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Caring for a Child with a Stoma Even though it’s often a lifesaving procedure, it’s still difficult to watch your little one undergo stoma surgery. The hardest part for many parents is feeling fearful or anxious about their child’s needs after surgery.

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We’re here to help. With the right support—and a little patience and practice—you’ll soon feel comfortable caring for your child’s colostomy, ileostomy or urostomy needs. And we encourage you to ask your paediatric specialist or child’s stoma nurse any specific medical questions or concerns.

Common Questions About Your Child's Stoma

This information was developed with the assistance of Sandy Quigley, CWOCN, CPNP, a pediatric nurse practitioner and clinical specialist in wound, ostomy and continence care at Boston’s Children Hospital.

Unless your child’s physician says otherwise due to specific medical concerns, absolutely! Your child can be held, hugged, and may even play with friends and family, just as he or she did prior to surgery. The only restrictions may be contact sports with potential injury¹, such as football or wrestling, as the impact from these activities may damage the stoma. Your healthcare professional can provide you with any restrictions.

The colour of your stoma will be pink or red, somewhat like the inside of your mouth. Stomas vary in size, shape, and location. They usually are about one inch around, but may be smaller or larger. Some protrude while some lay flatter2.
 
A stoma is created from tissue that is much like the lining inside your cheek. A little bit of normal bleeding may occur during the cleaning of your stoma2. Right after the stoma surgery, your child’s activities may be restricted for 6 weeks to ensure healing3.

After stoma surgery, what your child eats will gradually change from a largely liquid diet to their previous diet3. Certain foods may change the colour of stool. For example, red jelly or beets may give stool a bright red colour that looks like blood but is harmless. If you are ever uncomfortable with the colour of your child's stool, seek medical advice.


If you see these abnormalities in your child's stoma, contact his or her healthcare provider:

  • The colour of the stoma becomes very dark or very pale
  • A moderate amount of blood in the pouch4

The stoma has no nerve endings, so your child should not feel pain when you touch the stoma, or when she or he passes stool or urine.

Right after surgery, your child's belly may be tender, but this should lessen each day as the stoma heals. Once healed, your child can play as desired—and even crawl on his or her tummy—unless nurses and doctors advise against it.

Changes to the size and shape of a new stoma are normal during the post-operative period. Initially, after surgery, stomas are swollen. The swelling will gradually subside over a period of about 6 weeks after surgery.5 A stoma can be at skin level, retracted (below skin level) or protruded (sticking out) from the belly's surface. Your child’s healthcare professional can give you specific instructions on how to care for each type.

Certain  products  can improve pouch wear time if stool empties from a stoma at skin level. For children with a prolapsed stoma, you may be instructed to check the color of the stoma on a regular schedule. A change in color may indicate that the stoma is being pinched or cut by a pouch, snug nappies, safety belts or clothing.

As your child grows, the size of the stoma may also grow. The size or opening of your child's stoma system may need to change. Your child’s stoma nurse will be able to assist you with resizing, as needed.

Typically, the pouch is emptied when it is one-third full. This will prevent heaviness, pulling away from the skin and leaks. It is also more difficult to empty the pouch when it is too full as it might pull the pouch away from the skin.6



Wiping the end of the pouch clean helps avoid odours and clothing stains. You can avoid skin irritation by always making sure the tail closure is not pressing into your child’s body.



If you have a colostomy, you will need to empty the pouch two or three times in a 24-hour period.6

Every child is different, so you should ask your child’s stoma care specialist about his or her unique needs. Pouch wear time often depends upon the child's size, activity level, and for kids living with a colostomy, the thickness of his or her stool. For example, an infant may need a pouch change daily. An older child may only need a pouch change every three to four days.


A regular schedule for pouch changes will help ease the transition to home care. Parents often learn when there are periods of slow stoma activity—such as before feedings or meals—and plan routine pouch changes during those times.



If you notice stool or urine leaking under the baseplate, the pouch should be changed to avoid skin irritation. If you need to change your child’s pouch more than once a day, call your child’s healthcare provider for suggestions.

Bathing will not hurt the stoma. Many parents choose to bathe their children with the pouch on, since there is no way to know when stool or urine will pass from the stoma. They then change the pouch after the bath.

When bathing your child, ensure that the skin is rinsed with water and completely dry before applying a new pouching system.

A common cause for irritation is when stool or urine gets under the baseplate and touches the skin. Sometimes, irritation may be caused by the way the stoma system has been applied. This may be due to a variety of reasons. The opening in the baseplate or wafer may be too big. The pouching system may not be the right size. Or you may need to use additional products such as paste or pectin rings to ensure a better seal between the stoma and the adhesive.



Your paediatric stoma nurse can help you resolve any skin irritation issues and advise you on solutions to sizing or system questions. 

Every child is different. You can start by having your child help you with simple tasks, such as gathering supplies, helping to remove the pouch, and helping to clean the skin. This may help your child's self-confidence—and yours, as you slowly transition your child to self-care.

Convatec stoma pouching systems  are designed to lie flat on the body so they cannot be seen under most clothing; however, here are a few tips that can further ensure your child’s comfort:

  • Be sure that belts and waistbands do not press firmly against the stoma, especially if it is located at or near the child's waistline.
  • Many parents of infants and toddlers find it helpful to use one-piece undershirts, outfits and overalls to help keep curious little hands from pulling off ostomy pouches.
  • Older girls and teenagers may wish to choose one-piece bathing suits that have a pattern design to help conceal the stoma.
  • Boys may feel more comfortable wearing boxer-type bathing trunks.

If you have other questions or concerns, it is always best to call your child’s healthcare provider.

 

Dehydration can happen any time your child loses too much urine or stool and is unable to replace the fluid.  Children can also get dehydrated from being in the sun or in hot temperatures, too much exercise and by taking some medication. If your child has an ileostomy (a type of stoma that connects the small intestine to the belly), it’s very important for him or her to drink lots of fluids to avoid becoming dehydrated.7

Call your healthcare provider if your child has diarrhoea or early signs of dehydration, such as:4,7

  • Dry mouth/ lips or skin
  • Decreased urine output
  • Less active or unusually sleepy
  • Nausea or belly cramping

This depends upon your child's medical condition. Unless your doctor recommends a special formula or gives you specific dietary guidelines, your child will most likely be able to eat a variety of foods with few restrictions.



Generally, it is important for your child to eat a balanced diet, chew foods very well, and drink plenty of fluids (as instructed by your nurse or doctor) to prevent dehydration⁴. For the first few weeks after surgery, your child may feel more comfortable eating small, frequent meals and snacks.



Your doctor may also recommend introducing foods your child was not able to eat before surgery—or new foods—one at a time, to see how his/her body reacts.

Yes.  Some foods  like cheese, potatoes, breads, bananas, and creamy peanut butter can thicken stools. Other foods can thin stools, such as fruit juices and very seasoned foods. Foods like red gelatine and beets can cause stool to change colour; however, this colour change is temporary and harmless.7

A food blockage may develop in a child with a stoma (especially if a child has an ileostomy, because it is narrower than the large bowel). Undigested fibrous food can build up and block the flow of stool through the bowel. That is why it is important for a child with a stoma to chew foods very well and drink plenty of fluids7.

Some foods that can cause a blockage include nuts, raisins, popcorn, seeds, corn, and some raw vegetables3.

Signs and symptoms of food blockage can include7:

  • Belly pain or cramping
  • Swelling of the belly or stomach
  • Watery stool, eventually leading to little or no stool output
  • Nausea or vomiting
  • The inability to eat or drink
  • Irritability

Ask your child’s stoma specialist about signs and symptoms of food blockage, as this can be a serious condition.

Swallowing air—such as when a child cries, sucks on a dummy, or drinks with a straw—may cause gas.  Certain foods  like beans, cabbage, onions, cheese and carbonated/fizzy drinks can also cause gas.3

You will most likely learn your child's usual pattern and type of stool output before leaving the hospital. This will help you know when to be concerned about diarrhea.

However, if you suspect diarrhoea, call your child's doctor. The doctor may ask you questions, such as:

  • Are you emptying the pouch more or less than usual?
  • Is the stool more watery?
  • Is your child showing any other signs of illness or dehydration?

Your child’s doctor or stoma nurse can help you resolve any diarrhea issues, make sure your child remains properly hydrated, and get him or her back to feeling fine as quickly as possible.

Tips from our me+ community

Bella was born with Long Segment Hirschsprungs and has had a stoma since she was 3 days old.

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Bella, @kylact

Bella was born with Long Segment Hirschsprungs and has had an ostomy since she was just 3 days old. Almost eight years later, Bella’s ostomy does not stop her from having fun! From swimming to teaching her friends about her "pouchy", Bella is living life to the fullest.

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1. Ostomy: adapting to life after colostomy, ileostomy or urostomy. Mayo Clinic website. Accessed April 16, 2024. http://www.mayoclinic.org/diseases-conditions/colon-cancer/in-depth/ostomy/art-20045825
2. Colostomy: Department of surgery: SUNY Upstate Medical University. Department of Surgery | Colon & Rectal Surgery. 1988-2024. Accessed February 27, 2024. https://www.upstate.edu/surgery/healthcare/colorectal/colostomy.php.
3. Healthwise Staff. Living with an ostomy. UPMC Life Changing Medicine . July 26, 2023. Accessed December 4, 2023. https://www.upmc.com/health-library/article?hwid=ug2186
4. United Ostomy Associations of America, Inc. (UOAA). LIVING WITH AN ILEOSTOMY. Published online 2022. Accessed January 17, 2024. https://www.ostomy.org/wp-content/uploads/2022/10/UOAA_Living_with_an_Ileostomy_Guide-2022-10.pdf.
5. Hoeflok, J. Stoma shape. GI Society | Canadian Society of Intestinal Research . 2024. Accessed February 27, 2024. https://badgut.org/information-centre/ostomies/stoma-shape/#:~:text=Changes%20to%20the%20size%20and%20shape%20of%20a%20new%20stoma,about%206%20weeks%20after%20surgery.
6. How to change, empty and conceal an ostomy bag. UChicago Medicine | How to Use an Ostomy Bag and Pouching System. 2024. Accessed February 27, 2024. https://www.uchicagomedicine.org/conditions-services/colon-rectal-surgery/ostomy/guide-to-pouching-systems/how-to-use-a-pouching-system#:~:text=To%20prevent%20the%20pouch%20from,in%20a%2024%2Dhour%20period.
7. Laparoscopic total colectomy and Ileoanal Pullthrough Program: Ostomy Diet Guidelines. Boston Children’s Hospital. 2005 - 2024. Accessed February 27, 2024. https://www.childrenshospital.org/programs/laparoscopic-total-colectomy-and-ileoanal-pullthrough-program/your-visit/home-care/ostomy#:~:text=Your%20child%20may%20develop%20a,foods%20well%20to%20avoid%20blockages.

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