Caring for a child with a stoma
Finding out that your child needs ostomy surgery can be an extremely traumatic time for a family.
It will be difficult to watch your child undergo the surgical procedures, even though you recognise that this may be the only option for your child to survive. It will also be a huge learning curve for you and your family as you will have to learn new skills to treat your child’s medical condition whilst at the same time juggling your own busy lifestyle.
It is important to remember though that help is at hand. Besides your child’s doctors, you can consult with Stoma Care Nurses (also known as Enterostomal Therapy (ET) nurses or Wound, Ostomy & Continence (WOC) nurses) who are trained to deal with all aspects of ostomy care. The following guidance will also hopefully be of some help to you in understanding your child’s condition and the issues you may face in the near future.
Selecting your child’s appliances
Before leaving hospital with your child, your Stoma Care Nurse will be able to answer any queries that you may have. Be sure to ask them any questions that might be concerning you and also ensure that you are prepared for the pouch changing regime. You should have the opportunity to help the nurse out with pouch changes to build your own confidence. Also ask for information about follow-up visits and medication if the subject hasn’t been raised. It is worth noting that certain medications may affect stomal output and its consistency. This is common but you might want to consult your medical team if it is something you are worried about.
A quick checklist for what you should be looking for in a pouch is:
- A good, secure fit
- Adheres well to the skin
- Quiet (no ‘rustling’ under the clothing)
- Discreet – shape and colour
- Is easy to empty
- Won’t cause any damage to the skin
Your skin is the base, on which all of your stoma products will be placed, so it is vital that it is kept in good condition. The skin around your stoma should be the same colour and condition as the skin on the rest of your body. If you have any queries regarding your child’s skin please consult our ‘Skin Care’ booklet.
Although your child will not need to dress any differently, it is advisable to avoid clothes with a stiff waistband that will rub against the stoma or prevent the pouch from filling. But if it is too loose the waistband could slip down and catch in the appliance causing it to loosen. Many parents find it helpful to use one-piece outfits or vests that button underneath to help keep curious hands from pulling off the stoma pouches.
Swimming will not be restricted by having a stoma. A pouch should be worn as normal underneath your child’s swimming costume. An ostomy belt can be worn to make the pouching system feel more secure if necessary.
Travelling does not need to be restricted because of your child’s stoma. It may just take a little more preparation before travel. It is important to remember never to delay changing a leaking appliance for any reason. Within just a short while the skin can become sore and irritated. Take plenty of ostomy supplies with you (around double what you would normally use - just in case!). Keep enough supplies in your hand luggage to last you for a week or so.Obtain a list of medical professionals and ostomy associations local to your destination just to be on the safe side. Check your travel insurance policy to make sure you are covered.
Unless your doctor or Stoma Care Nurse recommends a special formula or dietary guidelines, your child will most likely be able to eat a balanced diet. Your doctor may recommend introducing new foods slowly just in case it causes a problem. Some foods will change output colour and consistency slightly but this is generally nothing to worry about. It is important for your child to eat regularly, to chew foods thoroughly and to drink plenty of fluids. Some foods such as green vegetables, baked beans, onions, spicy foods and fizzy drinks will produce more gas/wind so it may be best to cut down on your child’s intake of these common offenders. The ‘Diet’ booklet in this series will offer more guidance on this subject.
Craing for a child with a stoma