News of late that has me still in shock ....and wondering

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Veteran Member

Date Joined Feb 2004
Total Posts : 732
   Posted 2/10/2010 8:01 PM (GMT -7)   
Been ages since I have been here shakehead  
Have been off meds for almost 2 years and honestly I have not felt bad - finally found a new wonderful GI for the first time in my 27 years as a CDer ... He is wonderful ...
my only problems had been ( knowing I had gallstones to watch for ) and having some upper ab and back pain ..not excruicating until about a month ago ...3 visits to the ER in 4 days until they finally listened to me and checked my gallbladder - Big stone stuck in my bile duct ...admitted me and my GI came and did an ERCP and removed the stone - not easily either ...
Next day Surgeon came and removed my gallbladder
While in there he said my liver did not look good- took biopsies
Confirmed last week - I have ...well, they are calling it 'BILLARY CIRROSIS" right now ... took lots of lab tests and i am waiting to see my GI for the results ...
 I got my records yesterday and saw the path report ...doesnt look good at all ... I don't drink, yet it says all the tests are consistent with alcholic cirrosis ....
I was also told by the anesthesiologist before my surgery that it looked like ( from my ekg) that I have had a heart attack at some point ~!
Needless to say ... I feel like my life is ending ...and yet , I cant say that to anyone ...
Certainly not my family - I want to talk to my husband about it ... the way ...did I mention I currently don't have insurance... I am in a waiting period and don't know if I can even keep working emotionally I am spent...
I just needed somewhere to talk ... someone to tell this to ...and maybe find some answers
Thanks for giving me that time

Regular Member

Date Joined Oct 2007
Total Posts : 390
   Posted 2/10/2010 8:13 PM (GMT -7)   
I am so sorry you are going through this!  Take a deep breath - you are okay - this will all work out.  You definitely need a break and focus on yourself - everything else will fall into place.  Talk to your husband and your family - you need support, and that is what they are there for, especially now.
Good luck with all of this!!  I know it must be a lot to deal with even the shock of hearing about from your doctors, never mind it actually happening.  Trust in God, he will take care of you.
32 yr old Female
Crohn's Colitis
DX 12/06
Currently on Remicade, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9 and Vitamin D

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 2/10/2010 8:14 PM (GMT -7)   
You can always talk here! Sheesh you got a really heavy load right now.((((((Misterie)))))) I remember you! Keep talking!
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 2/10/2010 8:20 PM (GMT -7)   
I remember you too, Misterie, and am so sorry for all the difficult things you're experiencing right now.

Please keep posting here. We've missed you, and we care about you.

Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Veteran Member

Date Joined Mar 2006
Total Posts : 1354
   Posted 2/10/2010 9:37 PM (GMT -7)   

Hi misterie,

I remember you as well:-)  Sorry to hear about your liver.

I believe all these meds we take do take their toll on our organs. A few years back one of the scans I had said I have a lesion on my liver, when I asked Gastro about this she said not to worry, but then all the meds I take affect your liver, so I need to worry. I have regular blood tests and they always screen my liver and so far so good.

Again, Im sorry you are going through this


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
Forum Moderator - Rheumatoid Arthritis

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 2/10/2010 10:38 PM (GMT -7)   
I totally can relate...I have just been dx'd with liver problems too. PSC (Primary Sclerosing Colangitis) in my case and it appears to be PBC (Primary Billary Sclerosis) in yours. Both are considered relatively rare complications of IBD. BTW, most sclerosis is caused by alcohol. It would appear that your condition is caused by autoimmunity, which is quite rare, so some physicians, thinking horses and not zebras, default to the "alcohol cirrhosis".

It is hard to find info on all this stuff...I know, been trying to do that since my dx sometime in October, 2009. Not sure what to expect that kinda stuff...but I think it would be nice to talk to someone.
"The earth laughs in flowers"

Regular Member

Date Joined Feb 2009
Total Posts : 269
   Posted 2/11/2010 9:25 AM (GMT -7)   
Het Sydney Jo,

I have 2 lesions on my liver, I have them checked out with various tests and had them checked to see if they are growing, I was told as they were not growing not to worry about them. I also have a condition called fatty liver, I no longer drink (boo hoo).
Diagnosed 2005.  41 year old female living in UK
Current medication  -  infliximab infusions, ranitidine, Vitamin B12 injections, anti depressants

Elite Member

Date Joined Jan 2010
Total Posts : 10092
   Posted 2/11/2010 11:03 AM (GMT -7)   
There's plenty of other causes of cirrhosis other than alcoholism. But still, doubt that removes the shock of the diagnosis. I hope that once the initial shock wears off things start to appear more manageable and hopeful for you.

Veteran Member

Date Joined May 2003
Total Posts : 9448
   Posted 2/11/2010 1:06 PM (GMT -7)   
(((hugs))). Whew! What a load to be handed at one time! My son went thru that too except the radiologist he had didn't even have the decency to say "consistent with" alcholic cirrosis. He was in a new state w/a new doctor and an this was an ER doctor and he really had a time convincing that ER doctor that he was NOT a drinker, that he didn't DARE drink due to the necessary meds he was on that could cause liver damage. Thank goodness his new doctor was smarter than the ER doctor and recognized that fact!!!
My computer says I need to upgrade my brain to be compatible with its new software.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 2/11/2010 1:14 PM (GMT -7)   
(((misterie))) I remember you too:) So sorry for the new diagnosis though. I had to have surgery on my liver back in 2002 because of what turned out to be a non cancerous growth. The only med I had taken a lot of before that time was Motrin as I had been a non compliant person with my Crohns meds. Never know what caused my problems, but after the surgery I was okay. I wonder if the disease itself causes these issues or if its related to the medications we take. Hope they get you figured out soon!! And don't be such a stranger, we missed you!

Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined May 2007
Total Posts : 1488
   Posted 2/11/2010 9:09 PM (GMT -7)   
(Hugs) No one deserves to hear such things! Please, Please do tell your husband and family though. If you had an emergency situation, SOMEONE needs to know! I can only imagine how hard this is for you.
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones, Carpel Tunnel & POST-menopausal (Hurray)

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