A Brief Interlude – And an Alcatraz Bathroom

Posted on 22 April 2013 by nocolon33

Sounds like the opening of a joke, doesn’t it?

It’s not. I’m going to start with a brief interlude in which I brag about my kids. I will end with the tale of a bathroom.

Tinkerbell, Jedediah and Elly Mae each have some talent. Tink and Elly Mae each dance. Jedediah woke up one morning and wanted to act, and he’s got some chops.

Sela and I, together, have five left feet. The only person I know who has a voice worse than Sela does is me. So where they get this talent, we don’t know.

In the last week, we’ve been to a recital for Elly Mae’s dance team, an awards banquet for Tink’s dance team and several performances of Jed’s play.

Sela and I are extremely proud of each of them. They selected activities that were important to them, and they worked HARD and practiced. A lot. There are few things that have given me as much joy as a parent as seeing them get excited about an activity that they chose, as opposed to the requisite soccer, etc. that every kid is forced to try.

We’ll talk about Tinkerbell’s foray into horseback riding in some post in the future. No idea what that was all about.

As Buzz once said (and I’m paraphrasing), “To the bathroom, AND BEYOND!”

Jed’s play was at the Junior High School. Which is convenient because Jed’s a junior high student.

Being at the Junior High School necessitates going to the bathroom in a junior high school bathroom.

With me so far?

It shouldn’t surprise you to learn that boy’s junior high school bathrooms smell like junior high school boys. So I was put in a foul humor upon entering.

I’m also fairly convinced that the first casualty of school budget cuts was functional toilet paper. This stuff was the worst of the industrial bad. Wow. It was so bad that my butt audibly complained. Seriously.

Despite all of that, the worst part was the sink design. Picture this. Two side-by-side sinks. Not a problem. Where were the soap and paper towel dispensers? To the left of the sink on the left, of course. You couldn’t get to them from the sink on the right. You might as well have had one sink since only one was usable at one time.

Don’t give me any complaints about space constraints. There were options. A myriad of options. Between the sinks for the soap dispenser? Anyone? Anyone?

At least I only had to use the thing a few times. Jed’s gotta use it all the time.

My No Colon No Feels Good

Posted on 22 March 2013 by nocolon33

I’m having one of those days (following one of those nights).

A “my no colon no feels good” kind of night and day. Those of you with IBD and more complete insides know what I’m talking about, too.

I won’t bore you with the gory details. They’re gory. Kind of like the stomach flu (one way traffic—down only) on steroids.

It does present a conundrum, however, and this is something that I’ve pondered for over 15 years.

Is this really a “my no colon no feels good” thing? You know, something special to people with my constitution? Or, is this a garden variety bug or “I ate something that didn’t agree with me” thing? Something that affects even the commoners?

Allow me to get philosophical for a moment. I figure I’m actually getting “biological,” as opposed to “philosophical,” but I also figure that any person can strive to say something philosophical without sounding like a total idiot, but when the same person tries to say something grounded in actual science, well, he/she could be wrong and actually sound moronic.

I’m thinking that taking the colon out of the equation screws up the equilibrium from mouth to anus, so to speak. Messes with the order of things, you might say. Leading me to this question:

Excluding pouchitis (clearly a no colon phenomena), would someone with no colon experience the same intestinal issues under the same conditions and the same diet as someone with a colon? In other words, is the “my no colon no feels good” situation a function of my “no colon” or just “no feels good”?

Let me insert some real life data:

FACT: I haven’t vomited since Day 3 after my second surgery (despite my system’s best efforts following the Epcot Center “Mission Space” Incident of 2005).
FACT: I haven’t had the stomach flu since I became no colon.
FACT: I have never suffered from constipation since I became no colon.
FACT: I sometimes wear white socks with dark shoes and dark socks with white shoes, being forced to suffer endless ridicule from Sela, Tinkerbell and Elly Mae (Jed just shakes his head).

Why am I asking? Because if my “no colon no feels good” is just your regular, run of the mill bug or “I ate something that didn’t agree with me” thing, “traditional” “medicine” (like how I used separate quotation marks?) like Pepto Bismol, Alka Seltzer, antacids, etc. should make me feel better, right?

But if this is some foreign situation, an affliction for which there is virtually no market (who is going to spend billions and billions to design a medication for the “no colon no feels good”?), then I am, well, out of luck

Feel free to comment or email me with your concern over my condition (he said in a shameless grab for sympathy).

It’s Good To Have A Voice

Posted on 15 March 2013 by samisophia

I’m a big proponent of the patient voice. It’s only natural for me. My second grade teacher actually nicknamed me “She Who Is As Loud As Thunder” for a Thanksgiving program. I was a loud kid, and any of my friends will tell you I haven’t changed much. IBD was a temporary knock down, but it didn’t take me long to get up. On my second day in the hospital after diagnosis, I was making a list of questions for my doctor. I didn’t have the courage to say them just then, but I was making the list and handing it off to my mom. I’ve always been opinionated and talkative, so becoming an engaged patient was an inevitability.

So my speechlessness took me by surprise when a professor asked my class (Literature & Illness – sounds like the best class ever, right?) to characterize what it means to be a patient in one word. It was the one word part that stumped me. I can speak my thoughts as a patient in blogs and essays and whatnot, but one word? Coincidentally, I was the final student to be asked, so I was able to listen to my classmates’ answers first. The word powerless came up a lot.

And it occurred to me – I’ve rarely felt powerless in my care. Lonely? Yes. Frustrated? I would have shouted that word at you when my Prednisone taper failed back in sophomore year. Scared? Here and there. But powerless? Rarely, if ever. Why? Because I’ve always been allowed to have a voice. My voice has never been shot down. I’ve never needed to settle for being quiet – and maybe that’s why I feel powerful in my care.

Having a voice has allowed me to feel comfortable with my treatment plan. It’s allowed me to feel okay asking questions. Lists don’t get passed over to my mom anymore. It’s certainly made me feel prepared for the ultimate transfer to adult care in a couple of years. Most of all, having a voice in my care has given me the confidence to be comfortable with my life with IBD. I would say that’s quite the opposite of powerless.

Take this week. I’m waiting in the mail-room to pick up my seven week supply of enemas, which came in a very big box. A very big box at least twice my width. And in college, a big box typically indicates (a) cool new furniture or (b) a very special care package from someone who loves you a lot. So, naturally, one of my friends got very excited when my box and I made it back to my dorm. And while I won’t deny that my mother loves me a lot, the contents of the box weren’t quite what my friend was expecting. The best part – after she figured it out, we had the greatest laugh. Two years ago, this might have been awkward. Instead, it was just a hilarious moment among friends. I felt comfortable enough to control the situation and make what easily could have been a negative situation into a positive one.

This is the reason I’m such a big advocate for patient involvement in care. There are the obvious reasons – it contributes to better adherence, psychosocial adjustment, and understanding of their disease. But I believe, most importantly, when patients are enthusiastically encouraged to join in the decision-making process – and given the resources to do so effectively – their confidence can skyrocket. I’m certainly a more confident young adult after having IBD for a few years than I was before, and I know my experiences with IBD have been a huge factor in my development.

Whether it’s feeling comfortable enough to laugh in my doctor’s appointments or laugh over my friend’s reaction to a box of enemas, it’s the same feeling that’s hit me lately. It’s good to have a voice.

Back to class, when it came my turn to define a patient in a single word, I chose changed. That’s really what it is and should be when it comes to the patient voice – not the loss of a voice, but a changed voice. A voice that needs to learn how to join in harmony with others to form a unified care team, but still a voice that can be heard loud and clear.

Port-o-Potties: A Necessary Evil

Posted on 15 October 2012 by nocolon33

An Alcatraz Bathroom Installment:

Before I begin, I share with you the following from the fountain of all knowledge, THE WIKIPEDIA, regarding a particularly horrifying story published by Stephen King in his fifth short story collection, “Just After Sunset.” The story is called, “A Very Tight Place.”

“Curtis Johnson . . . is lured to a deserted construction site by his neighbor, Tim Grunwald, with whom he’s been having a legal dispute involving Curtis’s beloved dog, Betsy, who was killed by Tim’s electric fences. He is confronted by Tim who forces him into a Port-O-San, tips it over and leaves him trapped there in the heat of a Florida summer day to die. With no way to get help, Curtis must figure out how to escape or die.”

Can you think of anything more disturbing? Being tipped over in a port-o-potty, on a hot day, and being literally consumed by “what’s down there”? I think about this EVERY time I use a port-o-potty. By the way, I’m not going to spoil how the story ends. If you just can’t go on without my giving away the ending, I must quote two great modern characters from the classic film, “The Princess Bride,” which recently celebrated its 25th anniversary:

Inigo Montoya: I must know.

Westley: Get used to disappointment.

Let’s be honest, shall we? We’ve all been there. You gotta go, but the only option is a nasty-looking port-o-potty. (Also from THE WIKIPEDIA. The following names for these gizmos that I have been referring to, and will continue to refer to, as a “port-o-potty” (even though I REALLY like the last one): P-Pot, Porta-John, PortaJane, Port-O-Let, Port-a-Loo, Portaloo, Porta-Potty, Tidy John, Kybo, Biffs, Standard Porta Potty Restrooms and Toi-Toi).

A problem unique to port-o-potties is that I find that there’s no, absolutely zero, thought for the next user. “Hey, this thing is already SO NASTY. I’m not going to spend two seconds wiping my feces off the seat for the next person. That next dude isn’t expecting a positive experience.”

I cannot express the level of nausea that I am currently experiencing just thinking about this. I could barf right here at my desk. Which would be bad. I’m taking deep breaths to calm the lightheadedness. Also small sips of Diet Coke.

Unlike other Alcatraz Bathrooms, upon entering you really have no choice but to do something with the seat. I don’t usually see the option of a toilet seat cover, so you’re relegated to using TP. I have found the TP dispensers in port-o-potties to be of the sub-standard, high-friction variety. You know what I mean. You can’t grab off a long piece easily. In fact, you have to slowly pull (or pull and turn) so as not to break off a piece that is utterly useless for your purposes. Did I mention that, if you’re in this situation at all, you gotta go? This preparation takes time, people. TIME YOU MAY NOT HAVE.

Fact is that many of us have no choice. In fact, WE SEE THE PRESENCE OF A PORT-O-POTTY AS A BIT OF A SAVIOR. Isn’t that sad but true.

Ever Seen a Diseased Colon? You Want to?

Posted on 6 October 2012 by nocolon33

[editor's note: graphic image below]

I came upon some interesting things when cleaning out my email archive recently. Turns out that I’m an email hoarder. Who’d have thunk? My favorite find is the picture which I will explain shortly.

Confirmation of receipt of my rebate submission from June 2009?

Airline tickets for a trip completed in November 2008?

Good stuff.

But the best memory was this picture. That’s a colon. Out of the body. Not my colon, mind you, but a colon.

It’s the colon of a guy who I “coached” through his colectomy about 3 or 4 years after my colectomy.

The surgeon (holding the disemboweled colon) is the same guy who cut me.

And when I first received this picture several years ago, I was mad. REALLY MAD. There are no pictures of my colon. My colon went where pathologists discard diseased tissue and organs. I don’t know where that is, but there’s a place. I know there’s a place.

My colon is like my baseball card collection when I was 7 all over again. It’s gone (the cards are buried beneath 35+ years of garbage at the dump, so good luck finding those valuable cards)—never to return.

Jedediah’s surgeon thought I was nuts when I told him to take a picture of Jed’s colon after it was out. I wanted it for posterity (or posteriority—get it? POSTERIORITY? No, it’s not about posters, it’s about posteriors!).

They actually snapped a picture of Jedediah’s colon SITTING ON TOP OF HIS ABDOMEN! Like inside BUT OUTSIDE! It’s a classic. Unfortunately, I don’t have a digital copy, and the resolution is kind of 1980s-ish, but I know what it is. And that’s what counts.

Anyway, enjoy the colon!