PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2005 Report Share Posted July 7, 2005 Hi everybody, You all sound a wonderful caring group of people. I've been reading some of the messages and they're so positive. I had raised LFTs 14 months ago and diagnosed with PSC following an MRI.I finally had Liver biopsy 3 weeks ago (they asked me to remind them and when I did they said oh there's no urgency)I have not had full result yet. I get so confused though because my docs talk about it like I've got a cold! I know they don't want to alarm me. Then I read the net and it's the opposite and looks a bit scary. I've had Crohn's for 25 years and had lots of surgery. I've grown used to having a chronic condition and have led a very active working and sporty life. This though is scarry. My bilirubin is constantly raised 55,my eyes are yellow and I get right upper indigestion like pain, it's as though somethings blocked. My little understanding suggests that the pain might be the bile duct slightly blocking?! I am the sort of person that needs to know what's in front of me so that I can manage and understand better. What does staging mean ie does stage 1 mean early diagnosis where can I find thes sort of answers? I'll be grateful for any tips you may have I feel a bit isolated at the moment. Regards to you all Lola Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2005 Report Share Posted July 7, 2005 Deb I had some bit of a laugh today when a get well card addressed to you arrived by return mail to me. Seems that it took the US postal system the better part of 2 months to get this job done (well sort of). I could go on pony express, etc., etc. but anyway..... Best jd, 44 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 ston City, IL krmpotich@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2005 Report Share Posted July 7, 2005 Lola Welcome. You sure know the turf with Crohn's. PSC stage one is early. There are only 4 stages with 4 being cirrhosis. Then within that there is ultimately end stage liver disease ESLD. Go to the library at this site. It is calked full of info. Pace yourself it is far to much to take in quickly. You do need to seek the help of a herpetologist. This PSC thing is a thousand more times rare that Crohns is times 3. Your symptoms sound inconsistent to my ear to a stage 1 but having said that this disease acts very different in all 35,000 of us. Best jd, 44 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 ston City, IL krmpotich@... New to PSC > Hi everybody, > You all sound a wonderful caring group of people. I've been reading > some of the messages and they're so positive. > I had raised LFTs 14 months ago and diagnosed with PSC following an > MRI.I finally had Liver biopsy 3 weeks ago (they asked me to remind > them and when I did they said oh there's no urgency)I have not had > full result yet. I get so confused though because my docs talk about > it like I've got a cold! I know they don't want to alarm me. Then I > read the net and it's the opposite and looks a bit scary. I've had > Crohn's for 25 years and had lots of surgery. I've grown used to > having a chronic condition and have led a very active working and > sporty life. > This though is scarry. My bilirubin is constantly raised 55,my eyes > are yellow and I get right upper indigestion like pain, it's as > though somethings blocked. My little understanding suggests that the > pain might be the bile duct slightly blocking?! I am the sort of > person that needs to know what's in front of me so that I can manage > and understand better. > What does staging mean ie does stage 1 mean early diagnosis where > can I find thes sort of answers? I'll be grateful for any tips > you may have I feel a bit isolated at the moment. > > Regards to you all Lola > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2005 Report Share Posted July 7, 2005 JD - Thanks for the card anyway - you were sweet to send it! :-) If your card went through DC, I'm surprised it didn't take 2 years to get it back! Once they closed the Brentwood facility after the anthrax incident, mail into and out of the city became really slow. I should know - everything from town is incredibly slow and I live less than an hour away! Thanks again and take care, Deb in VA PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005 Quote Link to comment Share on other sites More sharing options...
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