I may need a liver transplant in 10-12 years? PSC

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nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 10/1/2007 7:01 PM (GMT -7)   
My head is spinning first with the crohns diagnosis and now the primary schlerosing cholangitis diagnosis.  The fact that I may not be around to see my kids graduate, get married has me in tears.  Please, is there anyone who knows about PSC?  I am thinking of flying to Mayo to see Dr. Lindor who specializes in this.  Does anyone see him and how do you like him.  I need to have some further extensive testing that is invasive and not sure if I should have it in MN or here in NY. 
 
Thanks everyone for your support and help.
Christine

katydid1994
Veteran Member


Date Joined Oct 2004
Total Posts : 504
   Posted 10/1/2007 7:19 PM (GMT -7)   

(((HUGS))) to you.  I am so sorry for what you are going through.  I don't have any info to help you, other than you might try posting on the Hepatitis board on Healingwell.

I too am starting on the Liver rollercoaster.  I've had a lot of bloodwork and now they say the autoimmune antibodies are showing up on the tests.  Biopsy will be soon.

I am thinking of you and I hope someone will come around with help for you.


Diagnosed with Crohn's August 2006
Age 30
Asthma, Rosacea, Venous Insufficiency, Malabsorption and Excessive Bile production
Questran 1 package per day
Colocort Enema 2 per day
Metamucil
Advair 100, 2 per day
 
 


KitKatBaker
Veteran Member


Date Joined Feb 2005
Total Posts : 1146
   Posted 10/1/2007 7:23 PM (GMT -7)   
Hey Christine. I don't have any answers for ou, but I know that PSC is a lot more common with Ulcerative Colitis. There are at least a handful of people on the UC board who are dealing with this. I would pop over there and ask about it if I were you. I think that you would find some good answers and support.
Katina
Co-Moderator Crohn's Disease Forum
Co-Moderator Ulcerative Colitis Forum
 
Asacol 6/day, Prevacid 2/day, Acidophilus Complex Probiotics, Green Tea Extract, Flax Oil
 
Help support Healingwell!!!
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 10/1/2007 9:39 PM (GMT -7)   
Hey Kristine,

I don't even know what that disease is but I am so sorry you are going through this. A kid at my law school also has crohns and he is on his third liver. He has an auto-immune disorder that attacks his liver as well. He is doing great right now. I guess I tell you this because he seems to be a worst case scenario and he is now doing great and a full time law student. He sees doctors in Boston and next time I see him I will ask if his disease is the same as yours. I don't see him often this year though. If it is I will get you his email address.
25 Year old married female.  Diagnosed w/ CD 2 years ago, IBS for over 10 years before that, which was probably the CD.
 
I started getting a ton of junkmail after putting my myspace profile link on here.  Im taking it off but if you want to contact me just email me and Ill give you a link to my myspace.  Sorry!


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 10/2/2007 2:32 AM (GMT -7)   
Hi Christine, Sorry to hear what you are going threw. Big Huggs for you.
TBW
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/2/2007 4:58 AM (GMT -7)   
Hi Christine Try to keep a positive attitude about things and if you can see a specialist that deals in that field then you should .I would think the better DR. the most help .Sometimes we all feel that worry about our kids so I can relate to that.Hang in there and find out what you can .lol gail

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/2/2007 6:35 AM (GMT -7)   
Hi Christine,
Don't have any answers for you, but just wanted to let you know that I will definetly keep you in my prayers.  I hope all works out well for you.
 
God Bless,
Gail *Nanners* 
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


mojowo4
Regular Member


Date Joined Jul 2007
Total Posts : 137
   Posted 10/2/2007 11:51 AM (GMT -7)   
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!
Mikki
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


nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 10/4/2007 4:46 PM (GMT -7)   

Mikki

I was wondering how you found out you had PSC?  Mine was by a cat scan  to see how my crohns was doing.  They called me on a saturday to tell me the intrahepatic ducts were inflammed and that it was PSC.  I am still in shock.  The weird thing is I have had diarrhea now for a year.  I am wondering if it is my gallbladder.  Also, if gallbladder can cause the inflammation in the hepatic ducts since it all has to do with bile. 

thanks for any info

Chris


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/12/2007 7:48 AM (GMT -7)   
I'm waiting for approval for some sort of special MRI that takes a closer look at the ducts. Has anyone had this done? I'm a little scared myself. Didn't know you could see anything with a CT scan. My liver biopsy was inconclusive, but showed I "could" have early PSC.
 
I read the web site mentioned above and it mentions PBC.  Has anyone heard of this before?  Are the doctors also testing for this I guess? 


Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 

Post Edited (JudyK89) : 10/12/2007 9:03:02 AM (GMT-6)


mojowo4
Regular Member


Date Joined Jul 2007
Total Posts : 137
   Posted 10/12/2007 8:14 AM (GMT -7)   
My doc dx based on my liver panel patterns over the last few years. I had my GB out in 96 so don't know if that is any way related. My doc says he could perform all those expensive tests but there is still no treatment available, so no point in doing them until it is necessary. Says he will schedule biopsy soon just to see what level of disease my liver is at but that since I am not having yellowing of skin and the more severe symptoms of progressed disease not to worry yet. After doing all my research, I agree that there is no hurry to blow tons of money on all these tests yet. Hope this helps some. :)
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-50 mg,  and Remicade every 8 weeks, Ambien, predsnisone, humira 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/12/2007 8:24 AM (GMT -7)   
Nikki,

I was told that gallstones are a symptom of PSC, not a cause of it.
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 


mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 10/12/2007 2:29 PM (GMT -7)   
Mojo,
You mentioned that you doc diagnosed you based on your liver panel patterns over the last few years. Do you mean the bloodwork that was done periodically? Can you elaborate please? I'm just curious. Thanks!
Marci C.
38 years old, dx with Crohn's disease March 2007, currently on Humira, Entocort and hydrocodone (for pain), and Effexor


mojowo4
Regular Member


Date Joined Jul 2007
Total Posts : 137
   Posted 10/12/2007 3:14 PM (GMT -7)   
All the routine bloodwork that I get monthly and sometimes weekly depending on meds. He noticed a pattern in my liver function that was consistant with psc and cd flare since the psc seems to flare with the cd but that my liver function never was "normal", but would get worse with flares.
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-50 mg,  and Remicade every 8 weeks, Ambien, predsnisone, humira 


Erik45
Regular Member


Date Joined Oct 2007
Total Posts : 149
   Posted 10/12/2007 3:36 PM (GMT -7)   
Sorry to hear about your diagnosis Christine but always get a second opinion if you are not comfortable with it. Doctors do make mistakes you never know. You are in my prayers. Take care.

curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 10/12/2007 8:01 PM (GMT -7)   
I am sorry that you are having to deal with this I no it can't be easy.This kindda hits at home for me.I was diagnosed with a diseased gallbladder last week and I was told that my liver was inlarged.Is a elarged liver a symptom?I would like to know my self.
Curley
.........
 


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/12/2007 9:14 PM (GMT -7)   
Yep, an enlarged liver can be a symptom, but it can also be many other things including "fatty liver" which is pretty much a benign disorder. Your doctor will be watching you, and maybe doing more tests. How are your liver enzymes?
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, back on 6MP for maintenance, hoping for a long remission from this last surgery. 
 
 

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