NMO, My Spinal Cord Stimulator, and Bowel and Bladder Issues
In 2017, after I had my first attack, I was left with a spinal cord injury that consists of lesions from my brainstem to my t12 spine, which is about halfway down the back.
Bladder and bowel troubles
With most of my longer lesions being in my cervical spine, I was left with severe bowel and bladder dysfunction. During my hospital stay, I learned just how bad bladder dysfunction can get when coming down from an attack. I had a tube connected to my urethra because I couldn’t go on my own. This is all not to mention the severe pain I experienced every time I tried to go on my own.
I thought this would be temporary
What nobody told me was that these issues weren’t a temporary symptom. After leaving the hospital, I quickly learned just why these issues with my bladder weren’t going away. I had to use catheters daily for several years. With my bowel dysfunction, it became so bad that I was diagnosed with gastroparesis, which is partial paralysis of the stomach that can prevent it from emptying. For 4 years I would only be able to have a bowel movement once every 6-8 days.
Things just weren't connecting
With my spinal cord injury, my brain couldn't connect to my bowel and bladder to let it know to empty. It’s like those circuit boards you make in physics: when one is thing out of place or disconnected, the whole board will partially light up, or not at all. In this scenarios, the spinal cord is the circuit board and the lights are all the things we do with our body, like bowel and bladder use.
I was set to undergo these major surgeries
I had been on so many medications to try and get these damaged nerves to work. Unfortunately, nothing did work. After 4 years I was scheduled to get a gastronomy tube, often called a g tube, which would provide me with nutrition. After that, I was supposed to undergo an ileostomy, which reroutes the small intestine through the abdomen and into a pouch.
There was some hope!
I moved states to see what other options there were for my very advanced neurogenic bowel and bladder dysfunction. I arrived at the office of a world renowned gastrointestinal doctor. He ran every test he could to identify which nerves were damaged. He said if he couldn’t get me approved for a bowel stimulator, he would need to perform my GI surgery. I arrived at my urology appointment a few weeks later, and they were able to get me approved for a spinal cord stimulator that works on BOTH bowel and bladder!
Things have changed a bit!
After four-and-a-half years of being bed-bound from these two issues, I had two surgeries for my stimulator and took about two and half months to fully recover. Now my quality of life has changed so much, and I can control the use of my bowel and bladder with less pain. To read more about the surgeries and to see footage of the journey, stay tuned for part two!
Do you experience bowel and bladder issues as a consequence of NMO?
How often do you experience public spaces not being ADA compliant?