How it feels - dating with a stoma

Around one in five people diagnosed with Crohn’s Disease will go on to have surgery in the first five years after diagnosis. There’s no doubt that’s a big step and can feel incredibly daunting and scary. But for so many, it’s life-changing in a really positive way.

That’s exactly what happened to Emergency Medical Technician Belle, who was going through a very challenging time in her life when she was diagnosed. Unexpected stoma surgery left her feeling liberated and gave her the confidence to do some things she never imagined would be possible – including dating again after the loss of her husband. This is her story.

At the end of 2022, my late husband Luke was in hospital for four months, so I was going through an incredibly stressful time. I started noticing blood in my poo and to be honest, with a lot going on, I put it down to the stress of the situation or something I had eaten, so it just really wasn’t my number one priority. I was living a weird life, in hospital with him and therefore always close to the toilet and it wasn’t actually that disruptive so maybe I didn’t notice it.

But then I started feeling fatigued and was passing clots, so I told him what was happening and he pushed me to go to A&E. I was fobbed off - told I was fine and then sent away. Then I went to the GP, who referred me for colonoscopy. I was diagnosed with Ulcerative Colitis on the spot and started on steroids and immunosuppressants. That was in March 2023.

There was so much going on in my life at the time: my husband had passed away and I was feeling really unwell. I went back to work as a frontline paramedic at the end of that year and I just felt really ill. Then I got put on infliximab, which started working a bit, but not for very long. 

One day in early 2024, I got dizzy and sick at work and went home to spend the whole weekend in bed. I was in a lot of pain and not feeling good at all, so I rang my IBD nurses who were incredible. They got me in to see the consultant and he took one look at me and said: “You look absolutely dreadful!” They put me on a ward an my iron levels were super low.

The doctors tried a couple of things but they weren’t going well and so it was decided that surgery was the best route. It was the first time it had been mentioned to me but two days later, I was having an emergency ileostomy. When the surgeons went in, they found out there was a problem with some of my small bowel and realised it was probably Crohn’s not Colitis. 

I do random shifts and that can be really tough for things like fatigue, but when it comes to unpredictability, the stoma has made things easier. Where I used to have to run to the toilet dozens of times a day, it’s much easier now to plan things now and find downtime to empty my stoma. 

I really don’t think I would have got through the surgery without the people I had around me at the time. My best friend was just incredible – the first person ever to change my stoma bag, she wanted to learn as soon as I came out of the operation and she was so wonderful. I think you have to deal with everything with a sense of humour. I’ve also met my new partner Nathan who now knows all about my stoma.