Having an ostomy should not limit most of your child's activities. Your child can still take part in family time and activities—such as sports and exercise, going to school, swimming and travelling—with proper planning and ostomy care.
Family time
You can still safely cuddle your child, bond with them and include them in family time. You are also encouraged to visit often and participate in your child's care, including ostomy care. This will help prepare you for discharge from the hospital.
Involving siblings in your child's ostomy care
If you have older children, you can include them in ostomy care by giving them tasks like distracting their sibling during the pouch change, getting supplies ready for you or holding and handing the supplies to you.
Activities
Children with stomas have very few restrictions on their activities, and the stoma will not prevent them from normal movement. The rate and timing of physical and development growth can vary from child to child—even when they do not have a stoma. Your child can safely:
- Be hugged and held closely chest-to-chest.
- Be buckled into a car seat or stroller. Avoid placing the belt directly over the stoma.
- Crawl or lie on their stomach. If you know that they will be on their belly, the pouch should be emptied to prevent leaks from pressure on the pouch.
- Play sports and exercise! All exercises and sports are generally allowed, including contact sports, but ask your surgeon first if your child is allowed to participate in a specific activity.
- It will be important that they hydrate with water or a low-calorie sport drink before, during and after the activity. Remind them that if they ever feel lightheaded or dizzy during the activity, they need to stop immediately to rest, drink fluids and then join back in the exercise or game when they feel better.
- You might want to get a wrap, stoma guard or a support belt to keep their pouch in place and protect the stoma. If you are worried about the spout opening and leaking, you may want to switch to a closed-pouch system.
Getting your child involved with their ostomy care
Early self-care can promote independence and confidence about their ostomy.
- If your child is preschool age, you may want to give them simple "jobs" that they can help you with, such as helping you get supplies ready or removing the skin barrier from their tummy.
- As dexterity and maturity increases, school-aged children may want to be in more control of their ostomy care rather than an "assistant". Repetition will help them learn the steps of care.
School
Having an ostomy should not limit your child's ability to go to school, but there will be things you will have to think about that you might not have thought about before:
- Helping your child know where the washrooms are
- Packing extra supplies in their backpack or to keep in their locker, such as extra pouches, skin barriers, cleansing wipes and a small pair of scissors.
- Packing extra clothes with them in case the pouch leaks. Children with ostomies might prefer clothing that covers their abdomen or that are not too tight, but, for the most part, they can wear any type of clothing that they are comfortable in.
- Helping them decide if they want to tell their friends or teachers about their ostomy.
Hygiene and bathing
- Bathing can be done either with or without the pouch system in place. It is recommended that your child wears a pouch when taking a bath.
- Water, soap or shampoo cannot harm the stoma. Just make sure the skin is well rinsed.
- Use unscented soaps.
- After bathing, thoroughly dry the wet pouch and skin barrier with a towel or with a hair dryer set on a cool setting to prevent moisture from being trapped against the skin.
- If bathing without a pouch, the bath can be timed with planned or unplanned pouch changes. When the whole system is off, cleanse the peri-stomal skin gently using water, soap and a soft cloth.
Swimming
- The pouch should always be worn while swimming. You can consider using a closed pouch to reduce the chances of the pouch opening during swimming. You may want to tape the edges of the flange with barrier strips or waterproof tape while swimming to provide extra security. You may also wish to purchase a waterproof seal ring to protect the flange.
- Any waterproof tape should be removed after swimming as it can irritate your child's skin. Immediately after swimming, also dry your child's flange and pouch.
- Printed bathing suits as opposed to solid colours can help to camouflage the outline of the appliance. Tight briefs/underwear under boxer swimsuits can also help to secure the pouch.
- You also want to empty the bag before swimming. Another option is to change to a closed-pouch system if you are concerned that the spout will open and leak.
Travelling
- Do not put supplies in the trunk of a car in the summer or when visiting warm travel destinations. Heat can interfere with the adhesive.
- When travelling on a plane with your child, be sure to pack supplies in your carry-on luggage.
- Always carry an emergency kit. The kit should contain a zip lock bag, pouching system and individually packaged pre-moistened paper towel or reusable soft cloth to serve as a washcloth. In an emergency, the contents of the pouch can be emptied into a zip lock bag.
- Do not use baby wipes or towelettes that contain lanolin or other oils as these interfere with the adhesive and may irritate your child's skin. Avoid using alcohol to clean the peri-stomal skin as well as this will dry and irritate the stoma and/or skin.
- Take more ostomy supplies than what you normally require.
- Check to see if there is an ostomy supply store that you can access at your travel destination.
Cultural and spiritual considerations
Fasting
You may want your child to, or your child may want to, participate in fasting during the season of Lent, the holy month of Ramadan or as part of your religious practice. People with ostomies can fast if there is no medical reason preventing them from doing so, but fasting can lead to dehydration, nausea and constipation.
When fasting during the summer months, there is a higher risk of getting dehydrated. You may want to shorten the amount of time your child is fasting during the long summer days, and they can make up the time during shorter days in winter months. When they break their fast, start off with small bites of food. Overeating may cause diarrhea that can last for 24 to 48 hours.
If you or your child feel(s) that they cannot fast due to personal choices or medical advice, it is OK! There are other ways that they could participate in worship, such as almsgiving to charitable donations or volunteering their time to an organization or cause what they want to support instead of the religious practices that they were not able to join.
Praying
For some people who identify as Muslim and practise Islamic faith, the thought of having an ostomy can prevent them from participating in acts of prayer and worship. Muslims with stomas often avoid or reduce participation in prayers due to perceived inferior hygiene, not being in a state of ritual purity through physical ablution and fear of leakage.
The consensus of Islamic scholars is that a person with an ostomy can pray normally, attend mosque and perform the Hajj pilgrimage. It is not prohibited for a person with an ostomy to enter a mosque or participate in prayer. Your child is encouraged to perform Wudhu (ablution before prayer) before each prayer. This can mean emptying their ostomy bag or stool or gas before engaging in prayer and taking steps to ensure that their ostomy bag does not leak, dirty the mosque or have any excess odours that might disrupt fellow worshippers. If your child's stoma has output during prayer, they can continue praying as they have no control over when output is released from their stoma. At the onset of a new prayer, they can perform ablution again. This Fatwa was released by The International Ostomy Association alongside its regional associations.