So what’s the cure??
There isn’t one. I am receiving treatment from the NHS in a hope of being able to manage my symptoms. So far I have received 4 different forms of treatment.
The first was steroids given to me in early 2015. Prednisolone aims to reduce inflammation rapidly, but sadly did little to help me. Instead I got the pleasure of the long long list of side effects associated with this medicine. The most obvious being 12kg in weight gain. It caused my entire face to blow up like a hamster, a side effect commonly known as “moon face”. Just what every teenage girl wants approaching the summer holidays! This really affected my confidence and as vain as it sounds, and since this treatment wasn’t even working, all I could think was that at least before this all started I looked good, and I could hide the problems going on inside my body. Now I felt like shit, and I looked shit.
Next we tried Azathioprine. In the body, azathioprine is converted to mercaptopurine (6-MP) and thus has the same effects as that chemotherapy drug. Yes, my hair did start drastically thinning and falling out, hence the new short haircut. Bizarrely, despite working in the same way many cancers are treated, prolonged use of azathioprine actually increases the risk of developing certain types of cancers (eg, leukaemia, lymphoma, skin cancer). I took this drug for over a year and so having to contemplate the seriousness of the side affects isn’t something I’ve found particularly easy, but taking the risk, is better than the alternative of active Crohn’s.
Sadly alone, this drug was not strong enough and after seeking NHS funding I began treatment using a more potent drug Infliximab. This involved sitting in hospital on a drip every 4 weeks and being told by pitying old people that I’m far too young to be in this ward of the hospital. Just my idea of fun! This drug was incredible though and so worth the pain. I found myself able to do things I hadn’t been able to do in years, I was sleeping through the night, and had the energy to go to the gym and study well. It was life changing. Tasks such as leaving the house in the morning suddenly became a simple choices instead of mountains of anxiety and exhaustion. I felt like my life was back on track… but unfortunately after two months of perfect remission, I had an anaphylactic reaction to the drug and had to stop treatment.
Now I take a new treatment called Adalimumab (I cant say it either), this is an immune suppressant and works in a very similar way to Infliximab, but every 2 weeks I inject myself with it. It comes in an easy to use pen, very similar to the kind that many diabetics use to inject insulin.
This medication is thankfully holding me in remission at the moment and I am incredibly grateful to have been given the NHS funding for this treatment as its costs over a £1000 a month.
Now this drug is great, and gives me the opportunity to live and almost normal life but I have to face up to the fact that this drug can also affect other aspects of my life. Taking this drug is undoubtedly saving my life but at the same time I face the risk of side affects that include Leukaemia and Lymphoma, heart failure, skin cancers and serious issues with my fertility. It also has the downside of giving me the immune system of a newborn baby. If I get a simple sore throat or a chest infection, it’s straight to A&E. It also limits my travelling a bit too, as if I were to be given a live vaccine, for example, a rabies jab, I will literally just get rabies. I shit you not. So no South East Asia for Lolly…#gapyar