My name is mark (45). I was diagnosed with PSC in 2002 after an Ulcerative Colitis diagnosis in 1997. For years I would be treated for the UC and the PCS kinda sat there. I had two liver biopsies and two MRCPs I think from 2002 - 2004 but then it seemed to have let me alone, or my GI dr. was just busy with the occasional flair ups of my US. Also in 1997 after the UC, I was diagnosed with Autoimmune Hepatitis. For the past 14 years I would have problems with various things, like my eyes, (Iritis) Arthritis and maybe 2 years ago Barrett's esophagus, (no cancer). all thru this time I would get what I later would find out where Gall Bladder attacks. I would tell my GI they would schedule a sonogram and never find a problem, this went on for several years, the attacks would come and go, I would get sick or take some pain medication and just keep going. Well recently, (March 26) I start getting one of my "Gall Bladder attacks" always starts in the middle of my chest, just to the right and radiates down and then all around my back. I usually grin and bear it knowing that in a few hours it will probably go away. well the next day comes and it is still there, I take some pain meds and it is still there. I work thru that day into Friday, Still there. (after so many years of issues and pain I seem to have just accepted that this is the way I normally feel and just keep going) Friday night it just becomes to much and I go the the ER. Mistake number 1, and I have made this one before. I tell them I am having chest pain, so what happens? I get a complete cardio work up. Guess what, a few hours later I have the good news that my Heart is fine, meanwhile the pain meds they gave me have finally taken care of the attack. I try to explain to him about thinking it was a Gall Bladder attack. He releases me and tells me to follow up with my GI Dr. so I pay the $100 and go home. for almost a week I am fine, I always have a feeling of uncomfortableness in the center of my chest and then my lower right abdomen. So Friday the 4 of April. I drive 94 miles to a school where I am going to work on programming their computer network switches and routers. around 9am the pain starts again, this time comes on pretty fast and strong. I sat there for awhile wondering what I was going to do. I was in a very small town in Ohio. There was a hospital about 10 minutes away, but I decided to make the drive home. That was the most miserable 94 miles I have ever drive. I finally get home and went back to the same ER around 4 pm. this time with 'abdominal pain'.They fill me with pain meds and do an ultra sound of what seemed like everything in me. A little while later the Dr. comes back and says that my Gall Bladder is filled with gunk and has thickened. I think great something is actually wrong and it can be fixed. That's how I feel anymore, I get excited when they find something so I know that the pain is not just in my head and maybe something can be done about it. I am admitted and a surgeon is contacted (and my GI specialist), I am scheduled for surgery for the next morning at 9:30 to have it removed. about 8:00 am they take me for an MRCP to take a look at my liver. What they see is a pretty severe stricture on my common bile duct and then some stones behind it. They are concerned that if they remove my gall bladder they may create a week spot and bile will leak into my abdomen, so surgery is canceled. And they decide that I need an ERCP. I am in a smaller Hospital just outside of Pittsburgh and they don't want to do it there when there are some relly good hospitals just down the road. So a few hours later they pack me up in an ambulance and I am taken to another Hospital. 2pm Sat I am in my new room. It's a teaching Hospital so I end up repeating myself a million times to all kinds of people, I swear nexr time I go I am going to put up a schedule and have a power point ready. The ERCP is scheduled for sometime Monday, so I keep staring at the walls, all the time being denied anything to eat and drink. It has now been three days without food and very little to drink. Finally I get wheeled down for the ERCP. This is the part where I am hoping that some on the site can help me out on. 12:00 they wheel me in and start to put me under, next thing I know I hear faint voices yelling my name to wake up, it's now 2:00, it takes me just about an hour to wake up and have most of my senses back. my throat hurts and I am tired. Take me back up to my room and stare atthe walls again, still no foor or water becasue they don't know if they are going to still take out my gall bladder. Sleep on and off. Around 3:00 am Tuesday morning I need to get up and go to the bathroom, I start to sit up and can hardly move it hurts so bad, I swear ever muscle in my body is sore. feels like I did a tri Athlon the previous day. They must have contorted the crap out of me for those two missing hours of my life. as the day progresses I keep asking every Dr I see, What about my gall bladder, what about my gall bladder. They keep telling me that they will talk to the Dr. in charge.
So to finally end a long boring story, It's wend 8:13 and I am sitting at home, I can barley stand up from the muscle aches and walking is very slow. I don;t want to even think about coughing. I do have a stent in my common bile duct and I also still have my Gall Bladder, and lots of phone calls to dr's today for followups. I was going to go to work today but was threatened by my family and a few friends that I had better stay home.
So sorry for the long note, kinda my history and my most recent issue. But I am hoping that if anyone has had a similar situation, what can I expect next with my liver....
(on a side note half way into this Hospital stay some pretty sever marital issues have arisen and I don't know if that stress is helping at all....)