Comunidad de información y apoyo para las personas que viven con parálisis y sus cuidadores en español.
Neurogenic bladder and pain
Dear Nurse Linda
Thank you very much for your great work you do.
I have been suffering for 20 years with bladder pain and I’m desperately still searching for a solution.
Would you kindly share your expertise and help?
I sustained a complete, C5/6 spinal cord injury in June 2000 following a motorbike accident.
I have a neurogenic bladder with an indwelling supra-pubic catheter since January 2003. I experience untold trouble with repeated UTI's, visceral pelvic pain and Automimic dysreflexia.
I have been seen by several Urologists and have had failed numerous interventions (including bladder botox, urethral stenting, cycled antibiotics, etc...) and short of a surgical diversion I feel I’m running out of options.
Re: Bowel management
I used to do manual procedures with caregivers, but it became so unbearable and too stressful. (did manuals for 12years)
I had an ileostomy bag operation on 19 November 2012.
The Ileostomy gave me back 3days a week. It has pros and cons as I often feel fatigued and dip with energy which never used to happen prior to having ileostomy bag.
I am desperate to find a solution and be free of pain in my bladder.
Look forward to hearing from you.