- Clothing
- Bathing and swimming
- Sleeping
- Nutrition and hydration
- Activities
- Travel and transportation
- Others
- Cover the collection bag with clothing or the diaper. To stabilize the bag and reduce leaks, consider one piece outfits for young children.
- Clothing should not be constrictive (too tight) as this will prevent the collection bag from filling correctly or may irritate the stoma (eg, trouser belt).
- If your child tends to touch the stoma appliance, there are a variety of specialized accessories that may be of help; discuss this with your enterostomal therapy nurse or your healthcare team.
- Your child may take a bath or shower with or without the stoma appliance.
- All of the stoma materials are waterproof. If your child bathes with the appliance in place, gently dry it with a towel or a hairdryer set to low or medium temperature.
- The skin on the inside of the stoma is fragile; it may bleed slightly when touched.
- Wash the skin around the stoma gently with warm water.
- Do not use soap or oil-based products; they may leave a residue on the skin that prevents the skin barrier from sticking well around the stoma.
- Do not use scented or chemically based products on the stoma; these can irritate or damage the skin.
- Do not use baby wipes, baby oil, powders, ointments or lotions on the skin around the stoma.
- If you still wish to use a cleanser other than warm water, select a mild, unscented soap (eg, “Dove”) or a gentle hypoallergenic cleanser (eg, “Spectro®” or “Cetaphil®”).
- Rinse and dry the skin around the stoma before applying the skin barrier.
- Your child may go swimming, with the collection bag on. Thoroughly dry after swimming, as indicated above.
- Your child may sleep in any position; a healthy stoma is not painful.
- Empty the collection bag before nap or bedtime; this way, there is less risk of leaks.
- If your child is less than one year of age, put your child to sleep on their back.
- Some children with a stoma have another medical condition which may limit their choices of food (eg, Inflammatory bowel disease). Check with your child’s healthcare team to see which types of food are allowed.
- When introducing new foods, try one at a time so you can determine your child’s response.
- Some foods can cause odors and excess gas (eg, raw cauliflower). Offer these to your child less often.
- If your child has an ileostomy, smaller, more frequent meals are recommended (eg, 5-6 small meals per day).
- When a child has a stoma, there may be a variation in the amount of water that is excreted with the stool. You will learn to recognize your child’s usual pattern.
- Your child should drink frequently, especially if your child has an ileostomy. Increase water intake when your child has a fever, increased activity or when it is hot outdoors.
- Know the signs of dehydration in children:
- less frequent urination (wet diapers) /more concentrated (dark yellow) urine
- dry lips and mouth
- sunken eyes
- headache, feeling faint, dizzy or tired
- faster heart rate.
- Your child’s activities should not be limited by the stoma.
- For safety reasons, consult your healthcare team before your child starts a new activity or sport.
- It is possible to make a custom protection for your child’s stoma so that your child can participate in contact sports.
- By car, make sure that the seatbelt does not compress the stoma or the collection sac. If needed, place a rolled towel between the waist and abdomen of your child to protect the stoma site.
- By air, empty the collection sac more often. With changes in elevation and air pressure, air may expand and fill the collection bag more quickly. Keep extra stoma supplies with you on board the airplane in your carry-on luggage.
- When travelling, plan to bring plenty of spare supplies, including a change of clothing and plastic zip lock bags for soiled items.
- Check if your usual source of supplies has a distribution site in the region that you are travelling; this may be helpful if you need to purchase extra supplies in the case of an emergency.
Infants (0-1 years)
- During the first year of life, most babies grow a lot. The stoma may change size more often and you will likely have to try different types of collection systems to find the one that suits your child best.
- At this age, babies are curious about their bodies and their environment. Occupy their hands with an interesting toy while handling the collection bag.
Toddlers (1-3 years)
- These children are curious, quick and like to move. They may not wish to stay still while you are trying to provide care. Prepare all of your materials in advance and have the supplies ready nearby. This will allow you to provide the care more quickly.
- It is at this age that it can be most helpful to have the help of another person when you are providing care.
- Explain the care simply to your child and explore ways to encourage participation in the care.
Preschool (3-5 years)
- These children are curious and interesting in being more independent. They can participate in simple tasks like washing the skin or removing the skin barrier.
- Use short, simple explanations and instructions; these are best suited to their short attention spans.
School-age (6-12 years)
- At this age, your child may wish to do more of the care. Encourage and support your child while they are learning how to provide their own care (eg, emptying the collection bag).
- You will still want to keep an eye on the stoma site and to verify, at least once a week, that the site is in good condition.
Adolescents (13-17 years)
- During this period of increased growth and activity, your teenager may need more hydration; encourage your child to drink plenty of fluids, especially during sports activities and when the weather is hot.
- Adolescents are often sensitive about their appearance and shy, especially when there is something that is different about them. Respect your child’s wish for privacy as much as possible.
- Do not hesitate to talk to your teen about relationships and intimacy; a mentor who has also lived with a stoma may be an important support.
- Make sure your teen knows how to troubleshoot the common problems that may arise.
- Encourage your teen to join a support group. There are lots of “YouTube” stories of adolescents and young adults with ostomies demonstrating how they do every day and unusual activities.