Irritable Bowel Syndrome (IBS) is a common gastrointestinal disorder, with an estimated prevalence of 10–15%. However, many people remain undiagnosed as well as unaware that their symptoms indicate a medical condition.

In 1997, the International Foundation for Gastrointestinal Disorders (IFFGD) declared April as IBS Awareness Month in order to bring more attention to IBS diagnosis, treatment and quality of life. On the occasion of both IBS Awareness Month and World IBS Day on April 19, we spoke with Alison Reid, CEO of the UK-based charity The IBS Network.

Please tell us more about The IBS Network and your work.

The IBS Network is the national charity supporting people living with IBS to learn to better understand and live well with the condition. The charity offers a telephone helpline, a comprehensive self-care programme, and ask the experts online service as well as publications, information and factsheets on the different aspects of IBS. Whether you have recently been diagnosed with IBS, or have had the condition for many years, the charity provides information, advice, and support when you need it and ensures you are not trying to deal with a flare-up alone.

Our advisory team are highly experienced, specialist healthcare professionals and include gastroenterologists, registered specialist dietitians, nurses, pharmacists, and talking therapies experts.

Who is predominantly affected by IBS, and what can be done to help these patients, especially regarding their quality of life?

More than 12 million people in the UK suffer from IBS. It tends to affect more women than men and affects people of all ages.

Symptoms can include abdominal pain, bloating, increased flatulence, diarrhoea, constipation, mixed diarrhoea/constipation and passing mucus. Other symptoms include lethargy, nausea, backache and bladder symptoms. IBS is a very individual condition and symptoms will vary for each person.

There is no cure for IBS and no one treatment that works for everyone. The key to living well with IBS is self-management. Once you have a better understanding of what is happening in your body you will be able to explore what treatments work best for you.

Treatments include dietary and lifestyle changes; psychological therapies (talking therapies); and medications (see your GP or pharmacist for advice). These may be used together or on their own depending on the possible cause and severity of your IBS.

On your website, there is mention of the IBS Self-Care Programme. What can you tell us about this initiative?

As I mentioned, self-care is key to living well with IBS. This is why we created the IBS Self-Care Programme, which provides comprehensive information about the nature, causes, and management of IBS. Members can work through the programme at their own pace, finding out what works and doesn’t work for them. At the end of the programme, they will have created their own self-care programme.

We have to be honest with you; it’s not easy. Unfortunately, there are no quick “fixes” for IBS. It’s a debilitating condition that’s different for everyone. There is no one treatment that works for everyone. That’s why we designed the self-care programme. We wanted to give everyone the information and tools to understand their IBS and find what works for them. Being part of our community can really help; we are here for members when they need that extra support. They can ask a question to one of our medical experts and can be confident they are getting the best advice.

Through the programme, members can better understand their symptoms and how to manage them. They’ll learn what medications help, how to adjust their diet and how to better manage stress and emotions. They’ll design their own personal self-care programme and use our symptom tracker to track how their symptoms respond to change. For those who don’t want to complete an online programme the charity also offers a paper diary alternative which is available in its shop or by calling the office.

Please let us know more about your IBS Support Group. What does it offer to those affected?

Pre-pandemic we did have 16 support groups around the country. Along with everything else these closed in early 2020. Since then we have been looking at ways we can offer this service online at a local level. After groups have been established online we hope to gradually reintroduce localised group meetings; but this might take some time.

April is IBS Awareness Month: What is The IBS Network planning in terms of events, workshops, webinars etc. in order to raise more awareness?

April’s IBS Awareness Month is a time when we step up our efforts to raise awareness of IBS and how to live well with the condition.

This year, we are launching a new campaign, encouraging members of our community to celebrate all the things they can still do and all the things they can try, which will improve their mental and physical health.

We hear from people every day who start by saying, “I can’t …”. They can’t go out, eat out, go to work, see friends, or enjoy their hobbies because of their IBS.

We are encouraging our community to try and think differently, exploring what they can still achieve. We’re keen to see what effect this has on mind set and managing their IBS.

Taking action, making a change, or changing an attitude or belief are all great ways to improve mental health and keep depression, stress, anxiety and frustration at bay, which, in turn, can help ease IBS symptoms. We know it’s not easy or straightforward, but with the right support, we believe that it is possible.

We are holding two webinars: one about stress, anxiety and IBS (Monday 4 April, 11 am to noon) and the other about diet, “What can I eat?” webinar (Wednesday 20 April, noon to 1 pm).

We’re also planning a cook-along with the chef from Field Doctor. Throughout the month, we’ll be sharing advice, information, interviews, competitions and more.

How has the COVID-19 pandemic affected both the lives of IBS patients as well as the work of your organization?

The global pandemic has been difficult for everyone. Enquiries from people living with IBS greatly increased as the full force of the stress and anxiety they felt started to impact on their condition. The core team at the charity worked long hours to ensure that every phone call and every email asking for help was answered. We want everyone living with IBS to understand that they are not alone.

I’m very proud of how The IBS Network team responded to make sure our community felt supported during that time. We quickly adapted to new ways of working, increased our communications to members, and made sure we were there for everyone who needed us. As we have emerged from the pandemic, the challenging and uncertain times continue, and we are more determined than ever to be here to continue to support our members into the future.

Many thanks for the interview!