Answers to Questions About Special Care for Children With an Ostomy

Infants and children living with an ostomy have many unique needs and concerns that differ significantly from their adult counterparts. Children and their parents may present with challenges and questions that are not common or applicable to adults. Health care providers play a major role in anticipating and fielding these questions and answering them in ways that empower young ostomates and their parents to solve their own problems when appropriate and to ask for help when it is needed.

Here are a few common questions and concerns that parents and children may have and what can be done to help this younger population of ostomates thrive.

What should we do about management issues of the pouching system?

When a child’s ostomy pouch is leaking, this is a huge quality-of-life concern and should be taken seriously. Even when it doesn’t lead to physical concerns such as skin breakdown or infections, it presents with a significant reduction in quality of life and potential impact on mental health for the child. Some pouching issues can be solved by changing to a different brand or wafer type, while others can be solved by improving the pouch changing routine. However, some may require surgical intervention such as a stoma revision.

Children’s bodies are actively changing and growing, and ostomy pouching systems need to be reevaluated and adjusted on a regular basis. This requires periodic appointments with a certified Wound Ostomy Continence (WOC) nurse as the child grows. Infant and pediatric pouching systems must be changed out for larger versions in a timely manner or the family will struggle with unnecessary frustration and pouching complications.

Resources for troubleshooting pouching problems include the United Ostomy Associations of America, Inc. (UOAA) pediatric webpages, the WOCN Society’s Pediatric Ostomy Complications: Best Practices for Clinicians document, and ostomy supply manufacturing companies.

Is this normal?

A review of multiple different online support group forums reveals that the most commonly posted question for parents of young ostomates is about whether certain types of output, skin breakdown, color changes, or mucus discharge are normal and ok, or whether they warrant a trip to the clinic or emergency room. This is brand-new territory for parents, so anything that is different can present itself as a potential health threat. The advice they crave most from health care providers is the establishment of specific parameters so that they know what to regard as normal and at what point they should begin to be concerned. These parameters not only help parents feel more competent but also mitigate unnecessary office calls and decrease morbidity due to serious issues being overlooked for too long. Examples of when parents should be instructed to seek medical assistance include an unusual change in stoma size and appearance, excessive bleeding from the stoma opening, and/or severe skin irritation or deep ulcers.

How much can/should a child help with ostomy care?

As soon as young children begin to understand and follow instructions, they can participate in ostomy care. Parents typically understand how to involve a child in typical toileting/diapering routines, but ostomy care is different and may warrant specific instructions.

Touch plays an essential role for infants as they begin to learn about and explore their world. A baby will be eager to explore their ostomy, including the pouching system and the stoma itself. Their tiny finger might even find its way inside! This is nothing to worry about, as they’re not going to damage their stoma. Simple ways to involve a toddler in ostomy care include bringing supplies to the changing area, holding supplies while the caregiver works on changing the appliance, throwing garbage away, and washing their hands afterwards. The more caregivers involve toddlers early on, the more ready they will be to care for themselves later in life. Early involvement plays a huge role in improving children’s self-esteem and positive perceptions about their body.

As they grow, school-aged children can progress to emptying their own pouch and eventually taking over routine ostomy care completely. Periodic parental oversight is still advisable, however, and a caregiver should be available to help with troubleshooting any issues that arise. It is normal for school-aged children with ostomies to need some adult help with stooling and hygiene, even into the early teenage years. If the parent or child is having a difficult time with this transition of care even when it is developmentally appropriate, it may be helpful to ask them to start with an “every other time” approach, where the child alternates receiving assistance and changing the pouch on their own. Over time, this can progress to every third time and then once a week until the older child is managing their personal care independently most of the time.

How will my child manage their ostomy at school?

Children with ostomies can succeed and thrive in a traditional school environment! Planning ahead and establishing good communication early on will help with this. It is important to inform school personnel such as teachers and the school nurse of the child’s need for help with their ostomy care at school. Most kids with ostomies use a 504 plan to ensure they receive important accommodations, which may include the following: assistance from the school nurse with emptying and/or pouch changes, access to a separate bathroom, permission to leave class when needed to care for the ostomy, and a secure place to store extra supplies and clothing. Parents are responsible for making sure the staff knows what they should help with, what the child can take care of on their own, and when to call for assistance. Please note that 504 plans require a medical diagnosis and documentation from the child’s health care provider.

How do I help my child manage the emotional distress that comes with this difficult medical condition?

Children cope with stress and trauma in many different ways, and the most important thing they need is unconditional love. School-aged children may need to talk about their difficult experiences often and tend to reenact their trauma through play. Temporary developmental regression and anniversary reactions are also normal. It is important for parents to validate their child’s feelings and listen to what they say. Establishing clear boundaries can help with mitigating disruptive behaviors. Children need reassurance that their medical condition is not their fault and should be encouraged to ask questions and discuss any confusing fears, nightmares, flashbacks, or other difficult feelings with a trusted adult. They should never be punished for ostomy leaks or other medical-related accidents or mistakes. Professional counseling and psychiatric support should be made available when needed. Equally important is that children with an ostomy should never feel alone. There are pediatric support groups and a summer camp “Youth Rally” for adolescents with conditions of the bowel and/or bladder system where they can meet peers with an ostomy. Print out this pediatric ostomy resource from UOAA and share with families.

What sports and activities can my child participate in?

Children with ostomies do not need to limit their participation in sports or other recreational activities unless indicated due to other medical conditions. That being said, any sport where there is an increased risk of direct blows to the abdomen may warrant the use of a solid ostomy guard or protective wrap/support belt. For sports involving water or intense sweating and position changes, children may need to be reminded to empty their pouch frequently and change the pouch a few hours before the activity to ensure maximum adhesion. Waterproof tape, barrier extenders, and ostomy wraps can provide increased security as necessary.

Conclusion

While ostomy management for infants and children can be similar to adult care, many issues are unique to the pediatric population. Techniques to manage the pouch and supply needs may change significantly as the child grows, and health care providers should work closely with caregivers to ensure timely adaptation to accommodate the increasing size of a child’s belly and gastrointestinal system. Health care providers can empower parents to be effective participants and advocates in a child’s care by anticipating potential changes or problems with the ostomy and outlining an appropriate response. It is common for children and caregivers to have questions about home care, school, sports, and emotional well-being related to their ostomy and associated medical needs. These questions are important and can be answered in helpful ways by medical providers who are sensitive to the family’s personal circumstances and well educated regarding the unique needs of this special population. Parents may also benefit from the Pediatric Ostomy Patient Bill of Rights, which is a tool meant to ensure a positive patient experience and best outcomes to achieve a desirable quality of life for the infant, child, or teen living with an ostomy and their family.

Rebekka Smith is a Recreation Therapist who is the mother of a child with an ostomy. Please send inquiries to advocacy@ostomy.org. Information in this article was provided by the United Ostomy Associations of America. UOAA does not endorse particular products, manufacturers, providers, or other sellers of ostomy products. This column was not subject to the Wound Management & Prevention peer-review process.