Now that I have “mastered” the art of self-catheterization, it has just become part of my everyday (well every 4-6 hour) lifestyle. I am successful outside of my own bathroom and having few issues with the process. The biggest point of frustration with my bladder and the process is having to be always prepared. I have a small cosmetic bag full of any necessary supplies. Most of the time, I remember it if I am going somewhere without my wheelchair(I keep it on the back of my wheelchair).
In the spirit of losing all modesty, medically speaking, I also want to disclose my other issues with what I like to call, “My Stupid Bladder.” I am dealing with incredible urgency issues- like a 3 year-old- who just left the house after being told told to use the bathroom before getting in the car, but of course did not have to go- issues- BOOM! They can be painful and because of recent events, I cannot move quickly to get to the toilet all the time. If I am out of my apartment, it complicates matters even more.
Additionally, despite not being able to successfully urinate on demand, my stupid bladder leaks. This I believe is the worst symptom, as it is unpredictable, unpleasant, and embarrassing. I have found good success with my favorite Lil Helper reusable pads and “system” These usually prevent leaks from being a bigger problem, as I stubbornly refuse to start bringing a change of clothes with me places. I highly recommend them for both urinary and period issues. SO much more comfortable than disposables and such a better option for the environment. They are super easy to “deal with and clean.”
This past Thursday, I went back to MUSC for more bladder studies and an appointment with my wonderful urologist. I completed a urodynamics video study that required not much more than my lack of care for modesty. Basically, I sat on a converted table-to-chair where various catheters were placed to record bladder “strength” and other measurements. I then received a large amount of fluid into my bladder that contained contrast material. During the filling, various x-rays were taken of my bladder and vitals were kept.
The nurse recorded when I reported that my bladder was feeling full and would need to urinate soon, needed to urinate immediately, and feeling immense pressure to urinate. She then told me to try “going” which of course was unsuccessful. She then cathed me and I felt immediately relieved!
After cleaning up, changing, and getting settled into a regular room, the urologist came in and started talking. The study showed that although my bladder can hold a large amount (thank you teaching), it cannot empty on its own. So in addition to being “a floppy bladder,” it also shows signs of detrusor under-activity (essentially the muscle used to empty the bladder is weak). He recommended trying an additional medication to help with all my symptoms as well as starting botox treatments for my bladder.
Botox would be administered via the urethra and would involve many injections each treatment(30-50). None of this sounds like fun and would need to be repeated every six months or so in the urologist’s office. The upside would be that If/when it works, I should be completely dry! So that part is very exciting! I am signed up to start in 6-8 weeks.
So there it is. There is nothing glamorous about any of this and yet the self-catheterization process is in a weird way, empowering. The learning curve was steep and medical professionals seem to always be impressed that I mastered it. I see it as one more thing to keep track of, that is needing to always be sure I have enough supplies on hand, do my part to prevent UTI’s, and keep smiling!
I will be sure to keep you updated on my bladder, and I was about to apologize for the more “graphic/medical” approach to this post, but feel strongly that more information needs to be shared about this “private” matter. Like I said, my modesty is out the window, anyway! Please reach out to me if you have any questions, especially if you are going through bladder issues.
