Helena was diagnosed with Crohn's as a child, which inspired her to work for the NHS.

Helena experienced symptoms of Inflammatory Bowel Disease when she was just a child. She spent a lot of time in hospital, and it was the care and compassion she received from nurses that inspired her to take up a career as a children's nurse herself.

"As a child, I was rapidly losing weight, had loose stools, a lack of appetite and was regularly being sick. For two years, I experienced a series of misdiagnoses, including being told I just had a stomach bug. Finally, one incredible GP listened to me, and immediately attributed my symptoms to being possible Crohn's. I had an urgent referral to Birmingham Children's Hospital, and there I was diagnosed with Crohn's, when I was only nine.

As a child and teenager who regularly attended the hospital, I grew fond of my IBD nurses. I really got to witness the care and impact they provided, as well as other people with Crohn's or Colitis. I found that as I grew older, it inspired me to want to become a children's nurse. Having been through it myself, I was really able to empathise with patients.

As an adult, managing symptoms can still bring challenges. It's hard to juggle being a dog mum, a partner, and working alongside living with a chronic illness. Fatigue can be a big struggle, especially as I live with less than two metres of bowel and am on double immunosuppressant therapy. 

I always try and look for the positives and the lessons learned through the difficult times, and I believe my experiences have made me a kinder, and more resilient person. We're all human and have our own struggles, and many of those struggles might be invisible, like Crohn's or Colitis. I'm thankful that my own experiences brought me to the NHS, and that the empathy and care I had learned from my experiences got to help so many other patients I cared for as a nurse."

IBD Nurse Specialist Bridgette, who says her patients are like family.

Bridgette Fraser is an IBD Nurse Specialist who works with patients at the Chelsea & Westminster Hospital. Initially working in surgery and endoscopy, Bridgette was taken aback when she learned about the challenges people with Crohn's or Colitis face, and was determined to make a positive difference to their lives. She spoke to us about the difference she gets to make. 

"I did my nurse training in Jamaica and then I came over here in 2004. I worked in operating theatres and then moved to day surgery and endoscopy. I’ll admit that I really didn’t know much about Inflammatory Bowel Disease to start with, but once I found out more about Crohn’s and Colitis, I wanted to help as many patients as I could. That’s why I trained as an IBD Nurse Specialist.

My patients are like family to me. I see them at all different stages of life – from little ones at school as young as about nine, right up to people in old age. I really take the time to get to know them and what they’re dealing with. Some of them are so open they’ll tell you anything and really engage with you.

I will never forget I met this 14-year-old girl who was so intelligent, she was so on it. She had a whole folder full of her clinic notes and everything  when came to see me. I thought: “Wow – I wish some of my adult patients were so organised”.

But then I had another patient who didn’t want to socialise with his friends because he was scared. He thought he wouldn’t be able to be away from a toilet. He was worried about having an accident and felt sort of trapped.  He had just dealt with all of that on his own. Feeling isolated.

When he told me it broke my heart. I told him: “Don’t suffer in silence. Always tell someone. If you tell us we can help you.” And we did.

In this day and age we shouldn’t have people struggling. Or who can’t go out. It’s just not right. 

There’s no point burying your head in the sand and hoping it’ll go away because it won’t. The sooner you get it sorted, the better. Don’t be afraid of the diagnosis – because once you know what it is, you can get it treated. And early treatment is what makes a difference to so many people."

Kevin Barrett is a GP with a keen interest in Inflammatory Bowel Disease, and also lives with Crohn's himself.

Kevin Barrett is a GP in Hertfordshire, but is also in the unique position of being able to understand patients with Inflammatory Bowel Disease even better due to living with Crohn's himself. He spoke to us about his career and interest in IBD, as well as how he sees the future of NHS care for IBD patients.

"My own symptoms started very gradually with fatigue, weight loss and loose poo. Initially, blood tests showed anaemia and slightly raised inflammatory markers, but after a colonoscopy I was swiftly diagnosed with Crohn's. With hindsight, I knew something was wrong for several months, but I put it down to work, having young children, and general stress. Once I was given the diagnosis, I remember having a mixture of feelings - relief it wasn't cancer, concern for the future, and also guilt that I hadn't asked for help sooner. 

When it comes to my career, I've always been interested in medicine. My family are mostly teachers, so it wasn't an obvious choice for me, but I enjoyed the challenge of solving problems. At medical school I considered a career in cardiology and chose modules and courses that had this in mind. Once I graduated however, realised I'd rather look after the whole person instead of one specific area, so general practice was the obvious choice for me. 

I qualified from medical school over 25 years ago, and things in the NHS have changed enormously. The use of technology continues to affect the way that we work, and this will continue to evolve. We still haven't got the balance right between access and continuity of care though. On a positive note, we've started to re-establish the links between general practice and the hospital teams, and are starting to communicate, share ideas, and collaborate to improve patient pathways and care. There is still some way to go, but I'm optimistic that this will get better. The NHS to me stands for an ethos of providing the best overall care for patients within its limitations, and it's still something I'm proud to work for. 

When it comes to advancement in IBD care, there are several aspects of care that are exciting. Firstly, the better use of screening tests in primary care to identify those who need to have a formal diagnostic test (and to reduce the number put through an unnecessary colonoscopy!); secondly there is also interest in the use of AI and decision-support tools to help healthcare professionals consider diagnoses when presented with symptoms that could cover a wide range of illnesses which particularly seems to be the case with IBD. Thirdly, the increasing use of biologic medications and better access to these medications is leading to people being able to find effective treatments sooner.

Alongside this, the developing field of personalised medicine and the ability to target medications more effectively, is going to reduce the number of medications people need to try before they find one that works. I'm also really pleased that IBD care is getting more attention, and that we are improving the way that we can support people across all aspects of their lives, not just having a focus on symptom control alone."

Kevin ran the London Marathon for Crohn's & Colitis UK in 2023.