Primary Sclerosing Cholangitis (PSC) I'm going to die, for real.

So, I come around here every year or so to see if I learned anythng new. Well, guess what...I am one of the 5% of IBD patients to have it. It isn't a side effect or whatever bit basically, my biliary system is doing what then Crohn's does; causing inflammation in the bile ducts, liver, & upper colon (we'd add gallbladder except they took that out already). The biliary system isn't as flexible as the digestive system so each time it swells, it causes damage (which has a high percentage of creating cancers) & apparently if they swell too much they will have to do that balloon in ducts to reopen the swollen areas. I am currently still healthy. They found it in the first year apparently but there's nothing I can do. It will give me cancer or cirrhosis & I am not eligible for a transplant because I smoke & because I am on pain meds. So I am trying to stop both of those..

But c'mon! Anyone who has seen me post has to appreciate the f-ing irony of me getting over my suicidal ideation & to a healthy place mentally only to start feeling something that I shut my mouth about cause I knew it was my liver. Plus, I already have 1 suicide attempt on my record which also makes them opt against the smoker (who chose to stay on suboxone instead of going back to the drugs that stopped me going 20x a day vs the addiction) who will most likely die before my dad, siblings, & leave my beloved husband a widower by 48.

If I am very lucky (& as we can all see...why, yes,especially I am), I will live at the most 12 more years. And yeah, I've been feeling some deep inner pain under my ribs, center and right...kinda feels like some stabbed you & they're taking their time pulling it out.I'd already been doing semi okay about my pain meds too. Instead of 3 a day, I generally only need a 3rd on the week of my monthly. And I was trying really hard to pretend everything was alright & ignoring the new pains which I am still doing. So, I have a rare disease, that you literally have to register how many of us there are...no one's doing testing or trying to fix it. They just give you major surgery and put you on a waiting list...you know, when you qualify for one.

I was going to ask why the pain meds disqualified you from a transplant but I suppose it's "because addiction" and not anything actually physiological. Maybe pain meds affect the liver, but so do most of the Crohn's meds.

I hope you can manage to give up the smoking and get a transplant. And hopefully the transplant will give you a longer life span than 12 years. But yes, that is sh!t dreadful luck. I'm sorry about it.

I too just want to say how awful it is to hear that you have to deal with this uncertainty. I'm glad that the previous poster is able to provide some insight, and I hope you two can continue to communicate. I know nothing about this disease, but 12 years is certainly a long time for things to change for you. At the very least you still have time to improve your chances of a transplant. Wishing you all the best. Prayers coming your way.