There’s a huge appetite for reliable information about diet and nutrition for people with inflammatory bowel diseases and those living with the aftermath of bowel surgery. The trouble is reliable advice is in short supply.
A survey sent to over 1000 bowel disease patients by Bowel Research UK, a national charity that funds early stage medical research into bowel diseases, found over just over half (56%) saying there is not enough information for their particular bowel condition, especially when they were first diagnosed.
Around a third of the people surveyed had had bowel surgery and told us they would have benefited greatly from dietary advice about reintroducing food and fluids post-operatively. They would have also welcomed more guidance on portion sizes and frequency of meals.
Nearly six in 10 said they would like easy-to-understand charts or graphics depicting which food groups to eat or to avoid, especially foods specific to their bowel conditions.
Moreover, around four in 10 wanted easy access to research-driven information, backed by statistically significant data collected from professionally conducted patient studies, which would help them, for example, avoid foods likely to exacerbate their conditions.
In the absence of medical dietary advice, and out of personal preference, just under around 3 in 10 patients said they exclusively turned to online information sources, while fractionally more (30.5%) said they wanted advice only from a medical professional.
One issue is the sheer number of webpages devoted to diet and nutrition for IBD patients. A Google search for “ulcerative colitis diet” returned 15 million results, while Googling for “Crohn’s diet” produced 339 million search results and “colitis diet” yielded 199 million results. Searches using phrases such as “foods that reduce intestinal inflammation” returned 21 million search results.
Lynn Dunne, Interim CEO of Bowel Research UK, said:
“It is concerning to hear from our survey respondents about the absence of specific advice on food and nutrition given to IBD and bowel cancer patients and hardly surprising that many turn to the internet to fill the gap given the ease of access to the internet and social media for most.
“However, a big problem is that common searches around the topic come up with a mind-boggling number of web pages returning results, and there’s also an issue over the quality and validity of the information and advice.
“While Google isn’t perfect it has come a long way in filtering out some of the worst examples of either misguided or deliberately misleading dietary advice. It ranks sites using its E-A-T criteria (Expertise, Authoritativeness and Trustworthiness), so people googling medical questions are more likely to find information from reputable sources rather than unreliable sources, and it deploys a special classification known as YMYL (Your Money, Your Life), which holds these websites to a higher page quality standard because of their potential to impact people’s safety, financial stability, health or happiness.”
Despite these filters, Bowel Research UK found there were popular websites actively used to promote the sales of products such as dietary supplements or pushing non-medically recognised conditions like ‘leaky gut syndrome’.
One website (which has 3,300 visits a month) argues leaky gut can be healed by diet. However, a blog on the same site is also a means for promoting food supplements.
Bowel Research also recorded there were over 560,000 webpages devoted to the search terms “Alkaline Diet for ‘treating’ Crohn’s”, or 11.6m to “fasting for Crohn’s” and 339,000 on “Specific Carbohydrate Diet for Crohn’s”.
While there may be partial merit in some of these claims, Bowel Research UK found some websites were clearly failing to provide balanced or nuanced reports, or had not pointed out where further research is needed, or the size of the research studies.
For example, this high trafficked webpage (with 203, 900 visits to this page a month) carried a story based on a single patient case study claiming that a plant-based diet led to Crohn’s disease remission. The story failed to point out that high fibre diets may be more harmful for some people and that individual patients may respond differently.
Lynn Dunne, Interim CEO of Bowel Research UK, continued:
“Our aim during Love Your Gut Week is to help raise awareness of good and misleading online information sources and make sure people are not inadvertently sent down the wrong routes because someone is trying to sell them inappropriate things like a food supplements, unnecessary vitamins or frankly bogus lifestyle advice. Instead, we are pleased to highlight some excellent sources of medically trustworthy information for IBD patients.
“The issue is that it’s simply not possible to recommend a diet or eating regime that is going to work optimally for people with different bowel diseases. What might be the right foods and nutrition for someone with Crohn’s disease may be inappropriate for someone recovering from bowel cancer.
“Other factors must also be taken into account such as a person’s general state of health and fitness, weight, the presence of other medical conditions, their medication regimes, general lifestyle choices including religious/cultural practices, personal food intolerances or allergies. When you add in all these factors you can see there is definitely no ‘one size fits all’ situation and we are worried just how easy it is to do unintentionally more harm than good by recommending the wrong foods or eating regimes”.
Recommended websites for dietary advice for IBD patients: