Phantom bladder sensations: a new concern for stoma care workers

The phenomena of phantom limb pain and sensations are well recognized in the medical literature. However, historically, there has been little more than passing reference to phantom pain and sensations of visceral organs. In particular, phantom bladder pain has been barely recognized. This article describes the result of a small survey of urostomists (n=50) who experienced bladder pain and sensations that were described by the respondents as being a perpetuation of the pain and sensations that they experienced before cystectomy or urinary bladder diversion surgery. Respondents reported a varied frequency of sensations, unhelpful healthcare professional responses and a range of strategies that they employed to deal successfully with the pain and sensations. The findings of this study are important because they have identified significant issues for stoma care patients that need to be addressed by those involved in stoma care and which could lead to significant quality of life improvements. This research has shown that stoma care workers need to include the possibility of the occurrence of phantom bladder sensations in preoperative counselling, acknowledge and support postoperative patients by confirming the validity of their experience and by using interventions, identified in this study, that can minimize the effects.