Nothing like spending a Saturday evening in the hospital is there?
That’s where I was two weeks ago, after a painful afternoon of sickness, I succumbed to my body and was taken to our local A&E department. I got assessed, had my blood taken, lots of poking and prodding and then proceeded to wait for my test results. They came in, gradually over the next couple of hours; move from a stomach bug, to a infection, to a possible Crohn’s flare up, to finally a inflamed and angry liver: my ALT level was 214 – it is usually between 0-45/50 in health people, higher if the patient is on medication or had an autoimmune disorder; of which there are plenty – and had rocketed since my last blood tests only three weeks prior.
This, of course, was nothing new to me; I knew my liver was a problem. It was first discussed / mentioned to me back last summer whilst I was awaiting Infliximab funding, but then it came down to a agreeable 48 and was not brought up until post Infliximab #3 (roughly mid January) but without my GI to advice me, I was at a loss as to what to do. And, unfortunately, your liver is something you don’t necessary feel pain with; or at least I didn’t. I still don’t, but my inconsistent symptoms of the recent weeks – increase in acid reflux, chest pains, hiccups, fatigue, soreness under my right shoulder blade – are becoming significant now that I know my liver is inflamed and there is no reason as to why, yet.
Possible causes could be hepatitis, gallstones, my Infliximab, my Crohn’s, liver cancer… none of them stand out or have much corroborating evidence to pin point which it is. What my GI did this week was order more blood tests – and lots of them which I still don’t know what they are, and I’m thinking maybe I don’t really research them, at least not now – to assess if I could continue with my scheduled infusion on Monday morning. If my LFTs (both liver function tests) were low enough – of which he couldn’t specify on and nor do I know now of – I would still attend my appointment, get my infusion and get retested in three weeks.
This afternoon, the call came through, Infliximab on Monday as normal, the blood work showed my levels were coming down. BRILLIANT! I could finally get the panic of not having my medication off my mind, plan my weekend – my pre-26th-birthday weekend – and enjoy myself without worrying.
Then I began to wonder – what if it was my Infliximab and in three weeks, my liver is back up? Methotrexate is my next drug option if I have to be taken off biological treatment. If it isn’t my biological medication, what is it? Could it be gallstones? If I am honest, I am most comfortable with this possible outcome; it is the most likely at present and with a history in the family, I know what I am up against. Some familiarity would be nice, for a change.
My feeling here is that despite that things are now taking a different path – albeit the same one, but with more awareness and possible complications – it’s a path nonetheless. It’s stepping forward, it’s growth, it’s understanding, it’s fighting one day at a time with this disease. It’s learning that every day that I get through it, I win. It is knowing that I am strong enough to put up with this; Crohn’s disease and its complications and annoying side effects, and I am one tough cookie. I have not given up! It doesn’t matter what I look like or how I dress or how heavy I am, nor how I best spend my free time. What matters is that I am living with a incurable, invisible illness. I am not the only one, but I am here.
I am here.