Parents may also have to explain their child’s condition and associated care to school, extended family and others who look after their child, such as out-of-school clubs or nurseries.

What is often forgotten is that a bladder or bowel condition in one child can affect other children in the household as well. It is not easy to invite friends to play or to sleep over if you are worried about any lingering smells at home due to episodes of incontinence, or how others may react to a brother or sister’s toileting routine. There may be anxiety that if friends find out that a sibling has a bladder or bowel issue, they may tease or bully both the affected child and their sibling. Many children will also be conscious of the additional pressure that managing the bladder or bowel issue causes for their parents.

Difficulties managing journeys and finding appropriate places to clean and change a child who has experienced urinary or faecal incontinence, and any associated embarrassment or perceived stigma, may limit the activities that a family feel confident to do. This may result in all the children missing out on holidays, day trips, visits to wider family and friends’ homes or other outings that their peers take for granted.

Children who have bladder and/or bowel issues are more likely to struggle with self-confidence and self-esteem, and there may be psychological impacts from the issue, but these may also affect the child’s brothers or sisters. They may become upset when they realise that their brother or sister should be clean and dry, or if they perceive others are responding negatively to them due to the wetting or soiling. Parental attention may be focussed on the child with the problem: on the practicalities of managing, attending appointments and undertaking recommended treatments. This may result in parents having a reduced capacity to provide support and attention to other children in the family.

Different rules about what is acceptable for different children within a family may be difficult for young people to understand. Differing boundaries may give rise to disharmony and feelings of neglect or resentment and may induce anxiety in other children. Occasionally, younger siblings of the affected child may respond by regressing in their own toileting.

The way that families approach managing bladder and bowel symptoms can help all the children in the family. When families understand that children do not wet or soil to be naughty or because they are lazy, but because they have an underlying problem, then the first steps can be made to work on a solution.

Talking to all the children about the issue, what is thought to be causing it and things that can be done to help, will reduce any feelings of isolation that the affected child has and allow their brothers and sisters to offer support, encouragement and to feel involved. This positive response may also eventually help to reduce the taboo in society on discussing bladder and bowel health issues.

Healthy eating, drinking and toileting habits are often recommended as first-line interventions for both bladder and bowel issues. All children in the family can be involved in these and in offering support and encouragement. Positive role modelling and motivators for all the children to exhibit desired behaviours can create a sense of solidarity and involvement.

Other children in the family should not have to provide direct care to the child with the issue, but some may want to be involved and offer practical, as well as moral support. They may also be able to give different perspectives about how the child is managing when away from home e.g. in school or when with wider family members.

Every child and family are different. Therefore, how bladder and/or bowel symptoms in one child affect the other members of the family will be unique. Some basic principles that can help other children in the household feel included and helpful are:

• Ensuring that all the immediate family know how the bladder and bowel work and how to promote bladder and bowel health.
• Provide opportunities for children to ask questions, to be involved and to help support a sibling who is affected by a bladder and/or bowel condition.
• Seek support from your child’s school nurse, health visitor or other healthcare professional who can help you support all your children when one of them has a bladder and/or bowel issue.

For more information about bladder and bowel conditions in children and how they may be managed please visit the Bladder & Bowel UK website.

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The NHS estimates that 14 million people of all ages are living with bladder problems, and one in 10 of the population is affected by faecal incontinence. This new campaign aims to raise awareness of the role individuals play in supporting loved ones who experience the problem and the kind of support they need in turn.

The new campaign will engage with those people who are supporting friends and family members – listening to their voices and gathering their experiences through original research. It will introduce a new series of resources to provide help on topics such as ‘How to have difficult conversations: talking to a family member about incontinence’ and ‘Signs a family member may need help with incontinence.’

The campaign also seeks to emphasise that families and support networks often struggle to deal with incontinence and remind policymakers that the burden of care often falls unjustly and disproportionately on family members who need more specialist support.

Resources

The informative resources, produced by Bladder & Bowel UK’s team of specialist nurses, are available from the campaign hub. Topics covered include:

• Supporting someone with incontinence: Shining a light on the impact on families.
• Signs a family member may need help with incontinence.
• How to talk to a family member about incontinence.
• Who can help me if I am concerned about my child’s bladder and/or bowel health?

Survey

The campaign will ask audiences to share their experiences, explore how supporting someone with incontinence might have affected their own well-being, and affirm what kind of support they would benefit from. The impact of incontinence on families and support networks survey is now live on the campaign hub.

Alongside the survey, a submission portal is open. This allows people to share anonymously what they have learnt on their journey of supporting an individual with incontinence. The portal is available to offer advice to others in similar situations.

Karen Irwin, Specialist Nurse and Service Manager, Bladder and Bowel UK said:

“Many of us will find ourselves supporting a loved one with incontinence at some point. This is something that is rarely discussed – even within families. This campaign is about shining a light on the experiences of everyone involved and providing guidance and advice to people navigating this tricky terrain. We want everyone to get the help they need, and to do this we need to tackle the taboos. People should know that they’re not alone in this.”

Sarah Curtis, Managing Director – UK, Ireland & BeNeLux, Attends said: “We understand how much effective continence care improves wellbeing, not only of individuals but their families and friends as well. That’s why we are delighted to be supporting Bladder & Bowel UK’s vital new campaign. Taking a holistic view of what continence support is and working towards a better understanding of the often-forgotten impact of incontinence on support networks.”

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Incontinence (leakage of wee or poo), difficulties with toilet training, or other issues with toileting can result in difficulties at home, nursery, school or in the wider community. They are a source of stress and frustration for families, not only due to the difficulties of practical management of ‘accidents’, but also because of the impact on your child.  

Children who are struggling with learning the skills required for toilet training, or who have toilet trained but have new or continuing wetting or soiling (urinary or faecal incontinence) are often embarrassed and upset about the problem. However, some children will behave as if they do not care about an issue that they cannot control. This may make you feel the wetting or soiling is deliberate, laziness, or naughty behaviour. This is very rarely the case. Childhood incontinence, or issues such as appearing to leave it to the last minute to go to the toilet, is nearly always caused by a bladder and/or bowel health problem. Most of these can be successfully treated. 

Wetting and/or soiling in children and young people may be associated with emotional problems, difficulties with mental health, poor self-esteem and reduced social opportunities. Furthermore, the additional washing and clothing needed may be expensive. Therefore, it’s important you know where to turn for more help and information.  

In this blog post, we outline what you should be able to expect from the different professionals who may work with you and your children within health or education.  

Nursery

Nurseries should ensure that all children in their care are kept safe and supported to learn and develop according to their individual needs. This includes providing support for bladder and bowel health. 

• It is reasonable to expect nursery to support the needs of your child, as an individual, whilst in their care and review this support regularly.  
• Staff at nursery should be trained in supporting you and your child with learning the skills that they need to be successful with toilet training. You should not be expected to wait until a particular age for this. 
• Healthcare professionals can train nursery staff to complete any procedures your child needs for their bladder or bowel health e.g. catheterisation. 
• If nursery identify a cause for concern, they should discuss this with you and suggest that you contact your local GP or health visitor for further assessment, advice, and support.  

Health visitors

Health visitors are qualified nurses that sit under the umbrella of universal services. This means they should be available to all families with children who have not yet started full time primary school. They work to identify health needs as early as possible and to improve young children’s health. Your health visitor should meet you when your baby is about ten days old. They will see you either at home, in a local child health clinic, or at your GP surgery. 

• Health visitors should be trained in children’s bladder and bowel health and assessment of any possible issues.  
• Health visitors are often the first point of contact for assessment and guidance of your child’s bladder and bowel issues.
• It is reasonable for these health professionals to discuss your child’s bladder and/or bowel issues with their GP. They may also, with your consent, talk to other professionals supporting you with your child e.g. social worker or family support worker or other healthcare professionals.  
• Once they have completed their assessment they will work with you, your child and your child’s GP to provide a plan of care. This may include some treatment or referral for more specialist support. 
• You should be provided with verbal and written information about your child’s bladder or bowel issue and any treatment options.

School nurses

School nurses are trained nurses that are also part of universal services and work with children aged 5 -19 years old. They work in schools and other settings to promote health, identify health needs and offer suggestions to prevent health issues getting worse. They can also refer to other services as required. School should be able to provide you with information about how to contact your school nurse.  

• School nurses should be trained in children’s bladder and bowel health and assessment of any issues. 
• You can contact your child’s school nurse if you have any concerns about your child’s bladder and/or bowel. 
• If your child is at secondary school, they may be able to ask to see the school nurse at a regular ‘drop-in’. They do not have to say why they want to see the school nurse.  
• They should be able to offer initial assessment and suggestions to help. 
• The school nurse may discuss your child’s bladder and/or bowel health with their GP. They may also ask your consent to talk to other professionals who are supporting your child e.g. social worker, family support worker, other healthcare professionals.  
• Once they have completed their assessment they will work with you, your child and  your child’s GP to provide a plan of care. This may include some treatment or referral for more specialist support. 
• You should be provided with verbal and written information about your child’s bladder or bowel issue and any treatment options. 

General Practitioners

General Practitioners (GPs) are doctors who treat common medical conditions and can also refer on for more specialist advice and treatment if this is required.  

• You can contact your GP if you have concerns about any aspect of your child’s bladder and or bowel health. You do not have to have seen a health visitor or school nurse first. 
• Your GP will review any assessments completed by your child’s health visitor or school nurse, if you have already spoken to them, and discuss with treatment options and provide general lifestyle advice to help. 
• It is reasonable to expect that they may wish to complete a face-to-face physical assessment of your child. This may include examining their tummy or asking for a urine or stool sample.   
• Dependent on your child’s condition and/or progress they may refer your child for further assessment and treatment with another health professional in a specialist service. This can be a specialist nurse, therapist or paediatrician. Referrals may take some time as many services are very busy and have long waiting times. 
• You should be provided with verbal and written information about your child’s bladder or bowel issue and any treatment options. 

School or collage

Schools or colleges are often able to identify health concerns in children and young people. They should discuss any such concerns with you and they may also ask the school nurse for support and advice.  

Schools have a duty to support children and young people with medical conditions. There is more information about what you can expect from school if your child has a bladder or bowel issue in the guidance: Managing Bladder and Bowel Issues in Nurseries, Schools and Colleges.

• Professionals in school such as your child’s teachers, teaching assistants, special educational needs coordinator (SENCO) may raise any concerns with you.  
• Education staff may ask for the school nurse to contact you and request consent to assess your child or they may ask you to contact the school nurse or your GP, and, as appropriate, seek further advice from your GP regarding your child’s continence. 
• Schools must make reasonable adjustments to meet your child’s bladder and bowel needs whilst they are in their care. This includes during school trips and sports sessions 
• Schools should provide safe, clean, and accessible toilet facilities for your child. They should allow them access to these as required. 
• Schools should allow children and young people to drink water regularly during the day, to ensure they stay well hydrated.
• It is reasonable to expect that school will discuss a care plan for your child with you and with your child if this is appropriate for their age and development. 
• School may request that other professionals involved in your child’s care contribute to any care plan to ensure that your child’s needs are met, and difficulties addressed promptly. 
• School may request support and training from a specialist team, if they are involved with your child’s care and your child needs support for interventions that need to be carried out in school e.g. catheterisation or stoma care. 
• Schools should be able to make suggestions about where you can get further information and support about your child’s bladder and/or bowel issue.  

Specialist services

Specialist services for children and young people’s bladder and bowel health vary across the UK. Some areas have a nurse-led, community-based children’s bladder and bowel service. Where these are not available your child may be referred to a paediatrician at their local hospital, if it is felt that a specialist service is needed.  

• A specialist service will assess your child’s bladder and bowel health. It is likely this will involve asking lots of questions about their general health and usual bladder and bowel habits. You may be asked to complete some forms that include information about their drinking and toileting patterns.  
• The service should explain what they think is causing any bladder and/or bowel issues and may provide written information about this and any treatment suggestions. 
• The specialist service may make suggestions about drinking and toileting routines and other lifestyle adjustments that may help. They may also recommend other treatments. 
• The service should offer regular reviews and treatment adjustments after discussion with you and your child (depending on their age and level of understanding) until the bladder and/or bowel issue has resolved.  
• Some children may require onward referral for further investigations and treatment options. Reasons why this may be recommended should be discussed with you and your child if required.  

Further information

There is more information about children’s bladder and bowel health and problems on the Bladder & Bowel UK website.

The post Who can help me if I am concerned about my child’s bladder and/or bowel health?  appeared first on Bladder & Bowel UK.

Incontinence is a very common condition. In fact, urinary incontinence is said to affect approximately 14 million people in the UK alone, while nearly half a million people are estimated to experience some form of bowel incontinence. 

However, despite these high figures, many people who struggle with incontinence can be reluctant to talk about it. This can be for all sorts of reasons, such as embarrassment or generational differences. At the same time, family members may find it hard to broach the subject as well, either due to the nature of their relationship or a lack of knowledge about the condition. 

But talking about incontinence is an important step towards getting your loved one the help they need, and preventing them from suffering in silence.  

In this blog post, we’ll provide you with some practical tips on how to approach a family member you believe may have incontinence with sensitivity and a positive mindset. We’ll also outline the steps you can take to help your loved one manage their condition. 

Conversation tips 

While incontinence may be a tough subject to talk about, if you believe your family member is experiencing incontinence, having that difficult conversation can make a huge difference to their overall wellbeing. It can feel tricky to start the conversation so you might want to try using an article, leaflet or advert as a prompt for the initial chat. 

Acknowledging that it’s an awkward topic can make the conversation a little easier for those who don’t like talking about bathroom habits. 

Remind them that incontinence is a very common problem and that there is plenty of help available. 

Another important aspect when talking about incontinence is to mirror the language your family member uses. For instance, if they refer to it as ’pee’ instead of ’urine’, match the terminology they use.  

Using language that is too formal could also make your conversation feel too clinical if your family member doesn’t usually talk in that way.   

It can also help to start the conversation side by side rather than face to face, for example, while out on a walk or in the car. Being side by side stops the conversation feeling like an interrogation and your family member may be more comfortable opening up. 

What is needed for a positive conversation? 

Making the conversation about incontinence a positive one gets you both off to a good start. Don’t rush the conversation and make sure to talk to them when you know you won’t be interrupted. It’s important to give the conversation the time and attention it needs. 

It’s also important for your loved one to feel relaxed, in control and free from judgement during your conversation. So, try not to talk about their situation with other people without their consent. Even though it may be coming from a place of love and concern, if your loved one found out, it could make them feel embarrassed or reluctant to talk about it at all.  

It can be useful to explain to your family member that incontinence is just like any other health problem, and encourage them to talk about it with their loved ones even if they feel embarrassed.

To ensure the conversation stays positive, maintain a sense of dignity and privacy throughout and respect their decisions. Keep the conversation confidential but let them know the door is always open if they want to discuss it further. 

Next steps 

Knowing what to do next is important for both you and your family member. This way, the conversation will be seen as productive and help promote their independence. One of the most important first steps they can take is to see a healthcare professional to rule out any potential underlying health conditions. 

Let your family member know there is a lot that can be done to help with incontinence. Even something as simple as assisting them when booking an appointment with the doctor can be enough for them to regain some confidence and control over their health.  

Arming yourself with information about incontinence before you have a conversation with your family member can also help you support them in making an informed decision. By ensuring they have more knowledge of their condition, they may feel confident enough to speak with you and a healthcare professional further.  

Helping them choose the right incontinence product can also be a big help. With so many options available, your loved one may feel overwhelmed. But by sharing the job between the two of you, they will feel supported and more secure in their decision. 

Visit Bowel & Bladder UK for printable resources which you can offer to your family member. They could read them in their own time and then talk with you about it afterwards.  

With different resources, you can provide them with a range of options and methods of support. Whether it’s their GP, a continence nurse, Bowel & Bladder UK or elsewhere, with the right help, your family member can feel confident in their incontinence management.

The post How to talk to a family member about incontinence appeared first on Bladder & Bowel UK.

Incontinence is a common issue that can affect people of all ages. But incontinence doesn’t affect everyone and is not an inevitability of ageing.  

There are also varying degrees of the condition, with some people only experiencing small leaks now and then, while others can lose control of their bladder or bowel completely if unable to reach a bathroom in time. 

In this article, we discuss the signs of incontinence across all age ranges. We also provide you with practical tips on how to support family members with incontinence and some of the best preventative measures that can be used to help.  

Signs to look out for in people of all ages

A lot of people will often feel embarrassed about their incontinence, and it is common for people of all ages dealing with incontinence to hide the fact there is a problem at all. 

When this happens, your loved one won’t receive the help and support they need to manage their condition, which can worsen their condition and lead to increased feelings of anxiety and isolation.  

If you discover one of your family members is dealing with incontinence, it’s normal to feel stressed about the situation – especially if you’re going to be caring for them. It’s important your family member doesn’t feel ‘caught out’ or as though there is something to feel ashamed of.  

People with incontinence deserve the same dignity and respect as those without the condition, so knowing how to support them during such a challenging time is essential.  

Some of the key signs of incontinence – to look out for in people of all ages – can include:  

• Choosing different drinks – for example, drinking decaffeinated drinks instead 
• Stopping drinking after a certain time of day 
• Hiding incontinence products  
• Being secretive about going to the bathroom 
• A smell on their person or in their home 
• A strong scent of cleaning products in the bathroom on a regular basis 
• Personal hygiene issues 
• Staining of their underwear 
• Frequent changing or washing of clothes 
• Buying toilet rolls more often due to increased use 
• Finding tissue in their underwear or washing machine 
• Avoiding social situations 
• New changes to their diet 
• Carrying spare clothes whenever they leave the house 
• Going to the toilet more frequently 
• Needing to get to the bathroom quickly 
• Staying in the bathroom for longer than usual 
• Using sanitary pads 
• Wearing more than one pair of underwear 
• Changes in their mood 
• Finding laxatives in their home that weren’t there before 

If you spot any of these signs, it’s important to speak with your family member in a way that displays empathy, sensitivity and understanding.  

Try to have possible solutions and support in mind before having the conversation. That way, you can help give your loved one hope and ensure they feel fully supported.

Incontinence in children

Children can also experience incontinence. Although you might think it’s easier to spot, children are still good at hiding things they are embarrassed about.  

Here are some signs that a child might need help with their incontinence: 

• Finding wet or soiled underwear 
• Denying wetting or soiling themselves despite their underwear or bedding being wet or soiled 
• Needing to use the toilet more often  
• Often needing to go at the last minute  
• Withholding (standing or sitting in different positions, such as with their legs crossed, to prevent accidents) 
• Avoiding social situations, especially ones like sleepovers or school trips  
• Excessive use of sanitary products  
• Needing to leave the classroom a lot to use the bathroom 
• Trying to avoid going to school – such as claiming to be unwell or becoming angry in the mornings or Sunday evenings

It’s worth remembering that bullying and mental health problems can be linked to incontinence in children. Sometimes changes in behaviour can be misconstrued as ‘naughtiness’. However this isn’t the case; incontinence can not only cause feelings of shame in children but also cause them to behave in ways that they feel will be most helpful to manage the wetting or soiling.

What to do next

If you think a family member or someone close to you is struggling with incontinence, it’s important to talk to them about it from a place of understanding and sincerity. Try to encourage them to speak with a healthcare professional as well so that they can get the support they need.  

If they are embarrassed about the situation, you could even offer to assist them when talking to the healthcare professional. 

In our article, How to talk to a family member about incontinence, we provide further tips and information on how best to approach this difficult subject, such as finding out more information and researching different incontinence products to help them manage the incontinence while they wait for assessment and treatment.  

Doing your own research, for example, can help ease the pressure on your family member’s shoulders. By providing them with options you can help them feel less overwhelmed and ensure they are on the way to getting the right support for them.

Bladder & Bowel UK is a registered charity that has multiple resources to help loved ones support and spot signs of incontinence in both adults and children. They also have a confidential helpline where you can receive specialist continence advice. 

Finding support for both you and your loved one is important when dealing with incontinence. Whether you help them speak to a healthcare professional or find the right incontinence product, showing that you’re there for them can make a big difference. 

The post Signs a family member may need help with incontinence appeared first on Bladder & Bowel UK.

Incontinence can have a serious impact on wellbeing for the person experiencing the issue. What is less often talked about is how hard it can be to support someone suffering with incontinence. 

In fact, we know that in some serious situations, difficulties with managing incontinence can contribute to families making the tough decision to move loved ones to supported housing or care homes.  

Struggling with bladder and/or bowel control can create feelings of isolation, but it is important to know you are not alone if you, or someone you know, are affected. Silence around the issue can be a barrier to getting the help you and your loved one needs, which is why it’s important to shine a light on the issue. 

In this article, we look at the different ways incontinence can impact anyone giving support, including family members and friends, and why it is such an important issue. 

Difficulties for caregivers 

If someone we care about is struggling with incontinence, it is normal to want to help them. However, it’s realistic to acknowledge how difficult this can sometimes be.

Challenges in communication, or wanting a reluctant family member to seek medical help, can cause strain in relationships. Supporting with intimate care, including helping an individual change, use the toilet or washing wet or soiled clothing, may cause physical or emotional strain and impact the caregiver’s own well-being or mental health.

Emotional impact of incontinence

Not only can incontinence be distressing for the individual, causing embarrassment, frustration, or anxiety, practical support may be required from family members which can be difficult to accept. This can lead to a decline in self-esteem, a reluctance to engage in social activities and cause difficulties with mental health. If it is happening during the night, it can also affect sleep, which has an impact on daytime functioning and mood for both the individual and those caring for them.

Family members may experience stress and worry about their loved one’s well-being. They may also feel a sense of responsibility and frustration that impacts their own psychological and emotional wellbeing, mental health and feelings of struggling to cope. Adjusting to a new role of carer, particularly when this involves supporting with intimate care tasks, may be difficult.

Financial impact of incontinence 

Money worries can worsen stress when supporting someone struggling with their bladder and/or bowel.  

There is a financial cost to disposable continence products (pads), as well as for toileting aids, additional clothing and washing. There can also be increased expenses related to medical care, such as travel to appointments for assessment and treatment, and the cost of medications that may be recommended to help. Some people may require home modifications to make their living environment more accessible. Some family carers may have to also give up work or reduce their hours to provide required support, adding to financial strain.

Social isolation

Incontinence may impact a person’s confidence to develop new friendships or relationships, or continue existing ones. Fear of leakage, odour, embarrassment, or a lack of accessible toilets in the community may result in the person with incontinence withdrawing from social activities. It may also limit or deter participation in previously enjoyed activities that may exacerbate the incontinence, such as high impact sports, distance running, remote camping, or long country walks. All of these, together with the time it takes to provide practical support, can also impact their life partner or family members.  

Family members might be hesitant to engage in activities that could be challenging for the person with incontinence, or that they previously enjoyed together. Being unable to leave their loved one, or becoming too tired or emotionally drained to continue with their usual activities will also worsen the situation. 

Changes in daily routine

Those providing care may need to adapt their schedules and routines to accommodate an individual who is living with incontinence. This may include assisting with regular bathroom visits, including at night, helping with personal hygiene, changing of pads and being mindful of the availability of suitable toilets in public spaces. These may impact their ability to work, enjoy leisure and maintain social activities and friendships. 

There may be additional washing and cleaning as well as anxiety about controlling odour, avoiding damage to furniture and managing if car seats or wheelchairs need to be cleaned and dried.  

Communication challenges

The misconception that incontinence is always inevitable, along with taboos surrounding bladder and bowel issues, make it difficult to discuss incontinence or know how to access help. These can reinforce feelings of isolation and make it difficult for family members to offer support, search for solutions or improved management options.  

While open communication is key, discussing incontinence can be a sensitive topic that requires empathy and understanding. Challenges may be compounded when there are gender issues, such as a son talking to his mother, or a father to their teenage daughter, or where to do so would breach cultural norms. 

To address these difficulties, it is crucial for the family member to foster open communication, encourage and support those that they care for to ask healthcare professionals for support, and explore available resources. Community support can also be valuable, and connecting with others facing similar challenges can be beneficial for both the individual suffering from incontinence and their caregivers. Seeking medical advice and implementing recommended practical strategies for managing incontinence, can help mitigate the impact on both the individual and the family. Additionally, support groups and counselling may be beneficial for the emotional wellbeing of both the person with incontinence and their caregivers. 

The post Supporting someone with incontinence: Shining a light on the impact on families   appeared first on Bladder & Bowel UK.

Jane is an outgoing 58-year-old mother from Liverpool, but behind her bubbly exterior is many years of pain due to a complex history of surgery.

Following complications after a total hysterectomy and large bowl resection in 2005 Jane found herself living with the symptoms of a functional bowel disorder, including chronic constipation and faecal loading.

Constipation is a common condition, affecting around 20% of men and woman of all ages in the UK. It can cause stomach pain and make you feel bloated and nauseous.

While many people find that simple changes to their diet or lifestyle can help improve their symptoms, others, like Jane, have underlying problems which means the condition persists.

The limits of lifestyle changes

After an abdominal operation in 2016, Jane was admitted to hospital several times due to recurring faecal loading. It impacted her confidence and her mental health began to decline.

Despite following the guidelines about healthy living and strictly adhering to her oral laxative regime, she grew increasingly frustrated with healthcare professionals who kept suggesting further lifestyle changes.

It was only after her fifth hospital admission in 2018 that she was finally diagnosed with a functional bowel disorder. Though the damage couldn’t be undone, she was referred to a specialist who suggested she try transanal irrigation (TAI).

Help with managing constipation

Transanal irrigation (TAI) is a way to help manage constipation and faecal loading. It’s a simple procedure in which body temperature water is passed through a soft silicone cone or a catheter into the rectum, to assist in the safe evacuation of stool from the lower section of the bowel. 

Jane explains that there was a bit of trial and error before she was comfortable with the procedure but was glad she stuck with it because ‘within a few months my life changed completely.’

After years of feeling like her life was on hold, she was suddenly able to look forward and plan ahead.

‘It’s really changed my life.’

This article is part of the Education Spotlight on Constipation, supported by Renew Medical. You can also read more about constipation in our information library.

The post How transanal irrigation helped one woman get her life back after years of ‘tremendous pain’ appeared first on Bladder & Bowel UK.

Background

Functional bowel disorders (FBDs) are a group of medical conditions that affect the normal functioning of the gastrointestinal (GI) tract without any apparent structural or biochemical abnormalities. These disorders are common, affecting over 25% of UK adults¹. The term “functional” means that the disorder is primarily related to how the GI tract functions rather than any specific physical damage or disease.

Some common functional bowel disorders include:

• Irritable Bowel Syndrome (IBS) – IBS causes abdominal pain or discomfort, along with changes in bowel habits, such as diarrhoea (IBS-D) constipation (IBS-C) or alternating between the two (mixed IBS).
• Functional Constipation – infrequent bowel movements, difficulty passing stools, and a feeling of incomplete emptying.
• Functional Diarrhoea – frequent loose or watery stools without any identifiable cause.
• Evacuatory Dysfunction – difficulty in passing stools, often associated with excessive straining and a feeling of incomplete evacuation.
• Faecal incontinence – the accidental passage of stool from the rectum.

In clinical practice, symptom overlap is common among patients. They frequently speak of the considerable burden these conditions have on various aspects of their lives, including relationships, overall health, and ability to work. These insights led to the development of the PERSPECTIVE study.

The PERSPECTIVE study has explored the impact of the aforementioned FBDs on patient’s lifestyle, including their real-world experience of using transanal irrigation (TAI) to manage these symptoms. This study differs from previous studies as it has explored a wider range of FBDs. This article will discuss the results regarding TAI usage.

Method

A total of 4,794 individuals were invited to participate in the study from two existing cohorts of people, sourced from two existing databases:

1.  ContactME-IBS – a dedicated national registry (NHS owned) for individuals who self-identify as having any type of IBS. People sign up to receive information about research opportunities, without any obligation to participate. This provided access to over 4,000 individuals from both primary and secondary care.
2. Durham Transanal Irrigation database, which had over 200 TAI users, all seen in secondary care.

Data from 933 respondents were captured through a single online questionnaire. Among them, 183 (20%) had experience of using TAI, and 110 (60%) continue to use it.

Results

In the study, females were primarily irrigating for constipation-related symptoms (43, 44%), while males used it predominantly for diarrhoea or mixed-type symptoms (9, 82%).

Respondents often faced delays in starting TAI, with 48 (44%) reporting symptoms for 10 or more years before beginning treatment. This delay could be attributed to various factors such as the time it takes to access specialist services. There is a need to increase awareness around bowel dysfunction and the benefits of treatments to address this issue.

Respondents were asked to rate how effective TAI was for them at 3, 6, and 12 months using a scale of 0 (no benefit) to 10 (excellent). At 3 and 6 months there was a positive correlation, meaning that if TAI was effective at 3 months, it was likely to still be relieving symptoms at 6 months. In fact, the trend for effectiveness continued up to 12 months. So, TAI being effective at 3 months is a good indicator of longer-term effectiveness.

In fact, the findings suggest long -term effectiveness way beyond the 12- month period explored. The majority of respondents (58, 53%) had been irrigating for 3 or more years and 33 (30%) had been irrigating for even longer (5-10 years). Since TAI requires time and commitment, it is reasonable to conclude that patients will continue to use it if they are finding it beneficial in relieving their bowel symptoms. Hence, long -term use suggests long-term effectiveness.

TAI is an effective treatment for all types of FBDs. The 60% success rate in PERSPECTIVE is similar to that of other studies^3,4.

Interestingly, when we examined the data around those who continued irrigating and those who had stopped, we discovered that respondents with diarrhoea-related symptoms (IBS-D, functional diarrhoea, or faecal incontinence) were the highest proportion which continued using TAI (74%, 26). Among this group, a considerable percentage (77%) also reported faecal incontinence. Perhaps the burden of faecal incontinence contributes to the continued use of irrigation as a treatment option.

Implications for practice

The PERSPECTIVE results have significant implications for both patients and healthcare professionals:

• Patients with a wide range of FBDs can benefit from irrigation.
• Patients with IBS-D, diarrhoea, and faecal incontinence in particular, find irrigation beneficial.
• Reassurance for patients – that the therapeutic effects of TAI will not diminish over time, as observed with other treatments such as laxatives.
• Effective TAI can create clinical capacity – longer term efficacy means that healthcare professionals can confidently discharge patients back to GP care. Thereby freeing up valuable clinical resources and capacity, enabling more patients to be treated.
• Encourage patients to persevere with irrigation for up to 3 months, as per the follow up regime proposed by Emmanuel et al². After which time, if it’s beneficial continue, if not then stop.
• If irrigation does not give satisfactory results after the initial 3 month-period, refer back to the multidisciplinary team for further advice, aligning with the follow-up recommendations proposed by Emmanuel et al².
• These approaches streamline what is currently a convoluted journey for patients to access specialist treatment.

This post was written by Michelle Henderson, Clinical Education Manager, MacGregor Healthcare.

The post Insights from the PERSPECTIVE* Study: Using Transanal Irrigation for Functional Bowel Disorders – What are the Implications for Practice? appeared first on Bladder & Bowel UK.

Associate Isabel Harper from Clarke Willmott’s serious injury and medical negligence team specialises in helping clients who are seeking a compensation claim for bowel incontinence following childbirth, personal injury or because of medical negligence.

Isabel explains the rehabilitation process after a bladder or bowel injury and why you may wish to seek legal advice.

Who is affected by bladder and bowel problems?

Bladder and bowel problems can affect anyone at any stage of life, but sometimes they can happen unexpectedly because of an accident or following medical treatment.

At Clarke Willmott, we have found that the types of treatment that lead to these types of injuries include, general surgery, bowel cancer, spinal tumour, infection / sepsis, prostate problems, stroke, and neurological conditions. Women are also often effected by bowel and bladder injuries following childbirth.

Some people may have also been injured as a result of a road traffic accident, or an accident at work, for example.

Where can you get help if you have bladder and bowel problems?

If an injury has occurred suddenly, you may wish to prioritise treatment in addition to rehabilitation in order to manage and minimise your symptoms. It is important that you seek help from a GP or a healthcare professional. You may wish to consider asking for help from the following:

1. Clinical Colorectal or Urology Consultant: They are able to provide you with specific advice on further treatments that may be available to you.
2. Physiotherapists: There are specialist pelvic health physiotherapists who will be able to provide an assessment, treatment, and support for those who struggle with their pelvic floor. They see patients with a range of symptoms. Including those who suffer from pelvic pain, faecal incontinence, and urinary incontinence (including, urgency and frequency) etc. If you are suffering from these symptoms as a result of childbirth, there are physiotherapists who also specialise in women’s health.
3. Pelvic floor clinics: These clinics treat people who have problems with their bladder and bowel, including bowel disfunction, bowel incontinence, irritable bowel syndrome (IBS), constipation, urinary incontinence, bladder pain, urinary tract infections (UTIs) etc. They usually carry out a multi-disciplinary approach. This means that they work closely with a range of health services. For instance, they may work with specialists in the fields of gynaecology, colorectal, urology, physiotherapy, pain medicine.
4. Psychologist / Psychiatrist: Suffering from a bowel or bladder injury is traumatic. It is no surprise that you may be suffering from psychological symptoms as a result. There are a number of therapies and treatment available that can help to alleviate the symptoms that you experience. It is important that you speak to GP or other healthcare professional. This way, they can ensure you are signposted to the right services.

If you are unsure about where to turn, you could contact the Bladder & Bowel UK Helpline on 0161 214 45910. Moreover, the helpline can help to provide advice on bladder and bowel health, continence promotion and options for managing incontinence, products, as well as signposting to services. They offer general information, advice and signposting for bladder and bowel issues. For personal medical advice, we recommend that you speak to your GP.

What products can help you manage your bladder and bowel problems?

As well as the above, there are several products available to help you manage your injuries on a day-to-day basis. In addition, you may wish to consider the products available on the Countrywide Health & Mobility website who are associated with Bladder & Bowel UK, as well as ordering the Just Can’t Wait card from Bladder & Bowel UK.

Why might you need legal advice if you have a bladder & bowel problem?

If you wonder whether your bladder or bowel condition has been caused by a medical mistake, a solicitor can obtain expert reports from experienced clinicians to ascertain what might have gone wrong. If you have been injured in a road traffic accident or accident at work, then a solicitor can investigate the cause of that accident to assess if you have a claim. This is an important first step in bringing a claim as it will be necessary to show someone else has negligently caused your injury.

What will a solicitor do if you have a compensation claim?

As well as looking at how the treatment may have been negligent or how your accident could have been avoided, the Solicitor may also look at ways to minimise the effect of your injury and to minimise the discomfort caused by your bowel and bladder symptoms. They are likely to look at:

• What the impact has been on your employment.
• What your care and assistance needs are.
• If you would benefit from funding any future treatment, therapies, or rehabilitation.

If your solicitor can secure an admission of liability, you may wish to ask them to request an interim payment of damages to fund any treatment, care or rehabilitation that you may need.

Speak to an expert solicitor

Clarke Willmott have a significant amount of experience in acting for those who have suffered from a bowel or bladder injury, including those who struggle with incontinence / urgency issues, or those with stomas following negligent medical treatment. If you think you might have a compensation claim, you can speak to us by requesting a free call back.

Clarke Willmott is a national law firm with offices in Birmingham, Bristol, Cardiff, London, Manchester, Southampton and Taunton. For more information visit www.clarkewillmott.com.

Clarke Willmott is a member of our legal panel. The Bladder & Bowel UK Legal Panel is a group of clinical negligence and injury specialists with expert knowledge of bladder and bowel care.

This article was written by medical negligence solicitors, Clarke Willmott.

The post Guide to rehabilitation after a bladder or bowel injury appeared first on Bladder & Bowel UK.

• Am I the only person who has a bladder or bowel issue?
• Who can I speak to about my bladder or bowel problem?
• Do children and young people experience bladder or bowel problems?
• Are continence products the only answer?
• Where can I get reliable help or advice?

At Bladder & Bowel UK we are contacted by people of different ages and stages of life with a wide range of questions and concerns regarding bladder and bowel difficulties. While our team of specialist nurses and product co-ordinator are happy to respond to individual enquiries, we felt it might be helpful to address some of the more common questions we are asked. 

So who is affected with bladder and/or bowel problems?

Bladder and bowel problems are very common and can affect anyone at any stage of life. Many people find it difficult to discuss their symptoms with anyone, including their healthcare professional. However it is important to know that much can be done to treat, manage and improve issues and it is important not to just put up with symptoms, as help is available.

Your GP, practice nurse or other healthcare professional will be used to having conversations about issues that you might find difficult and should respond to you sensitively and with practical suggestions. They will also be able to refer you to the right specialist service, if they feel this is needed.

What about children?

Many children and young people are affected by bladder and bowel issues. These do not always just get better with time. The most frequently occurring problems are difficulties with toilet training, wetting in the day or at night, constipation and/or soiling.

Sometimes it is assumed that wetting, soiling, or rushing to the toilet is due to naughtiness, laziness or an inevitable part of a disability. However this is very rarely the case. Therefore, all children and young people with a bladder/bowel problem, including those who have additional needs, should be offered an assessment, support, and appropriate treatment as the issues often do not simply get better as children get older.

Bladder & Bowel UK Top tips

Seek professional help if you have symptoms.

We would always encourage people to seek professional advice and help about any bladder and/or bowel problems. Much can be done that may cure or improve the issues. Your healthcare professional should be able to offer an assessment or refer you to a specialist service. This will then help indicate the underlying cause and the most appropriate treatment or management options.

Is it to do with my age?

Bladder problems can affect children, young people, men and women of any age. It is not an inevitable part of being young, getting older or having a disability or medical condition. Therefore, please do not put up with bladder and bowel incontinence or difficulties emptying your bladder or bowel.

How do I access help?

You could talk to your GP or other healthcare practitioner, eg. practice nurse, district nurse. For children you could also contact their school nurse or health visitor. If necessary they will refer you onto the right service to offer the right support.

There are specialist bladder and bowel services for adults in most places in the UK and many areas also have specialist services for children. You may need to be referred by your healthcare professional, although some may accept self-referrals.

Alternatively, complete the Bladder & Bowel UK webform (https://www.bbuk.org.uk/enquiries/) and we may be able to offer some initial advice and will help you get in touch with a professional, who will understand and be able to offer assessment and management.

What help can these services offer me?

Bladder and bowel services offer specialist advice, assessment, treatment, management and support to adults or children and young people experiencing bladder and bowel problems. 

Examples of the types of problems that bladder and bowel services may help with include  

• Urinary incontinence (leaking urine) or difficulty emptying the bladder.
• Waking up more than a couple of times in the night to pass urine or wetting the bed during sleep.
• Needing to go to the toilet more frequently or urgently than is usual.
• Pelvic floor disorders.
• Prostate problems.
• Toilet training issues.
• Constipation.
• Faecal incontinence (soiling) or difficulty controlling bowel movements.
• Difficulty emptying or fully emptying the bowel.
• Difficulty getting to the toilet due to disability or another health condition.

Where will I be seen?

Bladder and bowel services usually offer clinic appointments across their NHS areas. Home visits may be arranged for people who are housebound. Your doctor or health care professional will be able to put you in contact with your local service. You can also contact Bladder & Bowel UK for information about how to access your local service.  

What will happen when I am seen?

You will be offered an assessment, to help your professional understand the bladder and/or bowel problem. You may be asked to fill in bladder and or bowel diaries before the assessment, as they will help to identify what is happening. In some cases further tests may be required. The outcome of the assessment will explained to you and the healthcare professional will then discuss the options for treatment or management with you. 

What options are there if I am not able to be fully continent?

Many continence problems are treatable, or can at least be improved. However, it is not always possible to fully treat or cure incontinence. Therefore, it may be that following a full assessment from a specialist healthcare professional, it is agreed that alternative solutions for managing incontinence are the best option in the circumstances. 

A wide range of products, devices and appliances is available. No single one will suit everyone’s needs and it is not uncommon for people to use a combination of products eg. containment pads along with aids to assist with toileting. 

Examples of the types of products available include:

• Bedding and chair protection.
• Bowel irrigation devices.
• Bowel/faecal leakage management devices.
• Catheters, which may be used with drainage bags.
• Urinary sheaths and body worn appliances for boys and men.
• Pelvic floor equipment.
• Swimwear.
• Toilets and Commodes.
• Urinals (male and female).
• Disposable and washable pads and pants.

It is important to remember that there are a number of options that may help cure or at least improve bladder and bowel symptoms. Therefore Bladder & Bowel UK would always recommend discussing any issues with your healthcare professional (GP, practice nurse, or health visitor or school nurse for children).   

Bladder & Bowel UK may be able to provide initial help, advice, support and information as well as signposting to services and other organisations.

We can be contacted via our web form at https://www.bbuk.org.uk/enquiries/

Find more Bladder & Bowel UK resources here: Information library for adults – Bladder & Bowel UK (bbuk.org.uk)

The post Common Questions and Concerns regarding Bladder and Bowel Health Issues appeared first on Bladder & Bowel UK.