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6 hours ago
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Growing up, I always loved food. On Sundays, I’d ask for seconds of my roast dinner. My gran would bake cakes every weekend, which I would drown in custard. I can still remember how the chocolate digestive biscuits I’d eat when I got in from school tasted, how satisfying it was to dip them in my tea as I chatted with my dad about my day. Food brought us together as a family and it was something I always relished.
Then I got sick. I was 12 when I first displayed symptoms of Crohn’s disease. I started getting unbearable pain in my stomach and going to the toilet a bit more. Then a lot more. And I stopped feeling hungry. My weight dropped three stone (19kg), my periods stopped and I had no energy, but it was my sudden lack of appetite that I missed the most. Food had always been a source of joy; I’d watch cookery shows and cry, remembering how much pleasure I used to take from eating. Now, my body rejected everything except supplement drinks that pretended to have flavours like lime and orange but always just tasted like bile. I was fading away and it was terrifying.
At 16, I had my large intestine completely removed in the hope that it would rid my body of the diseased tissue. But my Crohn’s came back, more savage than ever, just after I turned 18. One day, I fainted as I was walking home from university, my body so weak it was barely functioning. I fainted again on holiday in New York. I was constantly in pain, unable to venture far from the bathroom. I was just existing, drifting from one moment to the next. Something needed to change.
When I was 23, doctors decided I needed to have a panproctocolectomy and permanent ileostomy, where the rectum, colon and anus are completely removed and a stoma is built out of your small intestine, which delivers waste to a bag attached to your stomach. This is often carried out in two separate surgeries, but it was felt I wasn’t strong enough to undergo general anaesthetic more than once. The recovery was difficult; my stomach became infected and the wound running alongside the stoma, where the surgeons gained access to the intestines during the operation, reopened. I was housebound for months.
When I was discharged after two weeks in hospital, I was sore, uncomfortable and incredibly weak. But back at home, I was allowed to start eating normally again. For my first meal, I chose a jacket potato with cheese; it tasted amazing.
While my body healed, I was advised to rest – and to eat. It was the best directive I could have been given. My days at home became structured around food: a hearty breakfast; elevenses; lunch; then – after an afternoon nap – dinner, sometimes followed by supper. My parents were delighted to see me eating again and enjoying meals that I had missed for so long.
The more I ate, the stronger I became and the more I healed. Gone were the supplement drinks; instead, I devoured roast dinners, custard, pasta, pizza, ice-cream. My life was restored, along with my appetite. I could drive, go out with friends, and sit through an entire film at the cinema without having to dash to the bathroom.
I first met my husband when I was 24 and still adjusting to my new life with a stoma. I remember nervously telling him about it, not knowing how he would react. He couldn’t have been more understanding. One of the things we came to love doing together was cooking and trying new foods. We’d make our own pizzas, try out baking recipes and enjoy discovering new places to eat. We once tried to make our own pretzels, which went disastrously wrong, but we ate them anyway.
Over the years, scar tissue has built up around my stoma, meaning that my diet has become a little more restricted. I can no longer eat chips, bacon, raw fruit or vegetables due to the narrowing in my intestines around my stoma – a list that may grow as time goes on. But there’s still so much I do enjoy eating. Sixteen years after my surgery, I remain grateful for the ways it gave me my life back.
When I was a child and I went out for dinner with my gran, she would always order two desserts, because sugar was rationed during the war. Now that she could have all the sugar she wanted, she didn’t want to waste a moment. I understand that mindset now. Having lost my ability to eat and enjoy food, I haven’t wanted to take it for granted since it has returned. I understand the importance of a balanced diet, but I never deny myself a treat. My body did that to me for long enough.
Always on My Mind by Carys Green is out now (Harvill Secker, £16.99). To support the Guardian and the Observer, order your copy at guardianbookshop.com. Delivery charges may apply.
