Duct Tape Anyone?

When I was a kid, being called “lazy” by my parents was one of the worst things they could have said. Between school, swimming, cadets, hanging with friends and the numerous other activities that a 10-16 year old me partook in....I was exhausted. All the time.  Up at 7:00am, school all day and activities afterwards did not leave much time for more than a re-run of a MASH episode followed by an episode of Murphy Brown, bed was always 11:00pm, all to be repeated the next day.

Things like laundry and dishes and vacuuming and taking the dog for a walk all seemed insurmountable when tomorrows first period was calculus (and seriously who exactly is using that particular subject every day...or even once a year...?) and you had an entire week’s worth of calculations to produce.

As an adult my schedule has become more hectic. Owning Pug City Euroworks and Modern Relic Designs, being on numerous committees and a member of numerous associations, still finding time to walk all three family dogs, work out twice a week with a personal trainer, cook dinner for my husband which entails grocery shopping, and all the other things that a overextended grown up does.  When I do get the chance to be “lazy” a small part of me still cringes at the memories of being called that as a kid...but as an adult I RELISH my laziness. That’s right; this lady has taken laziness to a whole new level.

I’ve decided that if I can’t get at least 7-10 days out of a wafer I’ll do everything in my power to make it last. Itchy skin be dammed, if there is a leak I’ve devised numerous ways to put a stop to it....at least until I decide that I am ready to change. I am very fortunate to have a colostomy and absolutely NO skin issues...even if I do test my luck with weekly changes.

The pictures that you see are of the many way’s I have dealt with an unwanted leak a day or two before I am ready to do a change. I’ve gotten an extra two days of wafer wear out of my concoctions, and if this isn’t the height of laziness, I’m not sure what is.

"Of Exhibiting, or Caused by Radioactivity"

This winter has been particularly bad for shoulder,  finger and foot aches and I’ve been taking long, really long (like husband yelling at me to leave some hot water for the rest of Edmonton long) hot showers. It was during one of these steamy sessions that a thought struck, I use to do the EXACT same thing when I was having a flare, I would stand or sit for an extended period of time in the shower (or alternately go sit in the car and turn the seat heater on). I got mad, mad enough that I spiked the bottle of shampoo (worthy of Homer Jones!) although I promptly regretted the decision to do an end zone dance:

1. The searing pain in my shoulder returned.
2. I was going to have to clean up the goopy mess on the floor.  
That anger prompted a call to my GP to make an appointment to try to figure out why I was being forced to take scalding showers on an almost hourly basis.
Dr. Wink (yup, my GP’s name is Dr. Wink) listened to my complaints and set about getting me appointments for x-rays and in for something called nuclear medicine for bone scans. I had Dr. Wink explain nuclear medicine to me and he said it involved injecting some radioactive material. Radioactive. Material. Let that sink in for a minute will you, someone is going to INJECT  radioactive material into me and assuming I go along willingly, they will x-ray the results. I was assured it was perfectly safe to which I replied “didn’t they also say that to all the people getting onto the Titanic?” Dr. Wink was not nearly as amused as I was. I also asked if mutation, such as growing a few more limbs or eyes was a possibility and to my vast disappointment (I always thought an extra arm or two would be helpful, think of how much you could accomplish with 4 arms!!!!) I was told no.
The initial hand x-rays went off without a hitch but the picture you see above is the result of my foray into the nuclear medicine world. Inject radioactive material they said, it will be fine they said. Pft.   I haven’t had a medical induced bruise since the inception of Oscar, and that was over 4 years ago. I suppose my shut out had to end eventually but I didn’t expect it to be so painful!
The resulting x-rays / bone scans showed what I had feared, arthritis in most of my joints. The real surprise came when Dr. Wink informed me that my right shoulder was especially bad and he hadn’t seen so much inflammation in years. Great, I had assumed the pain was from too much time spent hunched over my computer.  I knew at some point, I would begin to exhibit the signs and symptoms of arthritis; I’ve come to realize that you can’t have Crohn’s for 13+ years and remain unscathed from the “other issues” associated with the disease. I didn’t realize it would begin so soon, I’m only 36!
Crohn’s, surgeries, ostomy and now arthritis.  I’m batting 4 for 4 but just once I’d like to strike out.

Canoeing for Camp!

Hi everyone, please go check out this Facebook page and make a donation if you can:
https://www.facebook.com/GI.Js.forever
Jason and Jim will be competing in the single longest canoe race in Canada. They will be overcoming challenges such as mosquito's, blackflies and a whole bunch of things, none of which are particularly good, all in the hopes of sending kids with similar ostomy diversions to a camp so they can feel accepted and loved amongst their peers. Camp is Camp Horizon, in southern Alberta.
Ps: I was a camp volunteer last year and have seen first hand how amazing camp experience can be for kids with ostomies of all kinds.

Happy Holidays!

Oscar and I wish all of you a very Merry Christmas and Happy New Year...or whichever denomination you are celebrating this year.
Stay tuned to the Adventures of Oscar the Ostomy in 2014....some very exciting stuff coming your way!

A pouch fit for a French King

My husband and I flew in to Louis Armstrong Airport a scant three days after Superbowl 2013 only to come upon crews of men studiously tearing down every remnant of the game that held the city, if not the continent, in its thrall. The power outage during the event only served to highlight what New Orlineans already knew, the big easy is better at night. People from every corner of the world were now flying in for one of the world’s biggest parties, and I, as a loud and proud ostomate, was only too willing to partake.
Our first day back in N’awlins was spent re-connecting with old friends, eating, drinking and watching 3 incredible parades.  The sights, sounds and smells are indescribable as your brain struggles to make coherent sense of it all. The next evening we watched the Muses parade and when it came to an end, I realized I needed to change (as a colostomate, I wear a small, sealed end pouch) my poop pouch.  Oscar, my ostomy, had been very good about out-put but between the walk to the parade route, mass quantities of food and liquid consumed over the 4 hours, his home was about to burst.  I was faced with my first ostomy issue...do I hobble home and take the risk that of the 350,000 people milling around none will bump in to me? OR do I put on a stiff upper lip, get in line for the porta-potties and hope for the best? An ominous gurgle made up my mind.

The neutral ground at Royal and Canal Street (the grassy in-between area of Canal Street) had a row of toilets and the crowd was only running 10 deep so I made a break for it and found myself in a relatively clean plastic poo’r. I made the switch from full pouch to empty pouch quickly but ran into a problem when my ziplock wouldn’t zip. With thousands of people outside the door and my boisterous friends ready to hit Bourbon Street I had to think fast. I tore a sticky piece off of my wafer and used it as a seal for the baggie but then I had to think about disposal options. Do I put the poo filled pouch which is inside the Ziplock baggie in my purse, hoping the sticky wafer held? Do I wrap a few beads around the baggie and try to pass it off as a poopy throw? Do I follow everyone else’s lead and drop my garbage un-caringly to the ground knowing that the after parade cleaners will pick it up?  I settled on donating it to Sterquilinus (the Roman god of fertilizer) trusting it would be just fine in the bluish mash that is the bottom of a porta-potty.

My next oh ho moment came when I and 200 others decided to stop for drinks at Lafitte’s Blacksmith Shop on Saturday night. Lafitte’s is the oldest running bar in North America and has in my opinion, never bothered to update the original washrooms from the 1730’s. I was enjoying my second Voodoo Daiquiri (we call them Grimace’s for its purple colour) when I caught a whiff of Oscar. The whiff reminded me that I hadn’t changed the wafer in a week and only 2 days previous I even used part of the wafer for disposal issues. I grabbed my purse and headed to the outdoor porta-potties which offered more privacy then the indoor washrooms. A glance through the dim light confirmed my suspicions, Oscar had blown a hole...and I was in the middle of Mardi Gras, on Bourbon street in a porta potty. I dug through my purse for my emergency wafer, Brava ring, AllKare adhesive remover wipes and fresh pouch. I laid everything out as best as I could in a porta potty that was constantly being knocked on, and set to work. In 3 minutes flat I had removed, wiped, ringed and replaced the wafer and pouch plus disposed of the offending wafer/pouch and was back with my friends who after many cherry bombs, were none the wiser of my second porta-potty adventure. I had made my second offering to Sterquilinus in as many days.

On the last full day, which was Mardi Gras, we dressed up in costumes and hit the streets. My husband went as Rock, my friend Sara as Paper and I went as Scissors. One small problem arose; I had forgotten to bring tape for the screw (a small circular piece of cardboard, in silver) that I wanted to place on my front and rear. Tape is surprisingly hard to find in the French Quarter, on Mardi Gras and I thought I’d have to go without an integral part of my costume. Little did I know a porta-potty would be my saving grace?

A few hours in to our celebration, I needed to find a restroom, but like all indoor plumbing in the Vieux Carre, a proper restroom was not to be found. I did however come upon a porta-potty. I latched the door behind me and as I was pulling down my pants I realized my wafer was sticking to the silvery leggings of my costume. This gave me an idea and incidentally, more offerings for the fertilizer god.  I cut up my emergency wafer and used it as tape for my screws. It worked like a charm and I was able to spend the next 6 hours running, walking, jumping, hopping, skipping and shuffling up and down Bourbon. 

The next day while packing to go home, I found the red sweatshirt part of my costume; the screws were still secured, as tight as can be, with some help from my cut up wafer.  I think perhaps the offerings to Sterquilinus as well as a whispered plea of help may have assisted me during my porta-potty trials. I can’t help but think there was something more, a porta-potty god, watching over all who enter his domain. Whatever it was, as an ostomate, I will never fear the outdoor restroom again.  

 

Ps: A HUGE thank you to Sara for decorating one of my puch's, unbeknownst to me, in Mardi Gras finery!!!

Running with Ribbons

In October, the Edmonton Eskimo’s (our CFL team) partook in the CFL Pink campaign, which helps to bring awareness and funds to women’s cancers, so when my friends and I arrived at our local pub we found football helmets with pink screens on every table. A few mug’s in and we decided to try them on and that is when I learned all about the various types of face masks.

Did you know that depending on the player’s position, the helmets are different? I had no idea either, that is until the guy’s started ripping off bars and adding bars and saying things like “that’s a kickers helmet” or “now a running back can wear it.” I’m not even sure what a running back is but I now know what kind of helmet the position requires. While looking at all the little pieces of pink paper on the table I was reminded about how each medical issue has picked up a “colour” to represent their cause. It had me wondering why exactly, or rather who exactly, chose a specific colour to tout their awareness. And because I am curious about EVERYTHING, I decided to do some research and find out how many different awareness ribbons there are.  I found 45. 45!!!!!!!! And I think that was just the tip of the ice berg.  How are we expected to keep them all straight?

Easy, we don’t have to. The ostomy awareness ribbon is nice enough to TELL us what it symbolizes. The brown ribbon has a small red crystal and creamy white lettering saying “IBD & Ostomy Awareness.” It was designed by Lois Fink and Barb Wodzin and is completely perfect in my opinion; however I certainly don’t need a ribbon to remind me of ostomy awareness. Ostomy awareness for me is every day. Every time I empty Oscar’s pouch or hear a noise I am made aware that I have an ostomy.

Colours representing certain causes, gimmicky head gear, days, weeks and even months dedicated to awareness for everything from Cystic Fibrosis month to world purple day are all great and wonderful but are they working? Maybe we all need to take a step back, put down our car magnets, wrist bands, thermal coffee mugs and every other piece of promotional “awareness merchandise” that we have been led to believe will in some small way help with the cause and actually volunteer our time to a cause close to us.

This Sunday when millions of people are glued to their televisions watching the Superbowl, I’ll be sending e-mails looking for more advertisers for our local Ostomy Association’s newsletter.  Thanks to Oscar, I am able to donate more than just money to my cause; I am able to donate myself. Come to think of it, I am also able to tell which position a football player holds all thanks to a wonderful evening with friends and silly paper helmets. Hm, maybe I will try to watch a few minutes of the Superbowl.

How to Type Around a Pug and Other Useless Information

As you can see, my pug Gunner needs to be by my side all the time. It has always been cute, but ever since Oscar and I got together Gunner seems to think one of two things.

1.       My permanent buddy will overtake my affections and Gunner will be left out.

2.       Oscar needs to be kept warm, ALL THE TIME and Gunner has appointed himself Oscar’s furry blanket.

Either way, I have learned quite a few new and interesting ways of doing the most mundane things thanks to my ever present Pug and his need to chaperone Oscar.

When I first came home from the hospital I was paranoid about even touching Oscar. Gunner thought differently. Within 2 minutes of me sitting on the couch, the dog jumped up and immediately started sniffing Oscar. I, being new to the Ostomy gang, freaked out and promptly placed a pillow between Oscar and Gunner. Gunner thought this was a splendid idea, Oscar was being kept warm and he had a new place to perch. Yup, Gunner took no time at all in climbing the pillow and settling himself for the evening.

A few days went by and the dishes started piling up. I didn't want to bend over and load the dishwasher, a fresh abdomen incision wouldn't like that, but I thought it would be a good idea to stand for a few minutes, so I filled the sink with soapy water. Gunner on the other hand was having none of it. His new charge would not be subjected to a potentially dangerous encounter with the side of the sink. He arranged himself between me and the sink and I was forced to lean over in a very awkward position to try to avoid the vicious Pug glare I was receiving.  Well played sir, well played.

The next few weeks passed without incident except for the ever present Pug. He had the uncanny ability to be everywhere I was but did not arise suspicion as he kept a safe distance. If I had to change a pouch, Gunner would sit discreetly on the inside of the bathroom door. An afternoon of reading or doing homework would find him patiently watching me from the opposite couch. Preparing the night’s dinner would involve me having to step around him as he would sit in the very center of the kitchen, beady Pug eyes following my every move.  I figured Gunner’s obsession with Oscar was finally over when he began acting like his normal aloof self. How very wrong I was.

I came home one afternoon and realized I needed to vacuum, not only for our family’s health’s sake but for the health of everyone living in a 2 kilometer radius.  The house had become truly scary. I slowly walked downstairs and found the vacuum buried behind some Christmas decorations…it had been a long time indeed. I decided I would start on the main floor and proceeded upstairs. It was about that time that I noticed I had a Pug shadow. I plugged in the machine and imagine my surprise when a furry, snorting Pug decided to LAY himself on top of the vacuum head. Normally, Gunner puts up with the vacuum but stay’s a safe five feet away at all times.

Gunner had laid down the Pug law and I was more inclined to follow it then my doctor’s instructions on NOT vacuuming for a least 6-8 weeks.  Needless to say, Gunner won that battle and I hired a cleaning service the next day. Almost 3 years later I still have the cleaning service because the doctor may have been wrong and I shouldn't vacuum period.

Thank you Oscar, because of you I have a Pug who looks after my best interests.