Joint pain and IBD: Why does my child’s body hurt?

Is your child complaining of sore knees, ankles, wrists or other joints? Joint pain can occur in children with IBD, but there are many possible reasons for it. Here’s what parents should know.

When your child has inflammatory bowel disease (IBD), you probably spend a lot of time thinking about their stomach and bowel symptoms.

But IBD can affect more than the digestive system.

Some children with Crohn’s disease or ulcerative colitis experience joint pain, stiffness or swelling. These symptoms can sometimes be related to inflammation associated with IBD.

Other times, joint pain may have nothing to do with IBD at all.

So how do you know when your child’s sore joints need to be checked?

🦴 Can IBD cause joint pain?

Yes.

Joint problems are one of the extraintestinal manifestations of IBD.

“Extraintestinal” simply means something related to IBD that happens outside the digestive tract.

Joint symptoms can include:

• Pain or aching in a joint

• Stiffness

• Swelling

• Warmth around a joint

• Difficulty moving a joint normally

• Pain that is worse after resting

• Morning stiffness

• Pain that comes and goes

Joint symptoms can occur in children with both Crohn’s disease and ulcerative colitis.

However, having IBD doesn’t automatically mean that every episode of joint pain is caused by IBD.

Children can also develop joint pain from injuries, growing, infections, physical activity and other conditions.

That’s why it’s important to tell your child’s healthcare team about new or persistent joint symptoms.

🔥 What does IBD-related joint pain feel like?

There isn’t one specific type of joint pain associated with IBD.

Some children may experience joint pain and stiffness, while others may have visible swelling.

The symptoms can affect different joints, including:

• Knees

• Ankles

• Hips

• Wrists

• Elbows

• Fingers

• Toes

Some children have symptoms in one joint, while others experience pain in several joints.

Your child may describe it as aching, stiffness, soreness or simply say:

“My knee hurts.”

You may notice changes before your child tells you.

For example, they might start avoiding stairs, stop running around, walk differently or complain that they are stiff when they get out of bed.

🌅 Why is morning stiffness important?

One thing worth paying attention to is when your child’s joint pain happens.

Inflammatory joint pain can sometimes cause stiffness after periods of rest, including first thing in the morning.

You might notice that your child:

• Takes longer to get moving in the morning

• Says their joints feel stiff after sleeping

• Walks differently when they first get up

• Improves after moving around

• Has recurring stiffness after sitting for a long time

Tell your child’s gastroenterologist if you notice this pattern.

It doesn’t necessarily mean your child has an IBD-related joint condition, but it is useful information for their healthcare team.

🔄 Can joint pain happen during an IBD flare?

It can.

For some children, joint symptoms can occur alongside active bowel inflammation.

This means you may notice joint pain at the same time as symptoms such as:

• Diarrhoea

• Abdominal pain

• Blood or mucus in the stool

• Urgency

• Fatigue

• Reduced appetite

• Weight loss

For some children, however, joint symptoms don’t necessarily follow the same pattern as their bowel symptoms.

Your child could have very few digestive symptoms but still experience joint problems.

This is one reason it’s important to mention joint symptoms even when your child’s IBD seems well controlled.

🩺 What should I tell our gastroenterologist?

Try to be as specific as possible.

Instead of simply saying:

“Their joints hurt.”

Tell the doctor:

• Which joints hurt

• When the pain started

• Whether it is one joint or several

• Whether there is swelling

• Whether the joint feels warm

• Whether your child has morning stiffness

• How long the stiffness lasts

• Whether movement makes it better or worse

• Whether it is affecting walking, running or sport

• Whether the pain happens during an IBD flare

• Whether your child has had a recent infection or injury

• Whether the pain is getting better, worse or staying the same

If you can, keep a simple record for a few days.

You could write:

Monday: Right knee sore after school. No swelling.

Tuesday: Stiff getting out of bed. Improved after breakfast.

Wednesday: Both ankles sore after sport.

This can give your child’s doctor a much clearer picture.

📸 Should I take photos?

If you notice visible swelling, redness or a change in the appearance of a joint, taking a photograph can sometimes be useful.

Joint swelling may come and go, so a photo can help show your child’s healthcare team what you noticed.

You can also make a note of:

Date + joint affected + swelling + pain + stiffness + activity + bowel symptoms.

You don’t need to track every little ache.

Focus on symptoms that are persistent, recurring or affecting your child’s normal activities.

🏃 What about sport and exercise?

In most cases, children with IBD should be encouraged to stay active when they feel well.

Physical activity can be an important part of a child’s health and wellbeing.

However, if your child is experiencing significant joint pain, swelling or difficulty moving a joint, speak with their healthcare team about what activities are appropriate.

Don’t push your child through significant pain just because they are worried about missing sport.

Their doctor can help determine whether they need to modify their activity while the joint problem is assessed.

💊 Could the medication be causing the pain?

There are many possible causes of joint pain, so it is important not to assume that IBD itself is responsible.

Some medications can also have musculoskeletal or joint-related side effects.

If your child develops new joint pain after starting or changing a medication, tell their doctor.

Don’t stop an IBD medication without speaking to your child’s healthcare team first.

Your doctor can consider the timing of the symptoms alongside your child’s medication, IBD activity and other possible causes.

👩‍⚕️ Will my child need to see a rheumatologist?

Not necessarily.

Your child’s gastroenterologist may assess the symptoms first and decide whether further investigation is needed.

If there are ongoing or unusual joint symptoms, they may recommend assessment by a paediatric rheumatologist.

A rheumatologist is a doctor who specialises in conditions affecting the joints, muscles and immune system.

Your child’s gastroenterologist and rheumatologist may work together if your child needs care from both specialties.

🧪 Will my child need more tests?

That depends on your child’s symptoms.

Your healthcare team may consider:

• A physical examination

• Blood tests

• Imaging such as an ultrasound or MRI

• Assessment by a rheumatologist

• Other investigations depending on the symptoms

There isn’t one test that can tell you whether every episode of joint pain is caused by IBD.

Your child’s doctor will look at the whole picture, including their IBD history, symptoms, examination and test results.

🚩 When should I contact the doctor?

Contact your child’s IBD team or doctor if joint pain:

• Keeps coming back

• Lasts for more than a short period

• Is getting worse

• Is associated with swelling

• Causes morning stiffness

• Makes walking difficult

• Stops your child participating in normal activities

• Is affecting sleep

• Happens alongside worsening IBD symptoms

• Starts after a medication change

• Is affecting several joints

Seek urgent medical attention if:

Your child has a joint that is very painful, significantly swollen, hot or red, particularly if they also have a fever or are very unwell.

A hot, swollen joint can have causes that need prompt medical assessment, including infection.

If you’re unsure how urgently your child needs to be assessed, contact your healthcare provider for advice.

💛 Don’t assume it’s “just growing pains”

It’s easy to hear your child complain about sore legs and assume it’s growing pains.

Children do experience ordinary aches and pains, and not every ache is related to IBD.

But if your child has IBD and their joint pain is persistent, recurrent, swollen or affecting their normal activities, it’s worth mentioning to their healthcare team.

You know your child better than anyone.

If something feels different from their usual aches and pains, tell their doctor.

📝 Questions to ask at your child’s appointment

If joint pain has become a concern, you could ask:

• Could this joint pain be related to my child’s IBD?

• Does the pattern sound inflammatory?

• Could it be related to a medication?

• Should we have any tests?

• Does my child need to see a rheumatologist?

• Should my child continue their usual sport and activities?

• Is there anything we should avoid?

• What symptoms should make us contact you?

• Could the joint symptoms be a sign that my child’s IBD is becoming active?

• What should we do if the joint pain gets worse?

❤️ The important thing to remember

Joint pain can be an unexpected part of living with IBD, and it can be worrying when your child suddenly starts complaining about sore joints.

But joint pain does not automatically mean that your child’s IBD is getting worse.

There are many possible causes, and your child’s healthcare team can help work out what is happening.

Keep an eye on the pattern, write down anything unusual and let your child’s IBD team know about persistent or recurring symptoms.

You don’t need to diagnose the cause yourself.

Your job isn’t to know exactly what the pain means — it’s to notice the change and tell the people who can help.