Living with VACTERL Association
Anorectal Malformation
Anorectal Malformation Care
Bowel Function and Related Health Issues
Living with an anorectal malformation (ARM) can bring ongoing physical, emotional, and social challenges. Because ARM affects how the rectum and anus develop, experiences vary depending on the type of malformation, associated conditions, and the outcomes of surgery.
Many children require surgery early in life, and some continue to need long-term bowel management into adulthood. Even after repair, the rectum and anal muscles may not function normally.
Common bowel problems include:
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Chronic constipation
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Faecal incontinence or leakage
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Urgency or difficulty controlling bowel movements
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Abdominal discomfort, bloating, or excess gas
Management may involve:
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Structured bowel management routines
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Laxatives, enemas, or bowel irrigation
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Timed toileting programmes
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Further surgery, including stoma formation in some adults
Kidney and Urinary Health
Because the bowel and urinary systems develop at the same time during early pregnancy, some people with ARM also have abnormalities affecting the bladder or kidneys. This can increase the risk of urinary tract infections (UTIs), including kidney infections.
Risk may be higher if:
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The bladder does not empty completely
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Urine flows backward toward the kidneys (vesicoureteral reflux)
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A kidney developed abnormally
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Constipation places pressure on the bladder
Early recognition and treatment of UTIs is important to help protect long-term kidney function.
Emotional Wellbeing and Quality of Life
Repeated hospital visits, procedures, and ongoing bowel management can be physically and emotionally demanding. Concerns about accidents, scars, or feeling different from peers may affect confidence and wellbeing, particularly during school years and adolescence.
Sexual and Reproductive Health
Some adults with ARM may experience sexual or reproductive health concerns, including:
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Pain or discomfort during sexual activity
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Fertility concerns
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Structural differences affecting reproductive organs
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Erectile dysfunction or ejaculation difficulties in males, depending on anatomy and previous surgeries
Referral to specialist gynaecology or urology services may be helpful where needed.
"When you have been repeatedly told that your condition is "rare" and "complex" and you have had mainly negative experiences of health care, I believe that reinforces the sense that you're on your own and you have little choice but to get on with it."
"For a long time, I struggled with my identity. Everything changed when I was 15 and I found a Facebook group for VACTERL teens and adults. For the first time, I saw people like me—people who understood. I connected with others, met some in person, and slowly began to build confidence. I realised that what I was experiencing was valid, and that I wasn’t alone."
You can read more about living with Anorectal Malformation in our VACTERL Stories page.
DISCLAIMER:
By using our website you acknowledge that you are accessing information and peer support only and not professional medical healthcare advice.
If you are unsure about any aspect of your health or treatment, please consult a healthcare professional immediately.