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

Bowel and bladder dysfunction presented Marco with one of his biggest challenges that related to his health condition. In addition to the condition, many of the interventions were objectionable and uncomfortable for him. From a patient perspective, health care providers can do much to assist with these dysfunctions.

Beyond clinical interventions to alleviate the conditions, patient (and caretaker) counseling and education are a key aspect of rehabilitation. Additionally, with an uncertain prognosis, neither Marco nor his medical team could know whether or to what degree his incontinence and hyperactive bladder would improve. In dealing with uncertainty, clarity of messaging between and from health team members to the patient is important.

Working within the multidisciplinary and adaptive approach supported patient-tailored interventions based on his functional progression. For his overall rehabilitation, not only were a number of specialists (from rheumatologists to neurologists) assigned for the medical management of his condition; however nurses, physical therapists and nutritionist all played an integral role in helping Marco to improve and manage living with bladder and bowel dysfunction.

As Marco’s prognosis in terms of these dysfunctions remains unclear, while improved, he may be living with problems such as incontinence for some time to come. This may in the end mean compensating bladder and bowel dysfunctions through appropriate behaviour – toilet mapping, timing outings, etc Nevertheless, providing SCD patients living with bladder or bowel dysfunctions the best knowledge, skills, tools and medical management are essential to improving quality of life and successful reintegration.