Aside from the obvious adversity of a spinal cord injury, learning to manage a neurogenic bladder and it’s erratic function can prove to be one of the biggest challenges of recovery. My other title of this article is “Bladder Pee-ace” because that is what I seek.
In this first part of a two-part article on Bladder and Bowl management, I will share candidly my trials and tribulations, and my methods of management of one the body’s most fundamental functions.
I have learned that if you can control your bladder, you can control your life.
What Does Neurogenic Mean?
Neurogenic bladder is a term used to describe bladder dysfunction caused by neurologic damage. The condition can cause either flaccid or spastic symptoms including overflow incontinence, frequency, urgency, urge incontinence, and retention. There are risks of serious complications like recurrent infection, vesicoureteral reflux and autonomic dysreflexia. Google these terms to learn more and empower yourself with knowledge.
Waking up to a paralyzed body with paralyzed bodily functions was humbling to say the least. Gone was my personal space, dignity and pride. I was completely reliant upon doctors, nurses, family and even close friends for my personal care. Without my ability to use my hands, I had no choice but to allow others to touch, tape, poke and prod my genitals for bladder relief. This was difficult to accept as a twenty-year-old.
In the beginning I relied on an indwelling catheter through my urethra, attached to an external foley at the side of my bed. This device needed to be monitored and emptied regularly to prevent infection. The pro of this was that I could drink as much fluid as I wanted, whenever I wanted because it would just drain through me without me knowing. But the con is that it would drain through me without me knowing, and I desperately wanted to know and control this personal function.
My initial progress came by way of the bladder medication Ditropan. The medicine helped me retain urine so that I could begin using an intermittent catheter (like the JAW). Again, my hand function was limited, so someone had to perform the tasks of inserting and sanitizing every four hours.
Fortunately over time I began to experience a return of sensation in my body. But unfortunately that meant I could feel every excruciating millimeter of catheter hose being inserted into my penis four-to-six times a day.
This forced me to begin using an external condom catheter connected to a leg bag via a small rubber hose. Initially this solution needed to be refined to prevent condom leaks, hose kinks and bag ruptures, all of which would ruin my day.
Ultimately though, I found progress in my ability to listen and understand my bladder cues for when I needed to urinate. I discovered that by tapping lightly on my bladder (lower belly) I could trigger a release in my bladder which helped me void more completely (100-300cc). This is the technique I use today. And although I cannot hold my bladder for very long (1-3 minutes) I manage to live mostly accident free…
Operative word: mostly.
With all my years of experience and methods of strategic, timely hydration, I can still get caught by an untimely bladder spasm or leak. That’s life.
I thoroughly enjoy public speaking. I love the preparation, the butterflies, and the connection to an audience. What I do not enjoy is the stress associated with bladder control while on a stage. I can vividly remember in April 2015: I was speaking in front of hundreds of people, spotlight on me, and I had misjudged my bladder timing. My world became excruciatingly stressful, my mind went blank, sweat poured down my forehead, and I could feel my blood pressure rising. In that moment, I could not leave the stage, so I literally was in the spotlight standing in a puddle of my own pee. Oh, the humility of that moment, I will never forget. Thank goodness for black pants!
Nowadays you will find me strategically hydrating and premeditating my social outings, seeking to find the most accessible and discreet places to pee. I keep a twist-top bottle handy at all times, and red solo-cups strategically placed in my car and around my house. I also find solace in using a leg bag for extended travel and prolonged public events.
This is my way of maintaining a stress free pee-ace of mind.