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The journey for people with inflammatory bowel disease can be lonely and uncertain, but strategies and support are available for patients and their health practitioners.
In 2019, global estimated prevalence rates of inflammatory bowel disease (IBD) placed Australia in the top five regions. The Australian age-standardised prevalence rate of IBD has increased from 0.09% in 1990 to 0.15% in 2019. This gives an estimated crude prevalence of 653 cases per 100 000. We do not need to look far to see that IBD is at our doorstep. Areas such as Canada Bay in Sydney, regional Victoria and Tasmania report high rates of IBD.
IBD is commonly diagnosed between the ages of 15 and 35, but it can be diagnosed at any age. Although the causes of IBD are still being elucidated, the disease causes tremendous upheaval for those living with the condition. Unfortunately, the age of onset is often in the prime years of life, with peaks in the second or third decade of life, and a peak in the sixth decade. The unpredictable relapsing–remitting nature of the condition and debilitating gastrointestinal side effects impact personal relationships, employment, psychological health and people’s relationships with food and eating.
The challenges of dietary management
Dietary therapy is a tool for the management of IBD, and can reduce intestinal inflammation, promote healing, alleviate symptoms and improve nutritional status.
Exclusive enteral nutrition (EEN), a type of dietary therapy, has been noted to be as effective as corticosteroids in children with Crohn’s disease. However, EEN is not recommended in ulcerative colitis and long term use in adults with Crohn’s disease has shown no differences in maintaining remission compared to corticosteroids. Therefore, using diet for IBD management is one of the top 10 research priorities for people with IBD.
Despite global interest, diet is consistently reported by people with IBD as an area of unmet needs. Previous research by our research team, summarising 46 studies of 7557 people with IBD, has found that people with IBD have a strong desire to access specialised dietary advice, especially at key points of the disease journey such as diagnosis, relapse and remission. Doctors have been identified as important gatekeepers to access specialised dietary advice.
We explored these unmet needs further. Those living with IBD described exasperation with the cyclical nature of IBD. Given that the journey with IBD is unique, individualised diet advice was strongly desired and used to exert control in a disease with an unpredictable nature.
Many people turned to online sources when unable to access specialised advice. The potential for misinformation poses serious risks for the development of nutritional deficiencies, such as iron and calcium and increases the risk of malnutrition, which may impact response to medical therapy.
In contrast to these perspectives, we also interviewed health professionals about treating those with IBD. Dietitians described a mismatch of the expectations about diet and IBD between doctors and people with IBD. For example, health professionals described diet as an adjunct to conventional treatment, for the prevention of nutritional deficiencies and malnutrition and for overall wellbeing; whereas people with IBD often described the role of diet as a potential alternative to medical treatment. Dietitians also reported that people with IBD commonly implemented unwarranted food restrictions and developed food-related anxieties because of unmet dietary needs and inadequate access to specialised dietary care.
Supporting patients with IBD
We are currently using artificial intelligence to examine social media posts and Google queries by people with IBD. In addition to a strong desire for advice about food, nutrition and access to specialised dietary care, the results have shown that people with IBD have also asked many questions about medication management, treatment options and psychological distress. There is also a clear desire to connect with others who have the same condition and to share insider knowledge and coping strategies.
The journey of IBD is described as lonely and uncertain. Simple supportive strategies include connecting people with the same condition. The peak advocacy organisation for IBD in Australia is Crohn’s and Colitis Australia. This organisation has formal mechanisms to connect with peers in a confidential manner. In addition, they offer online and telephone support. They also have specific services to support those in rural and remote communities.
Other strategies to help meet the needs of people with IBD include specialised dietary support (such as via DECCAN, the Dietitian Crohn’s Colitis Australian Network) at important points of the IBD journey. This includes at diagnosis, and during times of relapse or treatment changes. Correcting nutrition misinformation and reinforcing the message that diet does not replace medication is also important.
It is anticipated that guidance will continue to evolve regarding IBD and diet. Promising insights have emerged regarding how dietary components may contribute to the pathogenesis of IBD. For now, a safe recommendation for most people with IBD in remission, is to consume a nutrient dense diet that includes fruit, vegetables, lean meats, dairy and wholegrain foods with minimal processed foods, and excludes individual triggers. Importantly, individualisation is required due to the uniquely changing needs of the condition. Further guidance on diet and on IBD management for GPs is also available.
Chiara Miglioretto is an Accredited Practising Dietitian and PhD candidate at the University of Wollongong.
Associate Professor Kelly Lambert is an Advanced Accredited Practising Dietitian and academic program director for nutrition and dietetics at the University of Wollongong. She has 30 years of lived experience with IBD.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
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