I thought I would share my story with you. I got diagnosed with AIH in November 2012, after a long long struggle. This story is a long one and it starts when I was little.
At the age of 7 I started to experience severe stomach pains & my parents found themselves taking me to A&E at least twice a month.
My pain was put down to growing pains or not wanting to go to school. This "diagnosis" neither satisfied me or my parents, so they demanded further investigations. In December 1996 I took ill again in the night and my parents were on the phone to emergency doctors, who put my stomach pains down to over eating, as it was coming up to Christmas. After 4 hours of screaming in pain, my parents took me to A&E yet again. Within 2 hours of being in A&E I found myself on an operating table having my appendix out. The symptoms persisted, along with the itching I have had all my life. So I was sent for allergy test, put on eczema treatment & a non-fat diet.
I guess I just learned how to live with the pain and the fact that I would never get any help.... I used to get severe pains about 2/3 times a week at this point.
Fast forwarding now...In 2010 I fell pregnant, needless to say I was over the moon, but the joy didn't last long. By 17 weeks I was itching that bad that my hands and feet were bleeding, from scratching them on rough doormats or anything rough enough to relief the itching. My GP a visit who diagnosed me with pregnancy eczema, so back on different creams.
By the time I was 26 weeks pregnant, still itching like mad, my stomach pain worse than ever, severely sick and no one listening to me, I got fed up and called in a private midwife. She explained my maternity notes to me, but neither of us really had a clue as to what was going on.
At 28 weeks I went for a regular midwife appointment. My blood pressure was 190/120 so I was sent straight to hospital for blood tests, this is the point where we are getting closer to a diagnosis. The pains started in 1995/1996 and we are in 2011 at this point.
I waited in hospital for my blood results (possibly the longest 4 hours of my life). The midwife came in and says "Your liver looks abnormal, but we can't say what it is. Just go home enjoy the weekend, come back Monday. If you are worried at all, don't hesitate to call!" Well, my response is obvious, I was worried then, I didn't want to go home not knowing what was wrong... Am I ok? Is my baby ok? I ended up going home, as arguing with the hospital staff didn't get me anywhere.
I went back to the hospital on the following Monday and was told I had Obstetric Cholestasis, a rare liver condition in pregnancy that makes you itch. So at last I had a name for the itching & the pain, but wasn't given any treatment, just a few consoling words "It'll go away when you give birth". The famous last words....
I gave birth to my son in August 2011 & was sent for blood tests 2 weeks after giving birth. My liver still abnormal. 4 weeks later liver still abnormal.
The hospital discovered gallstones & put my pain and abnormal Liver Function Test down to these. I argued with the consultants at hospital about having my gall bladder out, as I believed that there was an underlying problem. I ended up having my gall bladder out in May 2012 and never heard from my consultant again. I guess for them I was another closed case.
I still didn't feel any better & decided to ring my GP and demand a blood test, this was 6 weeks after having my gall bladder out. My Liver Function Test came back worse than ever.
I was put back into the care of the hospital and a lot of tests followed, liver biopsies, MRI scans, ultrasounds scans, weekly blood tests....Yet still no treatment.
I went to see my consultant again in November 2012, where I was told that it looks like I have got AIH and was handed a prescription for Prednisolone.
No one explained what AIH was, if it'll go away, if I will ever be pain free... At this point I cannot remember a day in my life where I haven't had pain.
My world shattered, I felt lost, alone, scared...No one to explain to me what was wrong, no one there telling me it will all be ok, as no one in my family knew what AIH was.
I rang my GP and asked him to refer me to a liver specialist, as I didn't feel like the consultant I had previously seen actually knew what he was talking about.
In May 2013 I finally got to see a specialist and was put on Azathioprine, alongside the prednisolone. The liver specialist was fantastic. I finally knew what was wrong, I got all the answers I wanted & needed.
I could finally start to live with my liver disease.
Since May 2013 I have relapsed four to six times, basically every time the consultants have tried to take me off the steroids. I was just recently told that I will always have to take my steroids and won't be able to come off them.
I am not going to lie, it's not easy being giving this diagnosis and it's not easy to tell people how you feel, as AIH is not visible. A disease that isn't visible to people usually means it's not that bad (in people’s heads). I have bad days, where I just want to sleep, my whole body aches & I don't want to see anyone, but my loud & happy personality usually takes over & I quickly snap out of it and just carry on. I am slowly learning to live with AIH (& all that comes with it) and I found some great advice on the internet.
Whatever you do, look after your liver, you only have one.