Shining a light on difficult issues in IBD

Continued from July 2018 e-newsletter – Falk Nurse Forum in Bristol, 21st September 2018

‘Although awareness of IBD has grown ten-fold over the last decade, some patients still find it very difficult to really open up about the more difficult areas of their condition such as incontinence or body image,’ says Allyson Lewis. ‘Patients are very good at suffering in silence and often we have to prompt them to tell us what is really happening with their body so that we can work out a way to help them.’

Mrs Lewis will be chairing the session on IBD in pregnancy, debating issues such as medication during pregnancy, flare ups and foetal care.

‘Pregnancy can be a time of uncertainty for anyone, but if you are living with a lifelong condition that can be even more difficult,’ she says. ‘IBD brings a lot of questions and worries for a pregnant woman and it is vital that we communicate well and are there when they need us. This is where our telephone or virtual clinics come into their own allowing us to keep in regular contact without the patient having to come into a hospital clinic.’

Vanessa Cambridge will be overseeing the afternoon session on faecal incontinence and body image. She believes that the topics covered at the Falk Forum have as much significance to patients as their clinical treatment.

The issues we are discussing make up the reality of life for many IBD patients,’ she explains. ‘The clinical side is vital but I think sometimes we all need reminding that treating IBD is about providing patients with the best possible day to day quality of life so that they can live as normal a life as possible.
‘So, when you hear a patient telling you that he has bought a camper van just so that he can have a toilet wherever he goes, or a wife explaining that they have to keep changing the carpet because of continual accidents, then you know that, even if their condition is clinically stable there is more work to be done.

‘As IBD nurses, we can all benefit from a greater understanding of what the patient is going through so we can help them to manage their condition better. We really hope that this Forum goes some way to achieving this.’

Chair of the Transitioning Session, Vida Cairnes chose this topic in the hope that sharing best practice in this little discussed area of IBD with her fellow nurse specialists will help to improve services for young people across the country.
‘‘How you move from childhood to adulthood can impact your entire life,’ she explains. ‘Young people are going off to university, building careers and forming relationships. IBD patients have the same aspirations as their peers except with added challenges. It is incredibly important that we get it right and support our young patients so that they can achieve their full potential, yet transitioning is one of the least discussed areas of IBD care.
‘At Exeter we start to work with youngsters as early as the age of 12 to prepare them for this change. Ideally we would have a paediatric IBD nurse who would work alongside us, supporting our youngsters as they transitioned into adult services. Regrettably, paediatric IBD nurses are still in short supply nationwide.
‘That is why we are delighted that Dr Falk has chosen to support us in raising awareness of difficult topics in IBD. IBD nurses provide a vital role in improving the day to day life of patients and it is so important that we get these opportunities to discuss and share our work with each other.’