I had a friend in his late 30’s with Crohn’s Disease, he actually runs a nonprofit called Crohn’s No More, and when he explained the issues that came along with this disease I was devastated. Check out his site, link at the bottom of this article. I always told him that I could only imagine what that feels like.
Another close lifetime friend also has Crohn’s, speaking to him recently, it opened my eyes to the similar issues we wheelers have. He expressed how he has to limit his eating and drinking due to this issue. In fact the only difference is that both of them know when they have to go to the restroom. I will pause so that can sink in….In reality… not being able to control your bowel and bladder functions is unimaginable… literally it’s in the top 5 of the first things we learn as humans. Now in my 30’s, to loose both of those functions is mentally mortifying. I don’t miss events in the bathroom, because the bathroom comes to me… Sure, it’s very manageable, due to the time and effort put in, bowel moment accidents have rarely occurred now. Full disclosure though… Two years in and I still urinate on myself. So sick of it🤬. You can’t even believe. My strength through HIM is the ONLY reason why I just shared this embarrassing fact about myself to the entire world. “Whatever you put on the Internet, it is on it forever.” I’m not writing this for me though, it’s for those who are new to the life or those who still have these issues. It’s for those who date or even marry to us. It’s for those who just have an open mind and want to know and better relate to us. “Us”, mentally rocked by this factor that can’t be solved overnight. I’m writing this to explain the tremendous mental toll this takes on individuals.
YOU CAN’T CONTROL YOUR BODY. Again, literally, as a child you are “potty” trained. By age 5 you have a fairly good handle on it and by 10, it’s an after thought. You feel it and either you go or hold it until your able to go. In fact, when all this happen and I made it to a Physical Rehab facility… I actually had to be taught and reintroduced to “potty training”. See, you don’t even have a signal to let you know you have to go.
Speaking of “signals”, to manage my bladder and not have an accident… I’m on that “#ClockLife”. Labeled as a “Q4”, meaning I have to cath(go #1) every 4 hours. Trust and believe, it’s not always convenient. However, when my phone goes off…
I am having to stoping what I’m doing what I’m doing and retreat to the restroom…
Do you have long term goals? Job, degree, type of car, find that special someone, or continuing to deepen your relationship with God… I have had and still have some of those. Ever had on that list… Wear underwear again. Pick up your jaw now friend. Not all of us still have the problem, but I do. Even though most people in my circle didn’t know until now, it still felt degrading. Shameful secret that still haunts me from time to time. Sure I knew that if HE blessed me with 60+ years in age, I would eventually get to this stage… BUT it’s too early… and wearing adult diapers… is just not sexy. The saving grace is adults with Paraphiliac infantilism, which are adults that role-play as babies or small child for erotic stimulation. Weird, I know, but suppliers of this industry make more desirable diapers that can at least make you feel a little better about the situation. Initially, this was a huge issue to get over and if I’m being honest… I’m not fully over it and don’t think it will ever sit right with me unless I can get back to wearing regular underwear.
52 for $35… What is this? The bi-monthly expense I now have for them. Remember when your child was born and the biggest cost was formula and the second biggest was diapers? Well I won the door prize #2, yay. Great, now I have to face the loss of my bodily functions and carry a financial burden, 🤬. Blessing though, with only a $210 annual bill. Shout out to Jeff Bezos and Amazon! No matter how you feel about him, he provides this great deal for me- just saying!
Right off the top, you sink in to your feelings. “Useless” was my chosen word and “unworthy” was echoed down to the core depths of my soul, behind the mask that displayed the brightest smile I have ever shown to the world. Even though it’s majorly reduced now, daily accidents from pushing to hard or transferring from my chair to another surface really rocked me mentally back then. See, you must use your abs and core to perform these actions. Well, pressure applied to an area that no longer has the ability to hold whatever it stores. Your bladder has no “hold it” ability. Yup, your digestive track that holds your BM is gone too. “Did I pass gas on the push or… worse?” Oh, passing gas is inevitable and you never feel it come, nor can you hold in… Be assured, 8 out of 10 times… it’s the “worst” in this scenario. Even after you get control in you manage your bowel, it can still happen every now and again. Yet another punch to the temple. Imagine a individual had their hands tied behind their back and Ali, Pacquiao, Holyfield, Rousey ,and Mayweather lined up daily to take a few open shots to this individual’s head. Have you guessed who that “individual” is? The smell creeping up to your nose and you without a bed to transfer to, so you can change quickly… Spraying Febreze To Go, $20 for 4 on Amazon, to mask it to the best of your ability. Ability, interesting word choice right? Especially when abled bodies have the ability to just lift, wipe, and toss everything away if it got to that point. So simple… but now this escapes my skill set. However, it never escapes my thoughts in those moments. I literately was on the way to the restroom to try to somewhat handle a bowel issue when I was stopped by a potential client for my company. Do you even know how hard it is to pay attention, engage, smile, and appease the potential client… while knowing and slightly smelling yourself? Mortified and humiliated for what felt like forever. Again, I will let that sink in to your cerebellum. I’m somewhat past that of facing that reality. Could you be?
Lastly, could you regulate what you eat and drink? Drinking more then normal from working out or doing an activity or having a few “happy hour” drinks mean extra cathing, so you choose to not even get in to that situation. Watching what you consume because what you ate before is not digested the same way and can lead to irregularity in the consistency of your bowel movement. That’s your life now, can you handle that?
All this is not to scare you, even though it’s scary. You can make it, but it’s not easy. You will be facing several tremendous issues and a hellacious mountain to climb if your in this situation. I hope able bodied individuals read this and understand that when you approach a wheeler, this is what they could be facing. See the strength behind that smile. Even if it’s fake, they are fighting hard. Don’t let this deter you from dating us, just know this could be a factor. My fiancé understands and is proud of how I’ve handled everything myself. She in NO way acts or performs as my nurse, but that’s another post for another day. I will just conclude with this…
Able bodies, see the mental toughness. If you have a wheeler friend, be there for them emotionally, as they battle through this issue. Wheelers, you are NEVER alone on this issue. Reach out to other wheelers, tell your story, write it down, etc. Do whatever you need to do to release this emotional dark mental abyss. It will eat you alive if not. I hope this has helped. God bless and roll in the #BlessedLife family.