Emily is a 32-year-old care worker, wife and mum living with a permanent ileostomy. She had her initial surgery in February 2018 and her permanent Barbie bum surgery later that December – her life changing in less than a year. We spoke with Emily to discover her stoma story as part of our Diary of an Ostomate series. Read on to find out how she went from struggling with debilitating symptoms to reclaiming her life and confidence whilst helping others along the way.
Emily’s journey to diagnosis was frustratingly long. It took eight months from her first symptoms to receiving a confirmed diagnosis of ulcerative colitis, a form of inflammatory bowel disease (IBD). Her main symptoms were blood in her stools, urgency and a weakened immune system.
“I constantly had a chest infection or tonsillitis or an ear infection and I was always on a different antibiotic,” Emily recalled. “I thought it was my immune system just crashing down.”
Emily had to fight to be taken seriously. Doctors repeatedly suggested dietary changes rather than investigating further. She was told to cut out gluten, dairy and meat.
“I did a big food diary and it was eight months of cutting out things and not seeing any difference and then going back the next month and saying ‘nothing’s changed, I’m still bleeding’,” she explained.
When doctors finally diagnosed her with ulcerative colitis, Emily felt relieved to finally have an answer: “I felt like, oh, at least I now know what the problem is and I can fight it,” she said. “I had this mentality of like, I’m going to win. I’m going to get really healthy and I’m going to beat it.”
Unfortunately, Emily’s determination couldn’t overcome her body’s refusal to respond to treatment. Every medication she tried failed to control her symptoms.
“I had this dosset box for the week and it was full of tablets, like steroids and immunosuppressants. At one point, there was 24 tablets a day,” Emily explained. “Nothing that I was putting in my body was helping the symptoms.”
She eventually moved on to an expensive biologic injectable drug that also failed to help. “They didn’t work. I thought, I’m just taking away this NHS supply to somebody that could use them,” she said. “So I went with my little cool bag up to the hospital and I said take them back. I do not want them and I don’t want to do this anymore.”
That’s when Emily asked to be put down for surgery.
When Emily was first diagnosed, surgery was the last thing she wanted. Like many people, she held misconceptions about stomas. “I was very much like, I do not want a stoma bag, it’s dirty, it’s for old people,” Emily admitted.
But after two and a half years of unsuccessful treatment and severe illness, her perspective shifted. “I didn’t want to die. It got to the stage where I thought that this could actually just kill me. So let’s just get it out,” she said.
Emily was terrified going into ileostomy surgery, but her stoma nurses were incredibly supportive and guided her through everything. What happened when she woke up surprised her.
“I immediately felt better. It was instant. Although I’d gone through a nine-hour surgery and I had this stoma bag and I had drains everywhere and catheters and machines, I woke up and I was like, oh my God, I don’t feel ill,” Emily recalled. “It was instant.”
Before surgery, Emily’s life had become increasingly restricted. She lost friends as her anxiety about her condition grew. She stopped going out unless she knew exactly where every toilet would be on her route. “I lost a lot of my self-confidence and my zest for life was gone. I was so unhappy.”
After surgery, everything changed. Emily felt that the constant negative thinking about her condition was replaced with something manageable. Once she changed her bag, she was set for the day.
She was able to get married, have a baby, and do all the things she thought would be impossible. “If I still had active ulcerative colitis and I was trying to get married in a white dress, it would be hell. I’d be like, I can’t, I’ve got to wear black!”
While in hospital after her initial surgery, Emily’s sister suggested she start an Instagram account to document her journey. The idea was to capture all the firsts: the first time emptying her bag at home, the first time travelling on a plane, even the first leak.
“She was like, just post it. It doesn’t need to be this big thing, but just do it as a little diary,” Emily explained. The account became a way to connect with others going through similar experiences and share both the good days and the bad. You can follow her @emilysileostomy.
After her initial surgery, Emily discovered she was still bleeding. This is when she learned about the possibility of a proctectomy, also known as Barbie bum surgery. “I didn’t even know what Barbie bum surgery was,” she said. “I was mind blown.”
She also hadn’t known that reversal was an option and it opened up questions about whether she wanted her stoma to be permanent. After scans revealed her rectal stump had active disease, doctors gave her a stark choice: have the permanent Barbie bum surgery or continue bleeding with the risk of developing rectal cancer.
“So I was just like, well, get it out then. What the hell? Just take it out,” Emily said.
She found the recovery from the Barbie bum surgery easier in some ways because she had already adjusted to life with a stoma. However, the surgical site itself was painful and itchy, and made getting comfortable a real challenge.
“I was constantly sitting on my hips and trying to get all the pressure off the wound, and lying on my side. I was never on my back; it was so painful,” Emily recalled. Fortunately, she healed relatively quickly. Within six weeks, the surgical site was closed up. Read more in our guide to Barbie Bum/Proctectomy surgery
Emily is honest about the fact that life with a stoma isn’t all sunshine and rainbows. “Some days are really rubbish,” she acknowledged. “It comes with bad leaks, sore skin sometimes. There are a lot of foods that I’m hyper aware about that I can’t eat or if I do eat it, I think, is it worth it?”
Blockages are a concern, as are hernias. Emily developed a hernia during labour. Before her stoma, she could lift heavy weights at the gym without a second thought. Now she has to consider the repercussions.
“It’s more medical than it was before,” Emily explained. “It’s not like once you’ve had the surgery, you’re cured now. There’s another thing that you have to think about – it’s just different.”
For anyone about to have stoma surgery, Emily has clear advice based on her experience:
“I would have done more research, but from the right source,” she said. “There’s a lot of fear-mongering online, and some people will only post the best things about their day, and some people will post constantly negative things. You have to find a good balance and follow the right people.” Our stoma advice and support hub could be a good place to start.
“Surround yourself with people who are going to help you in your recovery,” Emily also advised. “The ones that will come to your house and be like, ‘get ready, we’re going for a coffee’. Those sorts of people, rather than the ones that just ignore you.”
She also emphasised the importance of over-preparing with supplies. Emily keeps small pouches of stoma supplies in her work bag, car, gym bag and even at her mum’s house. “The worst thing would be if I went to work and I didn’t have anything with me, I would need to go home and then obviously that interrupts your day,” she explained. “Preparing is the best advice I think.”
She also recommends researching different products before surgery, as what works for one person may not work for another. Finding the right combination of bags and accessories is individual to each person.
Emily has been loyal to products that work for her. She’s used StoCare Remove medical adhesive remover spray and wipes since day one of her stoma journey, nearly nine years ago.
“If it’s not broken, don’t fix it. I’ve used it for years and years and I’ve never had an issue, it just works for me. I never really get sore skin. StoCare is the one solid product that I’ve had since day one,” she said.
“I’ll use different products for different reasons, throughout the year. In the summer, I use the wipes more because I’ll go swimming or if it’s hot, the residue of your bag goes on your skin a bit more, I can wipe it off without getting sore skin,” she explained.
Looking back, Emily recognises how ignorant she was about stomas before her diagnosis. She thought only older people had them and didn’t realise children could have stomas too.
“Until you have to know about certain illnesses or medical equipment, you just don’t think about it,” she reflected. “I was working in a care home and only saw old people with stomas. I thought, oh my God, am I the only young person in the world with a stoma?”
One of the biggest misconceptions Emily wants to address is about smell. Someone once asked her if she was scared her stoma would smell. “I think I smell better than most people. It’s so clean and there’s no scent to it,” she said. If you are worried about this, read our guide to stoma odour.
Most importantly, Emily wants people to understand that life goes on after stoma surgery: “You can still have a completely normal life. You can still have a baby, you can still go on holiday, you can still get married. The possibilities are, if not, more after,” she said.
“It’s a hard surgery. It’s life-changing,” Emily concluded. “But if you’re really, really ill, it’s life-changing in a really positive way.”
Emily’s journey from diagnosis through surgery to motherhood demonstrates that while having a stoma brings challenges, it also brings freedom from debilitating illness.
We’d like to thank Emily for sharing her story with us and for her continued support of StoCare products. Would you like to feature on our platforms? Fill in our Contact Us form to let us know!
This information is for guidance only and does not replace advice given by your healthcare advisors.