🧒🔥 Crohn’s Disease in Children: A Parent-Friendly Guide

✅ Crohn’s disease is a type of Inflammatory Bowel Disease (IBD) where the immune system causes ongoing inflammation in the digestive tract.
It can affect any part from mouth to anus. With modern treatment, most children can grow well, feel well, and live active lives.

1) 🧾 Quick “At-a-glance” box (top of page)

✅ Condition name: Crohn’s disease
Common names: Crohn’s, pediatric Crohn’s, IBD (Crohn’s type)

Plain-language summary (2–3 lines):
Crohn’s disease causes chronic inflammation in the intestines. This can lead to belly pain, diarrhea, blood in stool, weight loss, and poor growth. Symptoms may come in “flares” and “quiet periods,” but treatment is designed to control inflammation and protect growth and development.

Who it affects (typical ages):
Can occur at any age, but many children are diagnosed in school-age years or adolescence.

✅ What parents should do today:

• Take red-flag symptoms seriously (blood, weight loss, night symptoms).
• Seek timely evaluation.
• Track stool pattern, growth, and symptoms.
• If diagnosed: follow medications exactly and attend follow-ups.

⚠️ Red flags that need urgent/ER care:

• Severe belly pain with fever
• Heavy rectal bleeding
• Persistent vomiting or dehydration
• Swollen, hard abdomen or inability to pass stool/gas

🟡 When to see the family doctor/clinic:

• Diarrhea or belly pain lasting > 2–3 weeks
• Blood or mucus in stool
• Weight loss, poor growth, delayed puberty
• Fatigue, anemia
• Mouth ulcers, joint pain, skin rashes with gut symptoms

2) 🧠 What it is (plain language)

Crohn’s disease is an immune-mediated condition where inflammation can occur:

• anywhere in the digestive tract (mouth → anus)
• in “patches” (skip areas)
• deeper in the bowel wall

Because inflammation can be deeper, Crohn’s can cause:

• narrowing (“strictures”)
• tunnels (“fistulas”)
• inflammation around the anus (perianal disease)

What part of the body is involved? (small diagram required)

Common myths vs facts

• Myth: “Crohn’s is caused by stress or food.”
  Fact: Crohn’s is immune-mediated; stress/foods can worsen symptoms but do not cause it.
• Myth: “Crohn’s is the same as IBS.”
  Fact: IBS does not cause inflammation; Crohn’s does.
• Myth: “Crohn’s always means surgery.”
  Fact: Many children do well with medical therapy; surgery is sometimes needed for complications.

3) 🧩 Why it happens (causes & triggers)

Causes (what we know)

Crohn’s results from a mix of:

• genetics (family history increases risk)
• immune system dysregulation
• gut microbiome shifts
• environmental influences

Triggers that can worsen symptoms (not causes)

• infections
• missed medications
• NSAIDs (ibuprofen) in some children
• poor sleep and high stress
• smoking/vaping in teens (important risk/worsener)

Risk factors

• family history of IBD
• certain genetic syndromes (rare)
• environmental exposures

4) 👀 What parents might notice (symptoms)

Typical gut symptoms

• belly pain (often right lower belly but can be anywhere)
• diarrhea (sometimes with blood)
• urgent stooling
• decreased appetite
• weight loss
• delayed growth or puberty

Symptoms outside the gut

• mouth ulcers
• joint pain or swelling
• skin rashes (tender red bumps, etc.)
• eye redness/pain
• fatigue and anemia

Perianal Crohn’s symptoms (important)

• painful bumps or drainage near anus
• fissures (painful cracks)
• abscess (fever + severe pain + swelling)
• fistula (drainage tract)

What’s normal vs what’s not normal

⚠️ Not normal:

• nighttime diarrhea
• weight loss
• persistent blood in stool
• ongoing fever
• delayed puberty

5) 🏠 Home care and what helps (step-by-step)

✅ Crohn’s requires medical treatment. Home care supports healing and quality of life.

What to do in the first 24–48 hours during a flare

✅ Do this now:

• keep hydration steady (oral rehydration if diarrhea)
• smaller, gentler meals
• rest and sleep support
• contact your IBD team early (don’t wait for crisis)
• do not stop medications unless told

Nutrition support (very important in Crohn’s)

Your child’s team may recommend:

• high-calorie nutrition strategies
• vitamin/mineral supplementation
• exclusive enteral nutrition (formula-only therapy for a period) in some children
  (This can reduce inflammation and improve growth.)

Comfort measures

• warm packs
• gentle movement if tolerated
• calm routines and reassurance

6) ⛔ What NOT to do (common mistakes)

• Don’t stop meds when symptoms improve.
• Don’t use repeated NSAIDs unless approved.
• Don’t restrict many foods without a plan (risk of malnutrition).
• Don’t ignore perianal symptoms (abscess can worsen quickly).
• Don’t delay care for red flags.

7) 🚦 When to worry: triage guidance

🔴 Call 911 / Emergency now

• severe belly pain with rigid/hard swollen belly
• heavy bleeding with weakness or fainting
• severe dehydration (very sleepy, dizzy, no urine)
• suspected abscess with fever and severe rectal pain

Example: “Severe pain + fever + swollen belly” or “large blood with fainting.”

🟠 Same-day urgent visit

• fever with worsening diarrhea
• persistent vomiting
• severe localized pain (possible obstruction or appendicitis-like presentation)
• rapidly worsening perianal pain/swelling

Example: “New fever and severe pain near anus.”

🟡 Book a routine appointment

• mild flare symptoms starting
• increasing fatigue or pallor (possible anemia)
• poor growth or appetite changes
• medication side effects concerns

🟢 Watch at home

• mild symptoms improving with hydration, rest, and your team’s flare plan

8) 🩺 How doctors diagnose it (what to expect)

What the clinician will ask

• stool frequency and blood
• nighttime symptoms
• weight/growth changes
• family history
• extraintestinal symptoms
• perianal symptoms

Physical exam basics

• growth chart review
• abdominal exam
• perianal exam (important)
• hydration status

Common tests

• blood tests (inflammation, anemia, nutrition)
• stool tests (calprotectin + infection rule-out)
• endoscopy + colonoscopy with biopsies
• imaging (ultrasound or MRI enterography)

What tests are usually not needed

• CT scans unless urgent complications suspected (radiation)

9) 🧰 Treatment options

✅ Treatment is individualized. The goal is deep control of inflammation, not just symptom masking.

First-line treatment (typical options)

• nutritional therapy (sometimes)
• steroids for short-term control (not long-term)
• immunomodulators in selected cases
• biologic medications (often early, especially in moderate–severe disease)
• antibiotics for perianal disease in certain situations

If not improving (next steps)

• optimize medication levels
• adjust biologic strategy
• check for complications (stricture, abscess, infection)
• nutrition intensification

Severe cases (hospital care)

• IV steroids or biologic induction
• IV fluids/nutrition support
• drainage of abscess if present

Medication/treatment details (parent-friendly)

For each medicine, your team will review:

• What it does: reduces immune inflammation
• How to give it: pills, injections, or infusions
• Common side effects: depend on medication (nausea, fatigue, injection reactions)
• Serious side effects (rare): infection risk; monitored closely
• When to stop and seek help: fever, severe illness, allergic reaction
• Key interactions: live vaccines may be restricted on some therapies

10) ⏳ Expected course & prognosis

• Crohn’s is chronic, with flares and remission.
• With modern therapy, many children achieve:
  • normal growth
  • normal school attendance
  • active sports participation

What “getting better” looks like

• less pain and diarrhea
• improved appetite and energy
• normalizing labs (inflammation markers)
• improved growth

Return to school/daycare/sports

• encouraged during remission
• accommodations during flares (bathroom access, fatigue allowance)

11) ⚠️ Complications (brief but clear)

Common complications

• anemia
• growth delay
• nutrient deficiencies (iron, vitamin D, B12 depending on disease location)

Crohn’s-specific complications

• strictures (narrowing) → crampy pain, vomiting
• fistulas → abnormal tunnels with drainage
• perianal abscess → fever + severe pain/swelling

12) 🛡️ Prevention and reducing future flares

• take medications consistently
• attend monitoring labs and infusions
• avoid NSAIDs unless approved
• sleep and stress management
• smoking/vaping avoidance (teens)
• vaccines and infection prevention plan with your care team

13) 🌟 Special situations

Infants/very young children

Often present with poor growth and severe symptoms—specialist care is essential.

Teens

Adherence, mental health support, and smoking/vaping avoidance are critical.

Kids on immunosuppression

• call early for fever
• avoid live vaccines unless approved
• plan travel carefully

Neurodevelopmental differences/autism

Use structured routines and visual medication schedules.

Travel considerations

Carry meds, medical summary, and flare plan.

School/daycare notes

Bathroom access, hydration plan, missed school accommodations, privacy.

14) 📅 Follow-up plan

• regular GI follow-up
• lab monitoring for inflammation and medication safety
• growth and puberty monitoring
• nutrition and mental health screening

15) ❓ Parent FAQs

“Is it contagious?”

No.

“Can my child eat ___?”

Often yes; diet is individualized. The goal is strong nutrition and symptom control.

“Can they bathe/swim/exercise?”

Yes—exercise is encouraged when well.

“Will they outgrow it?”

Crohn’s is lifelong, but it can be very well controlled.

“When can we stop treatment?”

Stopping usually leads to relapse; decisions must be made with the GI team.

16) 🧾 Printable tools (high-value add-ons)

🧾 Printable: Crohn’s Flare Action Plan

Daily:

• Take medications as prescribed
• Track stool and pain
• Hydration and nutrition support

Call your IBD team if:

• increased stool frequency or blood
• worsening pain
• fatigue/poor intake

Urgent/ER if:

• severe pain with distension
• heavy bleeding
• persistent vomiting/dehydration
• fever + severe perianal pain/swelling

🧾 Printable: Medication Schedule Box

• Medication: ___________________ Dose: ______ Time: ______
• Medication: ___________________ Dose: ______ Time: ______
• Infusion dates (if applicable): ___________________________

🧾 Printable: Symptom Diary / Tracker

Date: ______

• Stools/day: ______ Blood? yes/no
• Pain (0–10): ______
• Appetite: good/ok/poor
• Energy: good/ok/poor
• Meds taken: yes/no
• Notes: _______________________

🧾 Printable: “Red Flags” Fridge Sheet

⚠️ Urgent: heavy bleeding, severe pain with swollen belly, persistent vomiting, dehydration, fever with severe perianal pain.

🧾 Printable: School/Daycare Instructions Page

• Bathroom access without delay
• Hydration allowed
• Flexibility during flares (fatigue, appointments)
• Contact parent if blood, severe pain, vomiting, or fever occurs

17) 📚 Credible sources + last updated date

Trusted references:

• Pediatric gastroenterology society IBD resources
• Children’s hospital Crohn’s disease education pages
• National IBD organizations (pediatric sections)

Last reviewed/updated on: 2025-12-30
Local guidance may differ.

🧡 Safety disclaimer

This guide supports—not replaces—medical care. If you are worried about your child, trust your instincts and seek urgent medical assessment.

This guide was fully developed & reviewed by Dr. Mohammad Hussein, MD, FRCPC ROYAL COLLEGE–CERTIFIED PEDIATRICIAN & PEDIATRIC GASTROENTEROLOGIST Board-certified pediatrician and pediatric gastroenterologist (Royal College of Physicians and Surgeons of Canada) with expertise in inflammatory bowel disease, eosinophilic gastrointestinal disorders, motility and functional testing, and complex nutrition across diverse international practice settings.

To book an online assessment Email Dr. Hussein’s Assistant Elizabeth Gray at: Elizabeth.Gray@pedsgimind.ca
In the email subject, please write: New Assessment Appointment with Dr. Hussein

Important: This appointment is completely online as Dr. Hussein is currently working overseas. This service is not covered by OHIP