I was working as a clinic nurse and we used to see quite a lot of patients with Crohn’s and Colitis. I got to know one of the young women on our books quite well, so when I saw her sitting outside the clinic one day, I went over for a chat. She told me she has just been in to see the consultant and he had told her she had Colitis and that she should go and look it up in the library. I could see she was feeling a bit lost, so I asked her whether it would have helped to have had someone who could sit down with her to explain what was happening in detail. She said that was exactly what she needed, and it was a bit of a lightbulb moment for me. I thought: “My goodness, she just needs to be able to talk to somebody."

So that’s what gave me the incentive to start looking into a way of empowering patients with knowledge about what was going on in their bodies. I chatted to my consultant, who said he thought it was a really good thing to begin to do. He really supported me, and so did a medical rep I knew, who agreed to be a bit of a mentor for me. And that’s how I came to set up my IBD nursing service.

Soon I was travelling all over the UK, with encouragement from the Royal College of Nursing, speaking at conferences about my work with IBD patients. Other nurses started coming down to Weymouth to have a look at what I was doing because they wanted to see it in action. My family helped me come up with a slogan “IBD: Into Better Days” and it just snowballed from there. I had an office where I could see patients, I set up a helpline, and I even published a little booklet with details of all the toilets around Weymouth so that my patients would have something to help them when they were out and about. The Nursing Times came down to interview me and I was invited to an awards ceremony at the Dorchester Hotel.

It just kept growing until there came a point where I needed an extra pair of hands, so I had an assistant working with me.

I managed to get her admitted and my consultant diagnosed her with Crohn’s.  She started on some steroids and she was eventually well enough to go home. She ended up doing really well and, weirdly, she became a neighbour of mine years later. How about that for a coincidence!

Another one I clearly remember was actually a relative of mine on my husband’s side. She called the advice line three or four days before Christmas one year, because she was desperately ill. She was experiencing lots of diarrhoea and losing blood. I knew I had to get her admitted to hospital quickly. She ended up having to have emergency surgery – an ileostomy. And that’s an example of a whole other area of patients who needed different support. Being able to help people after surgery and to go on that journey with them was so important. It still is.

I have to be honest and say that it wasn’t always plain sailing. When you’re trying something new, you always encounter stumbling blocks or obstacles along the way. But I worked with some incredible people and had an amazing consultant who really supported me and what I was trying to do. He asked me if I wanted to start taking blood and I did! I was the first nurse to do it – it seems so routine now but it was quite something back in those days. I remember once he called me and asked me if I could do a clinic for him. Well, that was never something I would have imagined that I could do – it was so daunting, but bless him he trusted me to do it and I did it! And it was actually just a really lovely clinic. I suppose I became an expert in what the patients were living with.

I can’t believe how much IBD nursing has grown since those days. Crohn’s & Colitis UK has an IBD nurse specialist programme now, with nurses who are able to prescribe and it’s just incredible.

I don’t know how to feel about it all really. I just look back on it all as an amazing time and I feel delighted that I was able to do it. I am just so thankful for everything I’ve had. And for my life. It’s been a real blessing.