Persistent urine leakage around a suprapubic catheter: the experience of a person with chronic tetraplegia

INTRODUCTION: Persistent urine leakage after suprapubic cystostomy in tetraplegic subjects occurs due to shrinkage of the urinary bladder and bladder spasms. The patient’s social life is adversely affected as clothes become wet, smelly, and require frequent changing, thus increasing the workload of carers. CASE PRESENTATION: A 48-year-old male sustained C-4 complete (AIS:A) tetraplegia while swimming in 2007. Suprapubic cystostomy was performed in 2009. From 2012, this patient had urine leakage around the suprapubic catheter, which became progressively more frequent. Propiverine, then oxybutynin tablets instead of propiverine, oxybutynin transdermal patches, and mirabegron in addition to oxybutynin were tried. An indwelling urethral catheter was used in addition to the suprapubic catheter to alleviate urine leakage when the bladder was undergoing spasms. This patient continued to have leakage around the suprapubic catheter. Leakage of urine was occasionally accompanied by autonomic dysreflexia. Leakage of urine caused huge amounts of extra work for carers, and family. Furthermore, leakage of urine had a significant impact on quality of life, and going out with friends and family. Bladder wall injection of Botox was performed in 2015 and in 2016, which reduced urine leakage. DISCUSSION: Bladder wall injection of Botox to treat persistent urine leakage around the suprapubic catheter in spinal cord injury patients with suprapubic cystostomy has not been mentioned in NICE guidelines or publications indexed in PubMed. While recommending suprapubic cystostomy to subjects with tetraplegia, leakage of urine around the suprapubic catheter, which may occur sometime after suprapubic cystostomy, should be included in the conversation so that patients and carers become aware of this potential complication.