Today’s episode if my life, rather perfectly resembled a surrealist painting of the ongoing feeling of being torn, between two worlds, two rocky paths, or two old quarrelsome friends who claim, to be right, in believing they can help heal my Crohn’s disease.
On one rather well respected side, we have the IBD doctors, the hospital and their medicines designed to treat the effects of my Crohns – a disease not fully understood; versus the alternative camp; dietary adjustments, healthy supplements, exercise and de-stressing to help treat the environmental factors that play, in my view, such a key part in staying well.
I think any reasonably intelligent IBD sufferer, or a sufferer of any chronic illness with a few healthy inquisitive cells will at some point find themselves querying the course of action suggested by their consultant.
For me, it’s been a conversation that plays out routinely every 6 months, every time I find myself flaring. My consultant has been insistent that I consider the biologic drug – Humira. A drug that although proven to help a lot of moderate Chronies like me, frankly terrifies me. Not only because I am a needle-phobic nincompoop and desperately fear jabbing my thigh flesh on a fortnightly cycle, but because it comes with some pretty sizeable warnings. Cancer; lymphoma being the prominent one. Aside from my more rational reasons behind refusing the drug – my emotional association with a drug like Humira has always felt like admitting defeat somehow, and instinctively (if I’m allowed to have those) it’s always just felt such a big decision, and the wrong one for me.
But today I found myself in an all too familiar position. I am currently going through a flare up, feeling desperate to resolve it; as feeling exhausted, pained and passing blood really does wreak havoc with your career and social life, not to mention your will to remain positive. Over the last 5 years, I have experimented with so many diet and lifestyle shake-ups that it’s hard to even know what has worked, and why if it did, it didn’t last.
Today I had a meeting with my new consultant. I changed hospitals as my last consultant’s Humira bashing agenda become tiresome, along with his regular cancellation of clinics to accommodate his voyages across the world. I was nervous to meet my new one, and spent the morning collecting all my hospital letters and notes for them. I found myself plotting a little chart to help me remember the timeline of illness and wellness over the past 5 years which had become a total blur. I wanted to be prepared, in case typically, they weren’t…
Surprisingly, she was everything I dreamed she might be. Thorough, interested in my case history, my life, my interests, even my feelings on the proposed drugs. And even better – more than willing to book me in for every kind of test going to get an accurate diagnostic picture on my current state of IBD health before making any treatment decisions. I went along with my mum, who was nodding along and practically danced out of the clinic.
Feeling positive, with blood forms, stool pots, and CT scan appointments in hand, we agreed to meet again in 6 weeks to review the possibility of Humira or Infliximab, something I have never before agreed to.
So why did I agree to it? Plotting my little graph today really helped me realise that I had lost 5 good years of my twenties, battling this monster of a misunderstood disease. I’ve been dragged through hospitals, swallowed thousands of steroids; hooked up to IV’s, put on excess weight, lost sudden masses of weight, paraded my embarrassing moon face around regularly, felt like a horrible angry person with a beard, and struggled to help employers understand or empathise with any of it. Not to mention all the stress I put my partner and our relationship through. I realised, this morning, that these regular flares had become my normalilty. Maybe it was time to give up on the alternatives, the paleo meal plans, the downward facing dogs and endless supplements and admit that it was time to ‘just get that Humira in your leg!’ as my last consultant so tactfully put it.
That should be the end of the story. But it wasn’t. In a strange turn of events, heading home from hospital – we found ourselves walking in a naturopathic chemist, looking for something iron based to help me with my anaemia and tiredness. The assistant suggested we join the queue to speak to a naturopath who, lucky for us – gives free advice on Wednesdays. I was feeling so weak after giving 11 phials of blood that I didn’t mind a little sit and wait.
So after ten minutes, a doddery Asian man in a stained white coat invites mum and I inside a tiny pre-fab booth, constructed out of old display boards. He asks us to sit down, in the stark but messy looking room complete with posters about impotence and heart disease plastered on the walls. He reaches for my arm and checks my blood pressure using a gadget, next to it’s open cardboard box that looks borrowed directly off the chemist shop shelf. After my BP reads fine, he takes my wrist to feel my pulse. This quiet man has said hardly any words until this moment, just some gestures to sit here, give my arm etc. While holding my wrist tightly between his thumb and forefinger, we pause. He confidently chirps ‘you had a shock when you were a young girl, that is the cause of this’.
Instantly I felt my eyes roll and I engulfed the room with a cynical sigh. Today I didn’t feel like being a vulnerable believer, I had completely lost the faith in these people and felt angry that I’d wasted all these years trying to believe I could heal myself.
But my mother pressed him; ‘a shock? How can it be, what do you mean…a shock?’.
‘Don’t get over-excited, let me explain’ he replied at an uncomfortably slow speed. He started drawing questionable diagrams, explaining that because my nervous system got a shock, the peristalsis in my gut wasn’t working correctly. And because of this I had rotten matter in my bowels and I wasn’t able to absorb energy effectively. He wrote a lengthy list of foods I should eat, and shouldn’t and then prescribed me a tonic consisting of all sorts of naturopathic remedies and capsules to take daily.
Looking over at my mum, her expression seemed to have changed from weary cynic, to thankful and converted as she later happily filled the basket to the tune of £86 worth of remedies. I insisted, she didn’t need to bother, and we could just leave. But she firmly asked me, ‘what do you have to lose? What’s one more try? If it doesn’t work, then you’re back at the hospital in 6 weeks anyway’. I couldn’t argue with that.
This all happened in one afternoon. The medical action plan by my consultant, and the naturopathic guru named Mr Mistry and his strict regime of supplements and diet. On the train home, laden with a hessian bag of remedies in one hand, and a pack of ‘Biologics and you’ leaflets stuffed in the other. I felt like the perfect illustration of a confused IBD patient.
And that I suppose is why I decided to write a blog like this one.