Involvement with the Taranaki Ostomy Society and finding support for her condition has been life-changing for Abbie Grigg.
Involvement with the Taranaki Ostomy Society and finding support for her condition has been life-changing for Abbie Grigg.
Childhood friendships are always important, but in Abbie Grigg's case, her friendship with an Australian girl called Josie quite possibly saved her life.
Before she met Josie, Abbie was struggling with some serious health and self esteem issues and had begun to self harm.
"I hated myself and my body and didn't feel happy at all."
Abbie says the self harm when she was just 11 years old was a reaction to bullying she was experiencing at school.
The bullying was focused on Abbie's stomach, which after years of battling a health issue was bloated so the young girl looked pregnant.
"Even when I tried to explain, they didn't want to listen or to understand. They just saw my stomach looking so big and made fun of me."
Abbie, pictured at a school social before her life-changing surgery
Explaining the cause was difficult, as Abbie and her family had themselves spent years seeking answers from health professionals.
Abbie says her stomach issues started when she was just three years old and had campylobacter, a stomach bug which causes chronic diarrhoea and vomiting.
After the bug went away, Abbie continued to struggle with bowel issues, specifically chronic constipation.
"We went numerous doctors and dieticians but no matter what we tried, the problem didn't go away."
By the age of seven, Abbie's stomach had begun to bloat as a result of the years of constipation, and she was experiencing regular stomach pain.
"If your child has asthma, a heart problem, issues with their hearing or something, you can talk about it. But no-one stands at school pick up talking about constipation. So we felt isolated, incredibly alone."
Abbie's health was affecting the rest of the family as well. Her mother Lisa says over the years she faced numerous comments from medical professionals, teachers as well as other parents regarding Abbie's battle with constipation and bloating.
"People would say it was all in her head, or imply it was our parenting at fault. At times it felt like no-one was taking this seriously."
The problem was made worse, says Lisa, by the fact people don't openly talk about bowel health.
"If your child has asthma, a heart problem, issues with their hearing or something, you can talk about it. But no-one stands at school pick up talking about constipation. So we felt isolated, incredibly alone."
After discovering Abbie was self harming, Lisa became determined to find answers to her health issues.
"I was terrified. Abbie said she felt she had no good reason to live anymore. As a parent, that is a terrible thing to hear from your child."
At this point Abbie's aunt, who was being treated for bowel cancer, had to have a colostomy bag fitted. Seeking information they joined a Facebook page focused on ostomies.
"She came across a young girl in Australia on the page, who had undergone similar issues to Abbie. The girl's name was Josie," says Lisa.
Lisa joined the page and started talking online with Josie and her mum. Josie and Abbie became Facebook friends, and Josie was able to give Abbie support and, most importantly, hope.
"Josie had undergone a surgery to have a Chait Button fitted. This had made things much better for her and I started thinking it might help Abbie as well."
A Chait Button is a catheter which is permanently placed through a cecostomy through the appendix into the colon with a closable "button" on top. The patient can then flush the catheter regularly to clear the bowel.
Armed with this new information, Abbie and her family paid to see a paediatric gastroenterologist in Auckland.
"It was worth every cent we paid, because he listened to us. He really listened."
The specialist agreed a cecostomy and fitting of a Chait Button would be an appropriate course of action for Abbie.
Abbie had the surgery, which she describes as being "life changing" at age 12, and says her life has improved greatly since then. "I no longer hate my body or myself.
"I feel good about myself and am gaining more confidence every day. While my stomach still is slightly bloated, as a result of the years of damage, it is improving and will continue to do so.
"Talking to Josie online really did change my life, and I want other young people dealing with bowel issues like this to know there is support out there if you know where to look."
A cecostomy and fitting of a Chait Button to Abbie has made a big difference.
That support is going to be more easily available now as Abbie and her mum are now part of the Taranaki Ostomy Society. Lisa is the new Youth coordinator and is working with other youth health organisations to set up a support group for young people with ostomies.
Abbie, who plans to save up for a trip to Australia to meet Josie in the next year or two, says there is no need for anyone to feel alone any more.
"When I looked for a support group in real life, off Facebook, the only ones I found were for adults.
"At times it felt like I was going to visit a rest home because the people I met were so much older than me. It isn't that people my age aren't facing some of these health issues, it is that people don't talk about it, so it stays secret.
"It was only through talking with Josie that I felt less alone and I want other people to have that support now."
The Taranaki Ostomy Society can be contacted on 0800 111 432
GET HELP:
¦ Lifeline: 0800 543 354 (available 24/7) ¦ Suicide Crisis Helpline: 0508 828 865 (0508 TAUTOKO) (available 24/7) ¦ Youthline: 0800 376 633 ¦ Kidsline: 0800 543 754 (available 24/7) ¦ Whatsup: 0800 942 8787 (1pm to 11pm) ¦ Depression helpline: 0800 111 757 (available 24/7) ¦ Rainbow Youth: (09) 376 4155 ¦ Samaritans 0800 726 666 ¦ Tutaki Youth Inc: 06 928 4517 ¦ If it is an emergency and you feel like you or someone else is at risk, call 111
