My Life with Ulcerative Colitis

I’m 37 years old, and I was diagnosed with Ulcerative Colitis in 2005. It’s hard to believe it’s been 20 years — two decades of fighting something that has changed my life in every possible way. This has been a traumatic journey for me — one that has left me with Pan Ulcerative Colitis, meaning my entire colon is affected, and only recently have I started to consider pouch surgery.

Living with this condition has been nothing short of a rollercoaster and incredibly traumatic, physically, emotionally, and mentally. There have been times when it’s completely taken over my life. Over the years, I’ve been through many different medications and am now on my fourth biologic. Despite treatment, this condition continues to have a huge impact on my day-to-day life. Each new treatment brings a little hope, but also fear — fear that it might stop working, or that another flare-up is waiting around the corner.

I’ve faced struggles with different medications over the years — steroids, self-injecting medications, and infusions. Having needles poked in me constantly, sometimes multiple times a week, can feel exhausting and invasive. Steroids, in particular, have been so difficult emotionally; they make me feel insecure, self-conscious, and sometimes completely unlike myself. There were years in the early part of my diagnosis when the depression and hopelessness became overwhelming — even driving me to feel suicidal at times. It was one of the darkest periods of my life, and yet I survived, day by day, often just putting one foot in front of the other.

On top of everything else, I’ve faced difficulties trying to start a family through IVF. The process involved constant medication and self-injecting, adding another layer of strain on my already exhausted body. My body feels drained and worn down, both physically and mentally, after years of treatments, needles, and managing this illness. Some days it feels like there’s nothing left in me, and yet I keep going, because hope — even a small glimmer — is worth holding onto.

For the longest time, the thought of surgery terrified me. The idea of living with a stoma bag felt impossible to even think about. I didn’t want to feel different, or have people see me that way. As time has gone on, and after years of fighting flare-ups, pain, and exhaustion, something inside me has started to shift. For the first time, I have started to seriously consider pouch surgery, and in a long time, I don’t feel scared, I feel strong.

Ulcerative Colitis has affected every part of my daily life. It’s not just the physical pain — it’s the constant exhaustion, the anxiety, the unpredictability, impacting my mind, my emotions and my confidence. Some days, I simply can’t function. Some days, even getting out of bed feels impossible, or I have to cancel plans because my body simply won’t cooperate. The hardest part is trying to explain what it feels like when people can’t see it. I often hear, “What’s wrong now?” or “You look fine!” But the truth is, I’m fighting a battle inside that no one can see. I wish people could understand that I’m not being lazy or dramatic — I’m just doing my best to get through each day.

There’s also a deep emotional side that many don’t see. This condition has affected more than just my health; it’s impacted my confidence, relationships, and sense of belonging. Not being able to have my own family has been one of the hardest things to accept, and that pain is something that never really goes away. It breaks my heart to see others around me with children. I’ve often worried about what people would think if I had surgery and ended up with a stoma. I already feel like I’m seen differently because I don’t have children, and I sometimes feel like a spare part when I’m around families. I worry I’d feel even more “othered.” Being labelled as “the one who’s always ill” can be incredibly painful; it hurts, more than people realise. I constantly feel under pressure to seem well, to act like it’s not a big deal, just to avoid the questions or judgment, even when I’m struggling inside.

Living with a long-term illness can be incredibly lonely. You start to feel invisible, especially when people don’t understand what it’s really like. The unpredictability of Ulcerative Colitis makes working life hard too, and makes life feel unstable. You never know when a bad day will hit, or how long it’ll last. It’s frustrating, draining, and sometimes it breaks you down, but it also teaches you how strong you really are. Having supportive friends, doctors, and my family has helped me get through the toughest days.

Recently, I’ve started to change how I see things, and over time, I’ve started to realise something important: I have to put myself first. My health is my priority — I am my priority. Recently, I told my mum that I’m no longer afraid of surgery. For the first time, I actually feel proud of myself for considering it. It’s taken me years to reach this point. I’m not rushing into anything, but I’ve started to learn more about my options. I’ve also learned that not all surgeries mean having a stoma for life. I discovered that there’s a type of surgery called the J-Pouch (Ileal Pouch-Anal Anastomosis), where you have a stoma bag temporarily, just for a few months before it’s reversed and formed internally. Knowing that has given me hope. Ultimately, I really just want to be pain-free. To wake up and not have to plan my day around my illness. To eat without worry. To go out without fear. To finally feel some sense of normality, whatever that looks like for me now. I also hope to enjoy simple joys — meeting friends, travelling, or just having a meal without worry — things I sometimes take for granted.

This journey has been long and painful, but it’s also taught me courage, patience, and resilience. I’m still figuring things out, but I’m proud of how far I’ve come, and I’m hopeful that one day soon, I’ll get to live the life I’ve always dreamed of: free from pain, fear, and limits.

To anyone reading this who is suffering, please know that it’s okay to talk about it. You are not alone, and asking for help is not a weakness — it is strength. Whether it’s your doctor, a friend, a family member, or a trained counsellor, sharing how you feel can lift some of the weight you’ve been carrying. If my experience helps even one person feel less alone, then it’s worth it. Because the truth is, you can live with Ulcerative Colitis and still find hope, courage, and a sense of peace within yourself.