We Always Have a Choice
This woman with SCI weighs invasive or noninvasive treatments for a bladder issue.
For a little over six years, I had a constant internal battle with intermittent catheterization.
The act of catheterizing myself was not the problem. What was irritating is the process females go through to empty their bladder, and how much practice we need to master it.
This emotional blockage had always impeded me from wanting to use a public restroom. My outings were limited to four hours at the most. Then, I would come home and catheterize myself in bed.
As the need to stay out longer than four hours arose, I began to drag family or friends to a public restroom to help me. More frustrating was when my bladder increased its spasticity and I would have an accident.
Slowly, I began filtering the “would like to be at” outings to “must go to” outings. Finally, I spent a long time just going to doctors’ appointments and short activities involving my daughter. My social life became nonexistent.
One day as I declined another social invitation from a friend who has had an SCI (spinal-cord injury) since birth, I felt the need to explain myself.
As I told her the reason behind my “thank you, but no thank yous,” she gave me a list of things I could do to help such as using an undergarment like Depends.
I began using the undergarment to help with leakage. However, the frustration over the process itself
was still there.
It was then I remembered another SCI friend telling me she had the Mitrofanoff procedure. Despite some complications after the surgery, her life has dramatically changed to the better.
The Research Began
I spent countless hours reading studies from all over the world about Mitrofanoff and stoma procedures for bladder reconstruction.
I decided to reach out to SCI forums and ask people who underwent the procedure. As technical, frightening, delicate, and invasive as the procedure sounded in the studies, they sounded the same from patients.
However, all of them said it was one of the best decisions they ever made, because the quality of life they have now was worth everything they went through.
Being no stranger to surgeries and their complications, I was convinced the risks and complications were worth it, especially with a toddler growing up at the speed of light.
I called my urologist and told him I wanted to speak to the surgeon on his team regarding the procedure.
I met with the surgeon, and although there was nothing about our meeting that gave me negative feelings, I just wasn’t 100% convinced and decided to seek a second opinion.
I was referred to another doctor who, I later learned, trained the first surgeon I went to see.
As my mother and I sat in the examining room waiting for him, a different doctor came in to find out about my history and the reason I was there. I explained my issues with self-catheterization, leakages between cathings, reoccurring urinary tract infections and the ever-growing desire to be 100% independent again.
He began suggesting solutions to every item I mentioned in lieu of jumping into the surgery.
The doctor offered a solution for my neurogenic bladder and have its spasticity slow down almost to zero and a way to minimize my bimonthly UTIs. He also pointed out I am very capable of performing self-catheterizations in public restrooms.
“I’m aware it is hard work,” he continued, “but it will prevent you from going through a very invasive and delicate procedure.”
I was confused. I went to this office with my mind 98% made up that I was having a complicated procedure done. Although the recovery period could be one step back, I was already looking toward the ten steps forward my life would take afterward.
With all this new information and the subtle reminder I had not been doing my part to get better at self-cathing, I decided if I had the surgery before giving the less invasive approach a try I would be raising a white flag and surrendering to the feeling of being defeated by this facet of SCI. That is not what I wanted.
When the surgeon finally walked in, I told him I originally came to him wanting the procedure, but after speaking to his colleague I was beginning to think I would prefer the less invasive route.
The surgeon agreed with my initial decision to have the surgery; however, the other doctor had already validated the hope I was capable of mastering this last facet of my injury.
I have started the less invasive course of action and feel more “in power” and control of my life than in the last six years.
I have not ruled out having the surgery, but not until I know I’ve tried all options and given 100% effort to attain the quality of life I want.
We Always Have a Choice
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