Autoimmune Hepatitis (what is it?)

So the results are in.

Unfortunately for me, they aren’t the best results in the world. Following months of blood tests, a scan and a biopsy, a Hepatologist has now diagnosed me with Autoimmune Hepatitis.  What on earth is that? I hear you ask. Well let me explain…

Hepatitis is the sciency word for inflammation of the liver and there are many ways of contracting Hepatitis including alcohol abuse or a viral infection. Autoimmune Hepatitis (commonly referred to as AIH) is when the body’s immune system turns against the liver’s cells (hepatocytes) and starts to destroy it. Yes my dear Itisites, the body tells itself to attack, even though the mighty liver has done no wrong!  The cause of this disease is unclear but genetics and environment can play a key factor; I guess my immune system is currently playing top trumps with my insides.


Is Autoimmune Hepatitis curable?

AIH is a suppressible, manageable but not curable disease. There is medication to keep it from progressing and causing real damage. If AIH is left untreated, it can develop into cirrohsis of the liver. Cirrohsis, which can take years to develop, is when the liver is so badly scarred that it is no longer functions as it should and at this point you are likely to need a liver transplant. Thankfully, although my liver is inflamed and slightly scarred, my doctor has suggested that this hasn’t developed into cirrohsis, but the scarring suggests my liver has been under attack for some time.  So we found it out at an early stage!

How am I treating my Autoimmune Hepatitis?

To stop the progression of the inflammation and scarring I have been prescribed a corticosteroid called budesonide. It’s designed to target the colon, not the stomach and this is where it slowly releases and is then absorbed by the liver – it treats both my Ulcerative Colitis and the Autoimmune Hepatitis. Here’s a really cool Youtube video which shows the process of absorption by the body.

I’ll be back to see my Hepatology doctor in a month where we’ll talk about tapering down my steriod and putting me on to Azathioprine which is an immunosuppressant oral drug. My research suggests will treat my Ankylosing Spondilitis, Ulcerative Colitis and Autoimmune Hepatitis…say that with a mouth full of marshmallows!

How am I handling it? 

Well I’m honestly incredibly peeved and angry at my body for being so feeble and for a while I’ll need the space to just wallow in my own misery and shake my fist at the world. But I know that over time, with more rational thought I’ll start to feel gratitude for the fact that I’ve caught this bastard thing early enough that I can kick its sorry ass. Also, if you throw a slice of lime in a small glass of water it sure as heck looks like a gin and tonic.



My AS story

It hasn’t been all bad. It could have been far worse. I could have had a severely traumatising diagnosis which saw me with a mere few months or days to live. It hasn’t been like that at all. But it sucks nonetheless.

I was 20 when I first discovered that I had a back problem. It started with me walking to the train station after a long day at my desk job and discovering that my back pain was so acute that I couldn’t properly lift my knees and walk like…well like a human being. Albeit over a decade ago, I still remember the strange and unusual method I adopted of shuffling my feet one at a time along the ground, in order to make what felt like a gruelling trek to the station.

From there it went downhill. There were numerous calls to the doctor and even a late night call to A&E. Embarrassingly, the pain was so sharp I had to phone my parents (who were only across the landing) for help. They called for an ambulance and by the time the paramedics arrived, the pain had subsided. Awkward. I felt like a fraud. I was taken in for checks and sent home with some co-codamol and told, as I would discover would be the medics go-to phrase, that it was just ‘back pain’.

My GP at the time was no use. Unfriendly, uncomfortable and for want of a better word unsympathetic. It didn’t seem to strike him as odd that a girl in her early 20’s was suffering as bad as I was. So, it went on for ten years until I had enough. The pain although not consistent for ten years was indeed chronic. I was feeling worn down by the constant changes in how I felt each day. It was draining. I called the GP again, this time speaking to a new doctor. I was all pumped up and told him how ready I was to investigate private health care. He insisted that there was more that could be done on the NHS first. I was referred to a physiotherapist who seemed unsure why I had been referred to her at all. Within five minutes she had confirmed that I who I really needed to see was a Rheumatologist. This is where the fun began.

I was sent for an MRI and had a Rheumatology appointment which confirmed that I had Ankylosing Spondilitis – a type of arthritis that affects the spine. It was a relief. Ironically. I was simply happy to have a name for it. Little did I know that it would be just the start of more names to come.