Does your child have an ostomy? Here’s where to find help!
They say it takes a village to raise a child, and I’ve come to realise that this rings especially true when raising a child with an ostomy.
When I was first diagnosed with Crohn’s disease, it shook my world. I didn’t know anything about the disease or how it would impact me. The pain, the medication, and the change in my daily routine were things I didn’t expect and, to be completely honest, I didn’t know how to deal with them.
While I was battling my sickness, I was hospitalised many times. When the decision was made to have surgery and I ended up with my ileostomy, my world was shaken even more.
As an adult, I’ve found dealing with an ostomy incredibly challenging. Knowing first-hand what having a stoma involves, I’ve develop a deep respect for children who have ostomies.
As a member of S.A.S.S – The South African Society of Stomates, I often read about the stories of children on the group, the plight of parents of these children, and the many tales of bravery shown by children in the face of adversity.
I was in shock and awe of just how many children in South Africa have ostomies, and just how dedicated their parents are to ensuring they live full and happy lives.
Up until recently, these little heroes hadn’t even crossed my mind. Children and ostomies were something I had never really thought of because I never really known of children with stoma bags before.
As such, I dedicate this blog to children with ostomies, and their parents…
YOU ARE NOT ALONE: WHERE TO FIND HELP
Living with an ostomy is a daunting prospect for adults, let alone children and adolescents. Here are a few sites, places, and groups that may be able to help parents of children with ostomates.
A Guide To Gutsy Living
While researching this blog, I came across a very interesting ostomy toolkit – A Guide To Gutsy Living written and prepared by the Patient Advisory Council for paediatric ostomates.
The Ostomy Toolkit was created by the ImproveCareNow Patient Advisory Council’s Advocacy Taskforce. The toolkit is designed for and by paediatric patients who have had, or are having, ostomy surgery (resting or permanent ostomy).
It includes tips, tricks and personal stories about school, travel, supplies, playing sports, clothing choices, and how to tell friends.
Hollister is also a great source of information for parents and children alike. On their website they offer extensive support on managing ostomies in children and what parents can expect.
Here are eight tips from the site:
1. Be sure to have information about scheduling follow-up visits, medications, and other care your child needs such as incision care.
2. There is a lot to remember. Keep a journal of questions you have and information you have been given, or write them down in this booklet. Include key phone numbers you will need. Take pictures of your child and include them in your journal.
3. If your child’s stool is liquid, placing a couple cotton balls inside a drainable pouch can help absorb some of the fluid.
4. If you are changing your child’s pouch more than once a day because of leakage, tell your doctor or paediatric nurse.
5. Store ostomy supplies in a cool, dry place. Do not leave them where they will be exposed to a wide variation in temperature — such as in the sun, in your car, or in extreme heat or cold.
6. One-piece outfits that snap at the crotch hold the pouch more securely. Two-piece outfits make it easier to empty the pouch but they may also slide down and pull off the pouch before you are ready.
7. When traveling, carry moist paper towels in a zip lock bag for easy clean up away from home. Do not use commercially available baby wipes on the skin as they may leave a film on the skin and prevent a good seal.
8. Ask the healthcare professional or nurse about any dietary modifications that are important for your child. Write down foods that should be restricted or avoided.
Shadow Buddies Foundation
Shadow Buddies Foundation also provides lots of information on how to cope with your child’s ostomy.
There are also a number of videos dedicate to parents of children with ostomies. A great place to start is Ostomy at Home.
This video will teach you about normal digestion, types of ostomies, ostomy pouches and how to empty them, how to change an ostomy pouch, skin care with ostomies, daily care tips, eating to stay healthy, and problems that may occur with an ostomy.
Cancer South Africa
CANSA is also a great platform for support. Specialist care is offered at CANSA Care Centres and involves addressing complications resulting from cancer treatment, such as the need to have a stoma (colostomy, urostomy or ileostomy).
CANSA offer pre- and post-operative counselling, as well as support groups via their Stoma Clinics and specially trained nursing staff. Advice is given to patients and families and they are empowered with coping skills to deal with living with a stoma day-to-day.
CANSA also offer the sale of cost effective stoma products. Stoma-specific tele counselling is provided to the public. Appointments may be made on 0800 22 66 22 or email email@example.com
Always remember that it takes a village to raise a child, especially one with an ostomy. The good news is that there is a village out there, on hand to help you! I hope you found this blog useful and I wish you the very best of luck on your journey.
Vera SA is a proud partner of CANSA and The South African Society of Ostomates.
READ MORE BLOGS BY VERA SA: