"Just when I thought I was out… they pull me back in." — Michael Corleone, The Godfather Part III
That line has always felt strangely familiar. Living with ulcerative colitis can be a bit like that — stretches of time where things feel stable and life moves forward, before the illness inevitably steps back in and slows everything down again.
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Fifteen Years In
I’ve been living with ulcerative colitis for around fifteen years now. Ulcerative colitis, often shortened to UC, is a chronic inflammatory bowel disease where the immune system attacks the lining of the colon, causing inflammation and ulcers. The condition is typically characterised by periods of remission, where things are relatively stable and manageable, followed by periods of illness known as flares.
The difficult part is that nothing about it is particularly predictable. Looking back over the last fifteen years, I would probably describe the experience as roughly a fifty–fifty split between being well and being ill. Sometimes those periods are relatively mild and manageable, while other times they are far more disruptive. The severity can vary quite significantly, and you never quite know when things are going to change. You can feel completely normal for months at a time and then suddenly find yourself dealing with symptoms again. That unpredictability is one of the defining characteristics of the illness.
The Invisible Problem
One of the strange aspects of ulcerative colitis is that it is largely invisible. Most people would never know anything is wrong unless you choose to talk about it. When things are stable, life can feel completely normal. When the condition flares, however, it can become incredibly limiting.
It is not only physically uncomfortable but also inconvenient and, at times, quite embarrassing. The symptoms themselves can make leaving the house difficult to plan, particularly when things are unpredictable. For someone running a small architecture studio, that can present a few challenges. Site visits, surveys, travelling to meetings and spending long days away from home are all normal parts of the job. When UC is active, even simple things like committing to a meeting or travelling a longer distance can require a bit more thought.
Planning ahead becomes harder too, because the illness does not operate to a schedule. One week everything can feel perfectly fine, and the next you find yourself needing to slow down again. Over time you learn to work around that uncertainty as best you can.
Stress and the Balancing Act
There is a well-recognised link between stress and ulcerative colitis. Stress does not necessarily cause the illness, but it can certainly trigger or worsen flares. That creates an interesting balancing act when you run your own business, because growing a business inevitably involves pressure. Deadlines, responsibility, finances and managing projects all come with the territory.
Over the years I have become very aware that pushing too hard can sometimes have consequences. There have been moments in my career where I have felt ready to really accelerate things, take on larger workloads or expand the business more quickly, only to find that not long afterwards I end up ill again.
It reminds me of a line from The Godfather Part III, where Michael Corleone says: “Just when I thought I was out… they pull me back in.” In the film the line captures the frustration of trying to move forward while being repeatedly dragged back into something you thought you had escaped. That sentiment resonates strongly with living with UC. Just when things are gathering pace and you feel ready to push forward again, the illness occasionally steps in and forces everything to slow down.
Medication and Management
For the last ten years or so I have managed the condition through medication. Treatment for UC generally works in stages, beginning with milder drugs and gradually progressing to stronger treatments if the illness becomes harder to control.
I am now on what is effectively the top tier of medical treatment, known as biologic medication. These treatments target the immune response responsible for the inflammation and have made a significant difference for many people living with the condition, myself included. They allow many patients to live relatively normal lives for long periods of time.
Biologics are generally considered the final stage of medication, meaning that if they were ever to stop working the next step would typically be surgery. It is not something I dwell on too much, but it does reinforce how important it is to manage the illness carefully and pay attention to the things that influence it.
One of the most important of those things is stress.
Why Winter Jones Works the Way It Does
Living with UC has inevitably influenced some of the decisions I have made about how I run my practice. One of the most conscious choices has been to focus on smaller, carefully selected projects. That might seem surprising given that earlier in my career I worked on and managed much larger developments, but experience has taught me that the structure and pace of work matter just as much as the scale.
Smaller projects allow me to stay closely involved in the design process, work directly with clients and maintain a greater level of control over the pace of work. They are creatively rewarding and varied, but they tend to avoid the layers of pressure and complexity that often come with larger schemes. In many ways it is about maintaining a sustainable balance between ambition and wellbeing.
Running Winter Jones as a small, design-focused studio allows me to do the work I care about while managing my health responsibly. Over time the business has naturally evolved around that understanding.
The People You Wouldn’t Know About
One thing that surprised me when I was first diagnosed was how many people live with ulcerative colitis or similar chronic conditions. Many of them are highly successful and have built remarkable careers while quietly managing the same illness in the background.
Sir Steve Redgrave is one well-known example. Despite living with ulcerative colitis, he went on to become one of Britain’s greatest Olympians, winning five consecutive Olympic gold medals in rowing between 1984 and 2000. His achievements are extraordinary by any standard, but even more remarkable when you consider the challenges of managing a chronic illness alongside the physical and mental demands of elite sport.
There are countless others across different professions who quietly navigate similar conditions while continuing to build careers, businesses and families. Because the illness is largely invisible, most people never realise it’s there. For many people living with UC, it simply becomes something that sits in the background while life continues to move forward.
Looking Forward
Running Winter Jones has been one of the most rewarding things I have done professionally. It allows me to work creatively, collaborate with great clients and shape the kind of projects I want to be involved in. At the same time it provides the flexibility to manage the realities of living with UC when those moments arise.
That balance is not always perfect and some months are certainly easier than others. But after fifteen years of living with the condition I have come to understand that progress rarely follows a straight line. Sometimes it moves quickly, sometimes it slows down for a while, but over time it still moves forward.
And for now, that is exactly what I intend to keep doing.