Crohn’s and me: From patient to qualified nurse, Helena’s story.
Helena Corbett has had quite the journey going from patient to nurse, all while managing Crohn’s disease.
She is now setting out to raise awareness of Inflammatory Bowel Diseases (IBD) and to catch up with her former doctors and colleagues.
Helena said: “When I first got diagnosed with Crohn’s I just remember feeling incredibly anxious; my condition has made me that way. I always looked extremely pale and had no appetite. There was a big sense of relief for me and my parents because we finally knew what was going on.
“For a while before diagnosis it was thought I just had a stomach bug, but it had gone on too long to just be that. I just wanted to be able to eat and go to school as normal.”
Crohn’s disease is a form of IBD with symptoms including weight loss, reduced appetite, abdominal pain, mouth ulcers and diarrhoea often meaning “regular toilet trips of up to 40 times a day” as Helena recounted.
Birmingham Children’s Hospital operates the largest paediatric IBD unit in the UK and across Europe, where approximately 400 children under the age of 16 receive care for Crohn’s disease with an average of 120 new patients being diagnosed at the hospital.
Helena, who was diagnosed in 2005 at nine years old having had symptoms since she was seven. She was readmitted for two weeks aged 11 in 2008.
She said: “I loved my time training at the hospital being back on the ward after spending so much time there in my 2008 admission for my IBD as a child.
“I quickly realised I was being mentored by nurses that looked after me as a child. It was crazy and very surreal.”
Annette Mulcahy, Gastro Nurse Specialist at Birmingham Children’s Hospital, who worked alongside Helena and supported her with her training said: “It was a privilege to get to work with Helena.
“It was encouraging to see her put into practice her lived experiences of having an IBD with the way she worked with patients.”
Dr Sue Protheroe, Consultant Paediatric Gastroenterologist treated Helena as a child and trained her as a nurse. She said: “Helena really is truly an inspiration for us all. She is an amazing person who has worked hard to persevere with her dream to go to university and qualify as a paediatric nurse.
“Helena has experienced the effects of a chronic disease first hand herself and is the very best role model we can offer for our patients to aim high with their career aspirations.”
Thanks to Dr Protheroe and the team’s care, Helena went into remission as a child and avoided a stoma bag for around a decade due to a new medication meaning she could complete her Nursing studies and graduate from the University of Birmingham.
Unfortunately, at age 21 this medication stopped working, so Helena made the decision to have a stoma bag fitted and has since had it refitted three times and a Hickman line to dose herself with magnesium.
A stoma is an opening in the stomach from a Ileostomy operation to divert 1 end of the colon (part of the bowel) whilst removing the large bowel through an opening in the tummy used to pass stools.
Helena has named her stoma bag, with her current one named ‘Rose the Third’ and her Hickman Line who she affectionately refers to as ‘Howie the Hickman’. Helena said: “I am not dissociated from my line or stoma as they saved my life and are part me.”
Although no longer working at our Children’s Hospital , Helena still enthusiastically raises awareness of IBD and Crohn’s through sharing the ups and downs of her health journey on her blog.
She said: “When working at the Children’s Hospital, I was able to get quite a therapeutic relationship with the kids and parents on the ward as I can empathise with them through my own lived experience. I shared my blog with patients to help them.
“I want people to know that although the condition can be quite taxing on your mental health and physical health that you can still live your life.
“When I was first diagnosed if I would have had someone like myself as a role model to see that you can still live life with Crohn’s and achieve your goals. I would have really appreciated it.”
Helena feels that sharing the reality of her condition will educate people to be able to support their peers. She believes there is a big stigma and lack of conversations surrounding “the invisible illness” because those with IBD “may look fine but are poorly inside”.
She said: “I am eternally grateful for my stoma. I don’t see the point in being anything else towards it it's not going to change anything.”
To learn more about the Team Gastro be sure to check out our article on their award win of a PAFTA.