I’m twenty-five. I work with books, with words, and with people. I live in Wellington, but I lived most of my life in Auckland. I have Crohn’s disease, but it’s not who I am.
There was a time, though, when I felt defined by my IBD.
I was a couple of years post-diagnosis (ulcerative colitis, at the time) and had run the gamut of drugs (Pentasa and Colifoam enemas, Asacol and azathioprine pills) and I was still unwell. So, so unwell. Mucous? Daily. Blood? Hourly. A good day meant going to the bathroom eight or ten times, and joy of joys, not having to leap up in the middle of the night.
A bad day meant going to the bathroom eight or ten times before starting work for the day. At home, at pit stops along the way to work, at the bathroom at work. And then every fifteen or so minutes for the rest of the morning. And then maybe once an hour for the rest of the day.
And pain, pain the whole time. Anaemia, of course, because of the blood loss. Poor nutrition, because I couldn’t tolerate a whole lot of food deemed healthy (no dairy, no wholegrains, no nuts, few vegetables and fruits).
I went on a drug trial. It didn’t work. I had special dispensation given, and went on infliximab (usually it wouldn’t have been approved for left-sided colitis – mine was just that bad). It didn’t work – not enough, anyway.
And then with sighs of defeat all round, I had surgery. The inflamed, bleeding, deeply unhappy part of my colon was removed. I was left with a temporary colostomy. I was told that, over all the colonoscopies and flexible sigmoidoscopies that I’d had (approximately nine or ten at this point) my inflammation had not really grown perceptibly. Now that the nasty part was out, everything was looking up.
Everything was looking up. For a while. I got used to my ostomy. I liked it, even. To a point. There was an element of convenience – there was no more rushing to the bathroom (except in the cases of leaks – a rare experience gifted to ostomates). But there was still the underlying feeling of my brokenness being even more front and centre. My intestines were so bad at being intestines that now I had extremely tangible proof tucked under my shirt 24/7.
But I was feeling good, mostly. I was off medication, which was saying something, considering that my regime in the six months leading up to my surgery generally involved anywhere between eleven and fifteen tablets a day, depending on my pain. (Spoiler alert: it tended towards fifteen.)
Everything was cooperating. There were big life changes happening – a long-term relationship break-up, a decision to finally undertake some post-graduate study, in another city, no less. And there was the sudden announcement from my surgeon’s registrar (in a very laissez-faire manner) that it looks like Crohn’s, now that they’d looked at the biopsies. I tried not to let that alter the rosy outlook I was trying to cultivate.
But untoward things were starting to happen again, slowly but surely, and I was booked in for a follow-up colonoscopy. Three days before I was due to move to Wellington. There was no time for an appointment afterwards, only the post-procedure discussion with my gastroenterologist, who had been on my team every since Day 1.
‘We need to get you back on medication.’
My gastro and surgeons both wrote letters for my file. They told me to see a GP promptly once I got to my new city, to get the referrals underway. Within a couple of weeks of shifting into my new flat, I finally got around to making that appointment. The referral was sent.
And I waited.
And everything got slowly worse again.
My birthday is at the beginning of June. That came and went – my initial GP appointment had been in February. I spent my birthday night writhing in agony, crying, hyperventilating, wondering if I was bad enough to call an ambulance. Hindsight being 20/20, I definitely should have gone to hospital. But by the next morning, everything had returned to its dull constant pain, so I was ‘better’.
I finally saw my new gastroenterologist later that month. He read my file, heard my version of my background and my current day-to-day life and function and immediately put me on Humira injections and mercaptopurine.
And they worked. For the first time in my life, my IBD was being controlled to a decent extent by my medication. I still kept a stash of painkillers on my person at all times, and I still had an ostomy, but everything was… okay.
Like my first symptoms snuck up on me slowly, the deterioration crept up bit by bit, until I found myself in a new kind of abdominal pain, something that I’d never really felt before – not the worst ever, but it just wouldn’t go away. I went to work, as usual. I crab-walked around, ate chicken noodles, asked for seated, hidden away tasks. I gritted my teeth. I lied about how bad it was, to myself and to others.
But eventually, I realised something was seriously amiss, and had my boyfriend take me to the emergency department. This was a big deal – regardless of how entirely unwell I’d been in the past, I’d always soldiered on. But my temperature seemed to be up, I was feeling hideous, and even though it was a Friday night I got seen and admitted very quickly.
Morphine for a while was followed by anti-spasmodics and steroids. I felt better, but they kept me for a few days, just to keep things in check. I was sent home with more steroids, and resumed life in bookshop retail in December (ie. utter wonderful madness). I finished the course of steroids around New Years – and the pain returned. And the fevers. And yet again, I relented and let myself be taken in to the hospital.
This was more than just a flare, they realised. I went for a CT scan, which showed that I had a perforated bowel.
Which is as much fun as it sounds.
About 24 hours later, I was in emergency surgery. I woke up with an even shorter colon than before – but a reconnected one. My ostomy was gone, replaced with a drain – one of several dotted across my abdomen. I had a swathe of white bandage down my middle, where they’d gone all in – no keyhole procedure this time.
I spent eleven days in hospital this time. Things briefly went septic. They tried to put a nasogastric tube in because I couldn’t eat, but my apparently odd nasal anatomy quickly put paid to that plan. I slept poorly and took night-time shuffles down the corridor to try to build up strength again. I wanted to get back into the world and get back to getting better.
I was let back into the world with IBD-related injections bumped up to weekly, anti-clotting injections daily for several weeks, as well as an antibiotic regime for three months. I was off work for another month, with daily nurse visits for much of that time.
On my first day back at work, I had an interview with a Radio NZ journalist about life with IBD. It was the perfect was to bridge between my recovery and my return. I talked about most of the things that I’ve written about here. Because they are all part of the experience.
I’m of the opinion that it’s good to be aware of everything that could happen – the good and the bad. Because there’s nothing worse than something happening, and feeling like nobody else has felt this before. Knowing that others have felt that kind of pain doesn’t diminish your own – it creates solidarity in those darkest moments. There is always some light in there with you, between friends and family, medical providers, and fellow IBDers.
Are things perfect? No – I’m still injecting myself weekly (a white lie: my helpful boyfriend administers them for me, mostly), I still have foods that I can’t handle (a delicious Mexican black bean mistake was made just last week) and sometimes for no apparent reason at all things flare up. But I’m moving with forward momentum. Always. And so can you.