Back to School with an ostomy

They say that your school years can be the best or worst years of your life, and going through school with a stoma can sometimes make things a little harder. But the right support for both you and your child can make a big difference. The main thing is try not to worry too much. The journey through school may not be the easiest, but you will get through it. The journey doesn’t stop at 18 though. Heading off to university is one of the biggest moments; both for the young person going and for the parents left at home.

Starting school or moving from elementary to middle or middle to high school are always difficult times for both children and their parents, and this can be especially difficult if your child has a stoma. Preparation and discussion with the school is key, as well as talking to other parents who have been through similar experiences. It is worth having an early conversation with the school SENCO (the special educational needs coordinator) to discuss what help your child will need.

The SENCO and your child’s stoma care nurse (WOCN) can help you draw up a care plan. Some parents have found it helpful to do a step-by-step photographic record of how to do a bag change. Your child’s WOCN may also be able to come into school to talk to your child’s teachers and teach them, or the teaching assistants, how to empty and change your child’s stoma bag. If your child is old enough then try to encourage them to start to learn to empty it themselves, as this can give them some much needed independence. This will also help them when they make the transition to secondary school where they will be expected to be more self-sufficient with their medical care.

If your child needs to have stoma surgery while in education then talk to the school about arranging for work to be sent home while your child is recovering. The school can also arrange for your child to have a phased return back into the normal school day, in a similar way to adults having a phased return to work. Some children and young people do decide to tell a close friend at school about their stoma, but it is their choice and many don’t tell anyone. It is important to remember that once you have told someone then it can’t be taken back, and while children at primary school can be very accepting of differences, that can change when they move to secondary school.

Trio Silex® soft silicone flange extenders can give your child some extra security at school. They are designed to ensure that the edges of your base plate do not lift, but instead are kept securely in place, giving you longer wear time and greater comfort and peace of mind.

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Going off to university is a major event in anyone’s life and going to university after stoma surgery, or even having stoma surgery while at university, can be difficult. If you have been ill during your school years you may have had to repeat a year, or maybe not have done as much voluntary work or extra-curricular activities as your peers. These might seem like they will have a negative impact on your application, but it doesn’t need to be that way. Your personal statement is your chance to show how you have overcome the odds. It is a way to illustrate the strength of character that is ordinarily difficult to demonstrate. Highlight how you’ve managed to keep up attendance, sit your exams on time, or keep up with extra-curricular activities despite hospital admissions. Remember that you’ve been through something that lots of people would, and do, find extremely difficult to come to terms with and yet you are still pursuing your goals of going to university. It is also important to highlight that following the surgery, life is likely to become a little more routine and less unpredictable than compared to when you had been unwell.

You might want to contact the university in advance to discuss any additional concerns that you might have. You should talk to your medical team too about your plans to go to university as they may be able to recommend the most appropriate hospital for you to be transferred to.

You’ll need to make sure that you make contact with a doctor or stoma nurse (some universities have dedicate medical services) ahead of starting your course so that don’t end up running out of medication or stoma supplies.

You may have to sit in lectures for a period of time and the last thing you need when you are learning about something new is being distracted by your stoma (even though there may be more appealing distractions around you). If you are prone to leaks, you may want to consider Trio Siltac® or Trio Silvex® silicone seals to reduce them. These seals do not dissolve and so you can secure the gaps that can be created by sitting in various positions for long periods of time.