Research Shows a Lack of Support With Ongoing Bowel Care Needs For Patients With Spinal Cord Injuries
Research by SIA (Spinal Injuries Association) has found that 57% of people with SCI felt the health and care system doesn’t work for them, citing that bowel management is a ‘problem’.
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Bowel Care and Spinal Cord Injuries
Living with a spinal cord injury (SCI) can dramatically alter every aspect of daily life, one such aspect is bowel management, an often overlooked element of SCI. Loss of control and independence in bowel function can be one of the most challenging and distressing outcomes.
Abbots Care, in collaboration with the Spinal Injuries Association (SIA), is committed to raising awareness and providing support through the ‘Paralysed Bowel’ campaign, which aims to highlight the serious nature of bowel management issues in people with SCI.
Monday 10th February 2025 marked the first-ever National Paralysed Bowel Care Awareness Day, with the Spinal Injuries Association (SIA) advocating for high-quality, accessible bowel care at Westminster.
Bringing together policymakers, healthcare professionals, and individuals with lived experience, the event highlighted the challenges many face in accessing essential care. SIA emphasised the need for national standards, increased NHS investment, and better training to ensure dignity and independence for those with spinal cord injuries.
By engaging key decision-makers, the campaign reinforced that bowel care is not just a medical issue but a fundamental right. This milestone event set the stage for long-term change, ensuring that paralysed bowel care remains a priority in healthcare policy.
Understanding bowel dysfunction after a spinal cord injury
After a spinal cord injury, the communication between the brain and the parts of the spinal cord that control bowel movements can be disrupted. This disruption can lead to two types of neurogenic bowel dysfunction:
- Reflex bowel: Occurs when the spinal cord injury is above the T-12 level, leading to the loss of conscious control over bowel movements but maintaining reflexes that cause the bowel to empty automatically.
- Flaccid bowel: Occurs when the injury affects the lower part of the spinal cord (below T-12), resulting in a reduction or loss of the reflexes that help control bowel movements.
These changes can lead to complications such as constipation and bowel incontinence, significantly impacting the quality of life and social independence of an individual.
Research on living with spinal cord injuries, and the impact on bowel care
The physical and emotional toll of managing bowel dysfunction cannot be overstated.
SIA recently surveyed people living with an SCI in the UK finding that:
- Bowel management is considered a top priority area for those living with SCI. 369 people surveyed stated that bowel management is in the top 5 most important elements of their care.
- 54% of people in the survey who had been admitted to hospital in the last 2 years, felt that their bowel function was handled badly by healthcare professionals.
- One person said – “My wife had to come to the hospital to do my bowels as they had no idea how to deal with a tetraplegic patient”.
- 34% of people who were hospitalised in the past 2 years felt that their bowels remained an ongoing problem following hospitalisation.
- On the other hand, 88% of people living with a spinal cord injury who manage their bowel function at home felt that it was managed “Adequately” or “Very well”.
The statistics highlight a clear knowledge gap with hospitals and healthcare professionals struggling to meet the needs of people living with a spinal cord injury.
Physically, individuals living with an SCI have to adhere to strict bowel care routines. This might include the use of laxatives, suppositories, or digital stimulation to trigger bowel movements at scheduled times. This process can be time-consuming, uncomfortable, and, at times, ineffective, leading to accidents.
Emotionally and socially, the unpredictability of bowel control can lead to anxiety and embarrassment, affecting a person’s willingness to engage in social activities and lowering their overall quality of life. The fear of a bowel accident can be a significant barrier to employment, recreation, and personal relationships.
Strategies for Management
Effective bowel management is crucial and involves several strategies that can help mitigate the impact of SCI on bowel function:
- Routine care: Establishing a regular bowel care routine is important. This might include setting specific times each day for bowel movements to help train the bowel to become regular.
- Diet and hydration: A diet rich in fibre and adequate hydration can greatly assist in managing bowel health, aiding regularity and ease of bowel movements.
- Physical activity: Physical activity should be incorporated into daily routines as much as possible to help stimulate bowel function.
- Medical interventions: In some cases, medications or surgeries might be necessary. Consulting with healthcare providers specialising in SCI can provide you with a personalised care plan.
- Technology and research: Research is making progress in finding improved bowel management solutions. Innovations such as transanal irrigation systems and neuromodulation devices are being explored and developed to provide more control and independence to those affected.
For many with a spinal cord injury, mastering this new aspect of their physiology requires education and support. This is where the role of healthcare professionals, such as those at Abbots Care, and experts in the field at the Spinal Injuries Association becomes invaluable. Abbots Care and SIA provide the necessary training and support to individuals and their families, helping them to manage bowel care effectively.
Bowel care advocacy and support
Through the Paralysed Bowel campaign, Abbots Care and the SIA are dedicated not only to bringing attention to these challenges but also to providing practical support and resources to those affected. This includes education on bowel management techniques, advocacy for better healthcare practices, and support networks for individuals and their families.
For more information and resources, you can visit SIA’s website. Find out more about Abbots Care spinal cord injury homecare services, or call our friendly team on 0330 094 5511.
