The Crohn’s Saga (to date)

When I talk to people, I speak freely. I open my mouth, and words come – thoroughly rehearsed, to a point. Every time I tell my mirror about my life, it’s a slightly different rendition of the same song. This is how it goes.

In high school, I was a swot. I went to a posh school, I was a high achiever, I was a musician. I didn’t even think to be rebellious until my last year, and my rebellion was not of the extreme variety. Most of my free periods were taken up with scholarship classes, but swot that I was (am, at heart) I had far too many, and three sessions overlapped.

So on occasion, I would tell art history I was going to French, French I was going to Spanish, and Spanish I was going to art history, and spend the fifty minutes feeling guilty while scribbling rambling poems in my binder instead. I got a second piercing in one lobe. That was my acting out.

I started university with an expectation of the same. I didn’t try very hard, because I’d never had to, and I had that support net of a rigorous private school beneath me at all times. I still did well enough to be accepted for an exchange in my second year. Before I went to Canada, though, everything started to change, even though I didn’t know it at the time. My first symptom, which I didn’t know was a symptom. A little blood, that was all. And it went away, and so did I.

Occasionally, I felt ill while I was overseas. Hindsight observation tells me that rather than simply homesick and lovesick, I was wending my way towards depression. When I got home, all bets were off. I didn’t want to be in Auckland, I wanted to be with my new friends overseas. I felt like I didn’t fit in anymore. Things gradually got a little worse. The blood came back, every now and then. I ignored it.

By my third year, I was lucky to go into class once a week. Any reprimand of my work would leave me too anxious to go back to class. I passed some, I failed some, I hated the subjects I was studying and by extension my lecturers and classmates (for the most part). I pegged everyone in the English department as intolerably pretentious. I was too, probably more so. It wasn’t anyone’s fault that I was severely depressed and getting sicker. It wasn’t mine either. I didn’t realise. And I didn’t let anyone in close enough for them to realise.

Part way through that year, I did mention to my mother that the blood was back. I’d mentioned it the first time, cautiously, casually, and she thought it was probably haemerrhoids. Which, to be fair, is generally much more likely than my particular brand of intestinal ineptitude.

She was outraged that I hadn’t seen a doctor, that I hadn’t said anything sooner. This was after I confessed that it had been happening for a while. And I was going to the bathroom several times a day. But I was twenty, and twenty year old girls don’t really want to discuss their bathroom habits with anyone, not even doctors. So I didn’t.

It wasn’t until I had a bout of horrible indigestion that I went to see an after hours GP. I didn’t even have one of my own at the time – I probably hadn’t been to a doctor in four or five years. I hadn’t been able to eat much for a couple of days, and the pain was horrible. Mum told me to mention the blood. And the frequency. And the pain, since that was properly established by that point. So I did, since I was there.

He gave me Losec for the heartburn and told me to go to my regular doctor for some blood tests. When he took notes, included on the page was ‘not anaemic’. I’ve always had something of a flushed complexion.

I went to student health a couple of days later, and gave my awkward gut spiel for a second time, this time to my newly appointed GP. I was terrified at the idea of blood tests. It was necessary, he said. ‘And we’ll get you referred to gastroenterology. This shouldn’t be happening.’

I had my first blood test. It was fine. I went back to student health. ‘You’re very anaemic. If you were elderly, and your score were a couple of points lower, we’d send you for a blood transfusion.’ Score, points, like this was a game – like golf, where the lowest score wins a prize.

I was seen at gastroenterology about three weeks later. I didn’t know this at the time, but that is fast. The waiting list, according to someone in the know at the time, was approximately 3000 people. When you’re twenty and you’re bleeding from places you shouldn’t and got my sort of score on the ferritin scale, they put a lot of urgent stamps on your file, apparently. There’s only so much that you get from that first appointment though. So I was sent for a colonoscopy and gastroscopy.

(This is the point where the listeners tend to wince.)

I drank the prep, and cried while doing it. If you’ve never had the privilege of a colonoscopy, you’re in for a treat one day. The taste of the stuff is appalling, and you have to drink a tonne of it, and when your insides are already tender and expelling their contents more than they should, it seems counter-intuitive to do anything that will help further induce that.

But the colonoscopy itself was fine. I’ve had about fifteen now, I think. I was twenty then. I’m twenty-five now.

The sedatives are brilliant. If you’re interested in your insides, like I morbidly am, being able to look at a video of what’s going on in your colon while whacked out of your brain on Fentanyl is a really great time. The gastroscopy was another story. Mercifully, it was my one and only, but choking down a camera tube is as fun as it sounds.

The biscuit after the procedure is always a close second to the sedatives. More often than not, the biscuits on the ward were digestives, the irony of which was never lost on me, even in my post-fog state.

That first time, after I’d be cleared to go and dressed myself, my mum and I sat in armchairs as a nurse explained to us that it looked like ulcerative colitis, but the doctors would have a further look to confirm this – and we’d know more at my follow-up appointment.

A classic case of UC, the gastroenterologist said. I’d never heard of it. Related to Crohn’s. Which I’d heard of, but knew exactly nothing about. Enemas, to start. They didn’t go so well. I gave up on them, for the most part. We shifted to pills. Four a day, to start. Asacol. Big red capsule shaped things. I’d knock them back with several glasses of water, having only managed to take pills without coughing and spluttering a couple of years earlier.

A few months later, still no change. Azathioprine, an immunosuppressing medication, was added to my line-up. Half a tablet to start, then a whole tablet, then one and a half to continue on with. I kept a butter knife beside my bottle of pills to crack them in half each night.

Nothing. Actually, that’s not true. No improvement would be true. Because I still continued to get worse. Blood, almost daily. Going to the bathroom what I would have estimated at the time to be around 8 times a day but what was really more like 12, minimum.

We tried that regime for nearly a year. Admittedly, these medications can take a while to kick in. And I went through phases of laziness – mostly induced through not having seen any effects. By this stage, I was heavily editing my diet, because some foods were rendering me bed or bathroom bound. No coffee. No dairy. No legumes. No wholegrains. No raw vegetables. Very little fruit.

It was a bleak time.

At the end of autumn 2012, the next step had to be taken. In the world of inflammatory bowel disease, biologics are the next step. But instead of putting me straight on infliximab, the default first option for UC patients, it was recommended that I give a drug trial a go. Double blind. I might not even be getting the drug. But it was specifically for UC, rather than the broad inflammatory approach that infliximab has, so it seemed like a good bet.

I had another colonoscopy (my third or fourth by this stage). I had to have the injections given in hospital every week. I had blood tests every week. I had a flexible sigmoidoscopy (a lower key version of a colonoscopy that doesn’t go in so far – but still needs sedative, at least for me) every month.

It didn’t do anything.

They switched me to the open label. At this point, when one of the doctors popped in to talk to me and the drug trial nurse, he recommended further pain relief, and I got my first prescriptions for anti-spasmodics and tramadol. When he left, the nurse pointed out that I couldn’t actually take them while still on the trial, because I couldn’t add any further meds. I filled the prescription and hid them at the back of my (virtually overflowing) drugs drawer.

It still did nothing. I was getting worse, every day. Eventually, we all agreed to pack it in, and I was immediately switched to infliximab infusions. For most people, going into the ward every six weeks to spend four hours in the infusion chair is a grim prospect – but compared to my weekly gallivants, it was nothing at all.

I was also finally put on prednisone, the steroid of choice for IBD patients. I’d avoided it at all costs until this point. The side effects sounded awful. And they were. This was when my depression, festering in the background for so long, finally became bad enough that I went on antidepressants. I gained weight. I had strange energy fluctuations. I got the classic steroid moon face. It helped. While I was on it.

The idea behind steroids is that you take a fairly short course of them, which you gradually taper off so your body doesn’t have super duper withdrawal issues. And with a bit of luck, your symptoms stay under control after the course is finished. Great in theory, right?

But, no. By this point, you know how this story goes. Once I’d finished the course of prednisone, nothing helped. I was going to the bathroom, blood and all, about 17 times a day on average, I’d estimate. I lived in Ponsonby and worked in town – and would often stop three times to use revolting public facilities in the half hour walk to work. I’d be dashing out every fifteen to twenty minutes all morning. Afternoons were usually a little better, for one small mercy. But I was still so, so sick.

I was taking somewhere in the realm of fifteen pills a day. More, depending on my painkiller needs. Four Asacol in the morning, along with my tramadol and paracetamol combo to kick off the day. More painkillers and soothers in my bag all day at work. Four more Asacol, one and a half azathioprine, an iron tablet, more painkillers, and an antidepressant at night. When I was on my full dose of prednisone, four of those too.

So, surgery. Surgery is what comes next. Surgery to remove part or all of the colon. In Crohn’s disease, usually only the affected portion is taken out – because the disease can affect anywhere in the digestive tract, as much needs to be kept as possible. In ulcerative colitis, what I was diagnosed with, usually they take out the whole colon – because it only affects the colon, so the problem is eliminated.

However, I was a special case. Generally, people who were as sick as me had pancolitis – inflammation through the entire large intestine. I didn’t – it only affected the left side of mine, which had posed its own problems – special sign-offs for pancolitis-reserved medications, for one. It also meant that a decision had to be made – all, or some?

My surgeon was the first one to float the idea that it could be Crohn’s. Even though the inflammation was ‘textbook’ UC, according to my gastroenterologist, my surgeon reckoned that the inflammation went a little lower than was typical. It was decided that if possible, I’d have just the problem area removed.

On my wristband going in to surgery, as well as my identifiers, it read ‘Hartmann’s procedure +/- sub-total colectomy’ and ‘laparoscopy +/- open’. Which meant that I could wake up with either part of my colon gone, or all of it – and tiny scars or a giant one right down the middle.

And either a colostomy, or an ileostomy. I didn’t mention that yet, did I? (This is where the bigger gasp comes up from the audience.) Either way, after the procedure, I was going to have a temporary ostomy – a hole created in the abdominal wall for the intestine to have a new terminus. And the associated baggage.

I woke up have undergone a laparoscopic Hartmann’s procedure (or partial colectomy), with a new colostomy formed. It was amazing. My life could get back on track. I’d get it reversed in the summer, probably, and then have healthy insides and no colostomy.

But life happens. My boyfriend of three years broke up with me less than two months after my surgery. I decided I probably needed to leave Auckland for a while. And in the follow-up appointments, it was pointed out that actually – based on the biopsies taken from the removed intestine – actually, maybe it was Crohn’s all along.

So I had a new diagnosis. And a broken heart. And a colostomy. I decided to move to Wellington to study publishing. But after a final scope a week before I was due to leave (colonoscopies with an ostomy are even more bizarre) my gastroenterologist noticed that things were looking a bit iffy still. Or again. I’m not entirely sure. Either way, he told me that I needed to get back on medication. He put relevant notes in my file.

I moved to Wellington in January.

I tried to do everything right, within my abilities at the time. I got a new GP straight away, and told them that I needed to be shunted into the Wellington DHB’s gastro system. I was told it would be done. A few weeks later, I got a letter from the DHB bookers saying that an appointment would be made for within the next four months.

I was frustrated, but hoped that that was just a broad window in case anything should go wildly wrong.

I was in the system, I knew that much – I was dealing with stoma nurses for supplies and check-ins. But they had no sway over gastroenterology booking.

By the end of March, I still had no appointment. I was getting worse, again. I had no IBD medication, only painkillers.

Finally, an appointment was booked. For mid-June. My birthday is the 2nd of June. That night, I was in such excruciating pain that I tapped 111 into my phone several times, but never quite pushed the call button. I was in agony, but I reasoned that I’d been in similar agony in the past, and it would be better by morning.

I am stubborn. So stubborn. More than one gastroenterologist had, by that point, marvelled that they hadn’t seen me come through emergency, with symptoms as bad as mine were. I always toughed it out – something that I regret. Because if I’d fessed up, maybe things would have become clearer sooner as to how very sick I was.

I was better (‘better’) by morning. When I met my gastroenterologist a couple of weeks later, he was appalled. He was so frustrated at the bureaucracy that had cost me these months of treatment.

Because I was so bad again, he put me straight on Humira – another biologic, one that I couldn’t have prescribed when I had my UC diagnosis (ah, Pharmac) as well as mercaptopurine tablets (another immunosuppressant like the azathioprine I mentioned all those paragraphs ago)

Now I had to inject myself. A pen to the thigh (or stomach) once a fortnight. And I did it, too. I tossed back my pills. I started doing better. It was amazing. For the first time ever, something medicinal other than steroids or painkillers was helping me manage my condition. I still had the ostomy, but that was okay. It was a necessary evil to help me be better. So it was, in fact, amazing.

Towards the end of the year, though, things started getting a bit hairy. I had met someone new, and had a couple of major ostomy disasters in his bed. He dealt with it, which was unbelievable to me. But at the beginning of December, I started to get a new, sharper pain in my gut. The fact that it was a different breed of pain to what I was used to scared me.

For the first time ever, I let myself be taken into the emergency department. I was in a lot of pain. They hooked me up to morphine pretty quickly, but even that didn’t tackle it much. The next morning, the duty gastroenterologist got me on a steroid trip, as well as Buscopan – an anti-spasmodic. I felt much better. They kept me in for three days, which drove me crazy – December in a bookshop! Not a time to be away! – but sent me home with prescriptions for both.

The course of steroids ran me through to the new year. I was fine through the Christmas rush. Then, stopping the steroids, the pain promptly returned – just as bad, if not worse. I swore to myself that I’d get medical attention sooner this time around – but it took several evenings of agony combined with fevers to get me to go in again.

When I explained the fevers to the triage nurse – and she took my temperature to confirm – she asked why I didn’t come in sooner.

‘I didn’t know it was that bad,’ I said. I was scared. I didn’t know what would happen next. More steroids? Or would I feel terrible again as soon as the next course was over?

This time, they gave me a CT scan.

Thank goodness.

Because I had a bowel perforation. Less than 24 hours later, I was in emergency surgery. I didn’t have time to look at what my wristband said going in this time – I was scared and in impossible amounts of pain. But I came out of it with another 15 cm of bowel removed, a giant incision down through my belly button– and my ostomy reversed.

My first memory coming to in the ICU is of the nurse telling me ‘you’ve done really well’ – like they always do – and following it up by informing me that they didn’t think the morphine was cutting it for me, so they were going to add some ketamine.

Never again. I’ve tolerated morphine wonderfully in the past. It’s bloody great. Ketamine is the devil. I need to get that written on my file. No. Ketamine. Ever. The ‘trippy’ aspects of it were horrible – the last thing you need when you’re in intense pain and can barely move.

After my first surgery, recovery was fairly easy. This time, I was in hospital for 11 more days. Things weren’t behaving. Things weren’t digesting properly. They needed to put in a nasogastric tube to drain my stomach contents.

Problem was, they couldn’t. Two nurses – one who had purportedly done this a thousand times – each tried both nostrils, and couldn’t make it happen. It was the most horrific discomfort I’ve ever experienced – like someone was trying to stab me in the middle of my head. Fortunately, I was due for another CT, and that confirmed that there wasn’t any physical blockage – things were just taking their time. No more nose stabbings required.

Then there was Bad Lure Sunday. My main drip lure had worn out its welcome – the vein had basically packed it up, and all other lures had been removed. It was a Sunday – AKA the worst day, staffing-wise. The nurse couldn’t find a vein, and called the house surgeon. He took about two hours to get there. He couldn’t find a vein. They called the duty anaesthetist. It took nearly another hour to get that sorted, and the orderlies wheeled me down.

This was three hours without IV painkillers, by this point – and I’m a bit shaking on the timing, but this was either just before, or just after things were going septic for a while there. It was excruciating.

The anaesthetist couldn’t do it freehand, either. After about forty-five minutes of trying, including using fancy little devices to look for veins, I had another lure – and had my painkillers back in action. Ketamine included, regrettably, but needs must, in those circumstances.

I had six weeks off work, all up. We moved house in that time – that was a treat. Nurses came to visit me every day, then every few days, then weekly – then I was strong enough to go to them. My wounds were thoroughly cleaned and dressed, and took a lot longer to heal than my minimalist incisions from the first op.

I was on antibiotics for three months, and anti-coagulant injections for three weeks. My boyfriend was a saviour and did those for me – I can handle pens, but I’m yet to manage to syringe myself. My Humira was upped to weekly – it still is.

But this time, I really got better. That hospital misadventure was just over a year ago now, and I’m easily the healthiest I’ve been since first getting symptomatic way back in 2008. I can eat anything, for the most part – my weight gain over the past year can attest to that. I have no colostomy, only some thoroughly impressive scars where it used to be and where they cut me open.

I’ve been a voice. I’ve spoken on Radio New Zealand about Crohn’s, I’ve written for places about colostomies and young people. I’ve been involved with Crohn’s & Colitis NZ. I’ve helped give lectures, clearly.

(This is where I’d gesture to the crowd.)

My health has meant I’m not where I thought I’d be at twenty-five. I don’t have a Masters. My grades were average at best for most of my study. I feel like I’ve let myself down, in a big way – even though it was due to things entirely out of my control.

But at the same time, without sounding too trite, things have worked themselves out. I’ve been horrifically persistent with working – surgical recovery has been the only chunks of time I’ve had away from work, even if I realistically should have had time letting government benefits do what they are designed for.

But I’m writing. I’m creating. I’m in a healthy place, in mind (mostly), in body (mostly) and in life (almost always). I have a partner who I know can handle me at my medically difficult. And I’m not afraid to talk about things that I used to avoid. I’m Briar Lawry. I’m 25. I’m a writer, a book dork, a coffee junkie, a grammar freak, a poutine enthusiast and self-injecting Crohn’s-managing wonderwoman.

And I’ll tell you anything you want to know about it.

2 thoughts on “The Crohn’s Saga (to date)

  1. I think your first GI did you an injustice putting you directly in a clinical trial. That is saved for a last resort- and in a clinical trial you have the chance of getting the placebo! Also, in the states they prescribe remixade, humira, and simponi for UC for biologics. I don’t know what’s available to you where u live- but the dr should of put you on remicade first. I know you moved; so I hope you have a new GI. I didn’t get a chance to finish reading your story but I will. Wishing you health and happiness! Keep fighting through this brutal disease!

    1. In New Zealand, Remicade is the only biologic currently approved for UC (I know Humira is in the works, though) – and it was a weird red tape thing, because usually I wouldn’t have been able to get it for left sided colitis at all, only pan-colitis. It was a bit weird, you’re right – but since I didn’t respond to the Remicade either, it wasn’t the worst thing that could have happened. Aside from being swayed that way by the head of gastro, that GI was fantastic, for the most part. My most recent GI was also great – and since I’ve just moved again, I meet my new one on Thursday! Excited and nervous. Always persevering 🙂

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