Dan Wood PhD FRCS UROL
Consultant in Adolescent and Reconstructive Urology, London Urology Associates
There is a range of patients affected by issues relating to their bladders early in life. Some may be born with conditions – such as bladder exstrophy or posterior urethral valves – others may have neurological problems, such as spina bifida, which can affect the function of the bladder and bowel.
Some may develop changes in the way their bladders work as a result of conditions that arise in childhood – e.g. infections, some forms of tumour or injury as a result of trauma.
Most of these conditions are rare, but for those affected there are some important messages.
There is increasing expertise in the medical and surgical management of these (sometimes) complex conditions. While doctors are always looking to develop ideas to further improve care, the treatments that exist today have made a huge difference to the quality of life that many patients can expect to enjoy.
Healthcare professionals support patient self-care
It is important to know that, while there may still be some challenges to manage, many people go on to live very happy, healthy lives. As healthcare professionals, we try to support individuals to become experts in their own condition and what has happened to them. This allows them to describe their condition, the surgery or other treatment they have had and what has gone wrong. With appropriate back-up and education some may be able to describe or even undertake the first steps of self-management when things go wrong.
It is important that everyone knows when to seek expert help and how to get hold of those who can help them if needed. This comes as part of the long-term care and regular follow-up that is vital for everyone to get the best from their body and to avoid as many problems as possible.
Don’t let bladder and bowel issues take away your independence
This gives anyone affected by these conditions a huge amount of independence, allowing them to socialise with friends, fulfill their full educational potential, engage in relationships and (for many) have children. A child who has been affected by any of these conditions, will grow up with questions – and at times fears – about what life will hold for them. These are questions that we all ask ourselves, but the added worries about their condition or its treatment may amplify some concerns.
Christopher Woodhouse and I carried out an audit to look at what our patients were doing in 2010 (see Table 1) 1. They are adult patients, many of whom have been affected but conditions they were born with and, as a result, have needed complex surgery. We found that only 8% were unemployed and around two-thirds were working in professional or skilled jobs. They are an extraordinary group of patients to work with – courageous, persistent, determined, knowledgeable and often achieving great things.
Table 1: Occupation audit results by diagnosis
 Woodhouse, C. R. J., Neild, G. H., Yu, R. N. & Bauer, S. Adult care of children from pediatric urology. J. Urol. 187, 1164–71 (2012).