Rachel is a part time baker and healthcare blogger who started raising awareness of stoma surgery following the birth of her son Jake. Jake was born with the same condition as Rachel, Hirschsprungs Disease. The disease affects 1 in 10,000 births in the UK every year, where the ganglion cells in the intestine are not present which are needed to move waste through the digestive system. Both Rachel and Jake needed all their large bowel removed and a few centimetres of small, having surgery within the first few weeks of life. Surgery was carried out under the care of Noah’s Ark Children’s Hospital in Wales of whom Rachel is very proud to be Family Ambassador for.
Hirschsprungs Disease can lead to secondary conditions meaning no one case is the same. With a return to secondary school teaching not possible following the birth of son Jake, Rachel used her time to document and share her experience of raising a child with a stoma. Using social media as a platform to raise awareness, Rachel connected with parents in the same position and helped those starting in their Hirschsprungs journey.
Jake had a very tough start in life with 10 surgeries to date and gastrostomy surgery carried out at 18 months old for artificial feeding. Little did Rachel know that 4 years later she would be having her second stoma surgery, after having the first one reversed at 2 years old due to complications after child birth. Her son Jake is now a thriving 5 year old who inspires her every day with his bravery and love of life.
Rachel uses her platform to not only educate and share her life experiences, but to also celebrate what having a stoma means to her. She is a keen runner and aims to do a half marathon next year with her new least if life giving her the ability to run and play with her son, the way she hadn’t been able to for years.
One of Rachels proudest moments was being chosen as part of the Be The Change movement with Pelican Healthcare and Respond. Rachel and her fellow Be The Change Voices were invited to speak to government and council members, to share the stigma and discriminations faced both as an individual and as a parent to a young ostomate. She lives by the philosophy of turning negative experiences into a learning opportunity and wants give young ostomates like Jake, a future with no stigma or fear living in society with an invisible illness.Pelican’s blogs by Rachel >
Meet Louise! She’s a blogger and ambassador for Pelican and has been for the last 3 years.
A little bit about Louise: she’s 35, mother of one, and has also been living on and off with a stoma for nearly 12 years, which she had placed back in 2016 and made permanent with the removal of her large bowel and rectum closed in 2018.
Louise’s stoma is named Bertha as she found naming her stoma made her more accepting of such a permanent change to both her life and body. They both get on well, have the occasional falling out but her life is so much better than life pre stoma.
Louise is a self declared book nerd, loves a murder series on tv and spends her free time hiking through fields with her pup Sammy.
A little insight behind her three surgeries: her first stoma was due to a bowel perforation during a C-section, her second and third was due to her perianal Crohn’s disease; all medicines stopped working and having a stoma was the only way forward in life for Louise. She has now been living with Crohn’s disease for nearly two decades.
Louise uses her accounts to raise awareness and prove that life and quality of life with a stoma has vastly improved. She likes to show that even though you have a stoma that you can still continue to live life to the fullest and have some great adventures along the way.
Feel free to drop Louise a note on social her accounts, featured on the previous page…Pelican’s blogs by Louise >
Everybody, meet Amy! She is 29 years old and is a Yorkshire girl. Amy has had Crohn’s Disease symptoms as long as she can remember but was diagnosed at age 7.
At the time, she was the third youngest in the country with Crohn’s Disease so IBD knowledge and how to treat it etc has come on a lot since then. Amy was diagnosed with Crohn’s of mainly the small bowel and was treated accordingly but unfortunately quite unsuccessfully until tests when she moved up to the adult clinic at aged 17 led to a re-diagnosis of Crohn’s of the colon, rectum & anus mainly.
After nearly 12 years of medications and treatments, Amy’s Crohn’s became so severe and unresponsive to treatment that she had to have surgery to give her her permanent ileostomy, Stacey Stoma, in 2011. Surgery was long and complex as a benign tumour the size of a watermelon was found attached to her colon and this left her within hours of her life. Surgeons said if the operation had been hours later, the chances of her being alive to tell the tale were very slim.
Surgery left Amy with what she likes to call a “warrior scar”, measuring about 6 inches down her stomach to the side of her belly button. She loves to share her body confidence journey with stoma surgery to hopefully help others to do the same and loves to help others out with IBD, stomas and their mental health especially. Amy is super partial to a vanilla latte or a pink gin and lemonade and loves greyhounds. She is engaged and works full time in accounts, as well as being a part-time health blogger & running her Instagram account to help & educate others who decide to join her on her journey. She also loves clothes, her “ostomy fashion” posts & can often be found singing in her spare time (and when working too!)
Amy’s favourite saying is “you own your stoma bag, it doesn’t own you.”
Pelican’s blogs by Amy >
Meet Natalie-Amber, a model and local BBC Radio Presenter from Swindon.
Natalie trained at Wilkes Academy School of Performing Arts before she collapsed and went temporarily blind in December 2017. Natalie-Amber was rushed to hospital where her parents were told to prepare for the worst, she had sepsis and kidney failure. Natalie had two emergency surgeries which resulted in her having 35cm of her small intestine cut out, left with a stoma bag and a diagnosis of Crohn’s Disease.
This was a great shock, because for seven years of unexplained stomach pain and sickness, Natalie-Amber had been mis-diagnosed and told by doctors she was anorexic, falsely assumed because of her profession.
Natalie-Amber had a stoma for a year when it was reversed she was left with a big scar down her stomach, a stoma scar and a drain scar, she has since dedicated her life to raising awareness for Irritable Bowel Disease (IBD) and scar positivity. This includes empowering women where she hosts body confidence shoots twice a year and a fashion show every other year to raise money for Crohn’s and Colitis UK for which she awarded the Alex Domain Awareness Award in 2018 and a finalist for the
MTM Black & Asian Awards – Young Achiever award in 2019 and is now up for the Rosa Hui Empowering Women award 2020 which has been postponed to later this year 2021 due to the pandemic.
Natalie-Amber continues to model, including being the face of the National Lottery ‘Set for Life’ campaign and for Adidas while she had a stoma bag. Her latest work has been part of a BBC documentary talking about Crohn’s Disease and her body confidence shoots shot in lockdown with Amy Dowden from Strictly Come Dancing who also has Crohn’s. To relax she likes to watch films and cuddle up with her three hairless Sphynx cats.Pelican’s blogs by Natalie-Amber >