Mental Health - Relearning how to be 'OK' with PSC?

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Howdy, This will be a bit of a story…But I need to get it out…

I (37M) was diagnosed with PSC back in 2010 after routine bloodwork found elevated LFTs, no other symptoms. It all remained very quiet and well behaved until a series of flares in 2018 had me on the transplant list and waiting for the call within a matter of weeks. After a couple of months on the list, and 2 dry runs into the the hospital, my LFTs dropped dramatically, my bilirubin returned to normal and I was suspended then removed from the list. Things went back to “normal” and I continued on with my life.

Up until November last year things had been mostly OK, no major PSC problems to speak of, and I was just getting on with everything, but I felt as if my anti-anxiety medication (celexa/citalopram) was no longer working as well as it used to, so I discussed with my GP about changing it to something else.

This turned out to be a huge mistake, the new meds did not agree with me at all, and I had to stop taking them, which caused what what was my normal level of anxiety to explode into severe territory I’ve never been into. This was over the Xmas break as well and somehow I’d lost the prescription for my old meds, and no GP was available to re-prescribe. I attempted a visit to a local emergency room, presenting with severe anxiety, needing an emergency prescription, but had to leave after not being seen for over 7 hours.

Eventually I got back on my old meds again, at an increased dose, but somehow along the way I have lost my ability to be “okay” with my PSC. It used to live in a quiet place in the back of my brain, I’d go to my appointments and never really think about it. Now it’s ALL I can think about.

Every random pain, or odd feeling is "oh god its PSC, or the cancer, or my doctors have missed something, or reading and rereading the same medical information from the frankly terrible Dr. Google.

In the overall scheme I think I’m doing OK. There’s no other health issues (mental health aside), I’m seeing a therapist, I don’t have any IBD, I see my liver specialist every 6 months like clockwork, with 6 monthly blood tests including CA19-9 and some form of yearly imaging (US, CT, MRI), and I am in Australia, so there’s no insurance worries. Despite all that, I just can’t be…okay.

In short…

How do you all cope with your diagnosis? Is there some secret strategy I’ve forgotten along the way that will allow me to put this awful gremlin back in its little box in the back of my brain cupboard? How I can not stress and dwell on the cancer risk? How can I just trust my hepatologist and go with what she says, because it’s her job. How can I get my life back?

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I can empathize with your anxiety about your health. I’ve definitely worried whenever my LFTs increase or I have the slightest abdominal pain after eating or I’m told my hepatic ducts are fibrosing and in poor condition. Two of my therapists have helped with DBT, in which I imagine the thought circling over and over in my mind is a on a cloud drifting away or on a leaf moving downstream. Imagery to get rid of the anxious thought. Often it works, occasionally it doesn’t, and I practice mindfulness breathing or box-breathing to focus only on counting seconds between breaths. I do this for five minute periods multiple times a day to re-center myself. I really hope this gives you some insight as to what you can try to release or convert some of your anxiety. We are with you.

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TiredTiger,
I know the uncertainty of PSC can be overwhelming at times, but I want to encourage you to just live life, and live it to its fullest. Don’t let PSC or the thoughts of it control your thoughts, put your thoughts into the blessings of your life such as family, friends, and being able to wake up for another day and live. If we dwell too much on the disease we will all go towards dark thoughts of hopelessness. PSC is not the end of the world, there is hope, there is help and there is a wonderful life after transplant should you need that gift of life. We have all gone through to one degree or the other what you are facing. I found that the more I educated myself about PSC, had a good care team in place tied to a transplant hospital, and communicated with my family all that I was going through, it was a big load off my mind. You need a group of close family, friends, etc. around you that have been educated about PSC by you and who will be there for you when you need them. PSC will let you know when you are going to have a bad day, then just ease back and rest, read a good book, but keep your thoughts lofty and full of hope.
Be sure and get around 30 minutes of exercise in a day, nothing strenuous just maybe a good steady walk or something you enjoy doing. It’s important to build your core strength up, make sure you are getting enough protein, etc., so if you do need a transplant your body will be strong enough. I must say that that Wednesday morning I got the call from Duke, Mr. Wilson we have you a liver, it was one of the happiest days of my life. The first thing I wanted to do after I woke up from surgery is to see a mirror and look at the whites of my eyes. White as the pure driven snow, oh what a wonderful gift.
Those are my thoughts tonight. I trust they will be an encouragement to you as you continue on this journey. We are here for you to help in any way we can.

Mark
PSC 2011 / Liver Transplant 2015
Transplant Revisions 2022

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Hi Tired Tiger,
I was diagnosed in 2007 and have had a similar experience (labs fluctuating, but continuing life pretty much as normal), with the exception of the episode on a transplant list. I imagine that as quite traumatizing. Perhaps this has resulted in some PTSD? I think it’s good you’re seeing a therapist, but maybe there’s a need for some additional help. Other than that, all the usual things such as regular excercise, taking good care of yourself physically, mentally and socially, etc. I think it’s helpful to talk to your family and close friends about what’s going on, even though a lot of folks have trouble understanding PSC.
Wishing you the best.

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I try to keep busy, although its summer here in Australia at the moment, and I just don’t get along with the heat and sun, so a lot of time is spent inside for now. I’ve tried CBT and DBT therapies in the past, but sadly they didn’t work for me, but mindfulness has helped a little.

I’m just tired of feeling afraid of…myself, I guess? Stressing when a blood test goes slightly in the wrong direction, or I feel sick or have a small flare every now and then, or I have a routine scan coming up. Everything that’s going on is generally just “life with PSC”, which I see many people on here dealing with as well, but these days I’m always jumping immediately to the worst, most catastrophic conclusions.

Sorry…just bit of a rant and ramble…

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I can relate and empathize with your feelings. I was diagnosed in 2007, had 3 ‘flares’ and now do what you do: blood tests every 6 months and MRI once a year. My anxiety does increase when I get near the anniversary of the MRI, but once I get the all clear, it eases up. I tell myself: no one is guaranteed tomorrow, regardless of PSC, so live life fully. Works sometimes. Also yoga has been helpful to calm the internal thoughts. Best of luck to you.
Suzanne

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Dear Tired Tiger,
I am so sorry for your experiences!! I think I know what you are going through. Sometimes I return from the Dr., (GP) and wonder if it isn’t all in my head.
I have an ace in the hole though. Chronic nerve pain. It isn’t related to PSC that I know of. I have spinal stenosis. Plus auto-immune issues. When you quit laughing I can tell you that I started with ulcerative colitis in 1970. Little did I realize the ride I had just started.
Just a few years ago a GI Dr. told me I had PSC but my biggest problems have always been my back. So I think about my liver sort of second hand. I have had problems with PSC now and then and I see a GI regularly.
Anxiety about what you can’t see or maybe feel right at the moment is so understandable but…I do believe that some of the suggestions above could become your best friends. I also deal with clinical depression so I have experienced some of what you are going through.
Please keep learning new ways to deal with your anxiety. I know it’s hard to get a diagnosis you don’t completely understand off your mind. It’s also terrifying to realize that the Dr.'s don’t know everything we wish they knew. As you can see, there is a whole community out here who wishes you well and will be here for you.
Sincerely, Linda

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Tiger,
After the initial shock, I started to focus on the long term, with faith that I would be able to get through what PSC sent me. Maybe that had a percentage of denial involved.

I had learned from dealing with Colitis to be prepared for a roller coaster ride-emotionally/mentally as well as physical. The mental part is just as important as the physical part. That is where faith comes in.
You will still have to get through the daily “stuff” but bogging down in the daily stuff will hurt you in the long run.

There is a lot of wisdom in the Serenity Prayer, in controlling what you can.

Yes, you will be sensitive to every little pain/ache…My macabre sense of humor translated any RUQ pain as “There goes another bile duct”.

PSC will test you flexibility, patience and your sense of humor. I did a good bit of research but remember that too much research can cause paralysis, info overload and glazed eyes.

Good luck with what you’re going through.
Jeff