Idiopathic Cirrhosis

I was diagnosed with idiopathic cirrhosis in 2010 aged 18 and since have had a beautiful baby girl. I was wondering if anyone else has idiopathic cirrhosis and if so what is it like? I don't feel too bad day to day but then again I have never drank or smoked and the only medication I am on is for possible Crohns disease and B12 and Iron. Has anyone been able to conceive after being diagnosed with cirrhosis? My liver consultant said that I am a pretty unique case as far as she is concerned and she has been in conferences with liver specialists from all over the world asking about me. Am I really that unique?

2 Replies

  • Hi Jessica. I've posted on your other thread, but just to say on here that as far as I understand it 'idiopathic' means 'of unknown cause', so difficult to say if you are unique as there may be other people out there with liver damage from an unknown cause.

    I guess your possible Crohns plus the liver damage may make you unique? My hepatologist treats many patients with both Crohns and viral hepatitis which has caused them liver damage. Its called 'overlap'.

    I'm puzzled by why you are on iron supplements if the biopsies you had showed too much iron in your liver? I know you have low levels in your blood, but your other thread said you had too much in your liver. Iron overload in the liver left untreated will cause fibrosis and cirrhosis long term, which to my uneducated brain says this is potentially the cause of the liver damage? Or has that been ruled out for some reason.

    Congratulations on your beautiful baby. I had a baby after having liver disease for 20 years, so yes its possible to conceive with a poorly liver.

  • They have ruled out any causes due to iron. My obstetrician wanted me to be on Iron supplements during pregnancy because it could cause complications (which still occurred) during birth. I went over this with my liver consultant and she seemed to be ok with it after doing a few tests. I think now though my iron is slowly going back to normal so I will soon be off the supplements.

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