Living with PSC 20+ years and have questions...?

My name is Janieg and I’ve been living with PSC a better half of my adult life. I got ULCERATED COLITIS at age 13 and have been trying to manage stress every since. 3 of 6 members in my family died while I was growing up, making this task difficult, coupled with stress related mentle issues. Nevertheless, taking loads of meds on a daily basis, including the herbal remedy “milk thistle” 2x/day for the liver and organic fruit/veggie supplements I’ve managed to ward off this terrible disease for quite some time.
I am however, having some if the symptoms I’ve read about on this site…a somewhat sharp pain in my right side that seems to come and go. I’ve sometimes had pain towards the front that would come and go but nothing to speak of. My liver profile has been pretty good until 2 years ago when an MRCP showed a blood clot in my “right hepatic vein/dvt.” I’ve had to be on coumadin every since. Just one more med and just last month I had to start taking metformin because one of my other medications that I’ve been on for over 10 years caused weight gain, thus onset diabetes. Thus medication no matter diet or exercise has made it difficult to lose. I’ve been feeling crappy but don’t know if it’s the new med (metformin), the fact that I was just plain sick with a cold or perhaps getting some symptoms of PSC? I’ve gotten real good at ignoring my PAC, but have been mire concerned as if late.
I read about all the symptoms I can expect to happen and the point at which a person goes on a list for transplant…
I’ve thought about it for a very long time and there’s a part if me that’s not sure I want a transplant. Is that completely wrong to say that??!! I’ve not had it easy through the years with ALL THE DRUGS I’ve had to take and then to think of even more. At this point I can’t take Tylenol because if the liver and I can’t take Ibuprofen because I take Coumadin/Warfarin.
The problem is that it sounds like a pretty painful way to go…
I’m just curious as I know this is a support group. I don’t want to sound like I’m not wanting support as I do. I’ve been in support groups my whole life. I just wondered if anyone else has ever felt like this or if I’m just the odd ball??:thinking:

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Bravo Janieg for keeping yourself in good mood.
Our ambitions are our killers.
Best drug is forget of some desires.

I have been actually feeling much better from my posting in Dec. I found out I had a bad reaction to Metformin and went off it, feeling so much better.

I do however, show spots of cirrhosis within my liver, so apparently this evil disease is progressing. Fortunately without any pain at this point of PSC.

Nevertheless, I have chronic pain with osteoarthritis in my knee and foot and due to liver and blood clot from PSC I can not take typical Ibuprophen or Tylenol. I’ve been researching the possibilities of medical marijuana since I don’t like taking opioids or muscle relaxers. Anybody ever use for pain?

I’ve been working on diet, excercise and anything to help with all issues I have. I’ve always been very pro active mentally (COGNITIVE) regarding any and all problems I’ve had to address in my life and it really makes a difference the way we think about things.

We can only take one thing at a time and deal with it as it happens.

Best to all!


Hello There,

I dont think youre an oddball. With a disease like PSC we all get all kinds of thoughts in our head. The pain and quality of life worry me too but I think its worth it to spend more time with our loved ones.

You’re absolutely right. Since the 1st time I was diognosed (many years ago) I’ve been trying to live life like it’s the 1st and last day. My husband and I have traveled as much as possible. I also have traveled a great deal with my mother, while singing in a classical choir. My husband and I are going on an Alaskan Cruise in a couple of weeks to celebrate our "25th Anniversary. A month ago I wasn’t sure I would be well enough. And although both of us have pain in our legs and feet, we are determined to do this and have fun.

I learned at a young age…our family traveled a lot, as both parents were teachers and we could, during the summers and holidays. Well, since 2 brothers and a father have passed, if we didn’t have those vacations as memories, I wouldn’t have anything. We can have possessions or we can have MEMORIES! I choose memories. Anyday!! They stay with you…in your mind. You remember the good times with the loved ones. Possessions rot away. I will continue to try and have these memories with the family, friends and loved ones around me until I can’t…One day at a time!!
Hope this inspires just one person!

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