This Is Our Hard

Some days IBD feels easy.
Some days it feels impossibly hard.

A new patient with Crohn’s disease. Prompt diagnosis. Proper work-up. Early effective therapy. Tight monitoring. The patient responds. Inflammation settles. Life opens up again. Easy mode, relatively speaking.

A patient with ulcerative colitis arrives flaring. We use an oral small molecule early. Symptoms switch off quickly. No steroids. Hospital admission avoided. Deep remission follows. Again, it can feel straightforward.

Of course none of this is truly easy. Any disease that can take bowel, energy, confidence, fertility, sleep and autonomy is not easy. But from where I stand, as an IBD clinician in a well-resourced tertiary centre with access to most of the drugs and most of the monitoring tools, some problems feel tractable.

Then there is hard mode.

Refractory penetrating Crohn’s disease. Multiple admissions. Multiple surgeries. A permanent ileostomy. Draining fistulas. Ongoing active inflammation. Every approved therapy tried, failed or exhausted. No clean path forward.

Or ulcerative colitis with primary sclerosing cholangitis, PSC. Cirrhosis. Liver transplant. Active colitis. Dysplasia, perhaps colorectal cancer. Very hard.

That contrast has been sitting with me recently. Not because I think I have resolved it, but because it forces a more interesting question.

The Geography of Hard

What do we actually mean when we say something is hard in IBD?

The answer depends entirely on where you stand.

Scientifically, hard sits upstream. Why do some people with a similar risk profile develop IBD while others do not? What is the primary pathological defect, or more likely, how many different defects are we still grouping together under one label? Can we define disease by mechanism rather than by phenotype? Which genes, proteins, microbes and metabolites matter most, and when?

For clinicians, hard is more immediate. Right drug, right person, right time sounds neat on a slide. In practice it is still too often an aspiration. Which drug first? What sequence next? How do we implement close biomarker surveillance across a whole population with finite staff, finite time and finite money? What do we do when none of the drugs work, when the therapeutic ceiling still sits stubbornly at 30-40%? How do we manage fistulas, strictures, post-operative recurrence, fatigue, pain, urgency and brain fog, not as separate problems but as one disease experience happening inside one human being?

For patients, hard is different again. It is unpredictability. It is decision fatigue. It is trying to manage work, relationships, travel, intimacy, diet and identity around a disease that may stay quiet for months and then turn without warning. It is being told the inflammation is under control while your life clearly is not. Patients do not experience disease in categories. They experience it as life.

Society has its own version of hard. How do we pay for all of this? How do we design systems that catch disease earlier, treat it better and do not deepen inequity? How do we reduce postcode prescribing and global variation in access to IBD care? And if prevention matters, are we really willing to confront the bigger questions around food systems, antibiotics, smoking, deprivation and the wider environment in which IBD now flourishes?

Industry, too, lives with its own pressures. Some of that pressure is healthy. Competition matters. Good drugs matter. Better trial design matters. But commercial gravity can also pull smart people into the same place at the same time. You can see it in the clustering around TL1A. Competition is good for patients. A crowded procession of similar programmes is not always the same thing as progress.

Choosing Our Hard

Once you see hard from all these angles, another truth appears.

Not every hard is equally important.
Not every hard is equally actionable.
And not every hard belongs to you.

So I come back to the question that organises my working life: how do we improve outcomes for people living with IBD?

It sounds obvious. Maybe too obvious. But it is the lens through which I see clinic, research, teaching, travel and community. It is the question I return to when the field feels noisy, fragmented or overconfident.

Not every hard question belongs to my team. Some hard scientific questions are important and beautiful and worth answering even if they do not change clinical outcomes in the next five years. Some hard belongs to drug developers. Some belongs to public health. Some belongs to policymakers. Some belongs to the people brave enough to think seriously about prevention at population level.

All of that matters.

But it is not all our hard.

Our hard is this: to understand how inflammation behaves over time in real people with IBD, across the full disease course.

Not as a single clinic snapshot.
Longitudinally.

Not only in highly selected trial populations.
Across the full spectrum of patients we actually see.

Because hidden inside those longitudinal patterns is something I suspect we have still not properly grasped: hidden heterogeneity. Patients who look similar on the surface are not always biologically similar underneath. Their risk is not the same. Their trajectory is not the same. Their need for intervention is not the same. And our current labels are often too blunt to guide what matters most.

So the work, as I see it, is to model that risk better. To understand inflammatory behaviour more deeply. To connect biology, trajectory and outcome. And then, crucially, to translate that science into something useful in the real world.

Because science that never leaves the R code or the manuscript is not enough.

I am interested in implementation. In iteration. In AI-enabled tools that can be tested, improved and scaled, tools that can read hidden patterns in longitudinal data, or flag subtle shifts in symptoms and biomarkers before a flare truly takes hold. Used properly, decision support should not replace clinical judgement. It should sharpen it. It should help us act earlier, monitor smarter and make better decisions more consistently. It should move us, even incrementally, closer to what we have been promising for years: right drug, right person, right time.

That is our hard.

There is a wider point here too.

I have watched the global IBD community grow enormously since I started in this field. Bigger in spirit, bigger in ambition, bigger in capability, bigger in reach. This is good news. There are brilliant people working very hard on genuinely important problems.

But effort and progress are not the same thing.

Some hard questions are still being tackled too weakly. Real-world studies with numbers too small to guide practice. Data collected too late. Too much missingness. Experiments that were never really capable of answering the question being asked. Underpowered work is still hard work. But it does not always move the field.

And sometimes the reverse is true. The work is strong, the funding is there, the teams are excellent, but there is too much convergence. Too much clustering around the same target, the same pathway, the same safer bet. The commercial logic is obvious. The scientific opportunity cost is less often discussed. Patients need competition. They also need originality, rigour and the courage to go after questions that are genuinely under-addressed.

We cannot dictate who does what, nor should we try.

But we can think more clearly about where the true unmet need lies.
We can ask whether a question is merely hard, or whether it is important.
We can ask whether we are resourcing it properly.
We can ask whether we are being rigorous enough.
And we can ask, repeatedly, whether the patient at the centre of all this would notice the difference if we succeeded.

Back to the Clinic

Because that is where I end up.

Back in clinic.

Back with the patient with draining fistulas, or PSC and colitis, or disabling fatigue in apparent remission, or the young person whose life trajectory is already narrowing before it has really begun.

That patient does not care whether our hard is scientific, operational, commercial or political.

They care whether next year is better than this year.
They care whether we understand their disease in time.
They care whether we intervene early enough.
They care whether the system around them is intelligent, humane and fair.

That is the joy of this work. The challenge too. And the duty, not just of the clinician, but of all of us who work in and around IBD.

Choose the hard that matters.
Then do it well enough to count.
This is our hard.

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