Note: I’m going to talk about bladders and catheters, which may get a little TMI. If that makes you uncomfortable, please direct your attention elsewhere (or read any of my previous blog posts).
When I was in college, I had a mental map of the accessible bathrooms in every single academic building and fast food establishment in Harvard Square. This was vital information, because you know that feeling you get when you really need to pee? I don’t mean that, “It can wait, but gee I wish I was near a bathroom,” feeling. I mean the, “Oh dear God where is the bathroom why did I buy an extra large coffee this was a mistake I regret my life choices,” feeling. Imagine that latter feeling being the only warning you have a minute or two before your bladder and urethra decide to betray you.
When you have a spinal cord injury (SCI), the ability to urinate of your own volition gets knocked out. The extent to which this is knocked out depends on the severity of the injury. As a result, many of those with an SCI must learn how to manage their bladder.
What are the risks of not managing your bladder? Here are a few, speaking as someone who had virtually no bladder control when I was first injured, and then had to listen to a lot of unpleasant medical advice:
- Urinary tract infections (UTIs): If you cannot feel when you have to pee, you may urinate without even realizing it. This means you are sitting in a puddle of your own making until you notice, either by smell or by touch (assuming you occasionally put your hand on your seat cushion). This will increase your chances of infecting your urinary tract, which could result in anything from a fever to kidney damage. Your chances of getting a UTI are also higher if you catheterize yourself (more on catheters later). For example, I had a 103-degree fever once during my freshman year due to a UTI (not from a bladder accident, but from the risks of catheterization). I felt so weak that I couldn’t get out of bed, and was later rescued by a heroic and dashing rugby player (i.e. my next-door neighbor) who wheeled me to University Health Services. There, I was given some much-needed antibiotics.
- Pressure sores: While at NYU Rusk for inpatient, I was given a handy manual that basically told me all of the horrors and stages of pressure sores (also supposedly complications due to a pressure sore were responsible for Christopher Reeve’s death). They’re exactly what they sound like – sores that form on your skin because there’s too much pressure on them for an extended period of time. Wheelchair users are at a higher risk for pressure sores because they sit for all of or most of the day. If you wet yourself and sit in your urine without realizing it, that makes the skin on your rear end even more susceptible to skin breakdown and pressure sores.
- Kidney damage/failure: If your bladder isn’t emptied properly, urine can build up and lead to pressure in kidneys, which can result in permanent damage.
- General embarrassment: Although this isn’t exactly a health concern, you generally want to go through life embarrassing yourself as few times as possible. While at Rusk, I could not feel when I had to empty my bladder, and my doctor said that I should be catheterized once every six hours. This was entirely too long a period to wait between catheterizations, and it was not uncommon for me to leak. One day, a friend/guy I was pretty crazy about visited me at the hospital, while I was doing physical therapy. By the end of the session, I transferred back to my chair and saw a huge wet spot on the mat I had been sitting on. I could say I was mortified, but I was seventeen at the time, so I guess, “wanted to crawl under my hospital bed and not come out until I had perfected a memory-erasure charm that would’ve made J.K. Rowling proud” is a more accurate sentiment.
Other issues can arise from poor bladder management, but the first three listed above were the ones mentioned most often to me as an inpatient. The message was basically along the lines of, “Don’t sit in your pee,” which was kind of obvious, but whatever, hospitals have a habit of making you fear for your life.
So how does one manage a bladder that’s been knocked out? I’ve tried many of the following:
- Medication: Doctors were concerned that my bladder would spasm and contract (i.e. shrink) to look like a Christmas tree (their words not mine – seriously, Google “Christmas tree bladder”), which would gradually hold much less than a typical bladder and cause more problems. Medication is supposed to relax the bladder to prevent these spasms, and works for a lot of people. It did not work for me. One medication gave me autonomic dysreflexia as a side effect, which is potentially life threatening according to the Reeve Foundation. I refused to take the medication and my doctor said I was being difficult, so I agreed to take it (which of course meant that I hid the medication under my tongue until the nurse left the room and then spit it out). I tried another medication or two, but they were mostly ineffective, so I currently avoid bladder meds. Note: If you have an SCI and are on medication, you will still probably need to use a catheter.
- Catheterization: A urinary catheter is a long tube (made of latex, silicone, or polyurethane) inserted into your urethra that goes up to your bladder and drains it. Some catheters (e.g. foley/indwelling) can be attached to an external drainage bag, which is then tied to your leg. The drainage bag is periodically emptied, while the catheter attached to it can stay in your bladder for weeks. This particular catheter has a small balloon that inflates inside your bladder, which ensures that it won’t fall out. This way, you can drink water and coffee to your heart’s content and know that you won’t be sitting in a puddle. But there are drawbacks to this. Sometimes the catheter becomes detached from the drainage bag, and then you have a mess on your leg. It also increases your chances for infection. I used this catheter system once when I flew from London to NYC, and I thought it was kind of cumbersome (and mad difficult to set up if you do it for yourself). For people who cannot do intermittent catheterization (see below) due to fine motor control issues or other reasons, this catheter may be the best option. Rachelle Friedman Chapman recently did a photo shoot where she put her catheter and drainage bag on display. The main point of her shoot was that people with disabilities can be sexy (which, I’m sorry, that needed to be Buzzfeed-ed about? Seriously, people?), but honestly, I just like that she rocked her catheter’s drainage bag.
- Intermittent Catheterization: This is my current method. It’s a one-time use bag that includes gloves, a catheter that already has lubricant on it (because lube is your friend), a drainage bag attached to the catheter (which can be torn so that the contents can be dumped into a toilet), cleaning swabs (to reduce the chance of infection), and an underpad (so you can sit on that and cath if you’re not confident in your chair-to-toilet transfers). Others can just transfer onto a toilet and use a short catheter, which is a lot less fussy, but you’d better be good at your transfers. I wanted to do a short video where I show the contents of a catheter kit, but they’re $12 a bag without insurance (it’s really expensive to have a disability), so I’d feel like I was wasting a bag if I opened it. A catheter in this particular kit doesn’t have a balloon feature to stay in the bladder, because it’s not supposed to stay in there once the bladder’s been emptied. The one-time use catheter kit is nice because then you don’t have to worry about your catheter disconnecting from a drainage bag.
- Botox: I haven’t tried this one, but yes, you can use botox to relax your bladder (although you may still need a catheter).
- Acupuncture: There is some evidence that acupuncture can improve bladder function. I underwent hundreds (like, 500+) acupuncture sessions from 2008-2014 (mostly from 2008-2010). My body still has bruises from the needles, which the acupuncturist would stick into my body and then twist. Sessions lasted about an hour. At the end of some sessions, I had chills and felt terrible. And tired. Really tired. But did it work? I think so. By the time I got to college, I could feel my bladder, know when I had to pee, and sprint like hell to the nearest bathroom to cath. Acupuncture isn’t a guaranteed solution, but it’s worth a shot.
Regardless of whichever method someone with an SCI chooses, that individual needs to learn how to catheterize themselves (or hire a nurse/Personal Care Attendant). It took me months to learn how to catheterize myself properly (which may have been because I had to learn with my non-dominant hand, which, post injury, has better dexterity than my dominant hand). It’s pretty difficult. Imagine if you will, trying to stick a small tube into your urethra when you cannot feel your urethra. If you are a man, this does not seem too daunting, because there is no way you can miss your urethra. If you are a woman, however, it is very easy to miss your urethra and send your catheter into the wrong hole (in which case you need to dispose of the catheter because you are very much at risk for a UTI if you take that same catheter and then try to put it in your urethra). Some women use a small mirror when they cath to make sure that the catheter goes into the urethra. I’m not a fan of this method because I’m pretty confident that I would drop the mirror. I also don’t use a mirror because I gradually regained most of my sensation there.
Why am I spending so much time talking about bladder issues and management? Because my bladder rules my life. Every morning before I leave my house, I check my bag to make sure I have at least four or five catheter kits (or more if I’m going to be out for longer). If I decide to drink something with caffeine or alcohol (because boy does that make you have to pee), I make sure there’s an accessible bathroom nearby. My bladder isn’t something I can hold for very long, so I have to think about every liquid that enters my system, how long it’s been since I’ve last cathed, and where the nearest bathroom is at all times (someday I’ll compile my most hectic catheter-related stories into a post).
If this is such a major issue in the lives of people living with SCI, then why don’t you know more about bladder issues resulting from paralysis? It might be that bladder management is a thoroughly unsexy topic, which is why pop culture tends to solely focus on limb function. In “Avatar” (the movie that’s basically “Pocahontas in Space,” not the awesome Nickelodeon show), Sam Worthington’s character (a paraplegic) is told he’d get his legs back if he did some shady work for the army. Professor Charles Xavier (the “X-Men: Days of Future Past” younger version) seems more concerned with walking than with his ability to use his telekinesis. A main character on “Arrow” who became a paraplegic (sorry, spoiler alert) is given some very fancy-looking technology to restore body function, and her response is, “This will make me walk again?” All the while, I just want to shout at my television, “BUT WHAT ABOUT YOUR BLADDER?! DON’T YOU CARE ABOUT THAT?!” Ask anyone with a spinal cord injury, and most of them will tell you that while walking is a useful and wonderful goal, being able to control their bladder is a top priority.
As with other aspects of managing an SCI, how someone handles their bladder varies depending on the person, severity of injury, and level of injury. In most cases, whichever method someone uses will usually work. There will, however, be instances where your bladder betrays you without warning, and you will have to play it off like everything is fine (like this one time freshman year when I had to give a class presentation and ended up talking through ten minutes of bladder struggles…may the professor whose class I took never find this blog).
Bladder management is not easy, and it’s a rather embarrassing topic to discuss because this is a function that we’re supposed to have mastered by toddlerhood. But SCIs are injuries that damage/jumble your nerves such that the things you’ve previously mastered are no longer under your control. This may be an embarrassing topic, but it’s a necessary one. And if I may address the able-bodied specifically, this is why people with disabilities care so much about the availability of accessible bathrooms wherever we go. When you have a fairly strict catheter schedule and holding it in isn’t an option, you need a bathroom large enough for your wheelchair (and ideally proper side rails and a power door for those with poor grip strength). Anything less than accessible puts your health and well being at risk. And believe me, as soon as science says they can cure paralysis, my first reaction is going to be, “YES! I CAN PEE WITHOUT USING A CATHETER!” And then I also will do a happy dance for regaining leg mobility (because I’d be pretty thrilled about that too). Until then, the accessible bathroom mental maps will have to do.