axxokiller

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Did a part of you ever consider to let your body do its thing and just accept that your liver is failing and you won’t be around as long as everyone else?

I have the same conditions as you, psc, uc with added autoimmune hepatitis and autoimmune thrombocytopenia in the mix. My lfts are always high but my liver is holding out, despite having cirrhosis. I’ve not told anyone but I’ve decided that when the time comes that my liver fails or I get cancer I’m just going to let it slide and not fight it. I find it a far more peaceful way to live life. I can do everything I want now, knowing I’ll never have to worry about the future.

EDIT: Fun fact - below in this comment chain there is an anti-vaccine bot using rather antagonising language. Have a look at its comment history. I’ve never discovered a disguised bot in the wild before but it’s initially surprisingly convincing. Until you start feeding it nonsense.

I should have said, when I say I don't tell anyone, I mean more medical professionals. My parents and friends know and understand my views. I'm incredibly positive and happy. I attribute my attitude to the view I take on my illness. I think without it i'd feel so limited in what I can do and at that point i'd just be trying to live as long as possible for no good reason. It's cool to see someone else who has this condition though! I'm not a big fan of messaging but if you want to skype to share experiences of this disease im totally down!

I understand you have the best of intentions with suggesting this but for people like me with this condition it feels quite insulting. I'm sorry if that sounds harsh I really don't mean it to be, I appreciate telling people about this. The reason that this feels a little insulting is because there isnt actually anything wrong with my liver, its just the immune system attacking it. Secondly, milk thistle is a herbal remedy with no scientific backing to say its useful in aih. I always go back to this joke to explain that - What do you call herbal medicine that actually works - medicine.

I am so sorry to hear that. I'm not sure how long you've been diagnosed for but just know it can be totally non impactful on your life. If you feel like chatting about it or want to speak to someone else who has it feel free to pm me :)