‘I’m his wife, soul mate… and carer’ Amy Jones opens up about her husband’s illness

When writer Amy Jones met her husband Garry, she had no idea that their romance would involve midnight trips to A&E, feeding him, even helping him to the bathroom. She reveals the agonising toll his illness took on them both – and why it made her fall for him even more.

Amy Jones
Amy and Garry on their wedding day, 2015. Image: Joanna Nicole Photography.

Around midnight, I was doing some university work in my bedroom when my boyfriend’s brother called me. ‘Garry is being taken to hospital with severe chest pains,’ he told me, like it was the most normal thing in the world. ‘Can you come?’

This wasn’t the university experience I’d expected. At 19, my life was so different to that of my peers. They were going out to parties, having casual hookups and spending blissful hours doing nothing, while I was constantly on standby for Garry.

But of course I could come. The PJs came off, the jeans went on and I drove to our local hospital so quickly that I got there before the ambulance.

The doors opened and Garry, lying on a trolley with monitors and wires all over him, lifted his head. He saw me and attempted a smile. I smiled back, standing aside to let the paramedics wheel him into A&E. ‘God, he’s sexy when his hair is all fluffy,’ I thought. Not the time, Amy. Give it a few days, he’ll be fine.

Garry was on a cocktail of medications – including steroids – so there was always a worry they could affect his heart, hence why he was admitted. He ended up staying overnight on a drip to replenish his fluids. In the morning, his test results were inconclusive, so he was sent home with an increased dose of steroids and an appointment with the consultant, but nothing came of it.

A few days was all it took for him to recover. Garry has ulcerative colitis – or Crohn’s disease, we’ve never been able to get a definitive diagnosis – a chronic condition that means ulcers grow on the lining of his colon and burst, causing intense pain and frequent trips to the toilet.

Amy Jones husband Garry
Amy and Garry in Paris for her 21st birthday, 2011

If that wasn’t enough, he also suffers the side effect of debilitating arthritis which can attack any part of his body – for example, his stomach might be fine but his leg will be so swollen he can’t walk.

We met when I was 15 and he was 21. He taught at the local music college, where he played in the wind band I was a member of. We didn’t get on at first – he seemed angry, insular and unfriendly while I was excitable and perky – but after four years and a chance conversation after a performance, we fell for each other hard.

The first three weeks of our relationship were loved-up bliss, but then he had a bad flare up while we were out together in Birmingham and ended up needing to rush home, clenching his teeth and grunting in agony the whole way. That’s when I found out about his condition – that it was more than just a bad stomach. I discovered that this illness, which he’d had for almost the entire time I’d known him, was the reason he’d been so angry and antisocial. He was almost always in intense pain.

After experiencing the effects of his colitis on a regular basis, I quickly realised that if I wanted to continue dating him – which I did, desperately – then his illness was going to be a big part of our lives. Sometimes he was fit and healthy, able to cook for me and take me on day trips around the country. Other times he was helpless and weak, in so much pain that he couldn’t get to the toilet on his own. It was hard on both of us. Because he could go from having no symptoms to being totally immobilised by them (on a weekly, daily, sometimes hourly basis), I was constantly having to switch from being his girlfriend to his unofficial carer. I was at university for the first three years of our relationship, when his colitis was at its worst.

There was an entire summer where the only thing he could keep in his stomach was ice-lollies, which was preceded by a weekend in Paris where we’d eaten like gluttons and walked for miles during a period when he was in remission. There were endless afternoons spent in Starbucks, people-watching while sipping coffee and making plans for our future – which would often be followed by him having a colitis flare-up and needing me to help him get undressed and rub pain-relief gel into his arthritic shoulder so he could try to get some sleep. We never knew what to expect. It was exhausting to wake up every morning hoping that this would be a day where he wasn’t in pain, only to have those hopes constantly dashed.

And it was lonely. It’s hard to be that vulnerable in front of people, so Garry wouldn’t let others see him at his worst – it took months of reassurance to get him to let me help him, because he was so humiliated by the effects of the colitis. Our families lived nearby and they and our friends wanted to help, but there was only so much they could do.

They couldn’t feed him when his hands were too stiff to hold a fork, or cuddle him while he cried. They certainly couldn’t help him in and out of a shower, seeing his naked body either skeletal from months of starvation and constant bleeding or swollen from steroids. They didn’t have to force him to drink a laxative solution to prepare for colonoscopies, even when he was choking because it’s so foul, or make him do physio exercises that left him swearing from the pain.

They didn’t understand why I had to cut the chicken off the bone at a restaurant for him, like it was a big joke and I was being a fussy girlfriend, not appreciating that it was because he physically couldn’t do it himself and it was humiliating for him. It was all down to me.

But then, I had Garry, and together we managed to find an odd kind of joy in the most miserable of situations. We made inappropriate jokes constantly, in dull hospital waiting rooms or while he was limping round our hometown with the aid of a walking stick. After one particularly harrowing meeting with a consultant, Garry nudged me and pointed at something. ‘Whatever you do, don’t press that button,’ he deadpanned.

I looked where he was pointing – a hastily scrawled sign saying, ‘Press for endoscopy’. After the miserable day we’d had, it was just stupid enough to break me, and I laughed so hard I had to hold on to the wall for support.

We took that joy with us even when his health problems eased off. We have become so good at making each other laugh because we had to learn how to do so during those long months when there was nothing to laugh about.

Garry found a combination of medication that works, and we’ve had about seven years of basically good health – but the shadow of him being incredibly ill still hangs over us. Sometimes he’ll have a bad stomach or an aching shoulder and we immediately panic that our luck is up. Although we breezed through our wedding day without any problems, Garry’s knee seized up on our honeymoon to Orlando, Florida. He needed an emergency trip to A&E when we got back to the UK and it became sharply worse. The terror I felt that our lives were going back to how they used to be was explosive. I don’t think that fear is ever going to go away.

Garry being so ill when we first got together definitely fast-tracked our relationship. We were forced to be incredibly vulnerable and honest with each other, so now there’s nothing we can’t talk about. We know how to have fun, how to comfort each other, how to support each other.

We’ve been together for ten years now and married for four. Garry is working as a police officer and our first baby is due in September. Although I’m scared about many things – money, the birth, how on earth I am supposed to keep a tiny human alive – I’m not scared about how being parents will affect our relationship. I know things will change, but I’m also sure we’ll be able to cope with it. If we can stay together through relentless months of physical and mental agony then I think we can cope with anything.

Hard as those first few years were, they taught us how to be together as a team. There’s no one else I’d rather have on my side than Garry.

Amy’s debut book The To-Do List and Other Debacles will be published on Thursday by Ebury Press, £14.99. To order a copy for £11.99 until 14 July, call 0844 571 0640. For more information on Crohn’s and colitis, visit crohnsandcolitis.org.uk