Paralysed Bowel Care Awareness

In February, the Spinal Injury Association organised its first National Paralysed Bowel Care Awareness Day (previously known as The Serious Sh1t Campaign) in Westminster (Portcullis House). The campaign addresses the severe problem of patients with spinal cord injuries being denied essential bowel care in medical environments, resulting in harmful neglect. Nurses, carers, disability charities, SIA’s partners and even members of parliament supported the event in efforts to demand better care and prevent unnecessary suffering. The event aimed to increase public awareness and drive action towards improving healthcare practices for these vulnerable patients.

According to the Spinal Injury Association survey from 2024, 51% said that bowel management was their main concern in life with a spinal cord injury, and 54% said they had received substandard bowel care after being admitted as an inpatient. Neurological conditions, including spinal cord injuries, multiple sclerosis, Parkinson’s disease, and spina bifida, are estimated to cause paralysed bowel symptoms in over 457,000 people across the UK.

To better understand the paralysed bowel care, in the article, you will find information about:

• What is paralysed bowel care?
• Challenges with paralysed bowel care
• How can you manage the loss of control over your bowel, paralysed bowel management
• What changes need to be made in order for people with spinal cord injuries to feel safer and supported
• How Alcedo Care can help and support you

What is paralysed bowel care?

Depending on the severity of the spinal cord injury, the individual may lose full or partial mobility, control and sensation, including subconscious processes, blood pressure, bowel and bladder function. Due to the interruption of nerve signals between the brain and the bowel muscles caused by spinal cord injuries, individuals may experience neurogenic bowel dysfunction, which involves a loss of feeling and control over bowel emptying. Therefore, individuals with spinal cord injuries may rely on other people (family or carers), depending on the level and completeness of the injury, to help them empty their bowels to prevent constipation and incontinence. Implementing a regular bowel care routine can significantly improve the quality of life for most people.

Unfortunately, patients often experience difficulties when admitted to healthcare settings, as healthcare professionals might lack training and understanding on how to deliver these intimate care requirements and the denied carer access. That situation can lead to wearing a nappy, skin irritation and soreness, bladder infection, constipation, bloating and even a risk of bowel perforation.

These narratives are two of the topics that SIA raised with the Parliament and MPs:

1. Carer Access in NHS Settings: Allowing carers to perform bowel care where necessary.
2. Dedicated Nurse in Each NHS Trust: Ensuring each NHS trust has a nurse trained in paralysed bowel care. (According to SIA’s survey, only 21 NHS England Trusts allow the personal care assistants/carers of SCI people to assist with the bowel care element of the patient’s care)

Challenges with paralysed bowel care

Spinal cord injury can lead to life-changing conditions that affect you, your loved ones and your life as you know it. Losing sensation and control over your muscles, and especially bowel and bladder, can affect not only your self-esteem but mental health, too. Therefore, proper support and bowel management routine are recommended so that you can lead a better quality of life. However, the paralysed bowel care has its challenges too. Most common ones are:

• Mental health – spinal injuries affect your life and daily routine, and could have their mental toll while transitioning and adapting to your new routines and lifestyle, especially when it comes to more intimate activities like bowel care and relying on other people to support you with that.
• Bowel accidents
• Complications like autonomic dysreflexia (AD), inflammation, haemorrhoids, bladder infection, chronic diarrhoea, skin irritation, constipation or impaction.

With the right support, diet and following a bowel care schedule, these challenges can be reduced to a minimum. If you experience prolonged episodes of any of the above, please consult with your GP or spinal cord specialist.

How can you manage the loss of control over your bowel?

Here are some methods to help with your bowel management routine:

• Medications – Following a thorough consultation, your GP and spinal consultant can prescribe medications that help soften stool consistency, prevent constipation, impaction, and leakage, and stimulate stool movement through the colon, ensuring your health is not negatively affected.
• Laxatives – oral medications prescribed to help move stools through your gut or relieve constipation. That includes lubricants and stool softeners, bulk-forming agents, osmotic and oral stimulants.
• Suppositories and enema (rectal stimulants) – rectal medications that lubricate the stool and trigger muscle contractions to assist with bowel movements.

Following a regular bowel care scheme is essential for your quality of life as it prevents any potential bowel management problems, such as an excessive stool build-up that becomes dry and difficult to pass. If you experience any issues with your routine, speak with your healthcare professional.

There is another alternative to the above options that people with spinal cord injuries may choose. Over time, some people consider having a colostomy, a surgical procedure that reroutes the large intestine/colon via a stoma so that it empties on the outside of the abdomen, as it may give them more independence and peace of mind compared to other bowel care routines.

Should you wish to consider this option, a consultation with your GP or a member of the medical team at your spinal cord injury centre is recommended. More information about colostomy, its pros and cons, can be found here

More information and advice about bowel management can be found here.

What changes need to be made in order for people with spinal cord injuries to feel safer and supported?

Spinal Injury Association recommends that people with spinal cord injury have an emergency plan in place so that, in case of being admitted into a hospital, all their essential care needs are documented. More about the emergency plans can be found here.

Moreover, changes in the healthcare system should be made so that people with spinal cord injuries can feel supported and safe when admitted to the hospital. That could include a better understanding of paralysed bowel care, more trained staff assisting with bowel management and the potential risk of unassisted bowel care.

How Alcedo Care can help and support you

At Alcedo Care, we understand how challenging a spinal cord injury is and what effects it can have on an individual’s life. Therefore, our nurse-led teams provide a personalised care plan to assist you or a loved one with a spinal cord injury to have a better quality of life. Depending on your needs, our carers receive bespoke training in Spinal Cord Injury care and autonomic Dysreflexia management, including assisting with medication administration, Neurogenic bowel, bladder and skin care, stoma care, personal care and care carers will receive specialist Moving and handling training, etc.

If you want to learn more about how we could help and support you, please get in touch today.