When we think of a stoma, we often think of the older population being affected with bowel issues and requiring stoma surgery…
Yet bladder and bowel disease, dysfunction and continence issues can affect people of any age group, from babies to younger children through to teenage years and adulthood. There are approximately 102,000 people with a stoma in the UK and around 21,000 new ones are formed each year of people of all ages, therefore there is lots of support available.
Coming to terms with having a stoma when you are a young child, teenager or a young adult can be a very lonely, isolating journey and it can be difficult maintaining your wellbeing after stoma surgery. But remember, there are lots of support groups which enable you to talk and get the support you need. Many young people have turned to blogging about their stoma journey and use their experiences to help others overcome their frustrations and emotions of having a stoma.
If your baby or child has an illness and needs a stoma, it can be a stressful and daunting time for the whole family but try not to feel alone as a parent. No parent expects their child to undergo formation of a stoma.
Your healthcare team will provide you with all the knowledge and support you need before and after surgery so that you have someone to turn to throughout. Taking care of your child’s stoma will soon become part of your routine on a daily.
Understanding why babies and children need a stoma
In the UK, around three in four paediatric stomas are formed in the first 6 weeks of life. Most are formed to correct a birth defect resulting in something which happened during the early stages of pregnancy.
The majority of stomas in babies and children are temporary when it is used to let the intestines heal after an illness or surgery, but there are some which are needed on a permanent basis when the intestines are damaged, or a large portion of the bowel has been removed.
Here are some of the medical reasons why a baby or child might need a stoma:
- Imperforate anua – the opening of the anus is missing or blocked, meaning there is no exit for the bowel or its contents
- Hirschsprung’s disease – the nerves that make the bowel work are missing. The bowel muscles are unable to push waste material through the bowel causing a blockage and swollen abdomen
- Inflammatory Bowel Disease including Crohn’s disease and colitis, where some areas of the gut become inflamed causing damage, obstructions, or leakages
- Neonatal necrotising enterocolitis – most common in low birth weight or premature babies. For unknown reasons, arts of the bowel start to die
- Bladder exstrophy – The bladder and gentitalia are not properly formed
- Cloacal exstrophy – The large bowel, bladder and genitalia are not properly formed
- Eagle-Barret Syndrome – Urinary problems and the absence of stomach muscle
Helping your young child to adapt to life with a stoma
Becoming a new parent and caring for your baby or young child is a wonderful experience. The last thing on your mind is your child suddenly becoming ill and requiring stoma surgery. Although the thought is terrifying for the entire family, you will get through it with lots of support from healthcare professionals.
It is normal for parents of babies and young children with stomas, to feel quite overwhelmed with the support required for their child. There is a lot to learn on a practical level such as how to care for their stoma, how to change a stoma bag, how to look after the peristomal (skin surrounding the stoma) and manage the stoma output.
Balancing these new skills with a baby or young child and a busy lifestyle can be both stressful and tiring. It can also be an isolating experience, certainly if you don’t know of anyone who has a stoma. Involve your partner and siblings into the process, so they can also understand what is happening and how they can do their own bit in supporting each other.
For toddlers and older children, support also needs to be provided at nursery, to help them get back to school, help them settle into lessons and to help parents feel they are being supported when they are not with their child. It is a good idea to schedule a meeting with the teachers or school nurse to discuss how your child’s needs have changed. Ensuring siblings and other children understand about what a stoma is and are kind to your child is also important to their health and well-being.
Older children with stomas
For older children and teenagers, adapting to life with a stoma can be a long emotional journey. Adjusting to having a stoma may raise several challenges, such as the psychosocial impact, altered body image and altered body function during a vulnerable time of adolescence where the need for independence and autonomy is so important.
The emotional impact of having a stoma can be devastating to a teenager’s self-esteem, especially during a time when society is so focused on body image, hygiene, and appearance. In addition to coping with the practical elements of having a stoma, adolescents must deal tackle the physical, sexual, psychological, and social effects as well.
Adolescents with a stoma need to have someone to reply on, someone who will not judge them and someone who will give them the time they need to process what is going on. Caring for adolescents with a stoma requires patience, availability, and respect for their adaptability. It is about helping them adjust to their new condition.
Don’t forget to reach out to your stoma care nurse for support and advice, especially if you feel your teenager is becoming anxious or withdrawn. There is also plenty of support and advise through local and online support groups and many parents and young people write online blogs to share their stories and increase awareness so as not to feel so alone.
There are also stoma care delivery services available for young ostomates, including GoldCare Junior.
Support groups for young ostomates
Bladder & Bowel UK: www.bbuk.org.uk/children-young-people
Crohn’s & Colitis UK: https://crohnsandcolitis.org.uk
Colostomy Association: colostomyuk.org
Junior Ostomy Support Helpline: www.colostomyuk.org/information/young-ostomates
Max’s Trust: https://maxtrust.org
Mitrofanoff Support: www.mitrfanoff.support.org.uk
The ileostomy & Internal Pouch support group: www.iasupport.org
Urostomy Association: urostomyassociation.org.uk