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.

 

 

How to cope with waiting for test results

This morning I’m going to the hospital to receive the results of my liver biopsy. Earlier this year, elevated ALT in my blood test results and an ultrasound had doctors predicting I could have Autoimmune Hepatitis!

Following my liver biopsy a month ago, I’ve had to wait patiently, like a small child in a sweet shop, for my results. It got me thinking that sometimes not knowing what your future holds can send your mind into overdrive.

How do you not go insane while you wait for your diagnosis? Please people, learn from my mistake.

Don’t die waiting

In my mind so far I have died while waiting for a liver transplant. I’ve definitely put a tight time limit on my own mortality and thought I might even die before I receive these results. Worst case scenario is I die while I write this section of the blog post which would be both tragic and comedy at the same time.

Occupy your mind with anything that takes your mind off of being ill. Sports activities are a good shout or simply being around people who can talk to you about more than the gore will do wonders. Surround yourself with happy and positive family and friends.

Positivity is the key. You need to be in the right frame of mind to recieve a diagnosis and decide on the best next steps for you and you won’t be able to do that with a black cloud hanging over your head.

Don’t self diagnose

Some light research is perfectly fine. It’s good to know what options you might be faced with and go to your appointments knowledgeable so you can ask educated questions. However, be careful of the amount of information you consume. Especially if you find it all daunting amd don’t understand it all. It can lead to you form your own judgement about an illness and what it means to you.

Following my own research, I appear to have developed every single symptom of the disease, that I hadn’t had before and now I can’t be sure if these are faux symptoms or real life pains. Go easy on the search engines and don’t Ask Jeeves absolutely everything.

Tell someone you trust

I just reveal my fears to those I trust and who understand my condition. For me my boyfriend, mum, dad, brothers and sister-in-law are aware of my fears and have been with me through the tears and range of emotion about possibly having another AI disease. It’s always nice to know that people, who really care, are waiting for your results with you.

Tell your employer

Now this is really going to be your call as to whether you tell your employer or not.  For me its been great to know someone at work will understand if I might need a time-out from the chaos when things get too much. I had no choice, with all my various hosptial appointments, but to explain what I’m going through and the process. It also helps them to know why you may not be handling things if a possible illness is affecting you.

Good luck to all who are waiting for test results. I’ll be sure to update you on mine. Feel free to share what results you’re waiting for below.

Wish me luck!

My first 5 tips to beat feeling unwell

​I knew, when I woke up this morning, that I didn’t feel well enough to handle the day but I told myself to ‘get a grip’ and go in to work anyway. Have you had a morning like that before? 

The worst part is that I can’t identify what’s actually wrong with me; I just have a sudden feeling of being overwhelmed with all my aches and pains from head to toe.

So what do you do when all your pains feels too a bit too much? Here’s my five go-to tips, for bringing your body and mind back to normality.

Stop

Sometimes the pressure you put on yourself to keep going makes everything feel worse and you need to press pause. If that means taking a more lengthy trip to the toilet while you’re at work so you can do the next step, then find the time and space to do it!

Sense check

Try a short 5 or 10 minute meditation so you can get a sense of how your body feels. Start by focusing on the top of your head and work your way down to your toes. Try and identify what area feels painful and check whether these are everyday aches or if anything feel unusual. Unusual pains should be monitored and then may need to be reported to your GP or consultant. 

Beyond the physical pain ask yourself, how are my pains making me feel emotionally? It’s good to have awareness of yourself and grasp how much more of your day that your senses and physical body can take.

Medicate

Don’t be a hero. If you have an auto-immune disease or anything that means you’ll feel chronic or acute pain you’re likely to be prescribed some form of pain relief. If it gets too much then take your prescribed painkillers without a feeling of guilt. There won’t be a cheering audience for you when you’ve made it outside of the other end of the tunnel, that is pain, without them so do yourself a favour.

Rest or Exercise or both

Sometimes there isn’t a drug that can solve feeling ‘blah’ (that’s general unwellness by the way). Simply powering down is all you need to power up. On the other hand, it might be light exercise like stretching or walking that will relieve ill-feeling in the body. Decide if its one or the other or a combination of both that you need next.

Bathe 

You’ll be surprised how good you’ll feel after a soak in the tub. Water is really therapeutic. I’ll talk more about the power of water and the best things to use in it, in a later blog. If a soak isn’t possible then a long warm soapy shower should do it. 

There you have it. Once you’ve done at least some of these five tips, you’ll be on to a better, less stressful tomorrow. Now I’ve written this blog post, I’m off to do no.4! Rest. Toodles.