Living with Inflammatory Bowel Disease (IBD) is exhausting, unpredictable, and often feels like being at the mercy of a toddler long overdue a nap. You never know what or when it will be triggered. You’re constantly on tenterhooks, and you’re always worried about when the next thing will cause an emotional outburst, for you and your bum. Frequency and urgency are wildly unpredictable, and so is our emotional response to it.
Learning to live with these incredibly challenging symptoms in a way that supports our overall wellbeing is fundamental. Going back to the toddler example, we can’t always control them, but we can look forward to nap time, remission. We know the tantrums, sudden urgent episodes, can’t always be controlled, but we can learn to manage and plan around them.
Understanding Ulcerative Colitis and the Role of the Rectum
Ulcerative Colitis, or UC, is an autoimmune condition where the lining of the colon and rectum becomes inflamed and develops sores, causing symptoms like diarrhoea, urgency, bleeding and abdominal pain. The rectum is known for being the most stubborn part to get under control, which becomes especially problematic when it causes frequency and urgency.
I’ve found that having a good understanding of the colon and rectum’s role in digestion is vital for understanding why urgency becomes such a big issue. Once food has been digested, it enters the colon where water is absorbed and stool is formed. The stool is then pushed along by segmental contractions until it reaches the last part of the digestive system, the rectum.
The rectum acts as a temporary storage chamber where stool might go in and out in small amounts several times a day before a full bowel movement is triggered. It has stretch receptors that signal to the brain that there is something there. If UC is active, it can make the rectum much more sensitive, so even the tiniest amount of stool entering the area can cause a sense of urgency.
Certain dietary patterns during a flare can make things worse, for example spicy foods, caffeine and high-fibre foods. In my experience, the sensation of urgency often comes long before food has actually been digested enough to enter the colon. It can strike just after the first bite of food, or even from simply thinking about food.
When inflammation is left uncontrolled for a long time, our bodies start associating even turning over in bed as a reason to trigger a bowel movement. There was a time in my life when it felt like absolutely anything could set it off.
The Mental and Emotional Toll
The other issue is the neural pathway it creates. Long after my disease was physically controlled, mentally it took me a while to realise I didn’t need to react every time something entered my rectum. I had become hypervigilant to it. I was so used to having such short notice to get to a toilet that I ended up wearing a nappy.
I am not embarrassed to admit that I have had urgency strike in the middle of a supermarket or in my car on the way home, stuck in traffic. Honestly, shitting myself was not even my lowest point. It is so important to be honest about what it is really like living with this disease, because let’s face it, you cannot polish a turd. So why try.
Living with IBD affects every single part of your life. Urgency was factored into everything I did, from getting out of bed, to commuting to work when I was well enough to go, to which area of the office I sat in, what department I worked in, and even how much of my children’s dinner I could cook in the short window before I would need to go again.
I remember it even affecting my hospital treatment. I could not be attached to a fixed IV line because I needed a mobile one so I could get to the toilet. I would have anxiety about where I was sitting for my infusions, trying to predict whether I would make it to the toilet in time.
My life and mind were consumed by either going for a stool, thinking about it, cleaning it, or crying about it. It was quite literally a shit show that completely took over my life. The emotional and social toll it took was far greater than most people can imagine. It was embarrassing, and sheer fear and panic would set in if I was lucky enough to have time to experience those emotions before it happened.
At first, I did not feel like anyone understood, not even my IBD team. It felt like there was this huge gap between what the textbooks say and what real life with IBD actually feels like.
Finding Your Own Way
Treating IBD is not a one-size-fits-all approach. It is often about figuring out pieces of a puzzle that is constantly changing, or sometimes missing a piece altogether because a toddler has hidden it. It does not always make sense to anyone else, but what matters is finding what works for you.
Taking a multidisciplinary approach has been a game changer for me. Different health professionals have helped me manage my disease as a whole. My gastroenterologist prescribes the medications to tackle inflammation head-on. My dietitian helps with symptom control and nutrition. A women’s or men’s health physiotherapist can help strengthen the pelvic floor muscles, the hammock-shaped muscles that support our reproductive organs and bowels. These muscles can become weakened or damaged during prolonged flares, and strengthening them can make a big difference with urgency.
Having a psychologist or therapist is also so important to help with the mental health side of chronic illness, the anxiety, fear and depression that often come with it.
When you live with something like IBD, you are handed a stack of leaflets, a list of prescriptions, and a team of specialists who all have their piece of the puzzle. And do not get me wrong, my multidisciplinary team has been incredible. They have helped me understand my body, manage my symptoms, and navigate the medical side of things with compassion and care.
But the truth is, there is another side that no one teaches you.
The part where you are lying awake at 3 a.m. trying to talk yourself out of panic. Sometimes I would place my hand over my stomach and take a few slow breaths, just noticing my body without trying to control it. It sounds simple, but it helped me feel a little steadier when everything else felt out of control.
The part where you are scared to leave the house because you cannot trust your body.
The part where your identity, confidence and independence slowly slip away. I started choosing a perfume that smelled like the better version of me, the version I wanted to show up as each day. It anchored my day and reminded me to feel strong, even when everything else felt unpredictable.
I also practised tiny moments of control in small, everyday choices, like deciding when to get out of bed or organising my day around a few manageable tasks. It did not fix everything, but it reminded me I could still make decisions for myself, even when my body felt untrustworthy.
That is the space where I had to learn something medicine could not teach me.
How to trust myself again.
How to feel confident in the unpredictable.
How to calm the chaos, even when nothing else feels calm.
Confidence in the Chaos
That is why I created Confidence in the Chaos.
It is the bridge between the textbook version of chronic illness and the real-life version, the messy, emotional, everyday reality of learning to live with urgency, uncertainty and exhaustion.
This five-week course is not about being positive all the time or forcing yourself to cope better. It is about finding emotional steadiness, that quiet inner confidence that whispers, “I can hold my own hand through this.”
Inside, I share the tools and practices I wish I had had when everything felt out of control, the ones that helped me rebuild trust with my body, calm my thoughts, and feel human again.
If you have ever felt lost between medical advice and your actual life, this course is your missing middle. It is the space where real people with real bodies learn to navigate the hard stuff, gently, honestly, and together.
Confidence in the Chaos, helping you hold your own hand through hard days.
Catriona, 29, is a social media warrior advocating for and supporting fellow IBD patients on Instagram. Thanks to her openness and sincerity in sharing about her everyday life with ulcerative colitis, Catriona is helping others with gut health conditions not to feel alone in their struggles. Follow her on Instagram: @colitiswithcatriona.
Catriona Mill
