I’m no expert. I’m not a urologist. I’m not a doctor of any kind actually. I have not been cathing for an extremely long time as some men I’ve met have been forced to do. But I am one of the few people who are foolish enough willing to talk openly and freely about the reality of what it means to self-catheterize multiple times a day with no end in sight. These are must my own personal observations, but they just might provide some courage for others who are put in this situation and they also will provide some measure of insight for others who may be voyeuristically interested. So here, without further adieu, are some of my own thoughts, struggles, opinions, and experiences with regard to all this mess of urination:
- It’s ALMOST all mental— The pain and anguish associated with cathing is really and truly almost all mental. Up until the last week or two it still psyched my mind out to even think about doing the deed even though while actually catheterizing it was no longer that big of deal. In other words, the idea was and is always worse than the reality. It sounds terrible. It sounds terrifying. It sounds like the worst. But it’s not, it just really isn’t.
- It’s NOT All Mental— Ok ok, while most of it is mental, it does hurt. I just feel like this piece doesn’t really need to be said. I feel like this piece is obvious and offers no new insight. It doesn’t feel good to stick about nine inches of tubing into ANY part of your body let alone something so private and protected. I don’t believe anything more here needs to be said, but it does belong on the list.
- UTI’s Are No Fun— Bladder infections complicate everything. I believe that for a majority of the time I’ve been cathing (maybe all of it) I’ve had an infection. When the UTI is raging it makes cathing so so much worse (pretty much I’m referring to straight up pain and bleeding here). So do your best to keep as clean an environment as possible when cathing. Wash your hands lots when you’re getting ready to do it, wear gloves, sanitize, do whatever you’ve gotta do to be clean and to not allow extra bacteria to follow that tube down into the depths of your organs!
- Know Your Tubing— There are different sized tubes, there are different types of tips to them, there are different levels of rigidness to the tubes, and there are tubes for different purposes. It’s valuable to know not only which kind you prefer but also what each type offers you. The smaller the tube the easier and less painful it is with the trade off being that it takes a whole lot longer to empty ’cause it comes out so much slower. The more rigid the tube the easier (I think) it is to push past the prostate (that’s the painful part) but it is, clearly, more rigid and thus a little more rough if you ask me. Anyway, you’ll learn which types you prefer OR you’ll live off samples like me learn to cath with whatever people give you! In the hospital, for example, they didn’t seem to know what they were doing so even after repeated correction they gave me a Foley catheter (the semi-permanent type that have deflated balloons spots at the end) that I eventually went ahead and used. It hurt a bit more. But I succeeded. Give me a lead pipe and I’m pretty sure I can figure it out.
- Twist— A little tip: if you’re using a straight cath with no coude tip (a slightly upturned tip at the end) try twisting it while you insert it. It seems to work lots better. Just an idea.
- Lidocaine is a Joke— Many people prefer to use numbing gel before cathing. And you can if you want…but…well, it only numbs the part that doesn’t really hurt at all. The most painful part is pushing past the prostate and ain’t no gel getting that deep in. If it makes you feel better emotionally…cool. But it doesn’t really do anything for you so I’d save your money for other things if I were you.
- Relax— Part of what made it more painful early on (besides the raging UTI) was my stress level. My body would be tense and rigid, my breathing was intense and labored, and I did not have a relaxed demeanor whatsoever. Finding ways to relax your body is going to make it so much easier and less painful. Play some music, do some deep breathing, etc. do what you’ve got to do to chill and give your body a chance to play its part peacefully.
- It’s All About Control— The reality is that self-catheterizing gives you control back. I don’t know what your context is (if you’re one of the people reading this and cathing) but for my situation the option to straight cath myself gave me back a measure of control when compared to having a more permanent bag strapped to my leg. As I’m learning to master this thing (and, no, I don’t think I have yet) I’m realizing that it’s giving me back a measure of control over my body and what I can or cannot do. This is a good thing (even if it is just an illusion) when due to sickness everything is feeling horribly out of control.
- Catheterizing Robs Control— Ok, so to totally disagree with what I just said…this has been a really hard transition. Discovering that my bladder no longer worked was incredibly symbolic to me for how out of control my life/body had become. I no longer had anything to hold onto: I can’t even pee like a normal person anymore! What do I have left? Being forced into cathing really reminded me that I’ve got no control in my life left. I’m at the whims of my disease. This was a painful reality. Very painful. Very painful and very much something that deserves to be grieved. Not only is it ok to be incredibly sad if you have to cath regularly and for an unforeseen period of time but I think it’s ok to be mad about it too. This stuff sucks and it’s unnatural and it hurts and even if it’s manageable it’s not something you ever wanted to say that you had learned to manage! So, yes, you can do this AND yes, it sucks to have to do this.
- Don’t Stop Moving— Another random and important tip: don’t ever stop moving. When you’re inserting the tube don’t stop inching forward. Ever. Even if you’re only moving ever so slightly, a millimeter at a time, don’t stop or hesitate for a second. ‘Cause it gets to a point where you question whether you should pause or back out and start again. Both are bad ideas. If you always inch forward then by the time you’ve thought through “should I stop or back out” you’ve most likely already past the small part that hurts bad and have entered into the spot that doesn’t hurt so bad. So trust me, don’t ever stop or pause. Just keep movin’.
- Keep it at Home— If you’ve got the choice or if you can schedule it accordingly it is ALWAYS so much easier and better if you can do your business at home! Man does it get more difficult on the road! Regarding cleanliness and ease it is just so so so much better if you can keep it all in the house. Sometimes this isn’t a choice, but it’s definitely worth you thinking through your schedule (both your calendar and your urination routine) to see if you can be proactive in only cathing at home. Good luck!
- Don’t Blog or Talk About it— ‘Cause that’s just gross. Keep potty talk around the potty please. I mean, seriously, who talks about this stuff in public? And who in their right mind talks about this stuff for the entire world and any stranger in it to read? Bad, bad, bad idea…and a little gross if you ask me (which you didn’t)
I’m sure there’s more to be said, more that should have been said, more that I could’ve said. There’s always more. My hope here wasn’t just to lose a few readers while popping up on a few new and strange Google searches. Instead my hope really was to bring some awareness to something that people just don’t talk about. I realize that in many ways this is a very private topic, and I did my best to respect that in my brief discourse, and I realize that private things often deserve a private setting to be talked about…but…well, I don’t have a great rebuttal to that aside from saying that I’m not always against taking the private and making it public.
Enjoy (but not too much ’cause that would enter into creepersville and that’s not the type of blog I’m trying to write here!)
brutal
Ryan, thank you for being so willing to talk about issues that people don't like to talk about. As a nurse I can't tell you how many times I have told patients that things like this are nothing to be embarrassed about and that a lot more people deal with these issues than they realize. In the spirit of trying to make them understand this I often confide in them that I actually had to go to physical therapy for urine incontinence long before I had a baby. (Sorry was that too person for this blog ;)) So thank you once again for your openness and honesty, you are helping more people than you know.
Your last point made me laugh. um…. Some of those others? They made me CRINGE.
Ryan – I'm not self-catheterizing right now, but have in the past and well may have to do so permanently at sometime in the future. So, I appreciate this blog post.
As I've already said here in comments before, I've been diabetic 42 1/2 years (Type 1) on insulin (now a pump). So, I well know many of the feelings you've described here, some in each point (except that, fortunately, I don't have to work past a prostate gland). I've long had fairly major bladder dysfunction from nerve endings to my bladder being damaged, thus making it sometimes nearly impossible to empty my bladder. So far, I'm taking a medication four times a day that helps immensely and has kept me from retaining too much urine in my bladder. I was having continual UTI's for a long time (I'm really identifying) and that was the reason.
To be perfectly honest (and I've not even talked with my husband about this), I have no idea right now how much my bladder is retaining each time I try to empty it. The last time I saw the urologist was about probably at least 15 years ago, probably more. I've done okay (well – no UTI's, till recently) so have been telling myself I'm okay, don't worry about it. Just take the 4 pills a day and live as "normally" as possible. I say normally, because like you with your bladder issues, I have to "worry about" and think about 10 or 15 different things every morning when I get up just to get going and also whenever leaving the house, all from being diabetic with so many different needs and problems.
I'm a big chicken about the self-catheterizing thing. It scares me to death to think about having to do it all the time, adding yet one more (as you so aptly put it) loss of control issue to the many others I face on a daily basis trying to stay alive a while longer with this insidious disease. So, you talking about this very private matter encourages me to be more – what? – maybe courageous, if it comes to the point, in actually having to do that to stay relatively healthy and alive. It IS depressing to feel like we do not have good (or any) control over our physical bodies. I try to be as magnanimous about it as I can, because certainly other people around me don't have a clue and think, if anything, I'm overly cautious about my health. But, hey – they don't have to live with it like I do and my husband does.
There's a lot more, but I won't bore you any further or your other readers. I've been praying for you steadfastly since hearing of you through Mike Cope's blog and will continue to do so. God Bless you and keep you in His care.
Dee
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