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. 

Sunday mASSterpiece

I have been to church since Oscar's inception but only in the form of weddings and funerals.  I had yet to actually partake in a full catholic mass, it has been 15 years or more since I was comfortable enough to sit on the wooden pews or kneel for any length of time.
Today I joined Oma, Aunt Lori and my mom at a new church in London. We had just moved Oma from Windsor to London and wanted to show Oma some support in her new city. I haven't been a practicing Catholic in years but I did find that going to mass was very soothing, not much had changed in the years I had been absent.
I was able to look around and appreciate the beautiful stained glass windows and give my full attention to the priest's sermon in a way I hadn't t been able to do in a very long time. I also realized structured religion isn't my thing and was glad I could put to rest the thoughts of "should I or shouldn't I" regarding returning to church. I also realized how very quiet 200 or more people can be when faced with the Lord.
I thought everything was going swimmingly until Oscar started to make some snuffling noises...the kind where all you have to do is put your hand over the stoma and it quiets down. Then somewhere between communion and the final procession that signals the end of mass, Oscar let it rip, thankfully, so did the singer. I have never heard a note quite like the one she belted out and neither apparently did Oscar because he was singing for all he was worth.  I never realized a stoma could make those type of noises and I secretly think Oscar was trying to concoct his own symphony accompaniment to the third verse. I did everything in my power to quiet him but he was intent on letting every single sole in the church, living and dead, know that he was present and singing as loudly as he could.
After what seemed like hours when in reality it was only a minute or so, he shut up and I had a pouch full of his offerings. Apparently my four dollars wasn't quite enough. I glanced around at the retreating parishioners and no one was the wiser. Oscars assterpiece...errr...masterpiece went unnoticed by everyone except me. 
Thank you Oscar for allowing me to partake in mass, though I don't think you are cut out for the choir just yet.

The Duke of Albany...in disguise!

On Tuesday nights at the Winchester they have “wing” night. There are wing nights all over the city, we could go out every night to a different pub and hit a wing night every day of the week. Some sell their wings for as little as $0.10, some places have more than 30 flavours, heck, there is even an entire web page dedicated to all the different chicken wings/prices/days in Edmonton (www.edmonton.ab.hotwings.ca) but every place pales in comparison to our Winchester.
The Winchester does a “double bake” for us (you have to ask for double baked wings), that means the wings are fried and then tossed with the sauce of the patron’s choice and then the wings are thrown into the oven to “bake in” the flavour. It leaves you with a fantastic wing that is not at all saucy but baked to perfection.  I’m sure you are all wondering how exactly eating chicken wings relates in any which way or form to an ostomy.
Up until my surgery I couldn’t eat any meat, let alone anything fried. The real kicker? I’ve started to order my wings “salt and pepper” style. The wings are fried (meat and frying!!) and then liberally coated in coarse salt and pepper (pepper!!). Even the tiniest hint of pepper before I received Oscar would set off a huge flare and everyone around me knew there was no way I could even come in contact with the seasoning. Now? My all time favourite wings are the deliciousness of salt and pepper.
After my surgery I didn’t screw around with what I could or couldn’t eat. I dove head first into my first Burger Whopper, with all the fixin’s, a mere 3 days out of the hospital. I kept a water glass full of shelled (I wasn’t wasting time cracking them open myself) pumpkin seeds on the living room table so that when the urge to eat a mouthful of seeds hit, I’d be ready. I wasn’t given ANY conditions as to what/when/where I had to eat and I took full advantage of it.  I’m STILL taking advantage of it and am enjoying food more and more. I’ve been lucky and haven’t had a blockage though I do know the signs, and if I feel something is not quite right, I immediately down 2L of water and go for a long walk to help everything move. We have all heard the horror stories of what happens when you eat the wrong food but for me there never has been a wrong food, just too MUCH of a food.
Thank you Oscar for giving me food back. Oh how I’ve missed the rich chocolates, red meat, anything fried to within an inch of its life, nuts, seeds, things with skins (tomato!!) and every other delectable morsel of food that Crohn’s took from me. Oscar not only gave me the opportunity to try food from places like New Orleans and Italy but also has let me enjoy the Winchester as it should be enjoyed, Pint of beer and pound of wings in hand.
                                      *10 points for any Shaun of the Dead reference you get!!*

Blasphemous Bells

I’m very confused about this bell thing.

I have heard the church bells ringing all over Italy and Slovenia with seemingly no rhyme or reason since I’ve been here. Miha (the groom, in picture) explained that they are ringing out the different times of the day and that if not for the bells; he would probably be late for the important things like work, pub meets and his wedding. Andi (the bride, in picture and an ostomate!!!) then told me that there had been a petition to have the bells silenced but no one ever signed it.

As I was lying in bed having yet another insomnia induced early morning, the bells started peeling out their weird tune and I tried to figure them out. About 45 minutes later with no solution in sight I got up and wandered to the washroom. Funny, when boredom and lack of sleep merge I always find myself reverting back to my pre-Oscar days, which is heading to the closest toilet.  As I was popping off Oscar’s pouch the bells started to ring and I had a horrible thought; what if you could only go to the washroom at the times the bells were ringing…or worse…not ringing? The bells are a church thing, so if you didn’t abide by them were you going against a higher power? Insomnia really makes my mind wander to the most ridiculous things.

To be totally honest though, the bells freak me out. I don’t do regimented religion or being on time very well and the bells are a reminder of both. They seem (if Miha is to be believed….the jury is still out) to be counting the passing time and that frankly, is a downer. I started to think back to all the time I spent enclosed in a water closet; I spent a good chunk of my 20’s seeking out a place where I could drop my drawers and I spent even longer hovering over those places that would have be condemned had a health inspector actually adventured in.

A dawning realization that I had spent 13 years orbiting around washrooms gave me the kick I needed. I grabbed my sneakers and headed out the door. I was in SLOVENIA for goodness sake and didn’t need to be within 10 feet of a washroom. I also realized that later in the day I would witness two of the most amazing people get married (wedding bells will ring I’m sure) and that was all thanks to Oscar. Seriously, when Andi found out she needed an ostomy her and Miha hit the internet and came across my blog. A few months later, Miha proposed and I was sent a wedding invitation. One year later and here I am, in Slovenia on their wedding day and I don’t need a washroom!

Thank you Oscar for making my journey to Slovenia possible, in more ways than one. I’d also like to thank Andi and Miha Lampreht, they are the nicest, sweetest people anyone could ever hope to have as friends, Oscar and I wish them a long, happy marriage filled with love. 

Italy...wait for it.

I have been in Italy for just over a week and this morning I finally did an Oscar change while we were staying in Firenze. I figured Oscar and I are long overdue for a blog post and as I have been sitting on this train (heading into Venice) for over an hour stuck in Bologna (earthquake last night has wrecked some track), the timing is perfect.

Today's blog isn't an adventure so much as an account of everything I have done in the last week all thanks to my ostomy.

We flew from Toronto,Canada into Rome, Italy on Monday where we spent the day in bed...completely exhausted after the almost 24 hour oddessy. On the plus side, I didn't use the washroom once on the flight from Toronto to Rome. When we did land we had to go through customs and it was over a 1/2 an hour wait, in a line.

The second day in Rome we headed to Vatican city to see the Sistine Chapel and St.Peter's Basilica. There were lines everywhere. Want to see a marble bust of a saint? Wait in a line. Want to see the Pieta? Wait in line. Want to see some tapestries? Wait in line. Want to see the inside of the chapel? Wait in line. There are over 17,000 people that pass through the Basilica EVERY DAY and between the pushing, shoving, jostling, people stopping to take pictures of every crack and crevice, the 1000's of pieces of artwork and everything else to gawk at in Vatican City, it takes a very long time and there are very long lines everywhere.

We headed to the Coliseum next and the length of the lines were astounding. I didn't realize there were that many people in Rome let alone that many people willing to wait around to see piles of rock that have been there for over 2,000 years. We waited in another line and where able to check "see the coliseum" off the bucket list. We eventually got very hungry and wandered into a restaurant were we had to...wait for service, wait for our food, wait for the cheque and generally WAIT.

We spent 3 days total in Rome and the last 3 days have been spent in Firenze either asleep, waiting, shopping, waiting, eating, waiting or waiting in a line to see the same darn things that 1000's of others wanted to see.

I have been able to do everything, see everything, eat everything and wait in every long line. I keep asking my mom (my travel partner extrodinaire) how people without ostomy's do the line/waiting thing? She only shakes her head and tells me how lucky I am that all I have to worry about is the occasional sore feet from all the standing.

I am looking forward to Venice and am very excited to get to Slovenia so I can hug Andi and Miha and witness their wedding.

Thank you Oscar, you have truly made this Italian/Slovenian trip possible.

ConvaTec has Perfected Moldable

The Edmonton Ostomy Association recently had its “suppliers” night. It is an evening where the suppliers (in this case, Hollister, ConvaTec and Coloplast) present their products to those of us who are un-familiar with what they offer. I became intrigued with some of the major differences between the big three and with some gentle nudging from my friend Angie, decided to grab the telephone numbers for the 2 brands I have yet to try, ConvaTec and Coloplast.

Last week I phoned ConvaTec (1-800-465-6302) and spoke to the most delightful, helpful woman on the planet. Cindy asked me all the pertinent questions and because I was able to speak with a rep on supplier’s night, I knew what I wanted. I asked for the Sur-Fit Natura, Moldable skin barrier. The thought of a moldable flange struck me as extraordinary.

Yesterday afternoon my package from ConvaTec arrived. It contained two convexity (Oscar need’s some convex love on the right side) Sur-Fit Natura, Moldable skin barriers and 16 Natura fabric pouches. It seemed like Christmas as I impatiently ripped open the box. I marvelled what I found inside and giddily showed my husband (who was very un-impressed at being disturbed during hockey play-off season) the differences between my current Hollister flange/Eakin Seal (not a Hollister brand)/pouch and what ConvaTec had sent.

As it was a naked Oscar change day (full flange change), I wasted no time jumping on the ConvaTec bandwagon and did the change in about 2 minutes flat. I was amazed at how simple and MESS free having a moldable flange was. I was also dismayed at how hard I needed to press the pouch onto the flange in order to complete the two piece system. I am over 2 years post-surgery and am not comfortable at all with how much pressure I needed to put around Oscar. First tick against ConvaTec.

In the package I was sent, it contained 16 little sticker thingies (not the official wording) which I had no idea what to do with. Their use became apparent when I awoke this morning to a spot of poop on my underwear directly where the filter is. The sticker thingies are meant to be placed on the pouch over the filter to prevent poop from leaking out. A sticker???? Second tick against ConvaTec.

Today is house cleaning/laundry day and I have spent the last 5 hours doing just that. All to the rustle of a plastic bag every time I move. The ConvaTec pouches aren’t very quiet and for the first time since I awoke with my new little friend, I am VERY aware that I am wearing an Ostomy appliance. Third and final tick against ConvaTec.

I will finish off the week with the current flange/pouches for my skin’s sake but unless ConvaTec can or has addressed these issues I won’t be dabbling in their products any time soon because really, Oscar and I are all for adventures but besides the moldable barriers (BEST IDEA EVER CONVATEC!!!) we didn’t find anything worth switching for.