“We have to make the case that avoiding steroids isn’t just about following guidelines - it’s about protecting the long-term health of our patients.”
Steroids remain a cornerstone of inflammatory bowel disease (IBD) management, offering rapid relief from symptoms like abdominal pain, diarrhea, and fatigue. However, their long-term toxicity - ranging from osteoporosis to mood disturbances - continues to be underestimated.
Professor Ailsa Hart, consultant gastroenterologist at St Mark’s, the National Bowel Hospital in the UK, has spent her career treating patients with Crohn’s disease and ulcerative colitis. With over 9,000 IBD patients in the hospital cohort, she has seen firsthand the impact of steroid overuse and the challenges in moving patients toward safer, long-term alternatives.
Despite clear guidelines advising against prolonged steroid use, the reality in clinical practice often tells a different story.
"What we ought to be doing and know we should be doing according to guidelines is sometimes very different from what’s actually happening at the coalface. Audit data always gives us a wake-up call about the stark reality of steroid use."
Many ulcerative colitis patients receive steroids early in their treatment. Some receive intravenous steroids during hospital admissions. Crohn’s disease patients experience a similar trajectory, often needing steroids initially as their treatment strategy is planned.
"If you look at large datasets, globally, there's more steroid use than we dare to believe - certainly more than our guidelines recommend.”
While steroids provide immediate symptom relief, their long-term effects are severe.
"Patients often feel better on steroids at first with improvement in symptoms - there’s an initial hook. But there are the short-term side effects: acne, weight gain, insomnia, psychological impacts on mood. Young patients, especially, don’t think about the long-term effects - glaucoma, cataracts, osteoporosis, glucose control - because they assume it won’t happen to them."
She emphasizes that while overt steroid-toxicity may be less common now than it was 20 years ago, it remains a significant burden.
"We don’t see the same extreme cases of long-term toxicity that we used to. But that doesn’t mean the problem has gone away. It’s just more hidden.”
One of the most concerning patterns Hart has observed is the presence of steroid-dependent patients - those who remain on long-term steroids despite the availability of safer alternatives.
"There’s still a small cohort of patients who are just stuck on steroids. It would be fascinating to understand how they got there. Is it that they’ve had good responses in the past and now actively seek steroids? Is it a lack of clinician awareness? Or is there an element of collusion, where both patient and doctor opt for the ‘quick fix’ of steroids rather than exploring better long-term options?"
Understanding this patient subset, she argues, is crucial to breaking the cycle of overuse and reducing the burden of steroid-toxicity. Hart also sees a major gap in real-world data collection, making it difficult to track the true impact of steroid use.
"Are we nimble enough to capture accurate, real-time data on steroid use in electronic patient records? No, absolutely not. We’re heading in that direction, but we’re not there yet."
She sees an opportunity to integrate steroid-toxicity measurement tools - such as the Steritas GTI - into clinical trials and real-world data collection efforts.
"There’s an ongoing global effort to synchronize steroid use in clinical trials, but in the real world, steroid use is often undocumented or hidden. If we start to track it properly, it would change how we interpret real-world data and improve treatment pathways.”
Beyond structural and data challenges, Hart believes that addressing the culture of steroid reliance among both patients and clinicians is essential.
"We need to make sure clinicians are educated in thoughtful, impactful communication with patients. A few carefully chosen words can make a huge difference in a patient’s willingness to try steroid-sparing options."
Patient education also plays a crucial role. In the UK, Hart and her team direct patients to Crohn’s & Colitis UK, a charity offering clear, accessible information on steroids and their risks.
"Patients remember what their clinicians say. If we communicate effectively, they’ll be more open to alternative treatments. We have to make the case that avoiding steroids isn’t just about following guidelines - it’s about protecting their long-term health."
With her decades of experience in IBD care, Hart is clear about one thing: steroid overuse is still a problem that needs urgent attention. Through better data collection, clinician education, and patient engagement, she believes meaningful change is possible.
"We need to remind ourselves of the real impact of steroid-toxicity. It’s easy to stand up and say, ‘One course of steroids, then move to advanced therapy.’ But when you look at the data, that’s not what’s actually happening.”
And until that gap is closed, patients will continue to bear the hidden cost of steroid dependence.
Professor Ailsa Hart is the Director of St Mark’s Hospital Inflammatory Bowel Disease Research and a Consultant Gastroenterologist. In 2016, she achieved academic promotion with Imperial College to Professor of Practice and is among the youngest individuals to achieve this. She is Honorary Skou Professor (created in honor of the Nobel Laureate, Professor Jens Skou, to recognize internationally esteemed researchers) with the University of Aarhus, Denmark.