Back to the Beginning

I suppose I started this blog when I was at the height of my illness…I couldn’t see myself getting much sicker and it was time for surgery. So by then I was tiny, frail, throwing up, spending much of my time in the bathroom and living on enough pills to probably medicate a small country.

It would be a good thing to go back, a lot of my family and friends knew I was “sick” in a vague sense of the word but really had no idea how it came about, symptoms, what happens at the doctor visits and all that. So let’s dedicate today’s update (and I’m sorry I haven’t been updating as often as I should be) to the past.

I grew up in Southern Alberta and at the age of 19 moved 12 hours away to the Peace Country in Alberta to work as a journalist in a small newspaper. When I say Falher or Donnelly people don’t usually know where that is so let’s just say Northern Alberta. On my own for the first time, in a fabulously hideous furnished apartment in a building that used to be a convent. In fact there were still several nuns living there, but I’m getting off track.

About a year into the job I was stressed, unhappy with work, my publisher was awful to me and I was too young and green to know how to handle it properly. If I had the same treatment today I would definitely quit, hire a lawyer and sue his sorry butt.

It all started with a bad case of diarrhea. As a young adult living on your own of course you eat and drink copious amounts of things you probably shouldn’t. Add to all of that the fact that I’ve loved food from a very young age and have the chubby photos to prove it and I had no cause for concern at first. “Was it the night of partying and then the pizza from who knows when or could it have been the greasy burger and fries and potato chips followed by more partying?” I think this is a conversation most “party age” young adults have with themselves while they’re hanging out in the bathroom at some point or another.

But then the diarrhea wouldn’t go away. I would go to the bathroom on average of 12 or 15 times a day. And food started coming out whole. DON’T PRETEND! I know you all take a gander before a flush. And believe me – you notice when whole bits of food are floating around in there. I’m not talking when you can be sure you’ve had corn and you see it…I’m talking I had a salad and so whole pieces of lettuce are floating around. Okay enough of that, I’m making myself turn a little green.

Finally after about a month of this and starting to lose weight I bit the bullet and made an appointment to see a doctor. I sit down across from him in his office and my opening line is “I go to the bathroom a lot.” Opening the conversation with my doctor was absolutely the hardest thing – no one wants to talk about bums, bathroom habits and poop. Not even with professionals. The doctor booked me a test at the hospital with another local doctor and we went on from there. I continued pooping and then on test day I was wheeled in.

I would like to go on record here and say NEVER get a colonoscopy without sedation. I know they say it’s a routine operation and it’s no big deal and you don’t need it. Bull Pickles! The only people who say this are the sadistic doctors shoving miles of tubing into places that you didn’t know went that deep and the nurses who run the air machine. Because even though the tube is in there, they have to pump in a bunch of air at the same time to “inflate” things to make the view on the camera better. The air machine sounds like a jack hammer and when you’re already sick it’s a nightmare situation. The doctor performing the test was just a general doctor. Not a specialist (another thing I should have fought against but you live and learn) and he asked me in rapid fire a series of questions including things like “do you have bowel movements more than 5 times a day?” “do you see whole chunks of food?” “do you see mucus and/or blood?” and so on. I answered yes to every single question. At the end of the test (it felt like 40 minutes but it was probably only 10 or 15) the doctor told me “you are a mess” and left the room. Leaving the nurse to mop up the tears and get me back into the room to recover.

Oh and how joyous is this? My boyfriend at the time was in the room waiting for me, cause you’re not allowed to drive after the procedure, and at that point with him standing over my hospital bed the nurse announces “you’ve got a lot of air that we’ve pumped in there, it’s very important that you let it out naturally so don’t be afraid to just let it rip.” Kill me…I wish the nasty hospital sheets could have smothered me.

About a week later the family doctor I had initially seen called me to his office and told me it looked like I had a case of ulcerative colitis and immediately prescribed me horse sedatives. Okay I’m exaggerating – I was taking Sulphasalazine – giant yellow pills which is from the family of Sulpha drugs – roughly translated into real English meaning drinking so much water you could drown and turning purple in direct sunlight. Seriously.

I took these pills for my whole prescription and was feeling better. Here comes giant mistake # 2 (right after not demanding to see a specialist) after I was done my prescription I didn’t go see the doctor again to get a refill and did not continue on with proper health care.

Well, I think I’ve exhausted all of you enough for today. Stay tuned for the next update – when I finally got a clue!

CHUCK of the NORTH!

"Watch your head on the rifle."

Those aren't words you expect to hear on vacation but I'll get to that a bit later.

This year for our vacation we decided to forego the traditional Hawaii/USA somewhere warm and fabulous and spend our 7th anniversary with good friends of ours in Wha'Ti, NWT.

Wha'Ti is a 40 minute flight Northwest of Yellowknife and it was an adventure just to get there.

On this map Wha'Ti is the yellow dot location.

First we packed up our stuff and a full case of food, George Foreman Grill, and coffee as requested - by the way cashiers look at you weird when they ring through nothing but giant tins of Tim Horton's coffee, dehydrated onions and vanilla. Then we hopped our WestJet flight to Yellowknife and landed at what was probably one of the smallest airports we've ever been in. There's certainly no question about where your luggage will be because there is only one luggage carousel.

Then we had a bite to eat at the Bush Pilot Cafeteria and took a $5 taxi ride to the Air Tindi terminal. There we met Marvin. Paul and I headed into the hanger and Marvin was working the counter. I gave him my name and said we had reservations...he then ran through my credit card and we plopped our luggage on a scale and that was it. No ID, no security checks, no scanning our bags - and also no realizing that Paul and I were traveling together but we got that sorted out. Turns out Marvin is more than front counter man, he also helps direct the planes in and hauls the luggage around in little carts.

Our Air Tindi plane was the smallest plane Paul has ever been on and 2nd smallest for me - 2nd only because I've flown in a tiny 2-seater plane before. It also looked like it was from before the war and there is no barrier between you and the pilots and the instruments. They hand you ear plugs as you get on and there is certainly no way the seat cushions are floatation devices as it's pretty much a thin piece of material over metal - which by the way fold down when they have less passengers so they can haul more cargo.

And you should have seen the cargo! Honestly I wouldn't have been surprised if a live chicken and a goat were on board. There were loads and loads of bins stuffed with everything from kids soccer balls, clothing bags and even several birthday cakes. And probably the weirdest thing - the "must have" item when flying into Wha'Ti is KENTUCKY FRIED CHICKEN! Several of the locals were flying with us and they all had giant bags of KFC which stank up the Air Tindi terminal and the flight for the whole 40 minutes. Paul says the smell has actually turned him off KFC for the next year probably.

Okay so back to the plane. We were flying along and I was in the front row - prime position to see all the instruments and I noticed a sign above the pilots head. The sign said the plane was only approved for regular flying and that no aerobatics, loops, roll overs or other types of flying were approved. Thank goodness for that. There is also no such thing as a washroom, no stewards/stewardess and no water or anything like that. In fact the pilot did a quick safety routine, probably the fastest I've ever heard. Pointed out the exit doors and said "if it gets too cold or too hot just tap me on the shoulder."

We landed in Wha'Ti and wouldn't you know it - turns out that is in fact the smallest airport we've ever been in. It's a community of about 500 people and the airport is a trailer. When they unload your luggage it comes out the gates and sits in the parking lot waiting for people to grab it - and be warned you better be on the ball and getting your luggage because if someone decides they like your suitcase better than you do it might disappear. When you go to leave your luggage is weighed on an old meat scale.

The area of Wha'Ti used to be known as Lac La Martre or Martin Lake. The scenery and landscape are stunning. On our first full day there we went to have a hot dog roast at the scenic waterfalls just a 1/2 hour out of town but you can't go out in the bush without a firearm because you really are "in the wild". Just a day or so previous to our visit there had been some wolves at the falls.

We rode in the RCMP truck and at one point had to pass Levi - the 1 year old - through the prisoner window to the front seat as we were a bit cramped in the back. That's where the whole "don't hit your head on the rifle!" came from.

We had an amazing visit with our friends, went on a great adventure and wouldn't you know it - the weather in Wha'Ti was way nicer than it was here in Edmonton! I actually got a bit of a tan.

After a few days we headed home, spent a delightful 3 hour delay in the Yellowknife airport (trust me when I say you don't want to be delayed in Yellowknife EVER!) and made it home safe and sound. It was a great trip and one I'm sure we'll be talking about for the next year. Chuck did amazingly well but we're lucky it wasn't a winter trip because I don't think I could have gotten a special parka for him.

I could go on and on about the old couple who got into a screaming match in the Air Tindi hangar because she was drunk and couldn't fly or about the bushman or how Paul preferred to pee on trees outside because we had to conserve water during our visit and he can't use the toilet without flushing...but you'd get bored with all of that!

I feel like a NINJA!

I was tossing around the idea of getting a second tattoo - I already have a tramp stamp (a tattoo on my lower back). It's my name in Korean and I love it. I had always wanted a tattoo but struggled with where to put it and what to put there and didn't actually make a decision until I was 25 years old.

The other day Paul and I were chatting about a mutual acquaintance who had to go in for a colonoscopy - routine check up kind of thing.

Now in my 11 plus years of illness I have had a LOT of colonoscopies, sigmoidoscopies, throat scopes, barium swallows you name it. And I'm sure I'm not completely out of the woods yet - but one thing I do know. Unless I decide to get plumbing reattached I will never ever have to get a colonoscopy again!

I mean, a doctor would be able to see everything he needed with a bright flashlight. And then it hit me, if I were to get another tattoo I would get it on my butt and it would look like this:

So - onto my posting about my newest piece of ostomy equipment.

Now that I'm working out five days a week and the weather is getting warmer and I like to swim - I was searching the Internet for some kind of ostomy belt that would not stretch and would allow me to do all the things I want to be able to do but provide more security than the thin fabric belts you can buy at medical supply stores.

TA DA! Announcing the STEALTH BELT.

The stealth belt was developed by a guy in the states who had surgery much like myself and then found that he couldn't participate in his favorite water sports due to the limitation of the thin cloth belt we were just talking about.

So now this guy hand makes these awesome belts out of swimsuit material and you can order them from him on E-Bay. My $85 CAD purchase has arrived and although I haven't swam with it I can say that I'm feeling much more secure when playing baseball or going to the gym. the belt doesn't stretch, it's very comfortable and it covers my ostomy so well that if my shirt pulls up a little bit while I'm doing these physical activities all people see is a band of black fabric. Freakin' genius.

I still haven't figured out how to roll up my pouch and have it secured in a little zippered pocket - I think it's because I haven't gone swimming yet and so I haven't been wearing my short swimming pouches which would probably fit better.

And stealth belt just makes me feel all secret agent! Like a ninja only better cause I don't need bathroom breaks!

It's also a god send in terms of privacy. If my swimsuit or shirt pulls up it isn't immediately noticeable that I am wearing some kind of medical device.

On a side note we just had air conditioning installed in the house. During the cool winter months I was getting five or six days of wear out of my equipment easily. We had a sudden heat wave here a couple of weeks ago with temperatures reaching the 30's for one day and blam - none of my appliances are really interested in sticking to my sweaty tummy at night. So we sucked it up and had central air conditioning installed. I'm hoping it helps me get better wear out of my equipment since I won't be as hot at night and therefore not as sweaty and also not tossing around as much. Plus it's just awesome to have air conditioning in the house but I could honestly say we probably would have put it off for another year if it weren't for these ostomy flanges and the issues they were causing in the heat.

So since my summer will continue on in a wonderfully normal fashion I have decided my next blog posts (probably this coming weekend) will be a quick traipse through when I first got sick, diagnosis and all that fun stuff. It's all fine to say look at me - I had surgery! But I know a lot of people may be wondering how I got here. And if you're not interested...well read my blog anyway darn it.

It's a celebration!

Happy Birthday to Chuck, Happy Birthday to Chuck, Happy Birthday, Happy Birthday....Happy Birthday to Chuck!

Wow - Thursday, April 29 is one glorious year since surgery.

I take my birthday off work every year, I have no idea why I didn't take his birthday off to celebrate.

I cannot remember the last time a year went by without me missing out on something, or being curled up in bed for weeks at a time. This year has been a glorious gift and I like to think I've made the most of it.

1) I ate and ate and ate and ate some more.

I have eaten more corn on the cob this year than I have in 12 years combined and I'm already looking forward to another season. I have to say that corn on the cob was the one thing that I really missed when I was sick and couldn't eat things very high in fibre. In celebration of my corn on the cob eating days I bought a Butter Buddy. Paul still makes fun but even he admits it's a handy little tool. It's a little holder that has a butter stick in it and it is shaped like your corn on the cob so you can butter everything evenly without a big pile of melty butter on your plate.

2) I have gone on vacation to Las Vegas and partied it up like a 30 something should be able to do. I have also just returned from a trip to Lake Louise where I also consumed copious amounts of alcohol. I have a sneaking suspicion that my lack of intestines means that I could probably now drink most people under the table. I had a whole lot to drink in Lake Louise and the next day didn't have a lick of a hangover and wasn't even fuzzy and warm feeling the night before. Interesting.

3) I have started going to the gym. Every morning at 5:00 a.m. my alarm clock goes off and I roll my sorry self out of bed and head for the gym here for 5:30 a.m. I work out for an hour, shower and get ready for work there. The reason for this is explained in #1 of this list - and because it's just so good to feel healthy. I even hired a trainer who set up an awesome program for me. I am really just focusing on fitness, weight isn't what I'm worried about although if I had have kept up with #1 and not done #3 then it probably would have been! Paul has been coming to the gym too and we've both noticed a big difference.

4) I have started playing slo-pitch again this year - our first game was Monday night. I have never played when I felt this good and I played like a freakin' machine if I do say so myself. I wasn't exhausted and unable to run the bases, I actually had a couple of really good hits...and had a great time and I'm already looking forward to the second game.

5) Paul bought me golf clubs and this year I'm going to learn! I didn't learn before not because of the physical activity thing (although that was part of it) - but because golf courses aren't known for their abundance of bathrooms and the last thing I wanted was to get stuck on some fairway and have to run into the bushes to take care of business...besides I think the courses have some kind of rules against that.

So - I think I should buy Chuck a nice pair of leather boots for his birthday. He'd look fabulous in them! Fine - so the boots are for me and I haven't bought them yet. But I did buy him something - stay tuned for my next blog when it comes in. The Ostomy Stealth Belt. I'm excited already just from the name - it makes it sound like a ninja device.

Hi, it's been a while!

I know it's been a while since we last visited. For a while there life was peaceful and boring so I had nothing new that inspired me to write but I can feel the old creativity flowing again so this is the first of several blog updates I will be doing in the next little bit.

I would like to start off by saying things are really, really good right now. My appliance has been working very well, I've been enjoying food again for the first time in quite a while and I'm looking forward to our upcoming slo-pitch season and some good parties.

In fact - here's a before picture of me (pre-surgery and quite ill) and also a newer picture of me. You can see how much "healthier" aka chubby and not so pale I look.

Anyway, onto the fun stuff.

Story # 1

I flew to Grande Prairie for work not long ago. It was a day trip only, I love those because I only bring my purse and a book and my work stuff but no luggage, I get to park in the cool covered parkade right across from the terminal and I go through the FlyThru security lane which always has less passengers.

Anyways - this particular morning I was there at 6:30 a.m. and it's the time that most people are traveling. For anyone familiar with the Edmonton airport the security line up was wrapped around the Harvey's. Luckily for me the FlyThru lane which is reserved for people doing same day flying for business only had 3 people in it! I was thanking my luck and putting my purse on the belt to be scanned thinking that it wasn't going to be so bad. At least I didn't have to stand in line and wait for an hour to get through security.

I'm not sure what I could have done differently but as I went through the scanner I beeped. Nothing too concerning it was just a zipper on my pants. But as my female security guard was doing the whole wand thing she asked me "do you have a belt on under your shirt?"

YES! I wear an ostomy belt, it's a groovy little belt that helps keep things in place while I move around and go about daily chores.

So I quietly said yes it's an ostomy belt. She looked at me and said quietly, "we're going to have to do a little search on you."

I wasn't too concerned, no big deal right? YEAH - until in the loudest screaming voice you can possibly imagine she shouts past about 200 other business passengers

"I NEED A FEMALE CSO HERE FOR A BODY SEARCH!" I don't know what CSO actually stands for - probably some kind of security officer but to me it stands for "Can't Shout lOuder"

I mean for Christ sake. What is the point of screaming? Especially since the girl who came over to help was about two feet away and could have heard the request even if it had have been whispered.

On top of that every single passenger in the line snapped their heads around so quickly I thought some of them would have gotten whiplash to give me the ol' "I wonder what she's smuggling in her bra" look.

And by the way I will have you know that these babies are au natural they were just on vacation while I was ill. As the t-shirt says "I put the double-d's in St. Paddy's day."

So these two women pull my stuff off the security line and take me to a tiny room that's in full view of all the other passengers, shut the door and the search begins.

Don't get me wrong, I supported the request for the search. Turns out the new drug smuggling technique is to wear an ostomy flange and pouch and bring in a bunch of cocaine. The ladies and I were chatting as they checked me over to make sure the pouch was full of poo and not pot.

But after I got set free I had to hang out with everyone who was in the security line at the gate. A few of them even pointed and whispered about me to their friends.

To make things worse - I was fogged in the Edmonton Airport for 3 hours along with everyone else. By the end of it I pretty much wanted to lift my shirt up and throw poop at everyone from my pouch like some crazy monkey animal.

Story # 2

This one is a little grosser but funnier too. To rinse out the pouch you put a little bit of water in it from a squeeze bottle and swish it all around and then empty it into the toilet. Well the other day at work I put the water in, swished happily but then my hand slipped and a torrential rain fall of poopy water rained all down the inside of my work pants and underwear.

Needless to say I went home right after that for a shower and change of clothes.

I am now officially a POOPY PANTS!

Oh well, if weird stuff like that didn't happen to me what would I blog about?

Stay tuned faithful readers, I'm about to go on vacation and I'm sure I'll come back with lots more!

Chuck in outer space!

Well faithful blog readers I have returned from my Christmas holidays. I spent 10 fabulous days in Florida exploring all the corners of DisneyWorld, Busch Gardens Tampa Bay, the Kennedy Space Centre and much more.

I don't know if it was all the G's I was pulling on the rides (I'm a roller coaster addict) or if it was that I spent way more time walking and standing upright than hunched at a desk with my generous muffin top pushing out in odd ways but Chuck did very well on vacation. I got five nights wear out of him most of the time and only had one flange that had a bit of an issue. And that includes going swimming and soaking in our spa at the condo we rented. WOOHOO!

I did have to change my flange once at DisneyWorld - the husband and I have worked out a system where he now pre-cuts flanges for me so that I don't have to mess about with that and I can just stick on a new one if he's not available to help me or if I'm in a woman's washroom at a very crowded theme park and he doesn't feel comfortable busting in on that and jumping into my tiny cramped stall.

I would like to let you all know that I went on not one, but two space flight simulators. One at NASA which is a simulation of actual take off for astronauts and one at Epcot called Mission Mars where the Disney Imagineers spent over a year conferring with astronauts to make the most realistic flight including take off and space landing on Mars. And Chuck did super fine both times. Which means that when we start moving to the moon I don't have to worry about him, he'll do fine for the trip.

This is a picture of an actual toilet on the space shuttle by the way:

I have to admit, I was a little nervous at first. I had never gone on anything that was meant to pull your body in different directions. It's nerve wracking when you're standing in line for the Aerosmith Rock N Roller Coaster and as you're about to get into your cart (in the front of the speeding limo roller coaster car) it crosses your mind that if your flange decides it really doesn't want to stick on anymore thanks to all the moving and shaking and racing around...then not only is it major bad news for you, imagine what it means for every single other passenger in this roller coaster at this time. I had images of that picture you can buy after the ride and what everyone would look like if my flange just popped off at the start of the coaster. I mean it's not like you can radio someone and say "we have a poop emergency can you slow this thing down and let me off?" And would the other passengers be happy to hear that they're not cleaning off vomit but something else??

Luckily, nothing like that happened and I enjoyed my 10 days greatly. I have decided to dedicate this blog to all the different bathrooms I got to visit during my 10 day tour.

1) washrooms at DisneyWorld - they suck. For all the money and imagination they put into every park and the fireworks shows and everything else they certainly didn't spend any extra coin on bathrooms in this place. Although it's true they're readily found throughout the park, it's also true that for the most part there are only 6 or 7 stalls and I don't have to tell you that in a park full of women and children (there were about 50,000 people there on average) the line ups can get crazy long. Now picture this, you are little ol' me and you need to not only stand in line but at some point you have to zip over to the sink and fill up your little squirt bottle that you use to rinse out your poo pouch. Do you think that cranky lady with the mustache who's eaten too many deep fried turkey legs is just going to smile nicely at you while you wheedle your way back into your place in line? Well she didn't and I didn't care. I butted my way back into line without so much as an excuse me and thank you.

Other than that they are regular public washrooms and not the best for emptying/changing or anything with your appliance.

2) On the airplanes - HA I bet you thought I was going to say they suck but it's just the opposite. Airplane bathrooms in this case work really, really well. Oh ho - you are shocked I can tell. Well let me explain this one to you. Picture in your mind if you will. Along with the regular bathroom stuff of pulling down pants, hiking up shirts and all that stuff, you also have to hang on to the end of a little pouch and open the ziploc type thing at the bottom and let a shower of poop rain out. After the initial "dump" shall we say - then you take a little squeezy bottle of water and squirt a bit in there, rinse the bag and "dump" again. Rinse, lather, repeat you get the idea until the bag is relatively clean and you can then re-zip the bag and continue on.

In order to do all this stuff it is very important that you have a flat surface on which to set your squeeze bottle while you are maneuvering and that the toilet paper be very close at hand. You definitely don't want to let go of the little opening of the bag at any time. If you let it slip at the beginning it's possible you will rinse your pants and underpants in a shower of poop and if you let it slip after the initial empty but before it's clean then you're just dripping poop all over the place. So keep one hand on your ziploc thing and try with all your might to reach everything you need.

In airplane bathrooms everything is as close as I could ever want it to be. I didn't have to bend myself in half to get toilet paper (we've all been in those bathrooms where the genius who designed them put the roll as freakin' far away as possible from the toilet and you pretty much have to either get toilet paper before you sit or jump and hover to reach it). My squirt bottle was easily accessible at arm level. Usually in public washrooms I have to set it on the floor and once again bend in half while keeping a stern eye out for any poop rainfall or I have to balance it precariously on a toilet paper holder and sometimes watch it fall on the floor, shoot water everywhere and roll into a different stall at which point you have to suck it up and ask the person next to you if they would kindly roll back your poo pouch rinser.

3) In the airport - I am going to specifically highlight Chicago O'Hare International Airport on this one, it was our pit stop on the way home from Florida and it was my very first encounter with a machine that does the equivalent of putting a saran-wrap seal on the toilet seat. It's a box that sits at the back of the toilet seat, you wave your hand in front of a little sensor on the wall and with a whirr and a hum the saran wrap rotates a full 180 degrees so you have clean plastic lining to park your patootie on to do your business. For normal people this mechanism probably rocks. It works way better than those stupid toilet seat liners that hang on the back wall and are either totally empty when you need them or if there is one it slides all over the place and you end up peeing on a sheet of paper that gets you more disgusting than if you had just sat down on the germy seat to begin with.

For someone like me this saran-wrap thing was a nightmare. To empty the pouch in the most efficient and clean way you have to sit way back on the toilet seat so you have a lot of extra space in the front. This little machine-thingy takes up all the way back room - and so emptying and cleaning your pouch pretty much becomes impossible.

So those are my three bathroom ratings for you. I'm sure a couple of you are reading through them and saying "silly girl, why don't you just stand over the toilet and face forwards and empty your pouch that way? Then you don't have to worry about saran-wrap machines that take up room or anything like that."

If you can't admit it to the world then at least admit this one thing to yourself quietly. Everyone, at one point or another has had that BM. The one that's bigger than usual, probably a little heftier than usual - maybe you had a lot of shredded wheat that day for breakfast so things are really solid. And what happens when it hits the water in the bowl? You get a little cold water sprinkle action on your backside.

Now imagine what kind of tidal wave sprinkler action happens when you hover a good two feet above the toilet and let a shower of liquid doo dash into the toilet water. I think that explains that.

Stay tuned faithful readers, I will be updating again soon with more holiday information!