By Liana Jacob
A ROUTINE trip to the dentist turned into the appointment from hell for this woman after it led to a Crohn’s diagnosis at just THIRTEEN-YEARS-OLD – when she was told she would need to have a stoma or die.
Personal assistant, Rosie Campbell (28), from Essex, UK, was only 13 years old when she experienced severely painful lips and mouth, a sore tummy and pain going to the toilet.
The pain was so bad that she felt scared to go to the toilet and would spend most nights crying. At a routine dental appointment, her dentist prescribed her with a week’s worth of penicillin, believing that she had cold sores and piles, insisting that her blood tests came back healthy.
Her dentist then referred her to an oral doctor who performed a biopsy to discover what was going on. In November 2003, the results confirmed that she had Crohn’s disease, a lifelong condition in which parts of the digestive system become inflamed.
Five months later she was put onto Infliximab treatment, a biological drug that aims to treat Crohn’s, every six weeks for a few months. Following on from this, she was told that she needed a colostomy bag, or stoma bag, which is a small, waterproof pouch used to collect waste from the body. The idea of this terrified her as she began to worry that no boy would want to be her boyfriend.
Despite resisting to have the stoma operation for six months, the doctors warned her that if she didn’t have one, she could die from sepsis. In March 2005 she ended up having low potassium and almost died from heart failure, convincing her to have one after all.
Due to the endless surgeries and treatments, Rosie ended up missing most of her tenth year of high school and her weight dropped to just 5st and UK size four from being at a healthy 7st and UK size six to eight.
She ended up having to consume her food through a nasogastric intubation, a feeding tube that goes through the nose, as she was too weak to eat normally. She spent weeks on a liquid diet to gain weight, consuming 3,000 calories a day.
Over the years as she healed, she began to get used to having the bag and recently after witnessing many other men and women with Crohn’s embracing their bags, she decided to do the same and has used her Instagram profile to take her followers on a journey of self-acceptance. She is now in a relationship with her soulmate, Reece.
“I was so scared; no one knew what was wrong with me. The GP kept sending me away saying nothing was wrong. I was given cold sore cream and creams for piles. I kept asking myself ‘why me’,” Rosie said.
“I kept going to my GP with symptoms of sore lips and mouth, sore tummy and pain going to the toilet. They kept telling me my bloods were fine.
“I spent the next year in agony with pain going to the toilet; crying most nights because I was scared to even try to go to the toilet. The pain was like glass cutting me.
“In October 2003 I went to a routine dentist appointment and my dentist gave me a week’s worth of penicillin and said if this doesn’t help with the mouth ulcers, he would refer me to the oral doctors at my local hospital in Epping.
“Of course, the penicillin never worked, and I ended up at the oral doctor’s office having biopsies taken a week later; they went through many things they thought it might be but not Crohn’s.
“I also didn’t put two and two together and didn’t think that my mouth and bum could be a linked problem.
“I went back for my results and was told I had Crohn’s disease. At the age of thirteen, I had no clue what that was and what was about to happen to me.”
Rosie was then told that she would need a stoma bag and that the results could be fatal if she refused to have it.
During her colostomy bag operation, Rosie ended up losing 2st and had to be fed through a tube. Over time she began to heal and is now a healthy 8st and UK size six.
“Less than five months after I was diagnosed, I was put onto Infliximab treatment every six weeks and a few months after that I was told I needed a colostomy bag,” she said.
“I remember the day I sat in clinic at the Royal London Hospital with my mum and read a poster on the wall and asked what a stoma was, my mum told me I won’t ever need one of those.
“Little did I know a nightmare was about to happen. I just thought to myself who will ever want to be my boyfriend.
“I was never bothered before; I used to love school and wasn’t interested in having a boyfriend but then as soon as the thought of having a bag dawned on me, I panicked.
“I turned into someone who was rude and angry, and I went into overdrive. I started getting poo leak from a tunnel called a fistula that lead from inside my bum to my vagina.
“This was why I had to have a colostomy bag fitted to rest my bum down and let the fistulas heal. I was told I would need the colostomy for a year and a half to two years.
“I fought with the doctors for six months before being told that if I didn’t have it done, I would end up with septicaemia.
“My options were to die and not have a bag or have a bag and fight for my life. In March 2005 after a couple of weeks spent in hospital with low potassium and almost going into heart failure, I said I’ll have the bag done.
“I had the bag done a week later and went home to recover; I’d missed most of year ten at school and that was another worry, my GCSEs and what was I going to do with my life.
“Six weeks after my operation I was back in hospital, five stone, losing all of my hair and feeling very unwell. I was taken to theatre for an examination.
“I was fitted with a NG tube (feeding tube up the nose). My doctor was telling my mum that my organs were going into shut down; my stoma operation hadn’t healed at all.
“This was a low point in my life; my mum was on her own when she was told she could lose me. I spent weeks on a liquid diet to gain weight, three-thousand calories a day pumped into this tiny body of mine to try kick start some healing.”
In 2011, Rosie’s colostomy bag was changed to an ileostomy, which she hated and felt insecure about, until last year when she decided to raise awareness of her condition.
“My colostomy bag was changed to an ileostomy in 2011; I hated it. It was a nuisance and didn’t fit in with my life.
“As I’ve gotten older, I’ve found peace with it and am happier to accept that I have it for life. It took me a long time though.
“I was inspired by other peoples’ stories and people I met and wanted to share mine and I knew I could help. I didn’t want to be giving advice and not being fully open with everyone.
“It lifted a huge weight of my shoulders being able to be me properly; the first time in years I was like this is me. I’m so happy I’ve done it. I wish I did it sooner.
“I’m happy in a relationship now and the happiest I’ve ever been. I finally met my soul mate. I spent years worrying about meeting new people not being able to have casual flings because of the bag, but people are more understanding than you think.
“This ruined many opportunities for me and made me push a lot of people away; you just feel so embarrassed and when someone asks you what it is, you feel scared to explain. Who wants to talk about poo?
“My mum is my rock, she stood by me and she pulled me out of my darkest places. She would come see me every day and took time off work to be with me.
“We crossed every bridge together. Also, my dad sat with me all night until I would fall asleep. I don’t think I have ever fully thought about how it has affected them both.
“Don’t waste time like me, if your told you need a stoma do it. Keep on fighting. Everyone is facing some kind of battle whether it’s physical or mental.
“Make the most out of what hand your dealt and live your best life. Together we can break the stigma and show what self-love and self-care is.”