Keeping a symptom and flare diary

When your child has IBD, it can sometimes be difficult to remember exactly what happened over the past few days or weeks.

Was the diarrhoea getting worse before the tummy pain started?

How many times were they going to the toilet?

When did the blood first appear?

Were they more tired than usual?

Did they miss school?

These details can be really helpful when you’re talking to your child’s IBD team.

A simple IBD symptom and flare diary can help you spot changes, identify patterns and give your child’s healthcare team a clearer picture of what is happening.

It doesn’t need to be complicated.

📝 What is an IBD symptom diary?

An IBD symptom diary is simply a record of your child’s symptoms over time.

You might use:

• A notebook

• A printed IBD flare tracker

• A notes app on your phone

• A spreadsheet

• A symptom-tracking app

There is no single right way to do it.

The best diary is one that is simple enough for you to actually keep using.

Why keep an IBD flare diary?

Symptoms can change from day to day.

When you’re sitting in an appointment several weeks later, it can be surprisingly difficult to remember exactly how your child was feeling.

A diary can help you:

• Notice early changes in symptoms

• Identify patterns

• Recognise possible IBD flare symptoms

• Record how long symptoms have lasted

• Remember questions for your child’s IBD team

• Provide useful information during appointments

• Track changes after treatment

• See whether symptoms are improving or getting worse

• Keep important information in one place

It can also help your child become more aware of their own symptoms as they get older.

🚽 Track bowel movements

For many children with Crohn’s disease or ulcerative colitis, bowel changes can be an important part of recognising an IBD flare.

You could record:

• How many times your child had a bowel movement

• Whether it was formed, loose or watery

• Whether there was urgency

• Whether your child woke overnight to use the toilet

• Whether there was mucus

• Whether there was blood

• Whether an accident occurred

You don’t need to describe every bowel movement in great detail.

A simple system can be enough.

For example:

Morning: 2 loose stools, urgency, no blood

Afternoon: 1 loose stool, no urgency

Evening: 2 watery stools, small amount of blood

Over time, this can make changes much easier to see.

🩸 Keep track of blood and mucus

If your child has blood or mucus in their stool, record when you noticed it and whether it is changing.

You might record:

Blood: none / small amount / more noticeable

Mucus: none / small amount / noticeable

If bleeding becomes heavy or your child appears seriously unwell, don’t wait to complete the diary. Seek medical advice or urgent medical care as appropriate.

🤕 Record tummy pain

Pain can be difficult for children to describe, especially younger children.

Try to record:

• Where the pain is

• When it happens

• How long it lasts

• Whether it happens before or after a bowel movement

• Whether eating seems to affect it

• Whether it wakes your child at night

• Whether it stops them doing normal activities

For older children, you could use a simple 0–10 pain scale.

For younger children, words may work better:

No pain → a little sore → quite sore → very sore

The goal isn’t to create a perfect medical measurement. It’s to help your child explain what they are experiencing.

😴 Don’t forget fatigue

Fatigue is a common symptom of IBD and can be easy to overlook.

Your child’s diary could include:

• Energy level

• Sleep quality

• Whether they needed a daytime nap

• Whether they could participate in normal activities

• Whether they were too tired for school or sport

You might simply use:

Energy: 😊 usual | 😐 lower than usual | 😴 very tired

A significant change in energy can be useful information for your child’s healthcare team.

🍽️ Track appetite and eating

You don’t need to record every food your child eats unless their healthcare team has specifically asked you to.

Instead, look for significant changes.

For example:

• Normal appetite

• Eating less than usual

• Skipping meals

• Feeling sick

• Pain when eating

• Avoiding certain foods

• Struggling to finish meals

If your child is consistently eating much less, losing weight or struggling with growth, let their IBD team know.

💧 Keep an eye on fluids

During diarrhoea or vomiting, hydration becomes particularly important.

You could record whether your child is:

• Drinking normally

• Drinking less than usual

• Vomiting fluids

• Passing urine normally

• Showing signs of dehydration

If your child cannot keep fluids down or you are concerned they are becoming dehydrated, contact their healthcare team or seek urgent medical care depending on the severity.

🌡️ Record other symptoms

IBD doesn’t only affect the digestive system.

Depending on your child’s experience, you may want to record:

• Fever

• Joint pain or swelling

• Mouth ulcers

• Skin changes

• Eye symptoms

• Headaches

• Nausea

• Vomiting

• Changes in sleep

• Changes in mood or wellbeing

Not every symptom means your child’s IBD is active.

The purpose of recording them is to give the healthcare team a fuller picture.

💊 Keep track of medications

It can be useful to record your child’s IBD medications alongside their symptoms.

You could note:

• Medication name

• Dose

• Time taken

• Missed doses

• New medications

• Medication changes

• Possible side effects

If your child’s symptoms change after a medication change, having the dates written down can make the timeline much easier to explain.

Don’t stop, start or change your child’s IBD treatment without advice from their healthcare team.

🧪 Record tests and results

You don’t necessarily need to keep every test result in your symptom diary, but having important results together can be useful.

Depending on your child’s care, this might include:

• Blood tests

• Inflammatory markers such as CRP and ESR

• Haemoglobin and iron levels

• Stool tests

• Faecal calprotectin

• Imaging

• Endoscopy or colonoscopy results

Rather than focusing on one result, your IBD team will usually consider results alongside your child’s symptoms, examination, growth and other information.

Keeping a record can help you see how things change over time.

📅 Record school and everyday activities

IBD symptoms can affect your child’s life outside the bathroom.

You could record:

• Days missed from school

• Leaving school early

• Difficulty concentrating

• Missed sport

• Missed social activities

• Sleep disruption

• Needing extra rest

This information can help show how much an IBD flare is affecting your child’s everyday life.

It can also be useful when talking with the school about temporary support.

👀 Look for patterns, not perfection

The purpose of a symptom diary isn’t to create a perfect record.

You’re looking for changes and patterns.

For example, you might notice:

“For three days, she had more frequent diarrhoea and was unusually tired. On day four, blood appeared.”

Or:

“His bowel movements stayed normal, but his appetite and energy gradually dropped over two weeks.”

These patterns can be useful when discussing symptoms with the IBD team.

What if symptoms come and go?

That’s common.

Your child might feel completely well one day and have several symptoms the next.

Try to keep recording even when things improve.

Having a record of both good days and difficult days can help show how symptoms are changing over time.

It can also help you recognise your child’s individual early warning signs.

📱 A simple daily template

You don’t need a complicated chart.

You could use something like this:

For some children, a quick morning and evening check is enough.

👧 Let your child be involved

As children get older, encourage them to take an active role in tracking their symptoms.

A younger child might use pictures or simple scales.

An older child or teenager may prefer to use their phone.

This can help them gradually learn:

• What their normal symptoms are

• What changes to look for

• How to describe symptoms

• When to tell an adult

• When to contact their IBD team

It’s also an important step towards becoming more independent with their IBD treatment and healthcare.

🚨 Don’t wait for the diary

A symptom diary is useful for tracking information, but it should never delay getting help.

If your child develops severe abdominal pain, heavy bleeding, significant dehydration, repeated vomiting, fainting, extreme weakness, a swollen abdomen or appears seriously unwell, seek urgent medical attention.

You don’t need to wait until you’ve completed a week’s worth of symptoms.

The diary is a tool — not a substitute for medical care.

How long should we keep one?

You don’t necessarily need to keep a detailed diary every day forever.

You may find it particularly useful:

• When your child is newly diagnosed

• When symptoms are changing

• During a suspected IBD flare

• After starting or changing treatment

• Before an IBD appointment

• When your child’s symptoms are difficult to describe

• When you’re trying to understand a new pattern

Once things are stable, you may only need to record changes or unusual symptoms.

Ask your child’s IBD team what information they find most useful.

❤️ You don’t have to track everything

It’s easy for an IBD diary to become another thing on your already long parenting list.

Keep it simple.

You don’t need to record every snack, every trip to the toilet or every little tummy ache.

Focus on the information that helps answer:

What’s changed?

How long has it been happening?

How is it affecting my child?

Is it getting better or worse?

That information can be incredibly valuable.

A symptom diary can help you feel more prepared

Living with paediatric IBD can sometimes feel unpredictable.

A symptom and flare diary won’t prevent Crohn’s disease or ulcerative colitis symptoms, but it can help you feel more organised when things change.

It gives you something concrete to take to appointments and can help your child’s IBD team understand what has been happening between visits.

Most importantly, it can help you recognise when your child isn’t quite themselves.

You don’t need to be perfect at tracking. You just need to notice the changes that matter.