Hi all! I’ve been living with PSC since being diagnosed in 2006. Up until this spring I have experienced almost no symptoms of the condition and I have lived my life to the fullest trying not to let it get in my way. In my case things progressed so slowly that it was very easy to almost forget that I had PSC and to not think of what things would be like when things started to get worse.
In April I began to experience fatigue and abdominal pain and finally had a bad cholangitis episode which sent me to the hospital looking quite yellow. Tests were run and i had a stent placed during an ercp. The bottom line from my specialist is that things have progressed and my common duct is extremely narrow. A transplant assessment is now in my near future.
The hardest part is the feeling of your previous life being suddenly taken from you. One day you’re doing the things you love to do, the next you are on the couch exhausted and feeling depressed. I’m completely optimistic for the future and am trying to take things a day at a time…but it’s hard. Just wondering how everyone else deals with the emotional stress and uncertainty? What keeps you upbeat and positive?
Thanks for listening. I’m glad that this community exists. We need to support each other because we all know the journey is not always easy.
Matt, good question, and I think we all have different coping methods. I am relying on the same methods that got me through having UC. Having the right mindset is crucial to dealing with all the "stuff" we have to deal with.
I try my best to:
Live one day at a time.
Focus long term, realizing that getting lost in the day to day "stuff" will drive you crazy.
Be thankful for every day, and for every day you're not in a hospital.
Know that some things I can control, others I can't, and that's ok.
Be flexible, have a good sense of humor and know that I will have bad days. And that's ok too.
I understand you all too well. I too lived pretty much symptom free for years after my diagnosis with PSC - so much so that it was easy to forget about it most of the time! I kept tabs on it via my regular g.i. doctor and my liver specialist but was always told it was in a mild/moderate stage.
I do have what was initially diagnosed as UC but the tests always came back inconclusive. I survived colon cancer at age 47 and after that I felt quite a bit better until last school year ( I taught) when the fatigue became so unbearable - I have been extremely anemic and really thought that was the source of the fatigue - because I would have some rebound after transfusions and iron. My gastro doctor did blood work and all kinds of upper and lower scopes, capsules,… to find source of blood loss to no avail. He didn’t think it was my liver for some reason. Last June I went to every doctor I knew to try to get this anemia resolved but it continued soon December I had to retire from my job which almost killed me emotionally. My family seemed to think I was just being lazy and it took several months to get them to see the seriousness of this fatigue. In the mean time I continued doctors visits telling them I was going else were for a new set of eyes to look at my case. Finally after being sent to the hospital with terrible jaundice and blood work showing liver issues I went back to my liver specialist and was told my PSC had progressed to severe and I would most likely get listed. I’ve had two ERCPs for ballooning procedures and one of a several yet to come EDG bandings and my counts have improved greatly but not enough. I have my first interview for transplant evaluation this Monday.
I try to stay as positive as I can. I am thankful for each day and as bad as I sometimes feel I know there are many out there who feel worse. I miss my job. I also became an empty nester this year which hasn’t helped. I focus on things I look forward to like my oldest daughter’s wedding. My husband has improved on helping out some and being a bit more understanding. I have just accepted that for now I do what I can and the rest can wait. I need to look into disability to supplement my early retirement - I had hoped to find a pat time job or substitute teach but my health still is far from allowing that.
Well, I’m so sorry I probably have never addressed your request for advise on staying positive. I assure you I am almost always positive about things but I am struggling right now. It will get better! I have a lot of faith that God has this under control.
I was asymptomatic for 10+ years. I always knew it was coming, but when I had my first cholangitis attack I knew that life was going to be changed for good. It was really depressing thinking that I wouldn’t ever be as healthy or feel as good as I had been previously.
That first cholangitis attack turned into many more and a therapeutic ERCP was unsuccessful (my common hepatic duct was too narrow to dilate). I was referred to the local transplant institute.
When I first became sick with that initial cholangitis attack I realized that I really hadn’t kept up with the latest and greatest on PSC given that from diagnosis up until that point it had been a non-issue. Not much had changed—still no cure or treatment for PSC, and the party line was still to wait for the patient to get sick treating symptoms as they pop up. I was not happy with the prospect of doing nothing.
The last 10+ years has offered a variety of clinical trials investigating potential treatments for PSC, including Nor-urso, Vanco, other antibiotics, and various injectables. Unfortunately (or fortunately) I was one of the PSC odd-balls with no UC, making me ineligible for pretty much any PSC clinical trial. I decided to experiment with Vancomycin because the research results were promising, there was little downside in terms of side-effects, and it was already available in the US so that I could get it prescribed off-label. I really didn’t have anything to lose by trying it and had the potential to gain my old life back.
Long-story short, it worked for me. My LFTs are normal and most importantly I’m not having any more cholangitis attacks or any other symptoms.
My point isn’t that Vancomycin is a miracle treatment for everyone with PSC (though it certainly doesn't hurt to give it a try), but rather that it is important to take charge of this fight. 90% of the hepatologists out there are going to take the safe road and recommend that you don’t do anything to treat the PSC. Do some research and if something resonates, either join a trial or attempt to emulate it off-label. If your hepatologist says no, find a new hepatologist. Most importantly, don’t lose hope—there’s a lot of research going on right now with the chance of getting you back to your pre-PSC life.
Hello, I am kind of glad that I was not diagnosed earlier, had been experiencing symptoms since my 20's. Now I am at the point of having ERCP's almost monthly. If this stent does not work they are looking at expanding my bile duct and attaching it to my intestines. I should have been diagnosed in my 20's when I had my first sphinctorotomy and I was just diagnosed last month. But I am sort of glad that I did not have to worry about it for 25 years. What keeps me going is my kids. At first I was angry and scared, now I am trying to focus on ways to make myself feel better. Today I dragged myself out of bed and got my haircut and then actually went to Walmart. Yesterday I made a curtain for my daughter's room and went to my younger daughter's dance recital. I figure if I am going to feel exhausted then I might as well just do things feeling that way, lol. So, I go to bed completely wiped, sleep 10 hours and get up and do it all over. I guess I am trying to convince myself that I am not as tired as I am. Oh yeah, and drinking the cup of coffee midday, like everyone mentions could help, also keeps me going. It also helps to know that I am not alone, I have all of you! Just do the best that you can, we can all relate to how you feel and that is all we should be asking of ourselves, we are all here for you!
Thanks everyone. One thing that I try to focus on is taking things one day at a time and trying to stay optimistic. We can’t change what has happened in the past or what we are dealing with in the present so we need to face the future the best we can!