anyone here with psc?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Blue587
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 9/8/2008 12:57 PM (GMT -6)   
So I have been diagnosed with UC and PSC back in 2005. My liver fxn tests have been going up and down more often than a roller coaster. I just had a blood test on thursday and my Alkaline Phos. was 563!!!! My GGT, SGPT, and SGOT (AST/ALT) is all above the norm. My doctor told me to start scheduling yearly abdominal ultrasounds and other cancer detecting tests. And a few years from now start getting a yrly colonoscopy for cancer detection. This is kinda scary since im only 21.
Also my Gastroenterologist recommended an colectomy b/c of my medium/severe UC. Dang it. I take my meds religiously. Argh.
-Diagnosed Fall '05. UC and PSC
-Current Rx: Asacol 6 BID; Urso Forte 1 BID; Vitamin B Complex; Ferrous Sulfate 65mg


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/8/2008 3:53 PM (GMT -6)   
I believe Quincy has PSC and I am sure she will see your comment and reply.

There are more PSCers at www.j-pouch.org The PSCers on that board have all had colectomies. Between Quincy and the jpouchers you should find a wealth of information and support.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 9/9/2008 12:50 AM (GMT -6)   
Hi....yes, I have PSC diagnosed via MRCP (I refused the ERCP), but markers lean towards PBC (primary billiary cirrhosis)...mine is in early stages, with liver enzymes in the normal range now thanks to the URSO. My UC is mild, limited at this time to the lower rectum...treated with Asacol and Salofalk retention enemas.  Maintaining the status quo.

How were you diagnosed with PSC? through MRCP or ERCP?

In your situation, I'd do as much research as possible. Have you seen a liver specialist?

I don't think my experience will be as helpful as those suggested by Sue. Another place you should check out is http://www.pscpartners.org/
Lots of great info in the newsletters. 
 
Somehow I tend to believe that the PSC does better if the colon is behaving nicely....maybe having your colon removed will be a good thing overall.  Definitely do the research on that aspect.  I know that if one has a liver transplant, the UC can get worse...chicken or the egg...but something to consider for your future.
 
I'm sad to hear you have PSC.  I hope you get the support and answers to your questions.
 
quincy
 
 
 
 


*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

Post Edited (quincy) : 9/8/2008 11:57:56 PM (GMT-6)


Blue587
New Member


Date Joined Sep 2008
Total Posts : 12
   Posted 9/9/2008 1:51 PM (GMT -6)   
Thank for the reply. I was diagnosed via ERCP. (fun stuff!) I have also been getting a routine ultrasound and also had a liver biopsy. I remember when I had the ERCP they told me one of my biliary tracts is already stiffening. I am just scared because of the increased risk of liver cancer WITH my already chance of colon cancer.
Yea I have seen a specialist and my Gastroenterologist is, I think, one of the most sought after IBD doctor in the area. She has a liking for me (I probably remind her of her son) and she has been able to see me within a few days if I call.

I dont know. Whatever. Hopefully things will get better, right? yeah
-Diagnosed Fall '05. UC and PSC
-Current Rx: Asacol 6 BID; Urso Forte 1 BID; Vitamin B Complex; Ferrous Sulfate 65mg


UC Dude
Regular Member


Date Joined Aug 2005
Total Posts : 438
   Posted 9/9/2008 9:27 PM (GMT -6)   
Blue587 said...
Thank for the reply. I was diagnosed via ERCP. (fun stuff!) I have also been getting a routine ultrasound and also had a liver biopsy. I remember when I had the ERCP they told me one of my biliary tracts is already stiffening. I am just scared because of the increased risk of liver cancer WITH my already chance of colon cancer.
Yea I have seen a specialist and my Gastroenterologist is, I think, one of the most sought after IBD doctor in the area. She has a liking for me (I probably remind her of her son) and she has been able to see me within a few days if I call.

I dont know. Whatever. Hopefully things will get better, right? yeah


The Dr at Mayo told me the URSO helps protect the colon from cancer so you should be ok there. Liver cancer with PSC is still not likely. If the liver gets bad you can get a transplant. No sweat. :)

I am suspected to have PSC, but no firm DX as of yet. I take URSO daily to try and help. All you can do is try to get straight between the ears, take care of yourself and your body and keep smiling. The rest of it will take care of itself.
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 9/10/2008 1:13 AM (GMT -6)   
and don't drink!!!!!!
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 9/10/2008 1:25 AM (GMT -6)   
UC Dude said...


The Dr at Mayo told me the URSO helps protect the colon from cancer so you should be ok there. Liver cancer with PSC is still not likely. If the liver gets bad you can get a transplant. No sweat. :)

 
I hadn't read that URSO helps protect the colon from cancer, but I do know that it's suspected that 5-ASA meds do.
 
The likelihood of cancer, be it liver, pancreatic, colon increases with having PSC.
 
A liver transplant buys time (the availability is usually tough), and one is considered to be put on the "list" after the billirubin ## reach a specific number ....the new liver will develop PSC as well..eventually.
 
PSC can also affect the pancreas...joy.
 
q
 
 


*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

Post Edited (quincy) : 9/10/2008 12:28:36 AM (GMT-6)

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, September 22, 2018 10:31 AM (GMT -6)
There are a total of 3,005,665 posts in 329,249 threads.
View Active Threads


Who's Online
This forum has 161795 registered members. Please welcome our newest member, jjakefamily.
297 Guest(s), 2 Registered Member(s) are currently online.  Details
xpeetzax, InTheShop