Sian’s Story – Ulcerative Colitis
"After eight months, we decided we couldn’t keep doing this. I reached a point where I said: ‘Take my bowel out. I don't want it anymore."
Tell us a little about yourself
“My name is Sian, and I’m 30. I work as a risk analyst. I live in Cardiff with my husband, Matt, and our three-year-old dog, Quinn. I grew up in Kent but moved to Wales after meeting my husband. We got married two months ago and are planning our honeymoon for next year!”
Can you describe when your symptoms started and what they were?
“My symptoms started around Christmas 2017. I started passing out a lot, but I thought it was just the flu. I’d come home from work and fall asleep on the sofa for hours. I tried to brush it off, thinking maybe I was just overdoing it.”
“By March 2018, I noticed blood in the toilet, and I thought it would go away. At first, I thought I just wasn’t following a healthy lifestyle, so I tried to exercise more, but it got worse.”
Talk us through your journey with ulcerative colitis
“I finally went to the doctor and was sent to the hospital in August 2018 for tests. I didn’t think much of it. After a colonoscopy (a thin tube with a camera to look at the bowels via the back passage) in October, I was told right away: “You have ulcerative colitis.”
“I was shocked. My first reaction was: “I don’t know what this is.” They gave me information leaflets and said someone would be in touch, but I still felt unsure about what was happening.”
What treatment did you receive?
“I was still living in Kent when the bleeding first stopped. I was on prescribed medication for ulcerative colitis but things got worse again. I ended up using prescribed steroid enemas (medicines that are inserted into your bottom), which worked for about two weeks before the bleeding started again.
At one point, I had daily bleeding for a year and a half. There was so much blood that I remember telling Matt: ‘Make sure I’m awake in the morning because I’m not feeling good tonight.’ It was a scary thing to say, but that was how bad it got.”
Note: It is important to discuss blood in your poo with a medical professional. Our Poo-Torial tool tells you more about what your poo may indicate; the colour and consistency, but also how frequently you empty your bowels.
Are there any hospital experiences that you particularly remember?
“I moved to Wales to live with Matt, and I started losing a lot of blood again. One day, Matt came home and found me crying on the floor. He took me to A&E. In my mind, I thought I needed to be prescribed more steroids from my GP. Instead, they admitted me to the hospital. I was confused and overwhelmed. The nurse tried giving me prescribed medications through an IV drip (this delivers medication to the body via the veins), but my body wouldn’t accept them. My arm swelled up, and it was very painful. I stayed in the hospital for five days.”
What happened afterwards?
“After finding a GP in Wales, I had a treatment plan and support team. I tried over 13 different, prescribed medications, but either they didn’t work or the side effects were too much. One even caused an anaphylactic shock (a severe and potentially life-threatening allergic reaction). I was prescribed injections, but Matt had to inject me because I couldn’t do it myself. Our relationship struggled during this time. After eight months, we decided we couldn’t keep doing this. I reached a point where I said: ‘Take my bowel out. I don’t want it anymore.’ If I had surgery, it would be a proctectomy (surgery to remove all or part of the final section of the large bowel), which is permanent.”
“Finally, in January 2023, I started a new, prescribed medication, which has been working. I go for infusions every six weeks at the hospital, and I’m no longer bleeding, which is a good sign.”
How are you now?
“It’s been a whirlwind journey with ulcerative colitis for the past six years, and we’re still figuring things out. I had to explore fertility treatments, which was unexpected. Right now, I’m stable thanks to infusions, but it’s my last option before more surgery.”
“I’ve missed events like my friend’s hen-do, but I pushed through my best friend’s weddings despite the bleeding. We had to carefully plan my infusions around our wedding, but thankfully, I had no issues on the big day. It’s just unpredictable when it will flare up.”
What is one thing you wish people knew about ulcerative colitis?
“I wish people understood how much we have to adapt. You feel like a chameleon because you have to change constantly. It takes extra effort just to look ‘normal.’ People think when I start treatment, I’ll be fine. But the reality is, within six weeks or less, I’ll be really poorly again, and it’s exhausting explaining that every time.”
Why are you sharing your story?
“It took a long time for me to come to terms with my story. When I first started, I didn’t know where to turn. I started my Instagram two years ago to share my journey with ulcerative colitis. It has made me more open. Nothing feels off-limits anymore. I talk about anything, even the graphic details because I believe it’s important to raise awareness. It’s nice to share experiences and offer support to others going through the same thing.”
What are your hopes for the future?
“Many people may have heard of Crohn’s disease but not ulcerative colitis, so I want to keep raising awareness for it. I love the work Guts UK does to raise awareness for various conditions, and it inspires me to become more of an advocate myself. I was really happy to be part of #GUTSelfie this year and even got my husband and dog involved.”
Guts UK is the only UK charity funding research into the digestive system from top to tail; the gut, liver and pancreas.
People are suffering. People are dying. All because of a lack of knowledge about our guts. Guts UK exists to change that.
With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Please consider donating today. Your donation will help fund research leading to earlier diagnoses, kinder treatments and ultimately, a cure.
