​​DISCLAIMER: The following information has been gathered from various sources, including Medical Professionals and experts in the field. This is in no way a medical text, but can be used as a helpful set of information that will hopefully give you an understanding and basic knowledge of the subject.
Supporting Teenage Boys Born with Anorectal Malformation
Understanding Your Body
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Boys born with an Anorectal Malformation have a rectum and anus that developed differently from other children. Because the bowel, bladder, and reproductive organs are close together, some boys may notice differences in how their body works as they grow.
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Not every boy will have, but understanding your body and how it works can help you feel more confident and in control of your health. Learning about your body, the changes in puberty, asking questions, and talking with your healthcare team are important steps in taking care of yourself. Confidence comes from building a positive relationship with your body and identity.
Feeling comfortable with who you are and being proud of your unique experiences.
Boys - normal changes to expect in puberty
Deeper voice -
as the voice box grows
Hair growth - facial, underarm, and pubic hair
Growth spurts -
getting taller and broader
Muscle growth and changes in body shape
Increased sweating and stronger body odour
Oily skin or acne
Enlargement of the testicles and penis
Random erections and wet dreams (normal and involuntary)
New sexual thoughts
and feelings
Mood changes due to hormone shifts
​​​Daily Bowel & Bladder Management
Ongoing monitoring and management of bowel and/or bladder function as needed.
Stick to your routine:
Follow your scheduled toileting plan, including any prescribed laxatives, enemas, or irrigations.
Stay hydrated and eat well:
Pay attention to foods that improve or worsen bowel control; everyone responds differently.
Knowing Your Plan Can Make You Feel More Confident
Accidents happen sometimes, even to people without ARM.
Know your support:
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Where to go
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Who to text
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What to carry with you
Be Prepared: Carry a discreet hygiene kit with wipes and spare underwear for peace of mind when away from home.
Some boys with ARM may have:
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Bowel or bladder habits that feel different from peers
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Questions about penis or testicular development
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Concerns about erections or wet dreams
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Worries about sexual situations
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Questions about fertility
Possible Reasons for Differences in Bowel, Bladder, or Sexual Development in ARM
Differences in muscle and nerve development:
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The nerves that control bowel, bladder, and sexual function, and the muscles themselves, may develop differently in people with ARM. This can affect sensation, control, or how the body responds to certain signals.
Muscle tightness or scar tissue:
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Scar tissue from surgery or naturally tight muscles around the bowel, bladder, or genital area can change how the muscles move or feel. This can sometimes make activities like toileting, erections, or sexual development feel different.
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An Anorectal Malformation specialist can help you understand what is normal for you.
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School & Social Support
Teenagers may avoid public, school, or work environments that do not provide private, accessible, or inclusive restroom facilities.
This avoidance can lead to:
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Reduced social participation
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Increased isolation
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Negative impacts on education and employment opportunities
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Lower overall quality of life
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Practical strategies to stay involved and supported:
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Ask for accommodations if needed, such as bathroom access, extra time, or having a trusted adult nearby
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Consider a school support plan to ensure your needs are met.
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Participate in sports and activities as appropriate
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Join support groups or online communities to connect with other teens with similar medical conditions. Meeting people who have had similar experiences as you can be helpful.
Support Networks & Inclusion
Adolescents with ARM thrive when supported by family, peers, healthcare professionals, educators, and community organisations.
Address stigma and promote inclusion so teens feel understood, respected, and supported in daily life.
Strong support networks help young people to:
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Develop meaningful relationships.
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Participate fully in community life.
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Pursue education and employment opportunities.
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Feel confident and empowered in their identity and health journey.
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Many teens with ARM share similar experiences.
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Talking to someone you trust is a sign of strength.
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Relationships
Fear of rejection, embarrassment, or disclosing medical or continence-related issues can make dating or forming romantic relationships challenging. These concerns may affect emotional connection, self-esteem, and overall wellbeing.
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Key Reminders
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ARM does not make you less attractive or worthy of love.
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Trust supportive friends who respect and encourage you.
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Share about your condition only if and when you want to - you are in control.
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Healthy relationships are built on respect, kindness, and trust, not a “perfect” body.
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Talk to someone you trust about worries or fears.
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Set boundaries and only share medical history when you feel safe and ready.
Pre-Adolescent/Adolescent Care - Boys
Management of Bowel and Bladder Function
Ongoing monitoring and management as needed.
Encourage independence and self-care skills.
Monitoring Puberty
Track growth, development, and secondary sexual characteristics (e.g., testicular growth, voice changes, body hair).
Address concerns about delayed or early puberty.
Assess for fertility potential if indicated.
Assessment
Regular medical review to evaluate reproductive and urinary anatomy and function.
Identify structural or developmental anomalies that may affect urinary or reproductive health.
Recognising Abnormal Signs
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Difficulty or pain with urination or bowel movements
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Blood in urine or stool
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Persistent constipation, diarrhea, or loss of control
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Signs of delayed or abnormal puberty (e.g., small testes, lack of secondary sexual characteristics)
Psychological Support
Address concerns about continence, body image, and fertility.
Teenagers may experience distress related to reproductive or urinary health.
Referral to psychological services can provide emotional support and coping strategies.
Intimacy
Provide a safe, age-appropriate space to discuss sexual activity, fertility expectations, and healthy relationships.
Emphasising consent, emotional readiness, protection, and reproductive health.
HPV vaccine information may be found here:
https://www.nhs.uk/vaccinations/hpv-vaccine/
Fertility in Teens with ARM
Most boys with ARM can father children.
Fertility can be assessed by a doctor if there are concerns.
Optimal Lifelong Care
Needs A Multidisciplinary Team
Paediatric & Adult Colorectal Surgeon:
Surgeries related to Anorectal Malformation
Paediatric & Adult Urologist:
Assesses, treats & monitors urological anomalies
Radiologist:
Interprets imaging to assist with diagnosis
Gastroenterologist:
Constipation/motility disorders/bowel management programs
Specialist Nurse Urodynamics / Bowel Management:
Bowel & bladder advice, medications, enemas, training programs
General Paediatrician:
Coordinates care. Monitor growth, development
Endocrinologist:
Monitors growth, pubertal development, and hormonal function during adolescence
Reproductive medicine specialist:
Key specialist for adolescents and adults with complex malformations
Psychologist / Behavioral Health Specialist:
Supports coping, body image, mental health and wellbeing
Nutritionist / Dietitian:
Ensures optimal growth, helps manage dietary contributors to constipation or diarrhea.
Physical Therapist:
Aids in improving continence and muscle function.
Social Worker / Case Manager:
Helps families navigate care.
Education Advisors:
Accessing further education, courses, training opportunities etc