THE “OFF LIMIT” SOCIAL TOPIC
The other week I was watching my fiancé wake up in the morning to get ready for a trip he was preparing to embark on. As I watched him bright and early in the morning I thought how seamlessly he could get ready as compared to myself. When he felt the need to go to the bathroom, he simply went; when he wanted to brush his teeth he just grabbed a toothbrush and started brushing; when he was ready to put his clothes on he picked up both his legs, put them in his pants, and zipped up his fly. These may seem like trivial things, but I was watching in complete amazement because these are things that I need help with on a daily basis, and will continue to need help with for the rest of my life.
There is a topic, however, whether you are paralyzed or not, that is just kind of taboo to talk about in society. Bowel and Bladder. Going to the bathroom is such a natural function that we all go through every single day and many of us do not give it a second thought. When you feel the need to pee you sit down on the toilet and go. When you have to poop you sit down on the toilet, push, nature takes its course, and you’re done. These are not things you generally want to think about as many couples who have been married for decades still close the door when they go to the bathroom. I, on the other hand, need help with these functions all day long.
You see, when one sustains a spinal cord injury the nerves that control how you go to the bathroom are wrapped around the coccyx area of the spinal cord. This means that no matter what level of spinal cord injury you sustain whether you are a quadriplegic or paraplegic, your bathroom functions will be impaired — No matter what! However, there are some folks with spinal cord injury who do have some control, but if you are a quadriplegic like myself, it is likely that you have pretty minimal control of going to the bathroom on your own, feeling when you need to go to the bathroom, or are able to do it by yourself.
What does this actually mean?
Many of you know that folks in wheelchairs have catheters to pee, but you don’t really think about how we poop. I mean why would you? You don’t normally go around looking at a person wondering how they poop in the morning or at night, and it is highly likely that you really don’t want to 😉 I’m all for learning about everything and anything I can get my hands on when it comes to advancing my knowledge in all aspects of life. With that said, this blog might be slightly graphic, but it is an important topic that you may find interesting the next time you pass somebody in a wheelchair in public, and perhaps wonder how they go to the bathroom.
I can’t speak for everyone a wheelchair, but I can enlighten you as to some of my experiences that take up a great portion of my day, thought process, and affect my daily life. Prior to my accident I never really thought critically about what folks in wheelchairs go through when it comes to their bathroom functions.
The Joys of a Catheter
When I was first injured and in the ICU days went by until it dawned on me that I had not peed or so I thought. I asked the nurse what was going on and she told me that there was a catheter in my urethra that was allowing the pee to leave my body, so I would not die. I was so bewildered because I couldn’t feel a thing down there, nor did I have any knowledge of how to really use a catheter or what this really meant. Depending on your injury, there are many different ways to pee with the spinal cord injury. If you are a paraplegic and paralyzed from the waist down it is likely that you don’t need a catheter inserted inside your body at all times, which I will dive into shortly. Often times many folks who are paraplegics and have full use of their hands can take a small little sterile catheter kit inserted into their urethra on the toilet and it will let the pee drain out of your bladder out. However, if you are a quadriplegic and your hands + most of your arms are paralyzed this is not a very practical solution. So, for those that are quadriplegic and fully dependent other human beings there are several options to pee.
Intermittent / Foley Catheterization This is where you physically have to take off your clothes every few hours and insert a sterile catheter kit into urethra and pee into a bag. I know many folks that do this, but in my personal opinion it is a literal pain in the ass because you are limited to going out for a few hours at a time and then having to come back home, take off your clothes, put a catheter in your urethra, pee in a bag, get dressed, and go back out again. It’s not a particularly great way to create a mobile lifestyle if you are quadriplegic and someone has to do it for you. You can also use the same tube and leave it in as a something called a Foley catheter instead of taking it in and out, but leaving it in your urethra can cause long-term complications.
A suprapubic catheter is where a surgeon makes a small incision right over your bladder during a small surgery to insert a catheter tube directly into the bladder. It is very minimally invasive and reversible. You may ask how does this tube not just slide out? Well, you insert a small syringe of saline water to create a balloon in your bladder to literally keep it from falling out. You have to use a sterile procedure to change the physical catheter out every few weeks in order to prevent infection. You also have to be careful because when you’re changing this tube out of your bladder the hole can close up within 15 seconds to 15 minutes. You have to be quick!
You then connect this catheter to some sort of bag that you can wear on your leg or belly, etc. where you pee into the bag, and empty it once it gets full. Some folks let this bag drain continuously, which is not great for the bladder because as I learned early on your bladder is one of the only muscles in the body that cannot stretch out once it shrinks. You have to have a special operation called the bladder augmentation to expand your bladder again. The challenge with letting this catheter drain at all times is that once your bladder becomes small a lot of sediment can build up inside your bladder, which can shrink down to the size of a pea. This often times results in constant urinary tract infections, which leads to the consistent use of antibiotics that can literally make your life hell for being on antibiotics all year round. This is an entirely different topic for another day.
However, you can close off the catheter for hours at a time with a small clip and when you feel the need to pee you just open a clip, and then pee into the bag. This is what I personally do and I absolutely love it. I have a tube coming out of my bladder and then a bag down my leg. However, I absolutely think it is the best thing since sliced bread because I never have to worry about going into a handicap bathroom. I can literally grab a cup, empty the bag on the side of the road, and just keep going. It has greatly improved my quality of my life, which is really what most folks with spinal cord injury are trying to do on a consistent basis.
Another question you may be wondering is how do I know when I have to pee?
While everybody with spinal cord injury is different, your body, despite being paralyzed, has an interesting way of telling you when something is wrong. When your bladder fills up your autonomic nervous system, think “automatic” nervous system is the nervous system that controls functions that you don’t even think about such as blood pressure, heart rate, thermal regulation, etc. Anyway, when something is wrong whether your bladder is full or someone has stabbed you in the leg, for example, your body tells you by raising your blood pressure first. Following a rise in blood pressure is when the body then will give you a different sign to let you know what type of pain you might be experiencing. For example, when I have to pee I get these tiny little goosebumps on my forearms and 85% of the time I know it’s my bladder. I then pop open the clip on my catheter, and I pee away J Even being paralyzed your body will always give you signs and signals that something has gone awry. It’s quite amazing if you think about it.
My personal suprapubic tube covered up by some tape before I go swimming. I took off the bag and put this little flip flow valve and then I tuck in my bathing suit when I swim.
The actual hole of my suprapubic tube into my bladder. I am told by my urologist that it is the most picture-perfect little stoma (hole). Sometimes it can get quite infected, bleed, get irritated, etc. I am very particular about how I take care of her 🙂 she does help me survive after all!
This procedure involves a more in-depth surgical procedure that requires re-plumbing of your insides. Basically it allows you to pee out of your belly button. Strange you say? That’s what I thought too, but it’s actually very cool as a long-term solution that provides many folks who have some function of their hands the quality of life to catheterize themselves. It’s not a great option for me as my hands are fully paralyzed and I wear tight clothing, but I know plenty of folks who have it and absolutely love it.
Basically they take your appendix or a piece of your intestine and create a type of tube (Stoma) from your bladder all the way up to your belly button, so you can literally pee out of your belly button. When I first heard about this procedure I thought “well what on earth prevents pee from not constantly draining out of your belly button?” I then learned that they take a piece of your internal rectal sphincter and put it up toward your belly button to prevent the pee from coming out. It basically acts like a valve. So, when you feel the need to pee you take a one-time use catheter, stick it in your belly button, and pee into a cup, bag or toilet.
If you do have some hand function it is a very cool solution because you can just go into any bathroom offering the independence to catheterize yourself.
While the suprapubic catheter option is very cool and definitely less invasive many folks who are quadriplegics and have some hand function cannot bend down to empty a bag on their leg, so this is a great option for the long run. However, you have to be aware that it is a grueling recovery process and irreversible.
There are of course several other ways, surgically, that one could pee, but these are three main solutions I am familiar with. This is probably more than you needed to know about how we, as spinal cord injury patients, pee, but next time you have that urge to pee and quickly pull down your underwear think about what it takes for folks with disabilities to do the same thing. It’s doable, but everything is about quality of life. Personally, I want to streamline my life where I spend less time on spinal cord injury care and more time on living.
The Time Consuming Art of Pooping
This is more of a dreaded topic for most folks with spinal cord injury because who wants to talk about how they poop? It’s not like you sit down with a bunch of friends and talk about how you went to the bathroom that morning, but in the world of spinal cord injury this is such an important topic because it can literally make or break your quality of life in every way possible. Most folks don’t even want to approach this topic in conversation because it can be terribly embarrassing, mortifying, a literal pain in the ass, and not something you want your friends, family, colleagues, etc. to think about. However, for the many of you that know me I am a bit of a nut, extremely open about my disability, and always like to shed light on wildly embarrassing topics 😉
I’m speaking more for quadriplegics now, but with most spinal cord injuries you don’t feel that desire to poop. So, how do you just not go around having bowel accidents all day long, which some people do unfortunately, in order to get out of your house without worrying about pooping all over yourself?
When one is first injured with a spinal cord injury they teach you in rehabilitation to do something called a bowel program. Here they teach you to poop every day or maybe every other day depending on your schedule. Nurses teach you to use a suppository that you insert into your bum, let it do its magic, and voilà … poop comes out. The basic science behind an enema suppository is that while we don’t have active working anal sphincter muscles like most able-bodied folks do, the suppository literally draws down the poop from your colon, and pulls it out of you rather than you pushing it out. Now it may sound very simple, but most folks I know have a schedule of when they want to go to the bathroom. Some folks prefer the morning, some the night, some prefer to sit on a type of shower chair that has a poop bucket underneath, some like to lay sideways in bed and poop on underpads, etc. It can get pretty graphic, but the basic concept is that you create a routine for yourself of when you poop.
To make matters more embarrassing when you poop, you usually have to have a caregiver or somebody go in your bum and make sure that there’s no more poop left to ensure you don’t have any accidents for the day. Yes, I’m not kidding, you literally have to have somebody put their fingers in your bum and scoop out the leftover poop.
Graphic? – Sure! Embarrassing? – Perhaps! Necessary – Absolutely! A part of quadriplegic spinal cord injury life? – Unfortunately Yes!
When you’re trying to teach new caregivers how to do this it can be quite a feat almost like training to climb Mount Everest because you want to make sure that when people are digging around in your bum they’re not attacking you 🙂 I try to make jokes as I teach because it’s the only way know how to get through it.
At first I was mortified at the idea of having to do this every morning because it can take anywhere between 30 minutes to 2 hours depending on your diet. Think about it… Most folks just roll out of bed and can be ready within 20 to 30 minutes; I have to plan at least an 1 ½ every morning to go to the bathroom, get dressed, and get up in my chair. There’s no way around it for me.
Onto my diet! The sacrifices I make for my butt are absolutely ridiculous. Seriously! I personally much prefer to feel safe and confident that when I go out each day I won’t have a bowel accident when I am out. Of course since I don’t have any control of my bowels things can definitely happen if you get food poisoning, eat a food that doesn’t agree with you, etc., but I literally eat for my butt.
Let me explain because it probably sounds pretty weird …
So, I am a bit of a health nut, and I know not everyone is, but I personally find a diet that is super clean, healthy, and in small amounts allows me to poop the same amount at the same time every day. This gives me tremendous peace of mind of knowing that when I want to go out with my friends or out in public I won’t have a bowel accident in the middle of the day. However, this requires significant sacrifice on my part because even when I see the Oreo that looks insanely yummy, leaving aside weight gain in wheelchairs, I always forgo this option. However, on special occasions I do have naughty foods, but just a bite, not a whole piece of cake. I’m too terrified for how my body will react, and while this may seem sad, it is a conscious choice I have decided to make and live by. Some folks with spinal cord injury say ‘screw it’ and they prefer to eat whatever they like and ‘damn be’ the consequences because food makes them really happy. Again, personal preference.
I do love food, but I eat more for fuel and try to find my enjoyment elsewhere in life because the anxiety I used to have when I was first injured of having accidents was just too much to bear, and I refuse to go through that again if I can help it. Actually, when I was first injured for the first year while my body was trying to acclimate to spinal cord injury I would have accidents all the time, several times a week, and would have to rush home to get myself cleaned up. It was mortifying, embarrassing, and I wasn’t on a very stable bowel program at that time because I just couldn’t figure out what my body needed or wanted yet. I pretty much shut myself in the house for two years, was unable to go out with my friends, and I felt completely horrible.
Think about it for a moment … Not knowing if you’re going to have an accident? Try to imagine when you have a stomach bug and you lock yourself in your house for a few days because you just can’t control when you have to go to the bathroom. It’s something like that for a spinal cord injury folks 🙂
How do you tell the people you’re having lunch with “Oops, sorry, I pooped myself, I’ll see you guys later… I’m a 30-year-old woman (at that time), but I’m really like a baby and I need to go have my ass wiped.” Yes, not so socially acceptable to talk about and terribly embarrassing. At this point 8 years later I have things pretty much figured out and when I do have any issues it is usually at night time in my home, which I’m much more comfortable with.
Unfortunately, there are so many things that can affect your bowels and create havoc such as antibiotics, fried foods, not drinking enough water, stomach bugs, etc. If you are able-bodied you can just stay home and lock yourself in the bathroom. However, if you are a quadriplegic you need someone to help you at all times, which means having someone deal with your poop. I personally prefer to approach poop with a dark sense of humor, clearly, as it is a natural human function, but in society today it is such a taboo thing to talk about. It’s a shame really. The myriad of poop jokes I’ve accumulated over the years have kept me going with laughter, little bit of crying, and a sense of humor.
An Alternative Poop Solution
There is, however, a way to prevent these type of embarrassing bowel accidents, which many of my friends have taken the steps towards, but I’m just not quite ready. It is a surgical procedure called a colostomy. Some of you may know what this is, but others may not if you don’t know people with disabilities.
A colostomy is a procedure:
A colostomy is a surgical procedure that brings one end of the large intestine out through the abdominal wall. During this procedure, one end of the colon is diverted through an incision in the abdominal wall to create a stoma. A stoma is the opening in the skin where a pouch for collecting feces is attached.
Basically you poop out of the bag from your tummy, but you eliminate any real issues of bowel accidents. This can be a major quality of life change for many folks especially for those who don’t have reliable caregivers. Ultimately, you are pooping out of the bag, which sticks to your belly. You change the bag several times a day depending on your routine. It’s not very sexy, although having bowel accidents is not very sexy either, but it can literally change people’s lives. I actually just had a friend who showed me theirs and I thought it was super cool, but I’m just not ready to quite slice into my intestinal tract just yet as I went through 6 ½ years of surgeries and medical hell, and I’m now just enjoying the last two years of life without any medical problems so to speak.
I couldn’t resist!
However, you better believe that when I’m in my 40’s I do not want to be training new caregivers how to dig around my butt, deal with bowel issues, etc. It is something I will definitely put on my docket of things to do in the years to come, but I have presently found a semi-homeostasis with my butt at the moment. We’ve developed an odd relationship where we work together – kind of like a give-and-take relationship. However, if she acts up and causes me consistent challenges in the years ahead — then colostomy here I come!
Well folks, this is probably more than you ever needed to know about how folks with spinal cord injury poop and pee, but we all do it even though we may not talk about it, but this is a reality I and millions of other folks deal with on a daily basis! Now, everyone might do it slightly differently, but I’ve given you the general gist of the internal plumbing of how I work.
Whenever you get together with folks and ask about the weather, politics, how’s the family, sometimes I wish people would just ask “How was your bowel program this morning?” 😉 Yes, I realize I have a warped sense of humor sometimes, but hey, it gets you through the day at times!