When Kids Get Ulcerative Colitis: What Every Parent Should Know

Introduction

When your child is diagnosed with Ulcerative Colitis, it can feel like the floor’s just dropped out from beneath you.

I’ve spoken to many parents who describe it as a mix of shock, confusion, and heartbreak. You want answers. You want a plan. And most of all, you want to know that your child is going to be okay.

Ulcerative colitis (UC) is a form of inflammatory bowel disease (IBD) that causes inflammation in the colon, leading to symptoms like abdominal pain, diarrhoea, fatigue, and blood in the stool. It’s often thought of as an adult condition, but children get it too. In fact, up to 25% of people with IBD are diagnosed before the age of 20.

If you’re reading this as a parent or caregiver, please know: you’re not alone. This isn’t your fault. And while there’s no one-size-fits-all answer, there is support. There are tools that can help. And there are so many ways to help your child live a full, joyful life.

In this blog, I’ll walk you through some of the most common questions and concerns I hear from parents: What does pediatric UC look like? How do you navigate school, food, and flare-ups? How can you help your child feel safe in their body? And just as importantly, how do you look after yourself, too?

Let’s take it one step at a time.

What Is Ulcerative Colitis in Children?

When we think of chronic illnesses in kids, Ulcerative Colitis probably isn’t the first that comes to mind. But pediatric UC is very real and more common than you might expect.

Understanding the Diagnosis

Ulcerative Colitis is a form of Inflammatory Bowel Disease (IBD) that affects the large intestine (colon). It causes ongoing inflammation and tiny sores, or ulcers, in the lining of the colon. This leads to symptoms like diarrhoea, rectal bleeding, cramping, and an urgent need to use the bathroom. In children, it can also affect appetite, growth, mood, and energy levels.

You might hear the term “pediatric IBD,” which includes both Crohn’s disease and Ulcerative Colitis. While there are many similarities between them, UC is specifically limited to the colon and rectum, and it tends to affect the innermost lining of the bowel.

What makes pediatric UC different from adult-onset UC isn’t just the age; it’s how the disease behaves. Children are more likely to experience extensive disease (affecting the whole colon) and may need more intensive treatment early on. But they also have growing bodies, adaptable routines, and a remarkable capacity for resilience.

And yes, IBD is different from IBS. That’s a question that comes up a lot. IBS (Irritable Bowel Syndrome) doesn’t involve inflammation or cause physical damage to the gut. UC, on the other hand, is an autoimmune condition that does involve inflammation and often requires more serious medical care.

How It’s Diagnosed in Kids

Getting a diagnosis can feel like a whirlwind. For many families, it starts with a lingering stomach bug that never really goes away, or strange symptoms that don’t add up. You might notice your child going to the bathroom more often. You might spot blood in the toilet. Maybe they start losing weight or seem unusually tired, no matter how much they sleep.

Doctors will usually start with a physical exam and ask questions about your child’s symptoms, health history, and family background. From there, they may order:

• Blood tests (to look for signs of inflammation or anaemia)

• Stool tests (to rule out infections or parasites)

• Imaging tests like an ultrasound or MRI

• Endoscopy or colonoscopy (to see what’s happening inside the gut and take tissue samples)

  
  

That last one can sound scary. But it’s often done under sedation, and it gives your care team the clearest picture of what’s going on. It’s one of the most important steps in confirming a UC diagnosis.

And if you’re feeling overwhelmed by all the medical language and appointments, that’s completely normal. Try to take it one appointment, one test, one conversation at a time. You don’t have to understand everything right away, and you’re allowed to ask as many questions as you need.

Living With Pediatric UC: What Changes, What Doesn’t

When your child is first diagnosed with UC, it’s easy to start seeing everything through that lens. What will school look like now? Can we still go on holiday? Is soccer practice too much?

These are all valid questions. But here’s something I often remind parents: life doesn’t stop with an IBD diagnosis. It just shifts. And with the right support, your child can still do so many of the things they love.

Day-to-Day Life with UC

School Life

One of the first big adjustments is figuring out how UC fits into school life. Bathroom urgency, fatigue, and unpredictable flares can make a typical school day more complicated.

Some tips that help:

• Speak to your child’s teacher or principal early on.

• Arrange a bathroom pass or a seat near the door.

• Provide a note from your child’s doctor explaining their needs (many schools will require this for flexibility).

• Plan ahead for absences; having a system in place for catching up on work makes it less stressful for everyone.

  
  

For younger kids, it can be helpful to have a “care pack” in their schoolbag: extra underwear, wet wipes, hand sanitiser, and maybe a change of pants, just in case.

Social Life and Friendships

Birthday parties, sleepovers, and school camps might suddenly feel fraught with anxiety. Will there be safe food? Will they have access to a bathroom? What if something goes wrong?

The key is preparation and honest conversations. If your child is old enough, involve them in making a plan. Let them know it’s okay to say no to things, but also okay to say yes with backup.

With time, many children become great self-advocates. They learn to speak up for their needs, explain their condition in simple terms, and find ways to feel included, on their own terms.

Siblings and Family Dynamics

It’s not just the child with UC who’s affected. Siblings can feel confused, left out, or even resentful. You might find yourself stretched thin, juggling appointments and extra care while trying to keep everything else afloat.

Some helpful ideas:

• Make space for siblings to talk and ask questions.

• Create small one-on-one rituals with each child (even if it’s just a walk or bedtime story).

• Involve the whole family in learning about UC, so it becomes something everyone understands, not a secret or source of tension.

  
  

This is a season that asks a lot of you. But many families find that they also grow stronger, more connected, and more compassionate through it.

Emotional Impact on Children

We often focus so much on the physical symptoms of UC that the emotional weight can go unnoticed, especially in children, who may not yet have the words to express what they’re feeling.

But just like adults, kids with chronic illness can experience fear, frustration, shame, and sadness. And they feel it deeply, even if they don’t say it out loud.

What Your Child Might Be Feeling

Some children become more anxious or withdrawn after a diagnosis. Others might act out. It’s not unusual for a child to say things like “Why me?” or “This isn’t fair.” They might worry about having an accident at school, feel embarrassed by their symptoms, or start to see their body as a problem.

Teenagers, especially, might struggle with body image, social comparison, or the sense that they’re somehow “different.” They might resist talking about their condition or ignore it altogether.

And while it can be hard to hear your child say they’re scared or angry, allowing those feelings to exist is an important step in helping them cope.

Talking About UC in Age-Appropriate Ways

It’s okay if you don’t have all the answers. Your child doesn’t need perfection. What they need most is honesty, reassurance, and your calm presence.

Some suggestions:

• For younger children: Use simple explanations. “Your tummy gets sore because there’s a bit of confusion in your gut. Your medicine helps calm it down.”

• For older children: Be honest about the diagnosis and the plan. Let them ask questions and share their worries, even the awkward or scary ones.

• Use books or drawings to help explain things visually (there are great IBD resources made just for kids).

• Validate their feelings: “It makes sense you’re upset. This is a big thing to manage.”

• Model your own coping: You don’t have to pretend it’s easy. It’s okay to say, “This is hard, but we’ll figure it out together.”

  
  

Professional Support Can Help

There’s no shame in reaching out for extra support. A child psychologist or play therapist who understands chronic illness can be an incredible ally, not just for your child, but for you as a parent, too.

Support groups for young people with IBD can also help kids feel less alone. Hearing from others who get it, that it’s normal to feel fed up, scared, or just plain over it, can be incredibly grounding.

How to Support Your Child (and Yourself)

There’s no handbook for parenting through chronic illness. But you don’t need to get it perfect, you just need the right tools, a little support, and permission to go gently.

Practical Tips for Parents

Track Patterns

A simple symptom and food diary can help spot flare triggers and guide conversations with your care team.

Build a Care Team

A supportive GP, gastroenterologist, dietitian, and child psychologist can make all the difference. You don’t need to do this alone.

Simplify Medication

Make taking meds less stressful with routines, or chewable alternatives (check with your doctor).

Rest and Gentle Movement

Prioritise rest during flares. When energy allows, light movement, like walking or stretching, can help with mood and digestion.

Prep Together

Let your child pack a “comfort kit” for appointments: a toy, book, headphones, or snack. Feeling prepared can reduce fear.

Nutrition for Kids with UC

There’s no universal “UC diet,” especially for growing bodies. But here are some basics:

• During flares, stick to bland, low-fibre foods like mashed potatoes, soup, and rice.

• In remission, slowly bring back variety, watching what feels okay.

• Avoid obvious irritants like fizzy drinks or ultra-processed snacks when possible, but don’t stress over the occasional treat.

Lunchbox Tip: Mild wraps, boiled eggs, soft fruit, or plain yoghurt (if tolerated) are safe staples. Keep meals simple, soothing, and enjoyable.

The Parent Journey: Managing Fear, Fatigue, and Hope

When your child is diagnosed with something like Ulcerative Colitis, it can feel like your entire world shifts. You carry the weight of their pain, the logistics of their care, and the emotional toll of trying to stay strong when you’re running on empty.

The Emotional Load

It’s normal to feel grief, guilt, and fear in waves. You might find yourself lying awake at night wondering if you missed a symptom earlier. Or obsessing over what your child eats. Or quietly panicking about what the future holds.

You’re not weak for feeling those things. You’re human. And you’re showing up every day for someone you love.

Some parents describe it as “living in hypervigilance mode”, always watching, always anticipating. It’s exhausting. And if that’s where you are right now, you’re not failing. You’re doing your best in a tough season.

Finding Moments of Relief

You need support, too. That might look like:

• Talking to a therapist or counsellor.

• Joining a support group (online or in-person).

• Letting a trusted friend bring dinner or sit with your child while you go for a walk.

• Saying no to things that drain you, and yes to things that refuel you, even briefly.

  
  

Small acts of care for yourself aren’t selfish. They’re necessary. You cannot pour from an empty cup, and your child needs you well.

Holding Hope

It’s easy to feel like everything is uncertain. But here’s what’s also true: many kids with UC go on to live full, vibrant lives. They learn to adapt. They grow strong in ways you couldn’t have imagined. And they take their cues from you.

You don’t have to pretend everything’s fine. But if you can hold space for both the hard and the hopeful, you’ll help your child do the same.

You’re not alone. And you’re doing better than you think.

Frequently Asked Questions

Can children outgrow Ulcerative Colitis?

No, UC is a lifelong condition. But with the right care and support, many children go into remission (where symptoms disappear for long periods). The goal is long-term management and a good quality of life, not just symptom control.

Is UC genetic?

There’s no single “UC gene,” but family history does play a role. If a close relative has IBD, a child may have a slightly higher risk. That said, many kids with UC have no family history at all.

Will my child need surgery?

Most children respond well to medication. Surgery is only considered in severe cases where symptoms can’t be controlled or if complications arise. If that ever becomes part of the conversation, your medical team will walk you through all the options carefully.

Can my child still go to school, play sports, and have a normal life?

Yes, absolutely. They might need some adjustments during flares, but kids with UC can attend school, join sports teams, go to birthday parties, and travel. With a supportive plan in place, life doesn’t have to stop.

What’s the long-term outlook?

Most children with UC grow up to live full, healthy adult lives. There may be bumps along the way, flare-ups, med changes, and growth delays. but with proper care and early intervention, kids can thrive.

Where to Turn for Help

You don’t have to do this alone, and you don’t have to have all the answers today. These resources can offer information, support, and community as you navigate this with your child:

Helpful Resources

• Crohn’s & Colitis Foundation – Pediatric IBD: Offers toolkits, videos, and a “Power of Two” mentorship program for parents.

• Mayo Clinic – Ulcerative Colitis in Children: Trusted medical guidance on symptoms, diagnosis, and treatment options.

• Well Now Blog: Explore more of my blogs about UC triggers, food, lifestyle, and emotional

• wellbeing.

  
  

If your child is struggling emotionally, speak to your healthcare provider about referring them to a child psychologist or a play therapist familiar with chronic illness.

A Final Word

If you’ve made it this far, I just want to say you’re doing an incredible job. Even if it doesn’t always feel like it.

Parenting a child with Ulcerative Colitis is demanding, emotional, and deeply human. There will be days when it feels like too much. And days where things feel okay again. Sometimes both, in the space of an afternoon.

But you are learning. Adapting. Advocating. And most importantly, loving your child through it all.

There’s no perfect way to do this. There’s just your way and the gentle reminder that you don’t have to figure it all out alone.