Being in a relationship with someone who has IBD
“Not everyone would be as understanding as you, you should be really proud. I don’t think I could do it!”
Do what? I thought, unsure how to respond to my friend. I had been excitably filling her in on the guy I’d been seeing for a month. He’d just gone into hospital to have life-saving surgery so that he could live a pain-free existence. I was nothing but thrilled for him – why wasn’t she?
After matching on Hinge, Ant and I had started chatting on a Friday evening in January last year. One of the first things he said to me was to check out his Instagram, @ibdlife, to see if I “still liked what I saw”.
I quickly jumped over to Instagram and started scrolling, recognising all the pictures that I’d liked from his dating profile. There were others too, that hadn’t made the curated six that Hinge profiles are made up of. These showed a small medical bag attached to his lower abdomen with the caption, “In a few weeks’ time, this is what my life will be like and what my body will be like”. I hadn’t heard of IBD before and remember thinking that maybe it was a worse version of IBS. I quickly learned that it was not.
Ant has IBD (inflammatory bowel disease), an incurable autoimmune disorder that affects the digestive system. Most people who suffer with IBD are classed as disabled and prior to meeting me, he had suffered for 11 years with ulcerative colitis. After battling with a plethora of strong medication, involving many periods in and out of remission, he opted to have surgery to remove his colon, thus relieving his symptoms. The operation known as an ileostomy would leave him with his small intestine protruding through his abdomen to create an external 'stoma', which would then be covered by a removable ostomy bag to collect the body’s waste. A “replumbing job” of his digestive system, as Ant likes to call it.
I found it endearing how open and honest Ant had been from the start, and his ‘gram was very educational. I loved the way he was raising awareness about his condition in the most beautiful and uplifting way, and I fancied the hell out of him. I replied, “Of course I’m still interested,” with a few fire emojis.
Our first date felt like a movie. We chatted easily, laughing the evening away in the cutest wine bar (chosen by him), tucked away in London’s Borough Market. We clicked instantly. The man sitting in front of me was the most interesting, intelligent, funny and genuine person I’d ever met. He told me a bit about the surgery he was booked in for in February – he was so cool and relaxed about it that it felt like no big deal, and he said he’d be out in less than a week. We saw each other a few more times before and promised to meet up as soon as he was feeling better.
While he was in hospital we spoke constantly – though the five-day stay he’d expected turned into 19 days after there were complications getting his new stoma to work. He was also filming his hospital experience, and sharing it as a daily video diary on his Instagram stories, which would later be made into a mini-documentary, You Don’t Look Sick, for the BBC. So – alongside our messages and phone calls – I was also watching along with his thousands of followers as he explained the reality of such a life changing operation. Ant was so positive, but watching him struggle on the bad days was hard – he showed himself at his most emotional and raw. When he cried, I wished I could reach through the screen and hug him. Even though we hadn’t known each other long, I wanted to do everything I could to be there for him.
When he recovered enough to go home, we met up almost straight away. He looked like he had lost a lot of weight, but he was happy, healthy and feeling good – and that was all I cared about. He asked if I wanted to see his bag. He said it so cooly and calmly, that I had no idea that inside he felt vulnerable, terrified to show me his new body. I didn’t hesitate to say yes, and when I saw it I told him, “Oh wow, I love that the bag’s black, it looks cool.” I know now that my reaction made him feel instantly comfortable. He pulled his shirt back down – you wouldn’t have even known the bag was there – and we went on to have another brilliant date.
A few days later we became “exclusive”. I hadn’t told many people that I was seeing him yet. More than anything, I didn’t want to get too carried away by over-romanticising something so early. But also, after my friend’s comment, I admit I was worried what people would say. I’d managed to brush it off, explaining to her how excited I was about him and I hoped all of my family and friends would feel the same, but still her comment irked me. I didn’t want any negativity coming at me – I felt so protective of him. Then lockdown hit.
We kept our relationship going for 12 weeks without seeing each other in person. We video-called for hours every day. We were too far away to meet up outside safely – he was in Surrey, I was in south-west London – so instead we would go on separate walks together, getting to know each other intensely on the phone in a way we might not have if it wasn’t for lockdown. It was effortless, and though it didn’t feel it at the time, those long weeks flew by. Ant had to have a second operation in May to resolve the initial surgery complications, so I was desperate to see him by the time we were allowed.
We spent the most gorgeous summer together, going on all the dates that COVID restrictions would allow – picnics, long walks, bike rides – and 99% of the time we’d forget he even had a bag. It never affects me, and to look at him you wouldn’t know it was there. His stoma without it is a small red area of tissue about the size of the top of your thumb. It’s very clean, doesn’t smell at all (one of the biggest misconceptions of having a stoma), and is just another part of him that I love.
As we started to share photos together on social media, Ant was asked by followers if he was “able to have sex”. He replied: “Of course, I have a bag, not a broken penis.” Seriously though, wearing a bag doesn’t get in the way of intimacy.
Over the months, we grew closer and more comfortable together and met each other’s family and friends – when it was safe to do so. He charmed them all, and my family fell in love with him, just as I had. Then lockdown 2 hit. This time we didn’t want to be apart, so I stayed with him at his flat in Surrey for a few weeks during November.
One evening in December, he was in a lot of pain. His stoma had swollen to almost triple its size and nothing was coming out. After a few hours, he admitted defeat and went to A&E. I desperately wanted to go with him, but couldn’t due to COVID restrictions. Despite everything Ant had been through that year, this was the first time it had really hit me hard. I spent the night crying and couldn’t sleep for worrying, cradling my phone and waiting for his updates.
The next morning, his nurses allowed me to visit and stay safely by his bed all day, with a mask on. I hadn’t seen him in hospital in person before. I did everything I could to be strong for him, but when our eyes met, we both burst into tears. I held him tight, telling him that I’d got him and he’d be OK. I spent two days by his bedside – he slept a lot, was very sick and hooked up to all sorts of tubes. I brought him ice cream and fed him foul-smelling medicine – we joked that it was like that scene in Harry Potter where Harry feeds Dumbledore “no more”. After a week, Ant came home – it turns out some large peppers that were too hard to be digested properly had caused a painful blockage. I realise we will go through this together every once in a blue moon, and I am more than OK with that, though I did make a mental note to be extra careful with food from now on.
We’ve recently moved into a gorgeous little flat together. Ant makes me happier than I’ve ever been, and I count myself very lucky that we can spend lockdown 3 in our new home, working out, going on walks, cooking extravagant meals and filming or taking photos for his social media (I joke how much better his grid looks since I started art-directing the pictures).
I’ve learned a lot about IBD over the past year, knowing more than ever the importance of never judging someone (or their health) based on appearance. Ant’s strength and use of his platform in such a positive way inspires me to do more to spread awareness to those who know very little about invisible illnesses. He is disabled, and it saddens me that there is so much stigma attached to the word. People commonly see disability as someone who uses a wheelchair or has learning difficulties, but the spectrum is much broader than that and I intend to help break that down. We have an incredibly loving relationship and can experience life just like any other young couple. After all, there is no singular view of what disability looks like.
Follow Jessica and Ant on Instagram.
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