Top tips for caring for a child with an ostomy
Living with an ostomy can be frightening for children, tweens, and teens. Here's how to care for a child with an ostomy.
It’s said that it takes a village to raise a child. This is especially true when raising a child with an ostomy. The good news is that there is a village waiting to assist you!
Why do some children need an ostomy?
Certain medical conditions can result in your child’s doctor recommending an ostomy. A few reasons may include:
- Babies with birth defects of the mouth, oesophagus, or stomach (for example, oesophageal atresia or tracheal oesophageal fistula)
- Children who cannot swallow correctly
- Children who cannot take enough food by mouth to stay healthy
- Children who often breathe in food when eating
- Certain digestive or urine disorders
- Certain childhood cancers
Natalie Mascall, the founder of VERA SA ostomy underwear, provides the following tips that may assist parents of children with ostomates.
- Ensure you receive information on scheduling follow-up visits, medications, and any additional care your child may require, such as incision care.
- Keep a journal of any questions you may have about your child’s ostomy so the next time you meet with your child’s paediatrician, you can ask the questions you need answers to.
- Inform your doctor or paediatric nurse if you change your child’s pouch more than once daily due to leakage.
- Your child’s ostomy supplies should be kept in a cold, dry place. Don’t leave them in areas where they will be subjected to wide temperature variations, such as the sun, your car, or excessive heat or cold.
- Look out for ostomy underwear designed with a hidden pouch to keep your child’s appliance in place. A great place to find ostomy underwear is VERA SA – partners of CANSA and The South African Society of Ostomates.
- Carry damp paper towels in a zip lock bag when travelling for a simple clean-up away from home. Alcohol-based wet wipes should not be used on your child’s skin since they may cause irritation.
- Inquire with a healthcare expert or nurse about any dietary changes that are necessary for your child. Make a list of foods that your child should limit or avoid.
- Reach out to stoma support groups. CANSA is an excellent support platform. CANSA Care Centres provide specialised care that addresses difficulties associated with colostomies, urostomies or ileostomies. CANSA’s Stoma Clinics and carefully trained nursing personnel provide pre-and post-operative counselling, as well as support groups. Patients and families are counselled and equipped with coping methods to manage the day-to-day challenges of living with a stoma. CANSA also sells reasonably priced stoma products. The public can receive stoma-specific telecounselling. Appointments can be made by calling 0800 22 66 22 or sending an email to counselling@cansa.org.za.
More tips from readers of children with ostomies
“It’s important to get the right type of baseplate for your stoma type. There are flat, lightly convex, deeply convex and more flexible baseplates. Whether it is a one-piece system or a two-piece system, the right baseplates can be life-changing for your child or anyone you know with a stoma. Getting the right type of baseplate can mean a longer ostomy appliance wear time as it can and will prevent unnecessary leaks that can end up in many, exhausting ostomy appliances changes in one day, or sooner than you should.” – Jessie
“The process of changing your child’s stoma appliance can be daunting sometimes, especially if you have to do it more often than normal. I know some parents who swear by wet paper towels with soap to clean the peristomal skin. However, in an emergency situation where you are in public, and your child gets a bag leak or tear, you might not have the water you need to wet the cloths or kitchen paper towel with water to clean the parastomal area. I find that using a non-alcohol, flushable baby wipe does the job effortlessly.” – Innocent
