19 December 2022

Welcome to another helping of insights from Bowel Research UK’s Love Your Gut Week nutritional research! I’m taking one last look at the survey results, serving up some data leftovers and seeing if the online cancer and bowel disease communities can help – or hinder – patients in finding useful information. Let’s dig in!

In the Bowel Research survey on nutrition, online communities were mentioned with Facebook groups cited as examples of a helpful online resource. Similarly, when asked what information people would like, patient-to-patient dietary advice was cited.

For anyone living with a chronic bowel condition, information from other patients can indeed be very useful, and this isn’t only limited to the area of nutrition.

Coping with the mental and emotional effects of bowel disease or bowel cancer can be very difficult, but it often helps knowing that other people are going through the same things and talking to those people about their experiences.

The survey also unearthed a desire for people to be given non-dietary information such as stress management, pain management and treatment information. However, when thinking about medical advice, including nutrition, it’s important to bear in mind just how differently patients can react, say, when eating the same foods.

Even if on the surface, someone else seems to be experiencing the same illness, often our bodies don’t respond in the same way. A variety of factors in play such as age, disease severity, other medications, stress, rest etc mean that a diet that works for one person may not work for another. So while patient information can be very helpful, we still need to remember those individual differences when talking to each other online.

While the survey found that patients do want information from trusted sources such as medical professionals, it recognised that this isn’t always easy to come by. Given this situation, it’s natural that people look online for alternatives, including the patient community.

Information people in the survey wanted included:

  • recipes that incorporate nutrition advice
  • information on prebiotics, probiotics and good gut bugs
  • information on the impact of different food on bowel and pelvic pain
  • how to ease urgency and reduce output
  • explanations of why advice varies so much, to help people make more informed decisions based on their own medical needs
  • how to get nutrients when unable to process certain foods

Undoubtedly, some of this information could come from online patient communities, but an issue arises when misinformation is circulated – and social media is a breeding ground for this when people don’t check their sources or cite sources that lack even basic scientific scrutiny.

Therefore, if you do find information that you might like to act on, do verify the information first. Is it from a reliable source, such as the NHS website or a charity website, that confirms that what you’ve seen is approved medical advice? Or even better, can you ask your own medical team if they would recommend you take the action in question?

Advice on social media can be very unreliable, but you may find some useful tips that you can incorporate into your life or tailor to your needs. For example, one great idea is to keep a food diary so you can see how different foods affect your digestive system, experiment, and add or remove food from your diet as needed, while being careful to keep your diet as balanced as possible, which admittedly isn’t easy with bowel diseases. This kind of advice can be found in online communities and it leaves plenty of room for taking your individual differences into consideration.

Personally, I think online patient communities are at the best when it comes to emotional wellbeing. There are so many people on all social media platforms, as well as other community websites, who want to share their stories and talk to people who understand them.

Social media can also be a great place to vent about what’s happening, to people who really get it. However, it’s also important to remember that people are more likely to talk about negatives than positives – so if you feel like you’re being sucked into a black hole of “something terrible is happening to someone else, what if it happens to me, too?” remember those individual differences, know that everyone else’s experience is not your experience, and stop reading when it stops being helpful for you.

In summary, remember that non-professional medical and nutritional advice should be taken with a pinch of salt until you’ve verified it with a reputable source. But if you bear this in mind, online patient communities are often a great source of information, hope, and comfort.