19/05/2026
On World IBD day we share Claireâs incredibly brave and painful journey with Ulcerative Colitis đ
I was diagnosed in 2012 after being unwell for a number of months, although at the time I ignored all the symptoms because I was in the middle of a really stressful period in my life and felt like I couldnât stop to reflect on what was happening. I was experiencing bleeding, being sick, bloating and constant stomach pain, but I pushed through until I couldnât anymore. Eventually I was diagnosed with ulcerative colitis (UC), a form of inflammatory bowel disease where the lining of the large intestine becomes inflamed and ulcerated. I started medication and things settled down for a while.
In 2013, I was pregnant with my daughter and had to stop some of my medication, which led to my symptoms returning. I had my daughter in September, and by November I was back in hospital for a colonoscopy and was admitted the same day. I spent a couple of weeks in hospital and had my first experience of IV steroids, something no one had really warned me about. Over the next few months I was in and out of hospital trying to get things under control.
My care was then taken over by Professor Lynch at Blackburn Hospital, an incredible human who went on to care for me for over 10 years. He looked at me as a whole person, not just a conditionâunderstanding that I was a mother, going through a divorce, trying to build a career in education, and still wanting to be the best runner and cyclist I could be. Over about 18 months we worked through a range of medications and more hospital visits, and eventually found that steroids alongside Humira worked.
That period was incredibly toughâsteroids gave me a massive moon face, awful skin, disrupted sleep and severe water retention. I felt completely unrecognisable. But eventually I came off steroids and the Humira worked.
Around 2017 I met Gareth, my now husband, who I can only describe as my missing puzzle piece. He met me at a time when I was very broken physically and mentally and has stood by me every step of the way since. Over the next four or five years I felt really well. I got married in 2018, work was going well, and I was running and racing again. We filled weekends and holidays with adventures, I ran ultra marathons, took on big mountain days in the Lakes, and felt like I was finally living my best life.
During COVID, while many people struggled, I actually found comfort in the slower pace of life. I spent all my time with the people I love most, taught my students from home, and became really fit and strong. When things opened up again, I decided to train for and enter the Mont Blanc Marathon. Looking back, this is where things started to go wrong again. I began to experience symptomsâstomach pain, bloating and a new one for me, fatigueâbut once again I ignored them. I also had COVID around this time which I couldnât seem to shake.
Despite all of this, I made it to the start line and completed the marathon in a really good time considering the conditions. But after that, I never recovered. I was left with horrendous fatigue, constant pain, bleeding, and going to the toilet more than 15 times a day. Months later, I still felt unwell. Professor Lynch had previously recognised that my inflammation didnât always show in blood tests but would appear during colonoscopies, and at this stage he felt that Humira might be contributing to my issues, so we stopped itâbut we never managed to get back on top of my symptoms.
When I talk about fatigue, I donât mean feeling tiredâI mean absolute exhaustion. I would push through to go to work, attend my daughterâs dance competitions or see friends, but would come home with nothing left. I didnât want people outside our home to know how unwell I was. Alongside the fatigue came constant bone and joint pain, something very difficult to describe but relentless. Gareth was the only one who truly saw how bad things were. He created a 10-point pain scale for meâmost days I sat at a 5 or 6, which had become my ânormal.â If it reached 7 or 8, we would stop what we were doing, and at 9 it was hospital. Living with IBD means you normalise pain that would stop most people in their tracks.
Over time, it started to affect my mental health. I had very low, dark periods where even Gareth and my daughter couldnât lift me, and I felt like I couldnât do anything well. Exercise, which had always been a huge part of my life, no longer helped.
By November 2024, I had been feeling really unwell for months but was still pushing through. We attended the East Lancashire Hospice Ball, something we go to every year, and as always with an invisible illness, people commented on how healthy I looked. Inside, I was thinking, âyou have no idea.â The next day I knew I needed help but didnât feel able to face A&E, so I waited until Monday to call the IBD nurses. Within an hour they had a bed ready for me. I was admitted for over two weeks, treated with steroids and medication, and eventually dischargedâbut mentally I was at my lowest point.
I couldnât get downstairs, Gareth had to do everything, and I felt like a shell of myself. I had lost my identityâI wasnât working, couldnât be the mum or wife I wanted to be. I slowly built some strength and returned to work in February, but after just four days I was back in hospital for over three weeks. This time steroids didnât work, my veins were failing, and we tried infliximab, but I had reached my limit. Professor Lynch came to see me and asked how I felt about surgery, and for the first time it felt like the right option.
I was introduced to Mrs Binnington, the surgeon who would perform my operation. Professor Lynch described us as similarâstrong, independent womenâand he was right. In July 2025 I had my large intestine removed and an ileostomy formed. The surgery and recovery were toughâI developed an ileus and needed an NG tubeâbut the care I received, especially on Ward C18A, was incredible. The stoma nurses taught me how to manage everything, and I returned home hopeful this would be the turning point. There were challengesâleaks, noise, planning life more carefullyâbut after about six weeks I started to feel good. Gareth and I even managed a week on Mull.
By September I had started a new job, was contributing at home again, and slowly returned to exercise. I started with Pilates and walking, then running and mountain biking. It was frustrating being slower than before, but I stayed positive and kept building.
However, by late October and into November, symptoms began creeping backâbleeding, fatigue and pain. By December, on a skiing holiday in Chamonix, I knew something wasnât right. The fatigue and pain hit hard, and when I returned home I could barely function. After further investigations, it was confirmed my colon was still severely diseased. Mrs Binnington described it as âmanky,â which oddly made me laugh and feel at ease. As biologics were no longer an option, we made the decision to proceed with a second surgery to remove my colon and re**um.
After a difficult wait due to delays, I had surgery on 25th March. I went in believing this was the start of getting my life backâthe beginning of a new chapter. The surgery itself was successful, but what followed was something I was not prepared for.
I am now nearly six weeks post-surgery, and honestly, the last six weeks have been a lotâphysically and mentally. Recovery is slow, and some days even baby steps feel too much. The pain is still very real, not just from the stitches but from everything that has been disrupted inside me. There are moments where I donât recognise myself againânot in the mirror this time, but in what I can and canât do.
But I also know this.
Everything I have been throughâthe years of pain, the hospital stays, the setbacks, the moments where I thought I had nothing leftâhas brought me here. And even now, in the hardest part of recovery, I havenât given up.
Living with ulcerative colitis has taken so much from me at times. It has challenged me in ways I never imagined, physically and mentally. It has made me feel invisible, misunderstood, and at times completely lost.
But it has also shown me something I might never have discovered otherwise.
Strength.
Not the kind you see in races or on mountains, but the quiet kindâthe kind that gets you out of bed when your body is screaming at you not to. The kind that keeps you going when everything feels uncertain. The kind that rebuilds, slowly, piece by piece.
And I know I havenât done that alone.
The care I have received throughout this journeyâespecially from the staff on Ward C18A at Royal Blackburn Hospitalâhas been nothing short of incredible. They didnât just treat my condition; they saw me as a person, on my best days and my worst, and supported me through moments I didnât think I would get through.
Professor Lynch changed the course of my journey, not just through his expertise but through the way he saw me as a whole person for over a decade. Mrs Binnington gave me hope and confidence at a time when I needed it most, and her care went far beyond what I ever expected and the best bit for me is that she is a woman doing this, which I find incredibly powerful and something that has stayed with me.â
And then there is my family.
Garethâmy constant, my strength, the one who has seen everything behind closed doors and never once stepped away. And Georgie, my reason for everything, even on the days when I didnât feel like myself at all.
This journey hasnât just been mineâitâs been ours.
Iâm not back to where I was. I donât know exactly what the next chapter looks like yet âŚ. But thats ok!
