What Ulcerative Colitis Really Feels Like

Happy Easter Monday to those who celebrate, and if you don’t, I hope this long weekend brought some kind of pause, peace, or even just a moment to exhale. Easter means different things to different people. For some it’s deeply spiritual, for others it’s a nostalgic mix of family time, roasted lamb, and resisting the magnetic pull of the chocolate aisle.

For me, Easter will always mean something else entirely. It’s when WellNow was first born. Twelve years ago, over a stormy Easter weekend in Cape Town, I was in the depths of my illness, barely functioning, desperately searching, and completely out of options. That’s when I started writing. What began as a tiny blog sharing UC-friendly recipes and restaurant tips slowly became something bigger.

This weekend, reflecting on how far things have come, I realised just how easy it is to forget how bad things really were. Like childbirth. You remember it was painful, but the details blur. And that got me thinking about how many people Google “What does Ulcerative Colitis feel like?” Because unless you’ve lived through it, it’s almost impossible to describe. And if you are living it, you might be trying to make sense of your symptoms, your emotions, or how to explain it to someone else.

What Ulcerative Colitis Really Feels Like

If that’s you, whether you’re newly diagnosed, trying to support someone you care about, or simply seeking to feel seen, I want you to know this: you’re not alone. Nothing you’re feeling is wrong. This illness can be confusing, lonely, and relentless. And even though it doesn’t always show on the outside, it can shape every part of your inner world.

Ulcerative Colitis (UC), a type of Inflammatory Bowel Disease (IBD), isn’t always easy to explain. It’s not always visible, it’s rarely predictable, and it affects far more than digestion. UC has a way of weaving itself into the rhythm of your days, shaping what you eat, where you go, how you sleep, and even how you speak to yourself. It can influence your energy levels, your social life, your confidence, and your plans. This is something you live with in your whole body and mind. If you’ve been wondering how Ulcerative Colitis affects your life, the answer is often: in more ways than people might think.

Living with UC can often feel like navigating an invisible battle. Symptoms fluctuate, sometimes dramatically, and because they're mostly hidden from view, others might not always understand what you're going through. The loneliness can be as hard to carry as the discomfort. And that’s exactly why this conversation matters.

So let’s explore the reality of what UC really feels like, physically, emotionally, and mentally, so you feel seen, understood, and equipped to move forward. I’ve lived through many of these ups and downs myself, and I hope what I share here helps you feel less alone. There’s strength in telling the truth, and there’s power in feeling heard. Let’s start there.

The Silent Weight of an Unseen Illness

UC brings physical discomfort, yes, but also an emotional rollercoaster. When symptoms first appear, confusion and fear often set in. You might ask yourself, "What did I do wrong? How long will this last?" This confusion can lead to isolation, anxiety, and exhaustion from explaining or hiding your symptoms.

It's normal to feel overwhelmed by decision fatigue, constantly wondering what to eat, when to leave the house, and how to manage your energy. Anxiety about potential flare-ups and how others perceive you can become exhausting. There’s a sense of hypervigilance that creeps in, where your mind is always scanning: Is this a safe place? Do I have what I need? Am I going to be okay today?

These worries shape your internal world. Many people describe feeling emotionally worn down, not because of one big moment but due to the ongoing drip of uncertainty. Small social interactions like having dinner with friends or commuting to work can take immense courage. And when others don’t see what you’re dealing with, it can feel like your reality is being erased. Sometimes, the emotional toll of UC feels heavier than the physical one.

This kind of emotional burden deserves attention and care. You’re not weak for feeling this way, you’re human. I know what it’s like to carry these emotions quietly, to wonder if anyone truly sees the effort it takes to keep going. And what you’re carrying is heavy, even when you’re making it look easy.

Recognising these feelings is an important step towards managing your overall well-being. If you’re not already part of a support community, the Well Now community can be a reassuring place to connect with others who really understand. Online communities, counselling, and even small daily journaling can all help validate and lighten the mental load.

UC can shape how you see yourself. This shift can be a wake-up call: an invitation to slow down, tune in, and redefine health from the inside out. The journey becomes one of rebuilding trust with your body and compassion toward your experience. Self-kindness becomes the medicine. Acceptance becomes the anchor.

What It Feels Like Inside the Body

The Pain, the Urgency, the Exhaustion

Physically, UC symptoms can be unpredictable and distressing. During flare-ups, you might experience sharp abdominal pains, cramping, bloating, and frequent, urgent trips to the bathroom. This urgency can dominate your thoughts, making daily tasks like grocery shopping or socialising feel daunting. The fear of having an accident in public can become a barrier to leaving the house altogether. Many people begin to feel trapped between needing rest and longing for things to go back to ‘normal’.

If you’ve ever asked where Ulcerative Colitis pain is felt, the answer varies, but most commonly, UC shows up in the lower part of the colon first (the rectum and left side) so most people feel it low down in the abdomen, often on the left side or just above the pubic bone. That can feel like cramping, heaviness, sharp pain, or a constant pressure that makes you feel like you need to go, even when your bowels are empty.

But it doesn’t stop there. Some people feel it in waves across the whole belly if the inflammation has spread. And because it’s not just physical, UC can also show up as fatigue, brain fog, joint aches, or skin issues. It’s inflammation, microbiome imbalance and a damaged gut lining and that can be felt everywhere, not just in one spot.

UC doesn’t have a clear off switch, and that ongoing unpredictability wears people down. One day, your energy is manageable, and the next, you’re curled up in bed, not because you want to be but because you have to be. This tug-of-war between wanting to live fully and needing to care for your body can feel emotionally and physically frustrating.

Fatigue is a common yet often overlooked symptom. It goes far beyond the kind of tiredness that a good night's sleep can fix. Many describe it as a heaviness, a deep weariness that makes even simple tasks feel Herculean. In my book, I explain how poor gut function can impair nutrient absorption and disrupt sleep, two key factors that often contribute to this kind of relentless fatigue.

There’s also an emotional fatigue that sets in from constantly explaining yourself. Trying to help others understand that “tired” doesn’t quite cover it, that rest doesn’t always lead to recovery, and that your body sometimes feels like it’s running on empty despite your best efforts.

Because these symptoms fluctuate, it becomes challenging to plan ahead or feel confident about engaging in everyday activities. Over time, this unpredictability can chip away at your sense of freedom. Even joyful events like a wedding, a weekend getaway, or a birthday dinner can come with hidden stress because of the “what ifs.”

The toll isn’t only in your gut. It’s in your nervous system, your heart, and your sense of security in your own skin. That’s why approaches that look at the whole person, supporting your body, mind, and emotional well-being, can be so essential. They remind you that even though the symptoms are physical, the healing needs to be holistic.

Learn more about a natural approach to managing Ulcerative Colitis here.

Navigating Life with UC - The Constant Mental Calculus

Will There Be a Toilet There?

Life with UC often requires meticulous planning: Where's the nearest restroom? How long is the car journey? Can I eat at this restaurant? Even casual invitations can trigger a mental checklist of risks versus rewards. Over time, these seemingly minor decisions pile up, causing chronic stress and fatigue.

There’s also the added burden of unpredictability. Plans can shift at the last minute depending on how your body feels that day. What was supposed to be a fun day out might be abandoned in favour of staying close to a trusted bathroom. The idea of spontaneity, once a source of joy, can now feel risky and draining. When does Ulcerative Colitis occur? Often, it’s when you least expect it, which is what makes planning so important.

Even sitting in a meeting, attending a movie, or taking public transport can become an exercise in tension management. You might find yourself constantly scanning your environment, subtly planning your exit route, just in case.  Research by the Mayo Clinic highlights that quality of life can significantly suffer because of these daily calculations and concerns. Acknowledging this mental load is vital because it's taxing, and it deserves your compassion and attention.

Many people find it helpful to carry a “just-in-case kit”, a change of clothes, wipes, medication, snacks, and electrolyte sachets. These small preparations can soften the anxiety of going out into the world.

You’re allowed to honour your limits and create routines that make you feel safe. That might mean saying no to events without guilt, choosing venues with easy access to restrooms, or taking extra time to prepare before leaving the house. These are acts of care, not weakness. They’re part of a thoughtful, courageous way of living with UC.

Listening to Your Body, One Cue at a Time

Though challenging, UC often shifts how you relate to your body. What may have once felt automatic, like eating, exercising, or planning a day out, becomes more conscious. With time, many people learn what triggers symptoms, what soothes discomfort, and how to balance rest and activity. That learning process is deeply personal and often nonlinear. Some days, your body will respond well to foods or activities that flare you up on others. This is why flexibility, patience, and curiosity are essential tools in your healing kit.

There is something empowering in gaining these insights. Small adjustments such as a calming meditation practice, a gentle yoga routine, an anti-inflammatory approach to eating can lead to big changes in how you feel. Moderate movement like walking or yoga can help reduce inflammation, improve digestion, and support microbiome balance.

Learning to listen to your body doesn’t always mean slowing down. Sometimes, it means becoming more attuned to what fuels you and what drains you. This might include noticing how your body reacts to stress, how you feel after eating certain foods, or how movement changes your energy levels. Keeping a journal can be a helpful way to track these observations, allowing patterns to emerge gently over time.

It also means learning to trust that your body is doing its best even when it’s struggling. That trust doesn’t develop overnight, especially after years of discomfort or disappointment. But bit by bit, through supportive habits and small wins, you can rebuild that connection.

You might also want to explore some of the principles of integrative care and functional nutrition, as discussed by experts at places like the Cleveland Clinic Center for Functional Medicine. These approaches often focus on the root causes of inflammation, helping you to make informed choices that support your body’s unique needs.

Most importantly, remember this: your body is speaking to you not to punish or betray you but to guide you. I’ve found that when I listen, my body offers clues and wisdom. Even on the tough days, that inner dialogue is still worth listening to.

Everyday Practices That Support Healing

• Stay hydrated: Dehydration worsens fatigue and flare-ups. Keep water and electrolyte drinks on hand.

• Move gently: Try 15–30 minutes of walking daily. Yoga and stretching are kind to your gut and nervous system.

• Prioritise rest: Naps and early bedtimes, especially during flare-ups, support the body’s natural recovery process.

• Embrace calming rituals: Breathing exercises, journaling, or soft music can help ease stress and settle digestion.

FAQs

What does a UC flare-up feel like?

A UC flare-up typically includes symptoms like abdominal pain, urgent diarrhoea, fatigue, and sometimes bleeding. It feels unpredictable and exhausting.

What Causes Ulcerative Colitis Flare-Ups?

There’s no single cause for UC flare-ups, but common triggers include stress, food sensitivities, changes in medication, hormonal shifts, and infections. Sometimes, they happen without warning. Tracking your symptoms and routines can help you identify patterns over time. It’s important not to blame but, instead, to learn to understand and support your body.

How do I explain UC to friends and family?

Keep it simple and honest. Explain that UC is an invisible, chronic illness causing inflammation and discomfort, affecting daily activities unpredictably. You might say something like, "Some days I feel okay, other days my gut flares up and it’s like my body hits pause. I’m still me, it just means I have to manage things a little differently."

If you’d like to give them something to read, the Crohn’s & Colitis Foundation has helpful resources for families and caregivers. And dare I say - my book "Well Now: Reclaim Your Life from Ulcerative Colitis" (Amazon) has helped many a parent or partner better understand the journey their loved one is travelling.

Will Ulcerative Colitis Go Away?

Ulcerative Colitis is a chronic condition, which means it doesn’t currently have a cure. But many people do experience long periods of remission, myself included. With a supportive mix of medical care, lifestyle adjustments, and emotional well-being, it is possible to live well and feel better in your body.

What Ulcerative Colitis Can Lead To

If it is left unmanaged, UC can lead to complications like anaemia, weight loss, and inflammation in other parts of the body. It may also increase the risk of colon cancer. This is why it is so important to schedule regular checkups and screenings. Being informed and proactive empowers you to stay ahead of your health.

You Are Not Alone in This

Living with UC is undeniably challenging, but please remember this: you're stronger than you realise. Strength doesn’t always look like pushing through. Sometimes, it looks like resting when you need to. Sometimes, it’s saying no, asking for help, or showing up with honesty about what you’re going through. I’ve had to learn that kind of strength myself.

Healing doesn’t always follow a straight line, and there will be good days and harder ones. It’s okay to take it day by day or even hour by hour. You are allowed to have mixed feelings, to feel frustrated or hopeful or numb. You are navigating something that takes resilience, creativity, and compassion. And you’re doing it, even when it feels like you’re not.

You don’t have to have it all figured out. You don’t need to do it all alone. It doesn’t matter if you’re just beginning to navigate a diagnosis or you’ve been living with UC for years; every step you take in understanding your body is something to be proud of. The path can be winding, but it’s still forward.

And remember, you don’t have to be perfect. There were times when I needed to pull back, to cancel plans, or to simply rest, and those were healing too. 

There’s a community here at Well Now that gets it. We believe in holding space for the full picture, the questions, the setbacks, the quiet wins, and the days that feel impossibly hard. You are welcome here exactly as you are.

Feel free to explore more resources, stories, and tips here on Well Now. Your journey matters, and together, we can move toward better health and brighter days.