I just wrote a long post LOL introducing myself I thought I hit add reply but it didn't show up? So here goes again.
I am 43yrs & freshly diagnosed w/ PSC actually it will be a week today. I was in the hospital for 3 days from Friday till Monday. I have been healthy all my life also work out all the time & I also train people too. So this sickness has worked on me psychologically to where I was so depressed. I can fairly say that my symptoms progressed over a 5 to 6 month period after I had my gallbladder removed in the last week of November 2011. Which was the confusing part because some of the symptoms I was having I figured it was due to my gallbladder being removed , like everytime I ate food I would get sick, bad cramps , had diarrhea to mushy stool not really a lot of solid stools. I also was losing weight & I didn't have an appetite much got to where I was actually scared to eat. I then would get chills where my body would tremble & teeth would chatter, this only happen couple of time .. Both times I was drinking something that was cold so I figured I was reacting to that... silly me. In Jan 2012 about mid month I was getting fevers like every few days my highest temp was 102.3 at the time I figured it was because I over exerted myself I treated the fevers w/ tylenol but moved over to Aleve gel caps which brought temp down. I started itching on my body in different spots no rash at all but felt itchy didn't know why that was happening either..
Still feeling all this was complications of my gall bladder surgery, especially after going to my PC doctor having a blood test which came back clear nothing alarming at all. So with me still having diarrhea or mushy poo seem like my food was just running through me. I was placed on cholestyramine powder Feb 20th & I also put myself on low fat diet. Well this helped some I could eat more & the itching was reduced. But yet after few weeks on the cholestyramine & adjusting the dosage to see what works best because the required dosage was too much seem like it made my stool mushy or even a foam type mess. I also had horrible stinky gas from the cholestyramine which then in turn had be cramping some & bloated I didn't really have an appetite as much. So I contributed my continued weight lost to that..
Fast forward 3 months later, the last week of May other symptoms started to present itself , first my urine started getting orange look to it, which I thought maybe I was dehydrated so when I dranked more water it started clearing. I went back to the ER on 4/27 where I had a panic attack not understanding what was going on with me but I felt something was not right just wanted to get some answers. Well when I went there they took my blood again, did a urine sample, & stool sample. After all that the doctor came back told me everything looked fine my liver looked good , kidney's was fine, no bacteria or infection showing up in my stool but the only thing I was slightly anemic for which he said it was so slight that nothing to be alarmed about that I should take some Iron supplements. Then basically he also said in no uncertain terms that maybe my problem was all in my head, he did suggest that I see a Gastrologist. So I went home encouraged slightly but still felt something was being overlooked.
Ok I went back to my PC explained what been going on also we went over in more detailed my blood test that I had done back in January w/ her which again was all clear. Only slight anemia that was with a big slight because she didn't feel it was nothing to alert me about. I was got my medication from cholestyramine changed to pill form Welchol because the cholestyramine got to where it bloated me so much & took away from my appetite. So after picking up the Welchol from the pharmacy w/ a shocking sticker price of $250 for which I found out I had to reach a $250 deductable on my insurance so when I get my refill it will be just a copay. I started taking the Welcol which did help some and I was back to eating regular foods, even could go back to real milk because I love cereal. I also was given Xanax which I cut in half take at night so I can sleep straight through w/o tossing & turning all night. I was still in the gym working out & having great workouts almost back at pre-surgery levels in all catagories. My appetite picked up , for some odd reason every morning I wake up very hungry. So I would eat a good breakfast always tried to eat some fruit with breakfast.
Ok lets fast forward to late may , more symptoms started to occur even though the itching had been reduced a lot I contributed to the Welchol , my urine started to darken , looking a orange to dark yellow. The final straw was I started to jaundice which alarmed my sister who then forced me to go to the doctor. Which I knew she was right so I went to the ER last friday. I was admitted prediagnosed w/ PCS but they admitted me assign me to Gastrologist who was coming in to give me ERCP the next day after my ultrasound. I must admit I was SO SCARED. But the hospital staff at Piedmont Hospital were fantastic, my GI doctor is great w/ great reviews online (Dr. Dale Holly). They treated me after my surgery in the hospital w/ IV fluids and antibiotics. They continued to take blood from me checking my levels & looking for any bacteria cultures which came clear. My billirubin numbers were going down I was responding well to treatment. Also the whole time while in the hospital I had an increasing appetite at all my meals 3 times a day also had snack at night like a turkey sandwich lunch box w/ fruit cup & sugar free lemon icy. I was released on monday after having a very encouraging talk with my GI doctor's PA because he was off work that day.
I decided to google PSC support board found this last night, & Mona I really was so encourage by reading your post , I made my 1st response here to you. I welcome any advice you have.. I do understand that everyone respond differently to treatment, medications etc. I read a lot on this site but also got off of it because some post was scary & I didnt want my anxiety to overwhelm me. But I did take a half Xanax to sleep last night.
On a good note it's 8:55am this morning I waked at 7:20am ate a bowl of rice check gluten free cereal w/ skim milk, a bagel w/ jelly & apple.. now having a bran muffin w/ cup of decalf coffee. I guess I'm still a little hungry. I'm not feeling sickly at all, wish I could go to the gym, but I'm at my brothers house in another state he's been a Godsend because he's been w/ me since my hospital visit now is watching all over me, treating me like a baby LOL. I am glad I have such a supportive family and I feel blessed to have found this board. My hopes for everyone the best and optimum health to sustain a normal life w/ all the benefits life have to offer. I want to be encouraged not discouraged I do believe the mind has a big role in your healing process.
I have also looked into the idea of meditation, what do you guys think? I looking for books & instruction on doing that.. I have downloaded Buddhist meditation app on my smartphone which I done from time to time. so we just see how that goes.
Thanks to you all for sharing and reading about me & welcome all your encouraging advice & compliments.