The “Ins” and “Outs”
By Diane Gregoire
Toilet training is an expected behavior in growing up. Children learn bladder control when they are 2 to 3 years old. Most children control their bladder during the day by age 5. As stooling occurs less often and is more predictable it usually happens before bladder training.
How do you know your child is ready to toilet train successfully? He must be able to sit, follow directions and stay dry for at least two hours. Nerves exiting the spinal cord between the sacral level two and three are usually totally damaged or partially damaged in children with spina bifida. This may allow children to have some bladder and bowel control. As a rule, people with spina bifida need catheterizations and/or drugs for complete bladder and bowel control.
Most parents are really happy when their child reaches the milestone to stay clean and dry on their own. Children with spina bifida can reach that landmark but it does take more time and training. As parents, we need to assess what we expect. Should we as parents focus on social continence? Will this be easier for me and my child? Will it be too much to require day and night continence?
The goal of bowel management for people with spina bifida is to promote regular emptying to prevent shunt malfunction, constipation, feces incontinence, diarrhea, urinary incontinence, skin breakdown and social isolation. Incontinence itself carries stigma, and most individuals with this issue are against being labelled with this term or even with a problem. It is a taboo subject. Ask a teenager if they are incontinent and they will laugh, avoid the subject or absolutely ignore you.
In all honesty, continence is a social expectation. It is not an illness and people who are incontinent are not generally “sick”. Maybe incontinence needs to be managed in a different sphere. Before starting a bowel program, explore the impact on the quality of life of your child with spina bifida related to incontinence. Bowel management mishaps can lead to physical and psychological problems. Fecal incontinence may create social embarrassment, teasing, bullying. The child may feel angry, sad or rejected. The bowel condition can be a barrier to family activities, holidays and prevent the child to do what other children do. Regular incontinence will also have an impact on skin integrity which adds to the frustration and a risk for more severe skin breakdown.
Together with parents, health care providers need to explore with the beliefs and frustrations experienced by the family and what they have tried in the past. These questions should be part of the assessment.
1. Do you believe? Do you believe your child can be continent of urine and feces?
2. What do you think of your child soiling his clothes?
3. Do you think something can be done regarding bowel incontinence?
4. Would you like to start a bowel management program?
5. Are you willing to commit to it?
Then proceed in asking the child:
1. Do you know when you have to go to the bathroom?
2. Can you smell you are soiled?
3. Can you cleanse yourself when you are soiled?
4. Do you want to be clean?
Let’s not hide from the problem. Each child is unique and each program is also unique. To be successful with the bowel management of your child, address diet, constipation, and diarrhea, position on toilet, participation and routine. To reach the outcome, persistence, repetition and repetition and then more repetition is needed. Positive feedback will also provide much needed support to the child. Do not overweigh your child with a hefty goal. Small steps which are maintained will be more positive.
Parents do you believe you can be successful? Yes, believe. You and your child will be successful. You can start the program slow and easy and celebrate each success. It will not be successful overnight and may take up to six months. Are you ready to train for your “Olympics”? Your health professionals may coach you. If a team is not officially helping you and your child to obtain bowel continence, you can create your own team.
Help is available from: the physician for medication, the dietitian for tips on food, the OT for equipment and clothing, and the nurse will help you to organize a calendar, routine and demystifying the information. Start slow and one step at a time. The main goal to reach: regular soft bowel movements, every day to every second day.
How? Be clear on the expectations: diaper change, cleansing, sitting on the toilet after a meal, expectations of bowel movement on the toilet.
• Let your child see that everyone in the family has a bowel movement everyday.
• Involve your child with his care.
• Have a colourful calendar to mark all milestones.
Why? As children learn by example, it is important for them to see what family members do in the bathroom.
• Children want to please and want to do as others.
• Do you know what fibre means and where to obtain it?
• What is constipation and diarrhea? Is it possible to stop the ongoing changes between diarrhea and constipation?
• “Never let a child go more than 2 days without a bowel movement” Leibold, (1991)
• Do you know the adequate sitting position for your child?
As a rule, kids with spina bifida can handle their own bowel program by adolescence. But if your child is a teenager and he has no program it is not too late to start. Review with your teenager how important this is for them.
• Create an assessment sheet and identify with your teenager if a bowel movement happens at the same time daily.
• Stool consistency.
• Is the teenager mobile enough?
• What have you tried in the past?
• Is constipation an issue?
• Review liquid intake, fibre in diet.
• Review time toileting.
• Medication needed such as suppository, laxative.
• Devices needed such as cone enema?
• Is the teenager concerned on going on a date?
• Is the teenager able to play sports without incontinence?
• Is he able to go to school?
• Is he able to swim without accidents?
Your teenager has tried all avenues and still has accidents. Social continence could be achieved with anal irrigations. This could be achieved using enemas with a cone or use of pulsed intermittent evacuation. This method of cleaning the bowel over a couple of hours is quite effective. Anal plugs are another device available and might prove sufficient in assisting with bowel management. Referral for surgical options such as cecostomy to be able to do ACE (antegrade continence enema) might need to be considered.
Your child is unique. There is not only one recipe to obtain success in bowel continence. There will be setbacks when your child is sick, as routine may need to be interrupted, but the goal is worth the undertaking. This is why it is very important to set realistic goals for what you and your child may accomplish. Helping your child with continence management at a young age means he will be more willing to continue as he grows.
Diane Gregoire is a nurse in the Spina bifida program at the Children’s Hospital of Eastern Ontario. Reprinted with permission from the Spina Bifida & Hydrocephalus Association of Ontario.