Help-newly diagnosed with crohns now primary sclerosing choleangitis??

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nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 9/29/2007 12:53 PM (GMT -7)   
Hi all
I want to thank you all so much for helping me the last 4 weeks.  Thursday I went for a cat enterography at Mt. Sinai the gi doc just called and said my ti looks good not as inflamed as 4 weeks ago but now he said my bile ducts to the liver are inflamed and he needs to have Dr. Sejpal do a endoscopy of the bile duct.  I am freaking out...having a hard time handling the crohns diagnosis now this. Does anyone have this primary sclerosing choleangitis thing?  Can you tell me is it dangerous and how they treat it also are there any other tests to show how extensive the inflammation is or do I have to have this ERCP?  Thanks again...I can't take all of this.
 
Chris

itsme512002
New Member


Date Joined Sep 2007
Total Posts : 2
   Posted 9/29/2007 1:32 PM (GMT -7)   
I have both diseases PSC and Crohns, actually the ERCP is from what I understand the "gold standard" of tests for PSC.  I was diagnosed in 2002, yes I was scared but I have learned to try not to dwell on it.  I have had 2 liver biopsies, that is also another test they can do to see how extensive it is, if indeed you have it.   I think that there is a new test an MRCP (less invasive) that they can do, maybe you can ask your Dr. about that one.  I have only had the ERCP, I'm not sure that I can have the MRCP because I have a vena cava filter (for blood clots).

nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 9/29/2007 8:05 PM (GMT -7)   
Thanks itsme...did they put you on medicine for this? What do they say for the future for people like us. I read about the liver transplant. Do you go on a transplant registry right away?

Thanks
Chris

itsme512002
New Member


Date Joined Sep 2007
Total Posts : 2
   Posted 9/29/2007 9:03 PM (GMT -7)   
Chris, I went on Urso for several months it is very expensive, my Doctor finally said that it hasn't been proven to be effective in PSC just in PBC so he took me off of it.  I am currently in a study from Mayo Clinic so hopefully that medicine will prove to help.  Right now there really isn't any treatment besides the eventual liver transplant, at least that I know of.  I belong to another board that is for PSC, there are people on there that have had it for 20 years without transplant.  The doctors go by your "Meld score" which I believe is described on Mayo's site, when it reaches a  certain number they will begin to get you listed.  I am at a stage 2 to 3 (of 4) right now and I am not being listed at this point.  I was very scared when I was originally diagnosed because my doctor while looking at my liver biopsy results said "hmmm they say you have PSC, there's no cure for that, just a liver transplant for end stage".  Well, I left his office went home and researced it and saw that Walter Payton had it and died shortly after, OMG scared me half to death, but then I have heard that most people live for quite some time without to many problems. And like I said I have had it now for 5 years and I actually have had more trouble with crohns then PSC.  Strangely in some ways it has been a bit of a blessing to be diagnosed with both diseases because I no longer take life for granted, I am very thankful for each day, week, year that passes and I'm able to enjoy all of my family and friends it was certainly a wake call to stop stressing the small stuff.

nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 9/30/2007 3:36 AM (GMT -7)   
Is there a specialist at Mayo that studies PSC that I can get on a wait list to see. I am in denial since it is predominatly a male disease. We went through 4 years of leukemia with my daughter who needed a transplant and we couldn't find a donor. Spent over $400,000 of our money and donations and searched all over the world. I am Norwegian and my hubby is Italian come to find out I have a very small amount of Shetland Eskimo in me making impossible to find a suitable match for her. I oculdn't find a liver donor to match me ever. Can you also tell me about the PSC board. Thanks so much. I can't believe this is happening
Chris
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