A Lincoln woman, who was only 5st and needed life-saving surgery, is now a model raising awareness of what it’s like to live with a stoma.
Emma Sellars was diagnosed with the life-long chronic bowel disease called ulcerative colitis when she was just 16-years-old. She started experiencing debilitating symptoms such as incontinence, bleeding, anaemia, and nausea while she was studying for her GCSEs, and the condition continued to get worse.
She dropped to just five stone and had two life-saving surgeries within three days, saying at one point she was at death’s door. Now aged 20, Emma has a stoma bag, more confidence, and is able to live a happier life.
And Emma has been chosen to model for No Comment Required, a clothing brand which champions open conversations, raising awareness and changing attitudes on invisible disabilities.
Emma spoke to The Lincolnite about her journey and is determined to keep raising awareness to help others with the condition.
Diagnosis and challenges
When Emma was diagnosed at just 16 it got to the point where she couldn’t go to school as she was too unwell. She also had to be separated from her peers for exams, to be near a toilet, which caused her stress. Revising was also difficult as she couldn’t sit still for long periods of time.
Her doctor referred her and she had a colonoscopy. She was admitted to hospital after a flare up and tried various treatments.
After all the initial treatments failed, Emma was told she would need life-changing surgery to survive. She had a total colectomy and had a stoma bag fitted to her tummy, meaning the colon was removed and and part of the small bowel is diverted through the tummy to collect faecal matter.
Things did improve for a month or so, but then deteriorated again. Emma, aged 18, had to go back to Lincoln County Hospital to have fluid drained, but became so poorly she was transferred to Nottingham as her bowel stopped working and she went into paralysis.
Emma’s bowel had perforated and she had surgery in Nottingham. She was told her blood pressure had dropped so low that she was “pretty much gone”, but she managed to pull through.
At just 18-years-old, this was a lot for not only Emma’s body to deal with but also for her mental health.
She told The Lincolnite: “I was going to the toilet 30 times a day with severe bleeding and I was so tired. I had incontinence, even when I was just sat on the floor, I felt sick and like I’d lost control of my life. It took control of every aspect I’ve my life.
“I [thought I] would never be beautiful again, I wouldn’t be able to wear nice clothes, I wouldn’t have friends and people would think I smelled, but I was so wrong.
“When I had the surgery it was scary and I was put on ventilation. When I woke up I had no idea what had happened, and once they told me I felt very lucky.
“It made me look at life with more perspective. Life is so short and I’m grateful that I’m here.”
“Now I have my stoma, it has given me back most of the things that I had lost. I’ve now got control over my bowel, I’m not fatigued, no longer have bleeding, have more energy, and a lot more confidence, which is amazing as I’ve always been quite shy as a person.
“I feel so much better now, the difference from before the surgery and now is unreal.”
Emma has been in and out of hospital due to blockages with the stoma. She was also recently diagnosed with rapid early phase gastric emptying and small bowel dysmotility. This means that essentially her stomach empties too fast for her small bowel to cope with, but it is treatable with medication, which Emma now takes.
Raising awareness and modelling
During lockdown Emma created an Instagram page to raise awareness and try to help others with the condition.
She said: “Back when I was diagnosed I didn’t have anyone to turn to and wanted to be that person that others can turn to.
“I think a lot of people look at you as just a normal person, but a lot of these conditions are invisible. This is about trying to make it more visible and it is important to raise awareness.
“A lot of people see a stoma like something that an old person would have and see it as being disgusting. To me, you can’t smell it unless you’re emptying or changing the bag, and a lot of young people have stomas as well and they are life-changing.
“Slowly the perception is changing, more is known nowadays than five years ago, but more could still be done.
“I use a disabled toilet as I need access quickly and I get so many looks. I’ve had comments from people saying ‘you don’t look disabled’ and ‘there’s a normal toilet around there’.
“Over the years, and with everything I’ve been through, I’ve developed a thick skin so it doesn’t bother me, but it is sad as some people don’t take it as well. More awareness needs raised to stop this.
“To anyone with the condition I would say just reach out and know that you are not alone. A stoma is not a bad thing and it has been completely life-changing for me.”
During lockdown last year, Emma also signed up to be a volunteer for the Lincolnshire Network of Crohn’s & Colitis UK, saying: “It’s everything to me as I want to help other people who are going through similar to me as I felt so alone back then.”
Sharon Williams, who is lead volunteer at the Lincolnshire Network, told The Lincolnite: “I’m really proud of how far Emma has come since her diagnosis, she has come out the other side with a new found confidence and incredible strength and desire to raise awareness of IBD and to help support others living with crohn’s disease and ulcerative colitis.
“The Lincolnshire Network is looking forward to having Emma as part of our team of volunteers to help make the invisible visible.”