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Bladder and Bowel Management in Cloacal Exstrophy: A Long-Term Multi-Institutional retrospective Cohort Study
Molly Fuchs1, Mohamed Ahmed2, Venkata Jayanthi1, Uchenna Kennedy3, Ilina Rosoklija4, Andrew Strine3, Elizabeth Yerkes4, Patricio Gargollo2
1Nationwide Children's Hospital, Columbus, OH, 2The Mayo Clinic, Rochester, MN, 3Cincinnati Children's Hospital Medical Center, Cincinnati, OH, 4Ann & Robert H Lurie Children's Hospital of Chicago, Chicago, IL
Introduction
Cloacal exstrophy (CE) is a complex and rare disorder and much of the literature consists of single-institution series. It has been shown that to achieve continence, multiple operations may be necessary and with unpredictable success even in the most experienced hands. Utilizing our multi-institutional group, we sought to better understand the long-term outcomes of how patients with CE manage their bladder and bowel. We aimed to assess how many CE patients utilize their urethra for continence, how many require bladder augmentation and the proportion requiring diverting colostomy or ileostomy.
Methods
We conducted a retrospective cohort study of children with CE who were managed at the four participating instituations. Children with CE and covered CE were included. Those born with exstrophy variants in which no hindgut was attached to the bladder plate such as bladder exstrophy with anorectal malformation were excluded. Any child with < 1 year follow up after birth was excluded. The primary outcome was use of urethra for voiding or clean intermittent catheterization (CIC). Secondary outcomes were the proportion of bladder augmentation and proportion of children with diverting colostomy vs pull-through.
Results
Of 109 patient meeting inclusion criteria, 35.8% were male and 69.7% were Caucasian. Median follow up was 12.5 years (range 1.0 – 47.8 yrs). A total of 60 patients (55.1%) perform CIC. Of these, 55 (91.7%) perform CIC via a channel and 5 (8.3%) via the urethra. Twenty-three patients (21.1%) had an incontinent urinary diversion. Only 1 patient (0.9%) voids per urethra. A total of 25 patients (22.9%) are incontinent/not toilet trained. Fifty-four patients (49.5%) required bladder augmentation, the majority (57.4%) utilizing ileum. A total of 78 patients (71.6%) had a diverting colostomy or ileostomy, 17 (15.6%) had pull-through alone and 13 (11.9%) had pull-through and use antegrade enemas.
Conclusions
In this long-term, multi-institutional cohort of patients with CE, nearly 72% of do not utilize native urethra for voiding or CIC. The remainder are incontinent or not yet potty trained except for a single patient. Given that the vast majority of patients do not evacuate through the urethra, this data brings in to question the utility of attempting to restore “normal” perineal anatomy.
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