Category Archives: Health

The Truth About Catheterizing

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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!)

Our Story As Best I Can Tell It Now

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I don’t know why I didn’t do this first thing, but let me lay out for you as best I can the story of what’s been going on the last few months with regard to all this filthy disease stuff.

  • Over 4 months ago my right leg randomly stopped working. There was no pain, no numbness, nothing particularly alarming. It just flopped. I actually noticed it while walking down main street, I was annoyed at the sound of my foot slapping the ground. I didn’t think much of it and just tried to walk “better” to the extent that I didn’t even think to tell my wife. It was probably a strained muscle (I work out so often right?!). Jess noticed about three weeks later as she claimed I was “lumbering as if i had gained weight”
  • My parents bugged me, my wife lovingly requested me, and finally I saw a doctor. The doc checked me out, had me stand on one foot (poorly), and a battery of other tests that showed that…surprise…I couldn’t stand up well. She began to order an MRI of my lower back because of my single symptom but instead decided to check with a neurologist colleague at OHSU who changed the order to a neck and upper back scan. This change changed everything. Had it not been for that change the tumor would have been completely missed by the scan!
  • And then my clinic did what they seem to do well…they never followed up on the MRI order. In a way it worked well because it allowed us to continue our family trip to Disneyland without any larger impending cloud raining on our adventure. The only negative here was that the week before our trip south I started getting more symptoms. Numbness in my feet, sharp unbearable pains in my back, tingling in my ‘good’ leg, and shooting abdominal pain. In one last effort I tried to see my doctor before we drove to the DL but was informed that she was only seeing women that day…so I laughed, wrote it off, popped lots of Advil, and waited ’till we got back from our trip.
  • Disneyland was awesome and I won’t tell you about it here. The stroller served as my cain and I hobbled around just fine. I had to be somewhat cautious about what rides I went on and only made a bad choice once…or twice. Otherwise, a slow pace, a stroller, lots of pauses, and Advil kept me moving just fine.
  • On the first Monday back from an amazing time in Disneyland I was finally able to sit for an MRI (it only took me calling the MRI office and my clinic to personally make the referral happen). From morning ’till afternoon I laid still for differing MRI machines as they sought a powerful enough one to see through my massive muscles (I think that was the reason). They told me it’d be 4-5 days to get a report but it was that very night that we had a missed call from my doctor…For me this was the first legitimate sign that I actually had something wrong: super rushed results.
  • Tuesday morning we went into our clinic for a follow up appointment to Jones’ swollen lymph nodes and I came along to hear from the doctor instead of over the phone the rushed results of my MRI. I and India in one room with my doctor, Jess and Jones in another room with his doctor, we came out to share the news with each other that I had a spinal tumor and Jones could possibly have lymphoma. Not a great start to the morning. From the lobby Jess left to get Jones’ chest x-rayed and I left for a meeting…and our day was off (though this time with some new knowledge!) My doctor assured me that she had rushed the surgeon referral and that I’d hear from a surgeon within 24 hours to answer any of my questions (because she had very few if any answers) so without any information really (size, type, placement, etc.) I waited to hear from a surgeon.
  • By Wednesday afternoon I had still not heard from a surgeon, so I called and got my surgeons number and rang his office…they’d never heard of me nor received a referral. So I called my clinic and they let me know that it’d be a two week process to get the referral through. I asked to see my doctor (still wanting some basic info and some pain meds) and they said that she wasn’t in but that I could schedule an appointment for June 13th. I asked when she’d next be standing in the office and they said tomorrow…I said that I’d be there in the morning. Instead, actually, we ended up going to the ER so we could talk to a real live doctor and medical staff who might be able to tell us what kind of tumor I had, what the time frame was, and whether or not I could get some real pain killers. Best. Move. Ever. Within a couple of minutes of entering the ER I was rushed to the back and sitting with a great doctor who used to work in neurology. I left about an hour later with some basic (though not detailed) understanding of the type of tumor I had, the types that it could be, and (most importantly) with an appointment to see a real live surgeon the following day.
  • On Thursday the hammer dropped and I was finally able to sit down with my surgeon and find out what’s going on. Quickly I discovered that the chances of cancer were small (10%), that the tumor was actually inside my spinal cord splitting it into two, that I was looking at a 5-6 hour surgery where they’d be shaving off unneeded parts of my spine and filleting my cord open in order to remove the two inch tumor sitting inside. I learned that it’s most likely a nice encapsulated tumor that shouldn’t have fingers or tentacles reaching into my nerves (very very good news!), and I learned that I could be in the hospital anywhere from 1-6 weeks depending on nerve damage. I nearly passed out as he shared the information, but it was truly a relief to finally know what lay before me.
  • The surgery wasn’t scheduled until Tuesday, May 31st in order to give my body time to soak up some delicious steroids that will reduce inflammation and also to allow for a team of technicians to be assembled that will put pins and needles in me during surgery and monitor my nerves so as to keep the surgeon from damaging anything more than what’s already been damaged. Essentially the surgeon will poke around in my spine until he finds the least obtrusive way in to get rid of my little tag-a-long in hopes that he will not do any greater damage to my glorious nerves making my bottom half function.
  • Since then it’s been a process of figuring out what functioning looks like until the surgery. The ‘roids are doing a number on my body and the tumor continues to tweak its way that it bugs me. At any given moment my whole abdomen edging up into my lungs goes numb and swells, my face and jaw ache constantly and swell and go numb as well. My ‘roid rage is coming out through tearing up constantly (read that blog post here) and I’m also kind of angry all the time (which is completely abnormal for me). The sharp pains in my back are pretty much gone thanks to the steroids and vicadin but I’ve found that the more I’m off my back the less of my body and face I can feel, the more my heart races, the more tired I get, and the harder it gets to walk. It’s been a tightrope trying to figure out if I should lay flat and be bored out of my mind and useless or up and moving and make my body function worse…but who cares right ’cause I’m getting this thing cut out in just a couple more days!!!
  • All through this I have felt incredibly blessed. Seriously. What if I had found this stuff out right before Disneyland? I’m glad I didn’t. This could have happened a month or two sooner and messed with me finishing grad school. I’ve got an amazing surgeon who has come recommended by three different medical professionals from three different hospitals! I am constantly (constantly!) being reminded of how loved and cared for I am by my neighborhood community, by my former (and present) church communities, by my family, and friends. I have heard overwhelming reports of people (and whole churches) praying from the Philippines, to Korea, Italy, Uganda, Canada, and all over the US.
  • The story is so much more nebulous with Jones right now. Until yesterday he was chilling with a 105 fever for a week and we’re still waiting to get his lymph nodes biopsied. Yesterday, however, he woke up with one of his larger lymphs extra swollen and harder so now, while I begin my surgery on Tuesday Jess will be scheduling his biopsy. The life of a mom eh!? We’re continuing to pray against lymphoma being a part of his story.

Thank you for the notes, emails, thoughts, and prayers. We don’t really know what’s ahead of us in many ways but we are moving forward with confidence in what God has and is doing in and around our lives. God’s story (as I understand it in the Bible and in my own experiences) is always this mysterious blend of messy life and surprising hope. I feel like we’re living in that tension along with a giant cloud of witnesses that include many of you standing beside us who have walked in messier places, who have experienced hope more fully, and who are inviting us into a way of living that is both beautiful, difficult, and ripe with significance.

peace.