This post contains very frank and sometimes graphic discussions about being incontinent. Some of it may make you go “Ewww!”, but it is my hope that it will educate you. You have been warned. Do not read any farther unless you are willing to know more about peeing then you ever wanted to know.
We are born incontinent. Our parents, other family members, and various caregivers changed our diapers while sometimes commenting “How can someone so cute make such a big stink?” At around the age of 2, we are potty trained. Of course, each child and parenting style is different. Some of us don’t make that leap until a few years later.
Then for the next 70 or so years, we are diaper free with only minor incontinence if we are lucky. That is, unless something happens, as in my case, that changes our entire world.
In July of 2016, I had spinal cord surgery to remove scar tissue from a previous surgery. The scar tissue was causing neurological issues making it impossible for me to function well. Little did I know the surgical cure would be worse than the original condition. For you see, I had a stroke in the spinal cord that left me an incomplete quadriplegic. When I awoke I was totally paralyzed on my right side and partially paralyzed on my left. I have come a long way since then but am still wheelchair bound and incontinent.
For the first 14 months after surgery, I had an indwelling Foley catheter. There were many issues with it including UTIs and skin breakdown from the tube’s pressure. But, my bladder would not pee. As I regained the use of some of my body it was decided to try going without the catheter. Since September of 2017, I have been catheter free. Yay! Sort of.
Now, I pee whether or not I’m ready for it. For the first week after the catheter came out, I peed everywhere all the time. If I looked up at you I peed. If I reached for the keyboard I peed. And, those over the counter supplies are for someone who dribbles. When I pee it’s in volumes. I called my doctor and begged him to do something. I was trapped in my house by my free-flowing bladder. He put me on a bladder muscle relaxer to help stop the spasmodic pees.
Finding pull-ups and diapers (called underwear and briefs – ha!) for someone like me was a challenge. After extensive research and reaching out to folks in the Spinal Cord Injury group I am a member of on Facebook, I found https://us.abuniverse.com/. This site is devoted to a cottage industry for adults who like to roleplay as babies. Their products hold 5,000 ml or more! They are a bit pricey, it is hard to find my size in stock, and they really hold more than I need.
The other site I discovered is https://wellnessbriefs.com/. Theirs is the products that I use now. They use NASA inspired technology and while pricey they do the job. I wear the diapers at night as I do not wake to go pee. My bladder still doesn’t talk to me. The pull-ups I only use when out and about. While at home I use the Walgreen’s pull-ups and try to train my bladder to go at certain intervals.
A few months back I suffered a severe UTI ending up in the ER and going home with a catheter for a month. I stopped peeing for over 18 hours. Not a good thing. This happened overnight and I knew something was bad wrong when I got up the next morning. Once my doctor removed the catheter a month later, he put me through some tests. It was determined that I don’t empty my bladder completely. I stopped the muscle relaxer and went in the other direction with new medication.
Talk about a turnaround! For the next 3 weeks, I peed everywhere. It was like starting all over again. Even though I had the good stuff from Unique Wellness it was still a mess. I have spasticity and the spasms are hard on the body. They also cause stress incontinence. With the body in spasm, liquid finds the least resistant path to escape. I peed up my back and out the sides and up my front. The compression was like squeezing water from a geyser. Back to the doctor I go.
I asked him if he had a good laugh for the past few weeks thinking of me peeing everywhere. I really did. He apologized and cut back the dosage on the medication. Now, things are much like they were before the ER incident.
I am still trying to convince my bladder to release its contents every 2 hours. So far, no luck. I cannot feel my bladder at all. The only sensation I have is on the exterior as the flow starts. I rarely make it to the potty in time. I go through a lot of pull-ups at home. The doctor hopes that since I have regained control of other functions that I will eventually regain control here. There are other possible options he wants to discuss with me that involve surgery. I’m not keen on any more surgery.
So, for now, I sleep with 3 large leakproof pads under me in addition to the diaper. Most nights the pads are dry. There’s nothing I can do about the stress incontinence. In my backpack are extra pants and pullups along with the necessary cleanup supplies.
No matter how funny this may sound, it is not fun. Being a 58-year-old in diapers is degrading. I’m not the only one but that doesn’t make it any better. I won’t give up though.