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

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Posted 2/10/2010 10:01 PM (GMT -5)
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 ...

Oh...by 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

Posted 2/10/2010 10:13 PM (GMT -5)
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.

 

Posted 2/10/2010 10:14 PM (GMT -5)
You can always talk here! Sheesh you got a really heavy load right now.((((((Misterie)))))) I remember you! Keep talking!
Posted 2/10/2010 10:20 PM (GMT -5)
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.

Ivy.
Posted 2/10/2010 11:37 PM (GMT -5)

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

(((HUGS)))
Jo

Posted 2/11/2010 12:38 AM (GMT -5)
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.
Posted 2/11/2010 11:25 AM (GMT -5)
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).
Posted 2/11/2010 1:03 PM (GMT -5)
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.
Posted 2/11/2010 3:06 PM (GMT -5)
(((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!!!
Posted 2/11/2010 3:14 PM (GMT -5)
(((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!

Hugs!
Posted 2/11/2010 11:09 PM (GMT -5)
(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.
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