Nadia was just eight years old when she was diagnosed with autoimmune hepatitis. Despite warnings from her consultant, as a teenager she would only take her medication as and when because she didn’t have any symptoms. She now regrets that decision. Thank you for sharing your story, Nadia
When I was just eight years old I was taken to A&E because I was passing blood in my bowel movements. I was diagnosed with ulcerative colitis and autoimmune hepatitis, and was very lucky not be physically affected by it – except for the hospital visits, I lived my life the same as anyone else. My doctors said I was a quite a rare case and my consultant even did lectures and presentations about me at university. I’m now 30 and it’s still unknown why I have it when no one else in the family does.
Because I was so young when I was diagnosed I didn’t really understand autoimmune hepatitis and because I didn’t have symptoms, I thought I didn’t need my medication. From the age of 12/13 I started taking it as and when and would flush the rest down the toilet. At 16/17 I decided I was mature enough to deal with it on my own and went to hospital appointments without my parents. I also started drinking with friends. How very wrong and naïve I was.
My consultant tried to tell me what would happen if I didn’t take my meds. He took me to the liver ward and walked me round people who were severely poorly, but it didn’t make a difference. I thought it would never happen to me, but then I was diagnosed with cirrhosis of the liver (micronodular) and was placed on heavy steroids and immunosuppression. I didn’t like the feeling of being hungry all the time and the weight gain which the steroids caused, but I did take my meds most of the time as my parents would watch me every morning and started offering rewards, such as presents, for taking them too.
Blunt consultant
When I was transferred to the adult clinic my new consultant was as blunt as possible, saying it was more dangerous for me to take my medication as and when than not at all, so he took my tablets away completely. Eventually it started to click that I should take them, but I don’t think my consultant was comfortable enough to allow me to do that. Plus, I wasn’t getting more scarring on the liver, so my body was maintaining itself.
Fast forward to my mid-20s and I had also accumulated non-alcohol related fatty liver disease, caused by the increased appetite from the steroids. Because I also had irritable bowel syndrome, I was referred to a dietician who placed me on a low Fodmap diet and advised me to go lactose free so we could find out what foods triggered it. Everything had to be cooked from scratch and I lost six stone and after seven years of trying to conceive, I fell pregnant. I gained three stone during the pregnancy, but the good news was that my bloods were within perfect normal range. After I had my son, I lost 1.5 stone, but then my results started to creep back up again.
Given the state my liver is in means I should be bedridden, but I’m not and don’t have much in the way of symptoms apart from tiredness and pain every so often. I try to ignore it a lot of the time, but the reality is that I have chronic liver disease plus a variety of other health problems.
Just after my son’s first birthday I became pregnant again and had the same weight gain and perfect bloods during the pregnancy, with weight loss after the birth and results creeping back up.
Over the years I have had flare-ups but remain off medications. My sons are now two years old and six months old and my spleen remains enlarged (it went back down after my first pregnancy), my fatty liver remains and my AIH is very much active. Given the state my liver is in means I should be bedridden, but I’m not and don’t have much in the way of symptoms apart from tiredness and pain every so often. I try to ignore it a lot of the time, but the reality is that I have chronic liver disease plus a variety of other health problems.
I am currently waiting to hear if I will go back on medication for the AIH. I have been very clear I do not want steroids because of the weight gain, but I will take the immunosuppression which takes longer to kick in.
Body in ruins
I find it hard because a lot of people, including my family, don’t know what it’s like for me or what having autoimmune hepatitis really means. Not once as a mature adult have I been asked about any therapy so I can talk about how I feel.
When you’re a child yourself you don’t realise what’s going on but looking back, I do regret a lot of it. My body is in ruins and I’m only 30. If only I had taken my condition seriously when I was younger, I might not be in this situation. Now I have children of my own I’m committed to being better because I want to be around for them. I worry that I may have passed the AIH down to them, but they can’t be tested for it until they’re older.
If you’re diagnosed with liver disease, stay strong and remember it’s about how you treat yourself and your body that impacts your life later down the line.
