What Pain Steals

TW: Surgery, hospitals, pain medication, bathroom-oriented bodily functions.

I was going to write an entirely different post, & I still will write that post, but pain has stolen that from me right now. I have something called Cauda Equina syndrome & it's been incredibly bad lately. Cauda Equina syndrome is a rare, severe compression of spinal nerve roots at the bottom of the spinal cord (called the Cauda Equina) where the nerves start to split off to the legs. It can involve nerve damage, extreme pain, numbness, & bladder & bowel dysfunction, and my roll of the dice gave me all of them. I had emergency surgery that should have happened months prior in about 2014 when I went to the hospital after waking up & pinching off a part of one of my discs, leaving me completely numb in the ass. Where I went wrong was forcing myself to pee by basically squeezing the urine out of me because I felt like I was going to burst. That led the nurses & doctor to think I was less damaged than I was & put me through months of physical therapy & a couple more hospital visits before they actually listened to me & got me in to surgery.

I apologize, but I'm going to talk about bathroom oriented bodily functions. Yes, I'm going to talk about piss & shit & the lengths we can go to before someone finally LISTENS to you & actually tries to fix it. It only took switching to an entirely different medical group when a former doctor (nurse practitioner? I don't remember) suggested I find religion instead of actually helping, but that's a rant for another day.

I didn't have pain until after my surgery. In fact, the entirety of my ass was numb. That at least was kind of interesting. Sitting without actually feeling your butt was so weird. It felt kind of like floating a few inches above the chair. But it was also scary. Something was clearly wrong. I couldn't pee unless I squeezed myself. Occasionally I'll still have to do that to a much, much lesser extent if I'm really bad. But even more concerning was being unable to poop.

I don't talk about this often. It's not exactly polite dinner conversation, but I can't shit without some kind outside help. For years, literal years, I would put on a latex glove & manually remove the shit from my rectum. Imagine trying to explain that to doctors & nurses over the years who just didn't grasp how severely l was affected. I have to hand it to most of them, who controlled their disgust reaction when I would tell them how I handled bowel movements (or the lack thereof).

So, I spent months going to physical therapy, using fancy machine after fancy machine that did nothing to bring back any feeling or functionality. It was only after the third? trip to the emergency room to try to get some actual help, that they scanned my back & saw what was wrong. I had a chunk of a disc floating around not attached where it belonged & my nerves were dying. My surgeon was pissed, to say the least. If I had been in surgery from the initial ER visit, my nerves would probably have been fine. As it was, I would be lucky to have any functionality to my downstairs back at all.

The surgeon did what he could, & I was able to get back most sensation, but it came with a not so wonderful side effect: pain. Post surgery pain wasn't horrible, considering they cut me open & were fishing around inside me, but I was getting a little too antsy anticipating my next dose of oxys. I asked to be taken off those & to be given a less addictive form of pain meds (the presence of mind to recognize the start of addiction is something I'm eternally grateful for & has given me a new appreciation for people in recovery from addiction). I still had some numbness, but I could actually feel it when I sat down, so that was great. The surgeon said my nerves were going to have to grow back bit by bit but they might not come 100% back to normal.

Over time, it got easier to pee, but my ability to shit just would not come back. I became close frenemies with my own asshole for years. This is where the Cauda Equina syndrome really starts to kick in. With my Google-fu research skills I learned that the Cauda Equina pain came from my nerves being irritated, which doesn't help healing. I eventually switched to stimulant over-the-counter meds, which have their own dependency issues, but I was finally able to go most of the time without a glove. Nowadays I largely depend on stimulant suppositories & MiraLAX.

What's gotten worse, however, is the pain. It's pain that cannot be ignored & only gets worse over time as my bowels become full. It's that fullness that presses on my already irritated nerves. Peeing can relieve some pressure, but if I'm out in public or at my public-facing job & can't be running to the bathroom every 5 minutes when a suppository kicks in the pain can become unbearable. Now since I've been on Wegovy (one of the weight loss shots) in preparation for weight loss surgery, my main side effect is gas. Just like it's hard for me to shit, it's also hard to fart, & since I have a shaky relationship with my ass already, I don't push farting without a toilet.

So, that's why I can't tell you the story I intended to tell you, and I get to tell an equally personal, but much more gross story. It's also the story that affects me the most right now. The pain has been getting worse and worse as time goes on. It becomes less and less bearable. The only thing that helps is relieving the pressure on my nerves, and when I can't do that I run out of all my energy so fast. I'm hoping that getting off Wegovy, even though it's been one of the most helpful medications I've ever taken and I don't regret it for a second, will help with the gas pressure, leaving me to just deal with the regular pressure I deal with every day.

Take care of your backs, kids.