Living with a colostomy

Let’s get this out of the way now - if you get a little queasy from hearing bodily functions in detail, you might want to think twice about proceeding.  If toilet humor makes you sick instead of making you laugh, this might be the time to read the Phillies’ High Cheese blog instead.  If you have trouble changing diapers or cleaning the bathroom, well, thanks for checking us out, I will have something more palatable for you Thursday, enjoy your day. 

However, if you have no qualms about something that isn't fun or easy to discuss over morning coffee and happy hour beers, then learning how to live with a colostomy is today’s topic for you.   I know, not exact the… uh… ‘stuff’ you sit around chitchatting about every day (and FYI, this is going to read like a George Carlin skit - the seven words you can never blog about on; I’ll let you fill in the double entendre here, but this should be a layup… colostomy, ‘stuff’, you get it, right??)

Anyways, before the editor sends this back with a big “We can’t publish this ‘stuff’ T.J.!!” (see?!?!), away we go.  A colostomy is, in very basic terms, an opening where your colon gets rerouted out to another part of your body; in my case, my lower left abdominal wall.  (For a little more detail on what an “ostomy” is – there are several kinds – and how I ended up with mine, click here).  I couldn’t get a good number on how many people in the U.S. currently have colostomies, but it is estimated there are up to 100,000 ostomy surgeries every year.  So you might not know someone who has or had one, but chances are someone in your phone’s contacts list does.  Plus, now you know me.

In the five months carrying my sidecar around with me, there have actually been some “this ‘stuff’ ain’t so bad” moments.  No more running to the bathroom when it’s most inconvenient, like while swimming, during a meeting, or watching TV.  Take, for instance, the BCS Bowl Game.  I was in the hospital, where they monitor your urine output via a small hand-held bottle.  Between that and the bag, I didn’t miss a play; had the nurse brought wings and beer, it would have been the ideal viewing scenario (except for the whole being in the hospital thing).

First thing in the morning, I can still lay in bed peacefully, no matter what I had the night before for dinner.  You remember how mom made you chew all your food?  Yea, I forgot that lesson and used to inhale everything, until all that ‘stuff’ had to pass through the side door.  So now I chew REAL well, which is just good in general.  Bet you would start chewing a lot more, too.

Road trips?  Anything under 5 hours means “hold it until we get there” for the rest of the Sharpe family.  Saving on shopping for toilet paper?  While you do need some TP to help clean the bag after emptying, it’s strictly single-ply these days, baby.

It’s also a heck of a conversation-starter.  I don’t exactly publicize my colostomy (uh, up until now, I guess), but enough people know that they have opened up to me about their own conditions.  One friend suffers from severe depression; another has Crohn’s Disease — both have been living with their condition for years, and I (and, surely, many others) never knew.  Hopefully whatever I share helps with their daily battles; maybe it will help one of you open up to someone you trust, too – ‘cause this ‘stuff’ you don’t want to keep bottled up.

There are, as you can imagine, some significant drawbacks to a colostomy as well.  It’s not in the most convenient place – sort of right above the waistband, which means I’m stuck either hiking my pants up to ridiculous Steve Urkel-levels, or letting my ‘stuff’ rest on the top of my belt.  There are colostomy clothes that sorta kinda hide it, but honestly, the few things available look like something out of the girdle section of the 1953 Sears catalog.

Plus, when the bag starts to fill, carrying this ‘stuff’ around is a pain in the… (Damn, I didn’t think of multiple entendres!) donkey.  It gets heavy.  It tugs at the wafer, which pulls at your skin, which is just irritating (as if having a secondary feces exit point isn’t irritating enough). 

My reading time has gone down significantly, as you only want to be hovered over the toilet for as little time as possible when emptying the bag.  There are ESPN Magazines from 2012 still sitting in the bathroom’s overstuffed magazine rack. 

Working out, and especially trying yoga has been interesting.  I have a hard enough time balancing without worrying about keeping my ‘stuff’ together, literally.  You certainly don’t want to be the new guy AND the one whose deuce container is hanging out. I bet they don’t have some cute name for that pose yet. 

Then there is the stoma itself, which is the term for the new hole in your side.  Besides being freaked the heck out by the general concept of an extra HOLE in your BODY, it gives other unique challenges.  The stoma offers no control over expelling ‘stuff’, including gas, out of your system.  When it wants to go, it goes, whether you are sitting with a bunch of people or not.

The stoma is supposed to have the same color and feel as the inside of your cheek, but I’m fairly certainly I won’t find many volunteers to kiss the thing.  There is also what is known as “prolapsing” where the stoma, instead of being a nice little side pocket, extends itself out.  As in, several inches out.  As in, this is my large intestine, and it’s outside of my body – holy ‘stuff’!!

Tangent alert: the first time it did this, I was hosting current and former Dolphins Nate Garner and Chad Henne at the golf tournament for A Prom To Remember, the children’s cancer charity I serve.  A normal person would have seen this “thing” coming out of their side, lost their ‘stuff’, and driven the golf cart right to the hospital. Being anything but ordinary, I quickly traded emails on my phone with the doctor, who assured me this wasn’t abnormal (the prolapse, not playing golf with it – a detail I may have left out of the communications).  Since it wasn’t hurting - and actually helped keep my arms WAY out from my body - the doctor was willing to wait until the end of the week to see me at an already-scheduled appointment.  My little internal voice sounded a lot like Carl Spackler and said, “I’d keep playing”, which is what I did, for all 18 holes.  The competitor in me wasn’t passing up a chance to hit the links with a pro QB, regardless of how my large intestine was elongating from my abdominal wall.  I don’t even think Nate or Chad knew; and I wasn’t using this as an excuse for continued lousy golf on my part.  There is seriously something wrong with me, but we will save that for another post. 

Anyways… Showering is a bit more challenging; keeping the wafer dry helps it stay on solid, and the bag’s venting doesn’t work if it gets wet.  I’ve woken up several times where the vent wasn’t working, and said bag was inflated like Snoopy at the Macy’s Thanksgiving Day Parade. It is unsettling waking up to a balloon animal resting on your pelvic bone that needs its pressure released ASAP.  

Oh yea, “burping” the bag.  Most bags have a vent that lets gas pass through nearly odorlessly and keeps the bag from blowing up, but that doesn’t always work.  Gas builds up in a bag already tainted with ‘stuff’; at some point the gas needs to come out. Pity the person nearby and downwind.  One friend found out the hard way, after some ill-advised taunting, that close proximity during the burping process is a ‘stuffy’ place to be. Sorry to everyone but Matt.  

Then there is the mess factor.  For as surprisingly clean as this process has usually been, there are the occasional “breaches” – when the ‘stuff’ hits the fan.  The seals on the wafer, while pretty good, aren’t perfect, and if you have the bag in a compromised situation, like with a belt over part of it, they can give.  It’s only happened on a handful of occasions, and all but twice at home, where a shower and change are easy fixes.  Of course, the time it happened at 30,000 feet made the last half-hour of the flight a bit awkward, which reminds me…

If you are thinking about picking up a colostomy, I highly advise getting a small child to go with it.  Sure, it’s not the most convenient combination in the world, but having a built-in excuse for anything that smells funny can be rather handy. Poor little Tommy has gotten blamed for quite a few things that were certainly not his doing. 

In the end, living with a colostomy has certainly made life more complicated, but way less than I thought when I first heard (and knew little) about it.  If you or someone you know finds yourself faced with this difficult path, certainly find someone who can help guide you.  Yes, it sounds slightly disgusting, but you get the hang of this ‘stuff’ quickly, until it’s mostly a minor inconvenience.  Although a permanent surgery, it is reversible, and many colostomy patients become “former colostomy patients” and have their old sitting-on-the-throne lives back. Me – I’m just trying to beat melanoma.  If it means I have to live the rest of a long life emptying Sideshow Bob into the toilet daily, so be it. This ‘stuff’ isn’t really that bad after all.

T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »