Something to cheer about: positively Stella
Thursday, April 15, 2021
Sarah Smith tells how her wife supported her through severe ulcerative colitis and how she was liberated by her ileostomy
My name is Sarah Smith. I’m 31 years old, and my bowel and I have been on a journey ever since I was 15.
Struggling to speak
It started in October 2005. I was getting severe diarrhoea, more urgency in needing to get to the toilet and abdominal pain. I didn’t know what was happening to me, but I knew I felt embarrassed of these symptoms. I was so embarrassed that I couldn’t bring myself to tell my mum what was happening, even when I noticed that there was a lot of blood in my stool.
This continued until April 2006, when it got so severe that I had begun vomiting. After struggling in silence for 6 months, I finally told my mum. She got me seen by the GP right away, and I was urgently admitted to hospital.
Cheers all round
Cheerleading has been a huge part of my life since I was 11 years old. I took up cheerleading before I was diagnosed with ulcerative colitis, I carried on while I was living with the condition, and I’ve kept doing it since I’ve had my stoma. There’s so much I absolutely love about cheerleading, from making great friends to competing with others—and just generally gaining some amazing memories. After surgery, I didn’t think I’d be able to cheer anymore, but even though I retired from competitive cheerleading in 2018, I created my own cheerleading squad with my best friend a few months after surgery. I now coach 35 athletes, aged from 5 to 27 years old, each week. I love it, especially seeing the athletes progress and gain new skills. I even join in myself every now and again too.
As I had just turned 16, I had to go onto the adult ward. This was very difficult, as there was no one my age on any of the wards, which made it an even more frightening and lonely time.
During my hospital stay, I had to go through lots of invasive tests, such as colonoscopies. This was the first time I had really needed any medical attention since having my tonsils out as a young child, and it was very scary. After a week of tests, I was diagnosed with ulcerative colitis, a form of inflammatory bowel disease.
Sarah had her major surgery in April 2019
Taking it all in
I had never heard of ulcerative colitis, and neither had my parents. We were sent home with lots of leaflets and information, but it was so much to take in, especially for a 16-year-old. I learned the hard way that ulcerative colitis comes in flares of severe symptoms, in between periods of remission, where the symptoms disappear. There are a variety of drugs that can help settle your symptoms and keep them in remission, but they do not always work, and they can have unpleasant side effects.
At first, I was put onto strong medications, including steroids. The steroids made my face swell and gave me insomnia and mood swings. Over the next few years, my disease was rarely in remission, and I had numerous hospital stays. Every couple of years, I had to change medications as my body stopped responding to a particular treatment. Eventually, all oral medication stopped working, so I had to go onto biologics, which were injected at first and then given intravenously.
The happiest day of Sarah’s life
It was such a difficult time. No matter how much you tell someone, you can’t make them truly understand.
Fortunately, in one of my periods of remission, I was able to go to college. It was there that I met Carly, who was to become my wife. To begin with, our relationship was not all easy. Not only did we still have to face some negative attitudes to same-sex relationships, but I also had this hidden disease that I needed to share with my partner. I don’t remember when I told her about it, but she does. She says that finding out didn’t change her opinion or love for me at all.
Having her support through all of these years has been amazing, and I don’t know what I would have done without her. My wife and my other family members have been my rocks throughout everything I have been through. Carly in particular was there for me when I had to skip meals, pause films or get up in agony night after night. She was always supportive and didn’t moan or groan. I am so grateful for all of the support I have received, because a life with ulcerative colitis is not an easy one to live.
Sarah sunning on her honeymoon in LA (left) and enjoying her wedding day (right)
By 2019, all the available medications had stopped working, and so I was rushed into hospital, where I underwent emergency surgery to have my colon removed and an ileostomy formed. I was petrified. Before then, I had often said that I would rather die than have an ileostomy. However, my stoma, who I have named Stella, has given me a second chance at life.
With hindsight, I can say I had been foolish. But that was how I felt at the time: I was scared and in the dark about what life with a stoma would be like. I felt there was (and still is) so much stigma attached to having a stoma that I chose to put my body through incredible hardship rather than go for an operation to make me feel better.
Well, I can say with confidence that life with a stoma has been absolutely life-changing. I literally love my life now. I feel well, and I have little-to-no pain, although I still have my rectal stump, which can still flare up. I have a quality of life I never knew was possible. I can enjoy simple things like watching a film without having to pause for an hour while I sit on the toilet. I can have an Indian takeaway and not worry about pain or rushing to the toilet. For so long, I lived life controlled by my disease, but now I have that control back, and it feels unreal.
10 weeks after surgery, Sarah undertook the Crohn’s & Colitis UK Walk It London
I have been through so much, and I now feel more confident in myself than I ever have. This is because feel physically well, and because I have accepted my body for what it is. I wanted to show the world that life is there for the taking, and it does not stop because you have a stoma.
I started my Instagram page @positively_stella, where I post educational videos with the aim of helping people understand what a stoma is and how it affects your life. I’m all about encouraging people to accept, care for and love themselves. I want people to feel so completely comfortable with their bodies that they do not worry about what other people might be thinking.
Starting this page has opened up many opportunities. I became ambassador for Colostomy UK charity and Self-Care By Sorelle (@bysorelle.uk). I was interviewed by Sky News for World Ostomy Day and invited onto my local radio station twice to talk about life with a stoma. I’ve been featured in the magazine Women’s Health UK, both online and in print. I’ve also worked with George at Asda to promote Breast Cancer Awareness Month, which made me the first model with a stoma to be featured on their social media.
It has all felt rather mad, but it’s all for a good cause. I hope it will help other ostomates and the wider public recognise having a stoma as a normal and positive thing.
Sarah modelling for George at Asda
Simply the best
I am so grateful for Stella; she has given me the best life possible. My hope is to create awareness so that future generations can feel just as confident in themselves as I do—and that they will be prepared to face whatever they have to.
Sarah Smith is an ostomy ambassador and lives in Leicester with her wife Carly