Lifelong
Project Name
Living Fully and Freely with Anorectal Malformation.
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Anorectal Malformation (ARM) is a congenital condition that typically requires surgical intervention in early childhood. However, its impact often persists well into adolescence and adulthood. Many adults face ongoing challenges such as continence difficulties, social exclusion, and emotional distress. Issues that can profoundly affect education, employment, relationships, and mental well-being.
Navigating An Unfamiliar Healthcare System
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Despite these challenges care for adults born with ARM often remains fragmented, inconsistent, and frequently under-informed. As adolescences transition from paediatric to adult services, they are often left without support. This leaves them to navigate a complex and often unfamiliar healthcare system alone, without the guidance they once relied on.
Transition often leaves adults without continuity or a coordinated healthcare plan. Many healthcare providers are unfamiliar with ARM, leading to fragmented or inadequate care. As a result, symptoms may be misdiagnosed or dismissed, increasing patient anxiety and discouraging engagement with the healthcare system.
Continence and Daily Functioning
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Continence issues can limit opportunities in school, the workplace, and social life.
The struggle for "social cleanliness" is emotionally exhausting and isolating.
Social isolation can stem from stigma and embarrassment
Low self-esteem can lead to an increased risk of mental health issues
Sexual and Reproductive Health
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Adults with ARM may face fertility challenges and complex urogenital concerns. Delays in referral to urogynecology or reproductive medicine can lead to significant emotional distress and missed opportunities for timely intervention.
Conversations about pregnancy or intimacy, often considered ordinary or joyful by others, can feel deeply alienating for those with ARM, reinforcing feelings of exclusion, misunderstanding, or grief.
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The Importance of Sensitive, Specialist Support
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Without access to specialist care and support, these experiences may further disconnect adults from their friends, their partners, and even their own sense of self identity. Sensitive topics such as fertility, sexual health, and body image can be difficult to navigate, particularly when support is limited or lacking in understanding.
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Many female patients report discomfort discussing intimate health concerns with male clinicians, making choice in the gender of one’s healthcare provider a key factor in ensuring comfort, dignity, and openness. Equally important are cultural sensitivity and emotional intelligence, which play a vital role in building trust and delivering care that respects the individual’s lived experience.
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Essential support:
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Normalise the need for patients to advocate for themselves post-childhood.
Establish lifelong multidisciplinary seamless support with individualised care plans that evolve with patient needs.
Provide mental health and trauma-informed services that acknowledge past experiences and promote emotional resilience.
Respect patient comfort by offering choice in provider gender for intimate concerns.
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Person-Centred Care
True effectiveness in care goes beyond surgical procedures; it embraces a holistic, lifelong approach that continuously supports patients’ growth, self-confidence, and independence, ultimately leading to better outcomes and an improved quality of life. Your uniqueness does not define your limits, it fuels your ability to thrive, grow, and inspire others. No matter the complexities you face, you deserve a life filled with joy, purpose, and fulfillment.
If you’re facing your own challenges, remember: you are not alone.
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​Resources:
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Patient Journey for Anorectal Malformation:
Sexual Support: Anorectal Malformation. Hirschsprung's Disease https://sexuality-arm-hd.com/
Patient Empowerment:
https://eurogen-ern.eu/patient-empowerment-a-journey-from-isolation-to-advocacy/
Joe Kennedy - Mr Magic Toilet:
https://www.bbc.com/news/av/uk-england-tees-64749519
Rare & Resilient ONE in 5000 Podcasts:
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Adults with ARM often experience a range of digestive issues including:
Faecal incontinence
Chronic constipation
Soiling and hygiene concerns
Approaches to bowel management may include:
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High-fiber diet and adequate hydration
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Medications
Motility agents to regulate bowel function
Effective bowel management is essential to improving quality of life.
Managing bowel function goes beyond physical symptoms.
It is about restoring dignity, control, and confidence in daily life.
Structured bowel management programs:
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Medication, Enemas or Antegrade Continence Enema (ACE) procedures
Pelvic floor therapy to strengthen muscles and improve control
Sacral neuromodulation for select cases to enhance nerve function
Surgical interventions when necessary
Adults with ARM often experience a range of urological issues including:
Urinary incontinence
Recurrent Urinary tract
infections Vesicoureteral reflux (VUR)
Renal impairment
Recognizing & managing complications:
Urodynamic studies to evaluate bladder function Imaging techniques such as ultrasound and MRI for anatomical and functional assessment
Appropriate interventions, including clean intermittent catheterisation (CIC), antibiotics, or surgery as needed
Comprehensive, routine monitoring is essential to prevent complications and maintain long-term urological health.
Gynaecologic surveillance
For menstrual problems, endometriosis, vaginal scarring.
Fertility is possible but may be affected depending on the anomaly and prior surgery
Preconception counselling.
Pregnancy planning & obstetric considerations.
Some women may need assisted reproductive technologies (ART)
High-risk pregnancies due to pelvic anatomy and previous surgeries.
Men born with (ARM) may face unique and often overlooked challenges related to their reproductive and pelvic health.
Urinary and bowel function issues may be present:
Rectal prolapse, fistula recurrence, chronic urinary tract infections
Ascending urinary tract infections, reflux of sterile urine into the seminal ducts, or anomalies in the genital tract.
Some men may experience dysfunction of erection and ejaculation.
Epididymo-orchitis.
Psychological impact of living with a complex congenital condition.
Sexual Health
Sexual health is often overlooked but is a vital part of overall well-being for those born with Anorectal Malformation.
Sexuality should be addressed openly and respectfully
Free from shame or assumptions.
Stigma remains a profound barrier
Can lead to avoidance of workplaces lacking accessible bathroom facilities
Dating and intimate relationships Social or public spaces
These challenges contribute to feelings of isolation and exclusion
Adults may experience: Anxiety, depression, and post-traumatic stress disorder (PTSD)
Low self-esteem
Challenges with body image
Medical trauma resulting from early life surgeries and ongoing treatments
Sexual health Sexual health
Vaginal stenosis, dyspareunia, or absent vagina may require the use of vaginals dilators or reconstructive surgery.
Hormonal issues (e.g., premature ovarian failure in complex ARM)
Provision of ongoing health maintenance. HPV vaccination and cervical screening
Surgical history review; cloacal repair increases delivery risk
Multidisciplinary delivery planning is essential
Caesarean Section is often recommended.
Care needs:
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Colorectal/urological surveillance to monitor for complications; rectal prolapse, fistula recurrence, chronic UTIs
Continence support; update bowel/bladder program as physiology changes
Care needs:
Continence support; update bowel/bladder program as required
Colorectal/urological surveillance to monitor for complications
Voiding cystourethrogram (VCUG), urodynamics, and cystoscopy are used to detect underlying anatomical or functional causes.
There may be anatomical abnormalities in testes or vas deferens.
If recurs despite correct treatment, a procedure may be necessary to protect the production of sperm cells. Referral to a centre specialising in reproductive medicine.
Sexual function and body image psychological support may be needed
You are not alone. Many men with ARM share similar experiences, even if they are not often spoken about publicly.
Support is available; peer networks, specialist healthcare providers, and mental health professionals can all play vital roles in your journey.
Sexual relationship barriers include:
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Fear of incontinence during intimacy
Negative body image/self-esteem issues
Pain or anatomical differences, such as vaginal agenesis.
Erectile or ejaculatory dysfunction.
Concerns about fertility
Holistic Support Networks
Disability and legal advocacy to protect rights and access.
Vocational rehabilitation to support meaningful employment.
Inclusive community spaces that foster connection and belonging
Building these networks helps empower adults with ARM to lead fulfilling, independent lives within their communities
Support strategies include:
Trauma-informed counseling to address past and ongoing medical experiences
Peer support networks that foster connection and shared understanding
Early screening and proactive management of mental health concerns