How do we adapt to life after ostomy surgery?
Besides learning to understand your child's medical condition (if any), you also need to figure out how to take ongoing care of your little one. Your child's ostomy will need daily special care, and this may seem challenging at first - but don't worry, it will soon become part of your daily routine, and there is a lot of support available. You can always consult your child's doctor or Ostomy Care nurse, should you have any problems or questions. Organisations are also in place to provide information and support for you and your child. Ask your child's Ostomy Care nurse or Paediatric nurse for information about local groups and chapters.
Below we have gathered a few guidelines, which may be helpful:
Before discharge from the hospital, make sure you understand any medications that your child needs to take. Only give your child the medication prescribed by your doctor, including vitamins. It is a good idea to always carry the list of prescribed medication with you when visiting your doctor or hospital. If you notice pills in your child's stool or pouch, notify your child's doctor or pharmacist.
Let your pharmacist know that your child has an ostomy – and be sure you tell them the specific type of ostomy - colostomy, ileostomy or urostomy. Your child's medicine may need to be in a liquid or chewable form so it can be absorbed.
As a parent, you know that children are on the go most of the time. Many parents wonder if activities will be limited when their child has an ostomy – and fortunately, their ostomy will not prevent them from moving around. Your child should be able to participate in all activities as long as the ostomy is protected from injury. Follow your doctor's recommendations for your child.
If your child is ready to sit on the toilet, you can teach your child to empty the pouch into the toilet when preparing for toilet training. A potty seat will help so they are comfortable. Phrases such as ‘potty time’ can be used when it is time to empty or change the pouch.
Bathing will not hurt the ostomy. Therefore, your child can bathe with the pouch on or off – but don’t be surprised if the ostomy functions when in the tub. Choose a soap that is oil-and residue-free. Soaps containing moisturisers, oils and deodorants – as well as some brands of baby wipes containing lanolin – will leave a film on the skin that interferes with pouch adherence.
Your child won’t need special clothes because of their ostomy. Pouches are made from lightweight material for a better fit and have a discreet design to make sure they cannot be seen under clothing.
When you select clothing for your child, it can be a good idea to avoid clothes where the waistband rubs against the stoma or is so tight that it prevents the pouch from filling. Therefore, one-piece outfits generally work better. Some two-piece outfits could slide down and pull the pouch off. However, a two-piece outfit can make it easier to empty the pouch.
When your little one becomes more active, their increased activity may put some additional strain on the pouch seal. To hold the pouch more securely near the body and discourage your child’s curious fingers, you can use one-piece t-shirts that snap in the crotch. If your child is a toddler, it is a good idea to tuck the pouch into the undergarments to keep it in place.
A good tip: Empty the pouch when it is one-third full, as an emptier pouch is less noticeable.
Tips & tricks
- Infant: Babies are very active and curious. Your child’s ostomy will not slow them down. As your baby’s curiosity and activity increases, he/ she may pull off the pouch or get it caught under a knee when crawling - – this may put additional strain on the pouch seal, so beware.
- Pre-school: Toddlers are very curious and enjoy exploring their body. They may also enjoy pulling off their pouch.