Privacy

Physically, ostomates can struggle with the practicalities of having a stoma and it’s important they feel well supported at school. Most often, young ostomates tell me they find it hard to explain to a teacher that they need to leave a lesson to change their bag or cope with a leak.  It can feel exposing to ask and sometimes teachers can unintentionally put ostomates “on the spot” by asking questions. It’s also important to consider that ostomates will need space to change their bag, a sink and the privacy to change their clothes if needed i.e. because of a leakage.

I also hear about ostomates being uncomfortable in lessons like P.E., where a change of clothes in front of classmates is often the usual setup. This can also include lessons like swimming, where the stoma becomes a very visible difference for young ostomates.

Absence

In addition to this, having a stoma often involves regular medical appointments which are almost always going to be in school time. Absences from lessons can interrupt learning and can be noticed and asked about by classmates.

Stigma

Emotionally, there are a few main challenges that ostomates often discuss with me too. There is a bit of a stigma in our society around all things related to our bowels, and this can lead ostomates to feel embarrassed about what other people would say if they knew about their stoma.

Bag Issues

They often worry about the possibility of leaking, noises or odour from the stoma and concern over classmates commenting or asking questions can make ostomates feel vulnerable. This in turn can encourage ostomates to isolate themselves or withdraw from school or social interactions. Some also fear they will be bullied because of having a stoma.

Self-Esteem

At times, ostomates also tell me that having a stoma affects their self-esteem. Sometimes they can experience altered body image and feel less comfortable in their appearance than they did without the stoma. This can feel particularly upsetting for young ostomates and can take time and support to adapt well to.

Strategies

Talk openly 

 In the first instance, I would suggest having an open conversation with the young person to see how they’re feeling about the return to school – something that lots of parents naturally do.

Asking about how they want to approach the stoma in school, whether they want to share or keep it private, checking for any worries or concerns about the return to school or classmates are all good things to ask.

Checking that the young person feels ready to return is important; they might feel quite fatigued and find it tricky to concentrate in the first instance.

Involve the school

Identifying the key people who will be supporting the ostomate in school and developing those relationships are crucial in best supporting them throughout their return.

First, the young person’s class or form tutor should be made aware as they will spend the most time regularly with the ostomate and can be a good support for them.

In addition, any medically trained staff in school, such as a school nurse, can be helpful in supporting any specific practical needs the young person might have. I have heard of school nurses helping with a range of things, from helping cope with leakages, to supporting if something worrying happens, for example a stoma prolapse.

Finally, a school Special Educational Needs Co-Ordinator (or SENCO) can be an invaluable addition to your ostomate’s school team. They often have knowledge about how the ostomate’s school can best support practical aspects, as well as often being a supportive pastoral person for the young person and their family as well.

An ostomate’s stoma nurse can also provide education and practical training in school.

Research available support

Levels of support can vary depending on the school’s capacity, available staff and what year the ostomate is in and what challenges they are facing that year.

However, there are also laws which give ostomates the right to extra support to help them to learn. The Equality Act 2010 applies in England, Scotland or Wales, whilst in Northern Island the laws are under Disability Discrimination Order 2006.

These laws state that organisations, including schools, have a legal responsibility to make reasonable adjustments if a young person would be disadvantaged because of the presence of a disability or medical condition.

Ostomates are considered to be eligible for reasonable adjustments under this legislation. In addition, ostomates meet the criteria for SEND (special educational needs or disabilities) and as such schools must do their best to ensure they get the support they need. This is set out in the Department of Education’s document “Special Educational Needs and Disability code of practice.

Create a plan

At the most basic level, a plan detailing how the young person can manage their stoma in school is a good place to start.

Often called a “health care plan” or “individual health plan”, this usually involves the young person, their families and a staff member familiar with the young person to ensure everyone is well supported.

It should consider the young person’s needs, how these can be met at school and who in school can help the young person and can evolve as the young person grows.

The Department of Education recommends that the school have a set process in place to share the adjustments agreed with all staff members so they are all aware. Young people can do this themselves if they prefer, by using a summary card outlining their needs and conditions.

Often included in this plan is consideration of all practical aspects that can make an ostomate’s school experience easier, including:

• A toilet pass
• An appropriate toilet to go to (one that’s big enough with an in-built sink and room to spread out stoma change supplies, is essential).
• A change of clothes (to be kept in school in case of any big leaks), and information on where this is and who to go to for it.
• Where the ostomate can change in privacy for their P.E. lesson.
• Who will help support with any medical needs.
• A staff member who is educated about the ostomate’s specific type of stoma and what to do in unusual or unplanned situations.

Seek emotional support

Having emotional support in school can be just as important, if not more important, than the practical aspects. Schools can often provide some pastoral support, in the form of a trusted member of staff, so that young people have access to emotional support in the school environment.

Alternatively, access to a counselor or specialist mental health support can be useful for ostomates and schools are well placed to arrange or support access to these services. Many of the available services will offer support that can in-reach to school, allowing for all services to work well together for the young person.

Find out about learning support

There is often extra support that a school can provide for tests and exams, if the young person needs it. This can include taking the test in a small room, with rest or toilet breaks if this will make the young person more comfortable.

If an ostomate could be considerably disadvantaged by their stoma, for example, by anxiety causing increased stoma activity and disruption, then the school can consider whether granting the young person extra time would be a reasonable adjustment.

This can be added to an ostomate’s health care plan or discussed at the start of important exam years with a SENCO or teacher who knows the ostomate well.

Speak to trusted friends and family

Ostomates may experience things that they are uncomfortable with, so it’s important that they become confident with coping with difficult situations. The most important bit of advice I would give to a young ostomate is to tell an adult they trust about their worries so they can help, for example Mum or Dad. It is difficult for anyone to help them if they don’t know what their worries are. But, once they tell someone, they can help think about what to do about them.

Sometimes this will involve helping to make a plan to tackle those worries, or talking to teachers to help them understand and best support the young person. There are a lot of worries that can be easily solved.

Parents can help by talking in a relaxed, confident, matter of fact way that will show them that their stoma is not something to be ashamed of. If the young person experiences this with their parents, they will feel more confident when dealing with any comments or questions from others.

Tools

I always talk with ostomates about the importance of knowing that they don’t have to explain themselves if they don’t want to, and not everyone wants to share that they have a stoma with their classmates.

Feeling you have control over your own personal information is important to maintaining good psychological well-being.

If the young person does want to share their experience with their friends, however, it can be difficult for them to know what to say, or how to say it, in a way that they are comfortable with.

It can also be difficult to trust that sharing their experience with a friend means that it will stay private between them and their friend.

It is good to have a few pre-prepared sentences the young person can practice to use in certain situations. For example, if a teacher asks them why they need to leave the classroom it can be important to explain in a way that does not make the young person feel exposed:

“I have a condition and I need to go to the toilet now please”.

It is also good to have a sentence prepared for directing them to another adult who knows more about the ostomate and having one prepared for if a peer is making the ostomate feel uncomfortable.

Techniques

If another young person asks a question or makes a comment about the young person, the Explain, Reassure, Distract technique is one useful way of thinking about how to respond to other people.

This involves having a few prepared sentences to use to Explain their condition, Reassure their classmate or alternatively Distract from the situation completely.

The Explain, Reassure, Distract Technique is an easy way to manage questions and comments in three simple steps:

Explain “I got sick and my tummy didn’t work properly. I had an operation so to fix it and have a bag. I’m better now.”

Reassure “The stoma doesn’t hurt.”

Distract “Let’s play football now!” or “I like your pen, where’s it from?”

The ostomate might not like talking about their stoma and there will be times when they don’t want to talk about it at all. Distract statements can be helpful to move a conversation along. These can take the spotlight off them, reducing any embarrassment they might feel.

These statements can also be useful for developing your child’s friendship and conversational skills. Other people like to be asked about themselves, so a Distract statement is a great way for your child to show an interest in someone else.

Using this technique can empower the ostomate, giving them control over the information they share about their stoma. It also builds their confidence for the moments they have to deal with comments and questions.

 Additional Resources

A good initial resource for schools is the ostomate’s named nurse. They are often a Specialist Stoma Nurse Specialist and they are especially good at teaching and training schools in understanding and managing stomas. Usually they know the ostomates well and can offer tailored advice and problem solve any specific concerns they have alongside the school staff.

Other resources include informative websites Bowel and Bladder UK and ERIC charity website.