Louise Hunt (33)
A trainee accountant from Peterborough, Louise became a Research Champion almost two years ago and works on the PROFILE Trial to drive personalised care in Crohn’s Disease.
“I became really ill a year after completing my university degree and was convinced I had food poisoning. My parents were away on holiday in Madeira and I was back living in our family home in Lichfield, convinced that whatever was wrong with me would settle down. Instead, over three weeks my weight plummeted by four stone, I couldn’t stand or eat, and was on the loo the whole time. My parents came home, took one look at me and rushed me straight to A&E. I was admitted to hospital, where a scope test revealed I had Crohn’s in my large bowel. I was put on medication, which initially helped, but my condition deteriorated within six months.
“I felt I was being punished, knowing that I would have this for the rest of my life. I escalated through a pyramid of medication, changing each time something stopped working. After five years, I finally thought “enough is enough” and asked for surgery where part of my bowel was removed. Unfortunately, I had a flare-up soon after. I had three months when I was constantly on the loo and my weight dropped back down to seven stone, so I opted for an ileostomy.
“Two days after the operation I was walking up and down the ward with no pain relief, starting a new life, with nothing holding me back.
“When the role of Research Champion came up I jumped at it. I think research studies need people who understand the complexities of these conditions, and the good days and bad days we have. I know how to advocate for my healthcare and when sitting in on meetings I can translate everything into patient speak. I have good connections with consultants, which helps me to provide a vital bridge between medicine and patients, ensuring that they see hope and know that treatment is constantly improving.
“Sitting on a trial like PROFILE helps me give a voice to all of those who live with Crohn’s or Colitis. It allows me to champion the work that clinicians do for our conditions, enabling us to better understand it so we can live fuller lives.”
Anwen Thomas (48)
A reflexology practitioner from North Wales, Anwen is representing people with Crohn’s and Colitis on the ADVANTAGE pain project, a new data hub studying chronic pain experienced by people with Crohn’s and Colitis, and other long-term conditions.
“It’s hard to be constantly unwell and not know what’s wrong. I hugged the consultant who told me I had Colitis because a diagnosis had taken so long. I suffered varying symptoms in my early 20s – bloating, fatigue, trapped wind, lethargy, pain, constipation, loose stools, food sensitivity and sporadic bleeding – but was told I had Irritable Bowel Syndrome (IBS). It was a confusing and a frightening time, but you get on with life.
“Nine years ago, I was passing blood in my stool for weeks. I was put on immunosuppressant medication and a routine colonoscopy revealed toxic megacolon. I was admitted to hospital as an emergency, treated with IV and oral steroids, and started infliximab infusions. I’m still on immunosuppressant medication. When the pandemic hit, I had to shield.
“Crohn’s & Colitis UK has been a wonderful source of knowledge and understanding. I know I’m not alone, and the support and information I needed to work with a lifetime condition is so much appreciated. My combination of Colitis and IBS means I watch what I eat. My partner Ifan makes great gluten-free bread, while our two girls simply accept my condition as part of life. I’ve become a Research Champion because I wanted to have a voice and as a Welsh speaker I can help to reach a wider audience.
“I live with varying pain, and I’m particularly interested in pain management research and the psychological aspects of managing pain. Now that I feel stronger, I can encourage others to face Crohn’s and Colitis positively. Research is the key to raising awareness of the conditions, and to providing more information and more accurate diagnoses. It can also reduce stigma.
“By being part of the ADVANTAGE pain project, I hope to raise awareness of this complex issue. Using my lived experience of pain from Colitis, I hope to be part of discussion with researchers and clinicians in moving this important research forward.”
Harinder Singh (32)
A pharmacist from the West Midlands, Harinder aims to bridge the gap between people with Crohn’s and Colitis and healthcare. He is working with a project using histopathology (studying disease through interpretation of cells and tissue samples) to personalise medication in Ulcerative Colitis.
“I was first unwell when I was at university, but it went away, coming back five years ago when I was working, and was very busy and very active. You think it will sort itself even as the symptoms are creeping up on you. I was tired, went to the toilet a lot and there was blood and mucus in my stools. Some foods made it worse too, so I was avoiding them and losing weight.
“I was training for a national dance competition in Bhangra, which is Punjabi folk dancing. We trained in cycles as we
worked towards each competition and in 2016 I was aware that I couldn’t reach the same level of fitness as previously. Now I know I was having a flare-up. During training I felt very unwell, so I saw my doctor who called an ambulance as my heart rate was so high. It turned out my iron levels were so low that my heart was struggling.
“It was hard for my parents to see me so ill, especially since I was in denial and was convinced I’d get better without treatment. I’m coping well now as my medication is working.
“I didn’t feel I got enough information from the NHS, but Crohn’s & Colitis UK were excellent, so two months ago I became a Research Champion. I’ve met other people living with the conditions, healthcare professionals and researchers. I think the most important part of this role will be to help professionals see our side of it and patients see their side of it. As both a healthcare professional and a person living with a chronic illness, I hope to help improve communication between healthcare professionals and patients.”
