Marco's story differs from those of many other SCI/SCD patients; while not unique, it is an unusual case. He is 23 years old and had, for some years, worked as an electronics technician, fabricating complex devices. Over the course of a winter, he took four months off of his full work schedule to work and travel in India and Thailand. The journey was exciting, and without any adverse incidents; Marco returned feeling invigorated and ready to resume his job.
Regarding body functions, the medical team recognized that Marco’s defecation and urination functions were completely impaired and his spinal cord and muscle functioning were both severely impaired. Regarding urination functioning, he was diagnosed with both detrusor hyperactivity and detrusor-sphincter dyssynergy (DSD), resulting in an inability to control urination. His bowel functioning lacked control and sensitivity – his doctor diagnosed spastic bowel, a condition common with upper motor neuron lesions.
Based on the assessment and goal-setting an intervention plan was created (Figure 3). To improve toileting, Marco’s doctor and nurse focused on interventions relating to defecation and urination functions (including regulation). He was instructed in the use of urinal condoms that would give him more control and freedom for relieving his bladder.
To improve his defecation functions, drug suppositories were prescribed and Marco learned to defecate manually using his fingers and hygiene (by Marco’s nurse). Additionally, to improve bowel movement, training in performing colon massage was undertaken. These training and counseling sessions also included topics such as diet (by the nutritionist),
Marco’s rehabilitation phase continued over three and a half months (a relatively long period for a Rehab Cycle) during which he showed continuous improvements over the course of the interventions. Overall, his inflammatory disease improved greatly and neuromuscular functioning made gains that resulted in an improvement to incomplete paraplegia with much more preserved muscle function than at the beginning of his health condition (his classification improved to AIS D).
To evaluate his changes in his functioning statues a re-assessment of the intervention targets was performed and illustrated within the ICF Evaluation Display (Figure 4). Marco’s bowel functioning had made significant gains. By the end of the cycle, he had some bowel and anal sensitivity, a degree of control and was able to defecate independently at regular intervals. However, in some situations control of defecation was not sufficient and still lead to incontinence.
Bladder and bowel problems are just the worst topics for everyone. With an SCD, these issues are suddenly at the center of your life again…and you have no control anymore. It’s like being a child again. Beside the medical issues it really affects you: how you dress, how free you are in public. I feel more reserved than before, and with less self-confidence, I don’t feel normal. Bowel and bladder dysfunction have been the most negative part of my whole experience with SCD.
Marco’s reflections on bowel and bladder dysfunction