Paediatric inflammatory bowel disease (IBD) is on the rise. Over the past two decades, its incidence has approximately doubled in the UK, mirroring similar trends across Europe, North America, Asia, and South America. Current estimates suggest around 12 in every 100,000 children under 18 are diagnosed each year, so it’s increasingly likely you’ll see these patients in your practice.
The average age at diagnosis is 11.9 years, placing most cases firmly within the paediatric age group. While IBD can occur at any age, children diagnosed before six years are classified as having Very Early Onset IBD (VEOIBD). These cases often present with more severe disease and are more likely to have an underlying monogenic cause.
Although genetics plays a key role, environmental factors are also thought to contribute. Early antibiotic exposure, diet, and other lifestyle elements may all influence a child’s risk of developing IBD.
Bobby is just like every other 14-year-old boy.
He enjoys hanging out with his friends and playing football for his local team. He lives with his parents and younger sister and has previously been fit and well. No one in his family has a history of gut-related pathology.
Bobby comes to see you; he’s started to experience a nagging left-sided abdominal pain. He’s also been going to the toilet to pass stool.
At first, they were a little more sloppy than normal, but now he is going much more often. Bobby was very good at keeping his symptoms to himself, but today he noted bright red blood in his stool, so he told his mum, who booked a primary care consultation.
What key points should you cover in the history?
Start with open questions to give the child and their family space to share the story in their own words. Listen carefully for details about:
- Onset and duration of symptoms
- Detail about the individual symptoms, e.g. assessment of the quality of stool and abdominal pain
- Specifically enquire about nocturnal symptoms
- What is the patient’s growth like?
- Are there any other symptoms e.g. mouth ulcers, joint/skin/eye problems?
- Has there been any unwell contacts or foreign travel recently?
- What impact are these symptoms having on the patient’s quality of life?
- Ideas, concerns and expectations of the patient and their parent/caregiver.
Bobby has had a few weeks of left-sided abdominal pain that has slowly increased in severity.
It is much worse when he needs to open his bowels and subsides a little once he has.
The stool looks like porridge, and he is opening his bowels 6 times a day, including 1-2 times overnight.
Three months ago, he was passing a sausage stool daily. What worries him most is that he has now seen bright red blood that is mixed in. This was initially present on wiping but is now mixed in.
He is feeling run-down and tired most of the time. Everything is such an effort, including the sports he previously lived for.
On examination, he has mild tenderness in the left side of the abdomen but no hepatosplenomegaly.
He has pale conjunctiva, but no other clinical signs.
What are the differential diagnoses?
- Constipation – The most common reason for rectal blood loss in paediatric patients. Constipation may result in an anal fissure, which can bleed, and overflow stools are often mistaken for diarrhoea. Treatment is usually with laxatives and reassurance. Note it is unlikely that paediatric patients have haemorrhoids!
- Infectious gastroenteritis – Often accompanied by an acute history, fever or recent foreign travel.
- Colitis – Patients with colitis present with loose stools, pain and often blood loss.
- Rectal polyp – Usually painless and wouldn’t cause diarrhoea.
- Allergic colitis – In young children, consider differential diagnoses such as cow’s milk protein intolerance. These patients often have associated faltering growth and diarrhoeal stools.
- Intussusception – Part of the bowel slides over itself like a telescope, causing pain, bleeding, and sometimes vomiting. This tends to occur in toddler or young-aged children or in those with Henoch Schonlein Purpura (HSP)
- Bleeding disorders
What investigations should be sent in primary care?
Faecal calprotectin is a key test when assessing for IBD. While it’s highly sensitive, it’s not very specific — levels can also rise with constipation, infections, or certain medications (such as proton pump inhibitors).
You should also send stool samples for microscopy, culture and sensitivity (MC&S) and virology.
Blood tests can provide further clues. These should include:
- Full blood count (FBC)
- Inflammatory markers: ESR and CRP
- Bone profile (including albumin)
- Liver function tests (LFTs)
- Urea and electrolytes (U&Es)
- Ferritin
In children with IBD, you might find iron deficiency, elevated platelets, low albumin, and raised inflammatory markers.
Bobby’s GP carried out the above tests, which revealed the following:
Hb 92, MCV 76, Ferritin 17, CRP 25, ESR 52, normal UE, LFT and albumin 36.
Normal coagulation profile.
His calprotectin was 3256.
They sent an urgent referral to the local tertiary hospital’s paediatric gastroenterology team. Referral pathways can differ across the country, but when there’s uncertainty about a child like Bobby, no one would fault a clinician for picking up the phone to speak directly with a friendly local paediatrician or gastroenterologist. In this case, the receiving consultant shared the same concerns and arranged for Bobby to be seen in the gastroenterology fast-track clinic the following week.
In some areas, if a child has already been reviewed by a paediatrician with gastroenterology experience, a direct-to-test referral may be accepted — helping to avoid unnecessary delays in diagnosis. And for more severe presentations, children can be admitted straight to the ward for inpatient investigations.
When Bobby arrived at the clinic with his mum, he was quiet and clearly anxious. He didn’t really know what to expect. The consultant welcomed them both, listened carefully as Bobby retold his story, and carried out a full examination — including a perianal inspection, with a chaperone present.
The consultant took time to explain the possible causes of Bobby’s symptoms, including the possibility of inflammatory bowel disease, making sure both he and his mum understood the next steps.
Are there any additional investigations that patients should expect in secondary care?
Yes — once referred to secondary care, children like Bobby often undergo further investigations, including imaging and blood tests.
The most common first step is an abdominal ultrasound. This can identify signs such as bowel wall thickening, free fluid, or enlarged lymph nodes. If there’s any concern, an abdominal X-ray may also be done. This helps assess for features like bowel dilatation, thumbprinting (suggesting thickened haustral folds), or a loss of haustral markings.
If there’s suspicion of small bowel involvement or perianal disease, an MRI scan may be arranged. MRI is particularly useful for identifying conditions such as fistulae, or in children with a history of perianal abscesses.
These investigations help build a fuller picture of what’s going on inside the bowel — an essential step in making an accurate diagnosis and planning the next steps.
Bobby’s gastroenterologist was concerned enough about possible inflammatory bowel disease to arrange an urgent endoscopy.
At the clinic, Bobby and his mum were told what to expect. The procedure would be done under general anaesthetic, usually as a day case, and would involve taking a strong bowel preparation the day before to empty his bowels. He’d also need to fast, following the local hospital’s pre-theatre guidance.
The team explained that two cameras would be used — one passed through the mouth into the upper gut, and another through the bottom into the large bowel. This would allow doctors to examine the bowel lining directly and take biopsies, which are essential for confirming a diagnosis.
Bobby understood that his mum would need to give consent, and the consultant made sure they both knew the potential risks — including bleeding, infection, an incomplete procedure, or, rarely, a perforation.
Two weeks later, Bobby was admitted for the procedure. It went smoothly, with no complications. His endoscopy images — shown on the left below — clearly contrast with normal bowel, pictured on the right.
These endoscopic images contrast starkly with the normal bowel shown for comparison on the right. Bobby has evidence of marked colitis with contact bleeding and ulceration from the transverse colon to the rectum, which was strongly suggestive of ulcerative colitis. He also had gastritis.
What other endoscopic features may be seen in inflammatory bowel disease?
Endoscopy can reveal key differences between ulcerative colitis (UC) and Crohn’s disease, helping to distinguish between the two.
In ulcerative colitis, the inflammation typically starts in the rectum and spreads continuously up the colon. There’s usually a clear transition point between the inflamed and healthy bowel. On endoscopy, you might see oedema (causing loss of the normal vascular pattern), friable mucosa, and contact bleeding – all signs of active inflammation.
In contrast, Crohn’s disease tends to produce patchy inflammation with ‘skip lesions’ – areas of ulceration separated by normal-looking bowel. One classic feature is a ‘cobblestone’ appearance, where raised, nodular mucosa is surrounded by deep ulcers.
Crohn’s is a pan-enteric condition, meaning it can affect any part of the gastrointestinal tract – from mouth to anus. Endoscopy may reveal upper GI ulceration and perianal changes, such as skin tags, fistulae, or abscesses.
Because Crohn’s can be transmural, affecting the full thickness of the bowel wall, patients with severe disease may develop strictures. These narrowings can make it difficult, or even impossible, to advance the endoscope beyond a certain point.
Two weeks after the procedure, Bobby’s biopsies were reviewed by the histopathology team and discussed at the paediatric gastroenterology multidisciplinary team (MDT) meeting. The diagnosis was confirmed: ulcerative colitis.
Under the microscope, the samples showed classic features of the disease — including cryptitis, crypt abscesses, and diffuse, continuous inflammation throughout the mucosa.
Let’s take a moment to consider how Bobby might have felt hearing the news: Ulcerative Colitis.
It’s a big diagnosis — a lifelong condition that will likely require ongoing medication and long-term follow-up. For most teenagers, even talking about poo can be deeply uncomfortable. Now Bobby had to come to terms with a chronic illness that directly affects his bowels.
The news was broken gently, on the ward after his procedure, by his consultant and IBD specialist nurse. To their relief, Bobby seemed to take it in his stride. What helped was having access to clear written information and meeting the IBD nurse, who explained she would remain a point of contact for any questions or concerns in the weeks ahead.
Bobby was also signposted to Crohn’s & Colitis UK, a national charity offering a wealth of information, peer support, and resources to help young people navigate life with inflammatory bowel disease.
What treatment is used for ulcerative colitis?
Treatment for ulcerative colitis depends on the severity of the inflammation.
In mild to moderate disease, many children respond well to 5-aminosalicylic acid (5-ASA) medications such as Mesalazine. This is usually taken orally and is generally well tolerated. For inflammation limited to the rectum (proctitis), suppository formulations can be particularly effective.
In more significant disease, patients often need immunosuppressive therapy. Treatment typically starts with oral steroids, which are gradually weaned to reduce the risk of side effects. To support this, many patients are also prescribed:
- Proton pump inhibitors (PPIs)
- Bone protection (e.g. Adcal D3, a calcium and vitamin D supplement)
It’s important to monitor for steroid-related side effects. This includes checking blood pressure and urine dipsticks to screen for glycosuria, which can indicate steroid-induced hyperglycaemia.
In severe cases — such as during an acute flare — children may require intravenous steroids in hospital for more aggressive control.
In the most severe presentations — such as acute severe colitis — treatment may be escalated early to biologic therapy, sometimes even at the point of diagnosis.
These medications can be administered intravenously, subcutaneously, or orally, depending on the specific agent used. While highly effective, they do carry variable risks and monitoring requirements, which are beyond the scope of this article to explore in detail.
How is the response to treatment monitored in Ulcerative Colitis?
The Paediatric Ulcerative Colitis Activity Index (PUCAI) should be calculated for all patients with a UC flare. Improvement in this score indicates response to treatment, and conversely, failure of improvement in the PUCAI score should trigger an escalation in treatment and consideration of surgical intervention.
Bobby responded quickly to treatment. By day five of intravenous steroids, his PUCAI score had improved to 30. His stools were becoming more formed, less frequent, and no longer contained blood. He was also experiencing very little abdominal pain.
The team — and Bobby’s family — were thrilled with his progress. He transitioned to oral steroids, which would later be gradually weaned, and continued on Mesalazine to help keep his symptoms under control.
Is treatment different in Crohn’s disease?
For children diagnosed with Crohn’s disease, the first-line and safest treatment is often Exclusive Enteral Nutrition (EEN). This involves the child consuming only nutritionally complete liquid feeds — typically for 6 to 8 weeks. EEN not only promotes mucosal healing but also improves the child’s nutritional status.
However, for children who are unable to tolerate EEN, or in cases of severe Crohn’s colitis, steroids may be used to control symptoms in the short term.
Once the disease is under better control, the focus often shifts to immunosuppressive treatments such as Azathioprine or Methotrexate. These help maintain remission and reduce the likelihood of future flare-ups. In children with severe inflammation, extensive disease, or perianal fistulating disease, early use of biologic therapy is often considered.
Starting a child on immunosuppressive medication is never taken lightly. Before treatment begins, patients are screened to ensure immunity to viruses such as hepatitis, HIV, and varicella.
Drugs like Azathioprine and Mercaptopurine work by dampening the immune response, helping to reduce inflammation in the gut. However, this also increases patients’ risk of infection, so regular blood monitoring is essential.
Tests typically include:
- Full blood count (FBC)
- Liver function tests (LFTs)
- Kidney function (U&Es)
- Amylase (to screen for pancreatitis)
These are done more frequently at the start of treatment, with longer intervals once the child is stable.
There are also long-term risks to be aware of, including:
- Skin and cervical cancers
- Lymphoma
- Risks during pregnancy — particularly important to discuss with female patients as they approach adolescence
Azathioprine and mercaptopurine are once-daily oral medications, but it’s important to note they can take up to 3 months to reach full effectiveness.
What follow-up should Bobby expect?
Children with inflammatory bowel disease are followed up regularly by paediatric gastroenterologists or general paediatricians with gastroenterology expertise.
Ongoing monitoring is essential. Faecal calprotectin is commonly used as a non-invasive marker to assess for underlying inflammation and help detect early signs of relapse. These surveillance stool samples are often part of routine care, even when the child is well.
For those taking immunosuppressive medications, regular blood tests are also required to monitor for potential side effects. This includes checking liver and kidney function, blood counts, and drug-specific markers.
Patients and families often remain in close contact with their IBD specialist nurse, who can provide guidance, support, and follow-up between clinic appointments when needed.
Bobby was thrilled with how quickly he’d bounced back after starting treatment. Within weeks of his diagnosis, he was back on the football pitch, doing everything he loved. He chose not to share much about his diagnosis with friends — but that didn’t matter to him. He felt well, and life was back to normal.
A year later, Bobby’s clinical team were just as pleased. His faecal calprotectin had normalised, and his disease was in remission — definitely a moment worth celebrating.
But as time went on, things started to slip. Bobby began missing doses of his Mesalazine, believing he didn’t really need it anymore. He didn’t tell his parents — he didn’t want to let them down. His GCSEs were approaching, and managing IBD wasn’t exactly top of his list. When his specialist nurse asked for a repeat calprotectin sample, Bobby avoided it. He was fine, after all. And besides — it was embarrassing.
But gradually, the symptoms crept back in. Abdominal pain. Loose stools. Urgency. Bobby kept it to himself at first, hoping it would settle. Instead, it got worse.
Within weeks, his parents noticed he was waking at night to use the toilet and had lost his appetite, despite always being a big eater. He’d stopped going to football and was spending more time alone, glued to his PlayStation.
When they finally sat down to talk, the truth came out. Bobby was stooling 8–12 times a day, often with bloody diarrhoea, urgent trips to the toilet, and significant abdominal pain. His PUCAI score was 70 — a clear sign of moderate-to-severe disease activity.
As luck would have it, it was the weekend, and things had escalated. Bobby had developed a fever and started vomiting. His parents took him straight to the emergency department.
Let’s now imagine you’re working in ED when you hear those familiar words….‘can I let you know about someone’ Your mind wonders what the incoming news might be…. sadly, it’s not someone walking in with a massive chocolate cake. Instead, you have a clinical dilemma that requires you to ditch the dreams, engage your brain and find a solution.
You meet Bobby who is almost 16. He explains his background of Ulcerative Colitis and the recent deterioration in his symptoms as detailed above. You learn that he has been refusing his medication recently, reporting that it doesn’t help and he feels rubbish whilst taking it. You suspect he has adopted a ‘head in sand’ approach. His triage observations reveal he is tachycardic at 106bpm with a normal blood pressure and respiratory rate. His temperature is 38.1oC.
You ask Bobby for permission to examine him. He agrees but would rather not lay flat. You find normal breath and heart sounds, dry lips and oral mucosa, capillary refill time of 2 seconds and a soft abdomen but Bobby does seem generally uncomfortable when you examine this area.
You’ve identified the following issues:
- Abdominal pain
- Vomiting
- Signs of dehydration
- Fever
You site a cannula and take off routine bloods. Via the cannula the nursing team give an anti-emetic and IV fluids. You also request an Abdominal X-ray to look for evidence of megacolon.
A lot of patients with IBD experience abdominal pain. Simple measures such as heat packs and paracetamol should be encouraged and NSAIDS should be avoided. It is rare that patients require opioids but these can be used cautiously (0.1mg/kg morphine) as there is a reported risk of facilitating megacolon. Ultimately the pain results from the underlying disease process so it is important to address this. Mebeverine doesn’t usually have a role in the acute colitis phase.
Any patient with a history of IBD, particularly a colitis, is at risk of toxic megacolon. The patients are sick and need to be treated promptly. The assessment at presentation should include an ABCDE assessment with stabilisation. A Paediatric Ulcerative Colitis Activity Index (PUCAI) score should also be calculated for ulcerative colitis patients.
Initial investigations should include:
- FBC, UE, LFT, bone profile, CRP, ESR, amylase and potentially a group and save if history of bleeding.
- Blood culture if febrile.
- Infection screen as appropriate e.g. urine specimen, NPA
- Stools for MC&S, virology and C.Difficile.
- Stool for calprotectin if no recent result.
- Abdominal Xray should be performed in all patients in whom there is a risk of toxic megacolon.
It would be appropriate to liaise with the gastroenterology team (or out-of-hours provision) to discuss this patient acutely. The gastroenterology team will guide you and it is likely they may consider steroids in the presence of an acute severe colitis. If the patient has toxic megacolon it would be sensible to keep them nil by mouth on IV fluids, and IV antibiotics according to trust protocol.
Not all children with inflammatory bowel disease and abdominal pain need an abdominal X-ray (AXR) — pain is a common symptom in IBD, even during milder flares.
However, imaging becomes important when there are concerning clinical features, such as:
- Guarding or peritonism on abdominal examination
- Bilious vomiting
- Signs of a significant disease flare — for example, worsening pain, fever, or appearing systemically unwell
In these cases, an AXR may help identify complications such as toxic megacolon, bowel dilatation, or obstruction.
If you’re unsure whether imaging is needed, it’s always best to liaise early with the gastroenterology team for guidance.
What are the radiological features of toxic megacolon?
In children, toxic megacolon is diagnosed when the transverse colon measures >56 mm, or >40 mm in those under 10 years, in combination with systemic toxicity.
If imaging shows dilated bowel loops, it’s critical to escalate early. Notify the gastroenterology and surgical teams without delay. Children with IBD are at risk of serious complications such as obstruction and perforation, and input from paediatric surgeons is often essential.
If these findings are identified in a district general hospital (DGH), focus on stabilising the child — maintain resuscitation measures, initiate appropriate monitoring, and liaise urgently with the gastroenterology team. Where there is concern for toxic megacolon, the child will usually require urgent transfer to a tertiary centre for further surgical assessment and specialist care.
It’s entirely appropriate to feel cautious when caring for children with inflammatory bowel disease (IBD), especially those on immunosuppressive therapy.
Medications such as azathioprine, methotrexate, and biologics are mainstays of IBD management, but they increase the risk of infection. Some patients may be triple immunosuppressed (e.g. on steroids alongside other agents) and may also be prescribed prophylactic antibiotics.
When a child with IBD presents with fever, it’s essential to determine whether this reflects:
- An underlying infection
- Or an inflammatory flare
As part of your assessment:
- Take a careful history and examine thoroughly
- Consider common sources of infection (e.g. urinary tract, upper respiratory tract)
- Send appropriate specimens for microbiology (e.g. urine, stool, blood cultures)
If infection is suspected or confirmed, it is usually appropriate to temporarily withhold immunosuppressive medications and discuss the case promptly with the gastroenterology team. These children may require targeted antibiotic therapy, depending on the infection identified.
What about antibiotics at admission?
Routine antibiotics are not recommended for children presenting with acute severe colitis at the time of admission.
However, empiric antibiotics may be started if:
- Clostridioides difficile infection is suspected
- Other bacterial pathogens are a concern
- The child appears toxic or systemically unwell
Once stool analysis results are available, antibiotics can be adjusted accordingly.
In cases of toxic megacolon, broad-spectrum antibiotics should be given immediately, covering gram-negative and anaerobic bacteria, in line with local protocols.
Let’s get back to Bobby… His bloodwork has returned revealing Hb 68, platelets 520, normal UE, LFT, bone, CRP 68, ESR 92, normal coagulation profile. His abdominal Xray is shown below and demonstrates 80mm distension of the featureless transverse colon which is concerning for toxic megacolon.
Bobby was admitted to hospital urgently and started on high-dose intravenous steroids under the care of the gastroenterology team. He needed close monitoring, and plans were made for a blood transfusion due to ongoing losses.
He was devastated.
“This is so unfair… why me?” he repeated, clearly overwhelmed. He had plans with his friends that weekend — things he’d been looking forward to — and now felt completely isolated. He didn’t believe they’d understand what he was going through.
His mum was equally upset. It was his younger sister’s birthday, and she’d been planning a family celebration. Instead, she now had to divide her time between supporting Bobby in hospital and being there for her daughter — an impossible balance for any parent.
Despite being nil by mouth, on IV fluids, and receiving high-dose steroids, Bobby’s condition didn’t improve. His PUCAI remained high (70–80), and he had persistent rectal bleeding, requiring multiple blood transfusions.
Given the severity, the team escalated treatment — starting Infliximab, a biologic therapy commonly used in refractory ulcerative colitis. But Bobby was unlucky. While many patients respond well, his disease remained uncontrolled.
The gastroenterology MDT grew increasingly concerned. Bobby was referred to the paediatric surgical team, who met with him and his family to discuss the next steps. Just seven days after admission, Bobby underwent a total colectomy due to the severity of inflammation.
When he woke up, he had an ileostomy — a life-altering change, and a difficult reality for any teenager to face
Around 9% of children with ulcerative colitis will undergo a colectomy before their 18th birthday. Of these, approximately half will experience acute complications leading up to surgery.
While the decision to operate is significant, it’s important to recognise that in ulcerative colitis, colectomy is often considered relatively curative — removing the colon typically eliminates the source of inflammation.
In contrast, the picture is quite different for Crohn’s disease. Surgery may be needed to manage complications such as strictures, fistulae, or abscesses, but it does not cure the condition. Many patients will have ongoing disease activity post-operatively and will still require long-term medical treatment to maintain remission and manage flares.
Following his surgery, Bobby’s physical recovery went well. Medically, the team were relieved — his symptoms were finally under control after such a difficult flare.
But psychologically, things were much harder. Bobby struggled with the reality of having a stoma. He worried constantly about what his friends might think of him now. His frustration and sadness often spilled over into angry outbursts, upsetting those closest to him. He became increasingly withdrawn, turning down invitations and refusing to engage with friends who tried to reach out.
The gastroenterology team referred him to their specialist psychologist, but at first Bobby didn’t want to engage. It took time, patience, and repeated offers of support before he agreed to meet her. Even then, coming to terms with what had happened to him was a slow and ongoing process, and Bobby continued to need regular psychological support many months later.
There is growing evidence highlighting the psychological burden of living with a chronic illness like inflammatory bowel disease. The diagnostic period alone can be traumatic, and some young people are at risk of developing post-traumatic stress disorder (PTSD) as a result.
Feelings of loneliness, shame, and embarrassment are common — especially given the nature of IBD symptoms. These emotions often lead to avoidance behaviours, such as withdrawing from social or school activities. This, in turn, can worsen low mood and exacerbate IBD symptoms, setting off a vicious cycle of physical and emotional deterioration.
As healthcare professionals, we play a vital role in breaking that cycle. Supporting young people to remain socially connected — particularly by helping them stay engaged in the school environment — is crucial. Since the COVID-19 pandemic, rates of home schooling have increased, but prolonged absence from school can worsen social isolation and negatively impact mental health.
Early referral to psychological support, collaborative working with schools, and promoting a return to normal routines wherever possible are key steps in improving overall outcomes for children with IBD — not just physically, but emotionally too.
More recently, Bobby’s gastroenterology team began preparing him for the next big step: transition to adult services.
He attended a transition clinic, where he was joined by his paediatric gastroenterologist and IBD specialist nurse. For the first time, he also met his new adult gastroenterologist and adult IBD nurse. The team reassured him that the handover would be seamless, and that support would always be available — just as it had been in paediatrics.
What really mattered to Bobby was feeling heard. The adult team took time to understand his journey and showed they were fully across his condition and ongoing needs. For the first time, Bobby began to see this transition not just as a medical milestone, but as a personal one too.
Taking ownership of his IBD was a big deal, and although he was understandably nervous, he also felt a sense of pride. He was starting to look forward to being treated as an adult, and he welcomed the independence that came with it.
