Friday, December 14, 2012

The Final Frontier.

Source

Aren't you excited to read this?

I bet you are.

I'm gonna give you a play-by-play on what to expect should you ever need to have a colonoscopy.

First off, you need to know that the preparation is the worst part of the whole thing.  If you can get through that, it's smooth sailing.  When I had my first scope done in 2011 I was feeling extremely anxious, so I did a bunch of research.  A phrase that stuck with me was that the prep was "an indignity best suffered alone".  

Boy oh boy, is that ever true.


Last time I sent my family away for the evening.  I don't remember what they did, but I have vivid traumatic memories of what I was doing.  I had to drink 2 gallons of water mixed with some horrific powder that tasted and smelled of burning salted plastic.  The instructions I was given were to drink 1 cup of this vile solution every 10 minutes.  

I dare you to try to drink 2 gallons of even your favourite drink that way.

I think when it finally started working it had less to do with the laxative effect and more to do with the fact that my entire digestive system was packed full of this stuff and it had to go somewhere.

It was awful, I was gagging the entire time.  Not having my family witness my reaction to all of this was quite a blessing actually.

This time, I was prescribed a different prep.  I learned when I tried to fill the prescription at the pharmacy that it wasn't covered under either my or my husband's drug plans.  So I had to pay cash for it.  Something about that feels like adding insult to injury.

I was on a clear-fluid only diet after breakfast that morning.  I had to take 4 laxative tablets at 2pm, then mix a sachet of powder with 150ml of water and drink that, followed by 4 cups of any clear fluid over the next 2 hours.  About 6 hours later, I had another sachet of powder to mix and drink, followed by another 4 cups of clear fluid.

The powder smelled and tasted like some sort of artificially sweetened mutant orange tang.  It wasn't delicious, but it was a heck of a lot easier to get down than the other stuff.  Looked disgusting though, and when you stirred it, it got hot for some reason.

My yummy drink.

Although the paper work said it would start to work within 2-4 hours, it kicked in within 5 minutes for me.  Who knows if that's because my system is already messed up.  I did laugh about the instructions in the pamphlet to "make sure you have access to a toilet during treatment".

The next few hours were pretty predictable.  It involved a lot of dashing to the bathroom.  The purpose of the prep is to get your system all sparkly clean so the camera can see what's going on.  So by the end of it, you're passing nothing but mostly clear liquid.  If you've never experienced peeing out of your butt, well, you're not really missing much.

Since the second dose of the drink was taken so close to my bedtime, I had a bit of difficulty settling down for sleep.  But by 1am the worst of it was over.  I slept fairly well, starting to wake at 5am again with needing to use the washroom.

Breakfast was some white cranberry juice, then I could have nothing by mouth until after my procedure at 1pm.  I filled up my time shopping for slippers that I could wear at the hospital.  I ended up taking the bus there, as I couldn't drive myself back after being sedated.

Arriving at the hospital, I start the long waiting process.  They check you in, you wait.  They give you stuff to change into, then you wait.  They call you in to insert your IV, then you wait.  All in all, I waited about an hour.

The worst part of the hospital stuff was the way I was systematically stripped of all of my dignity.  It seems that staff there are not so aware of the experience from a patient's perspective (or maybe if they are, they're just desensitized to it).  I remember feeling this way last time as well.

The worst for me is always the fact that you have to strip down completely when you put on the hospital gown.  I asked before why I couldn't keep on at least my bra, as they were not going to be working anywhere near that area.  They said it was in case there was an emergency and they had to access my heart.  Ok, I guess, but the level of dignity I would feel if they just allowed me to keep that one article on would have made a huge difference.

Next is the fact that you're supposed to put all your clothing and belongings in a giant plastic bag, which you then tote around with you from waiting room to waiting room.  The idea is to ensure that you have all your stuff with you the entire time, so it stays safe.  But it's just another subtle message that can be interpreted in a dehumanizing way.  Your stuff is trash.

This is *my* trash!  Hands off!
After the waiting, when it's your turn to see the doctor, they call you into the room.  There's a stretcher, some flat screened monitors, a table and some other medical stuff.  What looks like a hose is hanging on a hook (it's not a hose of course, it's the scope).  They ask you what procedure you're there for (haha, wouldn't that be a surprise if you made it all the way to that point and then they accidentally gave you a colonoscopy!), and then settle you on the stretcher, knees up against your stomach.  Your gown is nicely arranged around your butt, exposing it to everyone in the room (a doctor, a nurse, and a resident in my case).  Then you get the meds (they use 2 different kinds, explained to me as one to make you sleepy, one to make your memory blurry).

From what I understand, many people fall asleep and don't remember any of the procedure.  Me, well, I'm way too stubborn for that.  I have a bit of an irrational fear of people doing weird things to me while I'm sedated, so I fight it like crazy.  I gave them the heads up this time that I wanted to stay awake, so I don't think they gave me as much as last time.

Suddenly it's all happening.  I watch it all on one of the monitors.  As the scope loops its way through my intestines, it reminds me of my babies rolling around in the later stages of my pregnancies.  Which isn't a bad feeling, really.  At some point I turned my head and sighed.  The doctor asked me if I was bored, and I'm not sure what I answered but it struck me as a funny joke. Once in a while, when the scope hit a place where the curves are sharper, there is some pain.  I make faces, the nurse notices and pushes on my belly to help guide the scope.  They take biopsies (which is a bit surreal to watch) and then it's over.

I ask some questions about their findings, the doctor says that there is inflammation up to 30cms in, a big difference from last year when it was only 5cms in.  I'll get more of an understanding at my follow up appointment next week, as well as (hopefully) the results from the biopsies.  So it's not my imagination that things are getting worse, something that feels validating and discouraging all at the same time.

But now it's done, and it's time for planning for next steps.  I have a consult with a naturopath next week as well, and I'm hoping that something they can offer me makes more sense than just taking different and stronger meds.

Until then....business as usual.

Wednesday, December 12, 2012

Surprise!


I wish that I could tell you all that I've not been writing here because things have continued to be great for me.


They haven't.

I haven't been writing here because I've been CRAZY busy.  Maybe also because I get tired of spending so much of my focus on my bathroom habits. 

But whatever.

So, long story short, things are back to crappy.

(Side note, I've really been realizing how many scatological terms I use in every day conversation.  "What a crappy day", "This is crap", etc.  Makes me wonder if I was destined to have this condition all along, or maybe that I "put it out into the Universe unconsciously" like they talked about in that weird book "The Secret".  Food for thought.)

Not as crappy as they were in the summer time, mind you.  I'm managing pretty well, despite making many more trips to the bathroom than ought to be possible given the volume of food that I consume.  I need to plan my driving routes carefully in order to be near enough to a gas station or coffee shop in case I need to stop half-way to my destination (which I generally do, especially in the mornings on my way to work).

But mostly I wasn't minding because I knew I had a specialist appointment coming up in December.  I don't know what I really thought would happen at that appointment, maybe that I'd tell him about my awful experiences throughout the summer and he'd say something like "OH!  Well, I know exactly what will help!".  And then write me a prescription for a spa day or something.  

Clearly, I hadn't really thought it through.

In reality, what happened went like this:

Him: Hello, how are you?
Me: Good, thanks.  You?
Him: Good thanks.  So how have things been since we last saw each other?
Me: Awful. Booo hooo hoo hoo hoo hoo hoo!!!

Well, that took me by surprise!  Where the hell did all those tears come from?  Not the dab the corner of your eyes demurely with a tissue kind of tears, but the full out running out of your eyes and nose kind of tears.  The poor man, he didn't look like he had a clue what to do with me so he just started avoiding eye contact and leafing through my chart.

After a few minutes of clarifying questions from him, a few minutes of swallowing sobs from me, lots more leafing through my chart and several confused sounding "hmmmmm"s, he comes up with this:

Him: Well, this is concerning indeed.
Me: (nodding)
Him:  Your last scope was in June of 2011?
Me: (shrugging and nodding)
Him: Well, I think we need to do another one.
Me: (nodding)

(Why the hell am I so damn agreeable?!!)

Him: (nodding)
Me:  Um, do you (sniff) have a sense for (snerk) time frame?
Him: Well, I can check on that.
Me: Last time I waited for a year.
Him: A year?
Me: Yep.
Him: Well, let me check the scheduling and we'll see what we can get done.  But I am concerned so I think it will be sooner than a year.

He leaves.  I try (and mostly fail) to compose myself.

A few minutes later he returns.  

Him: Well, it's not a year...
Me: (echoing stupidly) not a year...
Him: How about Thursday.
Me: Thursday?  Like in 2 days?
Him: Yep.  And then we'll get you in for the results before the holidays.
Me: (silence, while I'm trying to wrap my head around what this all will mean for my schedule.  And then I realize...) I don't know if I can find someone to pick me up.
Him: (silence)
Me: Umm, never mind, I'll figure it out (oh damn, there are the tears again)
Him: (back to avoiding eye contact and rifling through paperwork) Ok, well here are the forms, take them to the reception and she'll book you in.
Me: (back to being agreeable) Ok.  Sorry for crying.

And then I left.  But I was still quite fragile until almost the end of the day.  Not because I have to have the scope, I've done that before.  But because it was such a rush.  Because it took me by surprise.  Because maybe things are worse than before.

As always, I try to find an angle that will make me laugh about the whole situation.  At work, we have an annual staff appreciation day.  I often laugh about how it's positioned as a "mandatory staff appreciation day", like they need to make it mandatory for the staff to show up or something.  Anyway, I joke about how far I would go to get out of it -- just on principle.  Like "Ha!  I won't allow you to force me to be appreciated!"

This year?  It falls on Thursday.  

Take THAT system, I WIN!!

Saturday, October 20, 2012

Attacked!







See this?

It's Pad Thai.  Delicious gluten-free, vegetarian Pad Thai.  One of my favourite lunches from the Thai place down the street from my work.

Until now.

Because it attacked me.

Due to the nature of this blog, it would make sense for you to be imagining that I ended up with a nasty case of the runs after eating this.  But you would be wrong.

Anyone who knows me well knows that in the course of trying to figure out what the heck was going on with my digestive system I eliminated a whole whack of foods from my diet.  I was desperate, and really wanted my symptoms to ease up.  Plus, I do trend toward the "granola" end of things, and the idea of managing disease through better nutrition was appealing to me.

One of the first things to go was gluten.  Yeah yeah yeah, I know you're all rolling your eyes.  Gluten-free is the big "trend" nowadays, and everyone is jumping on the bandwagon.  I get it.

And yes, I did get the blood test done.  And yes, it came back 'inconclusive' (whatever that means).  Honestly I don't care if I have Celiac disease (I don't think I do) or gluten allergy, or intolerance or aboogabooga.

All I know is that a whole host of seemingly disconnected things cleared up almost immediately after eliminating it from my diet.

The way I describe it to people is that it was almost like I had a low-level inflammation throughout my entire body that finally disappeared when I stopped eating gluten.  I had terrible acne.  Now?  Mostly gone.  Any cuts/pimples/rashes that I got would take forever to heal.  They would just keep filling up and draining.  Filling up and draining.  Now?  I heal like a dream.  My digestive symptoms improved by about 80%. 

I was sold.

Eliminating gluten was not terribly difficult for me, mostly because I was already in the habit of doing a 6-week "cleanse" twice per year.  During those weeks I would go without wheat, dairy, sugar, caffeine and alcohol.  Even then I noticed a huge deflation of my belly-bloating, although I didn't attribute it to gluten specifically.

So back to the Pad Thai.

Even though I ordered a gluten-free & vegetarian Pad Thai, about 10 minutes after eating it I knew something was up.  I should have double checked when I picked it up.  Especially after realizing that they'd messed up another part of our take-out order.  I should have maybe spoken up when they placed the non-gluten-free spring roll briefly in my take out container (although I tend to not be so sensitive to the cross-contamination like some others).  I know that I was negligent in this area.

But I didn't.  And I ate the ENTIRE thing.

I went back to my desk and started gathering papers for my next 2 meetings.  I noticed that my lips were feeling funny.  Not really tingly exactly, almost numb.  The feeling spread.  To my entire face. 

Then I started feeling light-headed.  The closest that I can describe it is drunk.  My whole body was buzzing, and I could not think straight.  I started having to check and double check to make sure I had everything I needed for my meeting.

I drove to my meeting but based on how hard I had to focus on the road, I probably shouldn't have.  The pounding headache started about half-way home.

I got home and just wanted to sleep.  Woke up hung over.  Then the gastro bleeding returned.  Three days later I started breaking out.

I can't explain this.  Although I'm a bit "granola" like I said earlier, I'm also a huge skeptic.  Nothing that I've read from a legitimate source has given me reason to expect this kind of reaction.  And if I was the one reading this story, I would probably think that it was an exaggeration.  So I don't understand.  But it's happened before, on one other occasion -- although in that case I had also consumed half a glass of wine so I wasn't as confused about the drunk feeling.

So if you've got an explanation, I'd love to hear it.  Or if you've got a similar story, please chime in.  It would be nice to know that I'm not alone in this.

Sunday, October 7, 2012

A Bit of Normalcy



See this view?

If I leave my house and walk for 7 minutes, this is where I end up.  Who says Hamilton's a "dirty city"?

My kids love to walk, hike, just be outdoors in nature.  So do I, although I have a hard time not having a "destination" in mind (What do you mean 'just go for a walk'?  Let's walk somewhere!).

Sadly, with all the crap (heh) that's been happening with me, we have not had a chance to see this view at all this year.

Until today.

You may have noticed (all 10 of you that read this blog, haha) that things have been a bit quiet around here.  I'm not sorry about that.

Because I've had nothing that was colon-related to write about for more than a week!!

(In case you're sad that you haven't had anything brilliant to read in that time, you should also join me over here where I've been writing about non-colon related things!).

Today was the first day in over a year that I trusted my body to be away from a bathroom for any length of time.  Truly, it was only for about an hour.  But it was glorious.

I didn't even carry around my "emergency pack".  No toilet paper, no spare underwear, no moist towelettes, nothing.

Me and my youngest.
Me and my teenager.  She's taller than I am and not done growing!

It was nice to just be silly together.  We skipped, we climbed trees, we spun around in circles...


 It was maybe the most perfect way to spend our Thanksgiving Sunday.


I don't know how long this reprieve from symptoms will last, but I plan to make good use of the time.  I'll pop by now and again to update, but unless something drastic changes I'll be spending the next few weeks focused on rambling incoherently over here!  Thanks for coming along on the journey!!

Friday, September 28, 2012

My Meds are WHAT??

Backordered.

Backordered with "no release date in sight".

That's what I heard from the pharmacist exactly 2 weeks ago.

If you're reading this, I'll assume you've read the last few posts in this blog.  The ones that have detailed my difficulty getting to the bathroom on time.

That's what life is like for me WITH meds.

Maybe you can make a guess at the feeling of sheer panic that came over me when I heard that I was going to run out in a couple of days.

"Oh, don't worry, we'll just call your doctor and get him to prescribe you something new".  That's what the pharmacist said.

Never mind that my GI doctor only works at the clinic one day/week.  Never mind that it's nearly impossible to reach a live person when you call.  Never mind that it's Friday afternoon and the clinic is already closed for the weekend.

"Don't worry."

And so began a flurry of phone calls.

Me to the doctor's office.  Me to the pharmacy.  The pharmacy to the doctor's office.  The pharmacy to me.  Me to the doctor's office.  Madness.

I still can't hear the words "rectal enema" without squirming.

Finally we are in agreement.  I will go back to the first batch of meds that were prescribed for me.  The doctor changed them after the first 2 months because the bleeding came back after I stopped using them.

More phone calls with the pharmacy because they have managed to mess up Every. Single. Prescription that I've asked them to fill.  This one is no different.

In the end, I get the new meds only a couple of days after I run out of the old ones.  I've been using them for about a week now.

Here's the thing.

I ONLY POOPED ONE TIME TODAY!!

I want to shout it from the rooftops!  It wasn't exactly back to normal, but it was as close as it's been in 2 years.  There's been minimal bleeding for a couple of days, and nowhere near the level of urgency that I've been trying to get used to.

I'm trying not to get too excited yet, it could just be my body getting used to things.  But I'm feeling hopeful.

Sunday, September 23, 2012

What's that smell?

Haha.  Here's a bit of an uncomfortable topic. 

When you use the bathroom as often as I do, you develop a whack of strategies to make it as pleasant and un-embarrassing (is that a word? Well, it is now) as possible.  Especially when you're in a multi-stalled or public washroom.


There is the "pre-roll of the toilet paper".  I don't use this one as much anymore, but it helped me feel better when I first started out on this nutty adventure.  Basically, if I was alone in the bathroom when I sat down, I would roll out a couple wipes worth of toilet paper.  That way, if someone came in mid-go, I could likely get away with only rolling out one more wipe-worth.  In my mind, this meant that the lady in the next stall would think I was only there for a tinkle. 

Then there is the "mid-explosion, noise cancelling flush".  I know that doesn't fool anyone into thinking that I'm done, since I'm still sitting down and remain sitting for the next few minutes.  But I like to think that others appreciate my being courteous in this way.

Oh yes, and there is the "lingering of shame".  This is for when I haven't been able to camouflage what I've been doing in the stall from my neighbours.  So I basically just wait them all out, and exit the stall only when the bathroom is empty.  Of course, I still have to leave the actual bathroom so it doesn't really hide my identity from anyone who may be waiting outside to catch a glimpse of the crazy-pooper.

As you can see, none of these strategies really work.  It's all a thinly veiled attempt at having a bit of dignity in the midst of all this craziness.

But.

I have found something that works to solve the biggest problem of my condition: the GADAWFUL smell.

Poop smells.  We know this.  We don't really like to talk about it.  We all just spray around that "fresh linen" scented air freshener while pretending that it doesn't make the bathroom smell like fresh linen poo. 

See, I'm not the only one who suspends my disbelief in this area.

The problem is when you mix poop with blood.  It smells like rotting flesh, which I suppose is what you would see if you took a peek into my colon.  We have peppermint air freshener in our bathrooms right now, and it warps the smell into something that I imagine I would smell in a morgue if I was chewing gum.

Not pleasant.

Even less pleasant when you're in a public washroom with a lineup, and you have to make eye contact with the lady you're subjecting this to after you leave.  My smile to her says "I'm so sorry, and I hope I never see you again in my life".

That's where this trick has changed my life (please click over there, I don't want to have to explain it all in detail.  Plus, she does a much better job than I ever could).  I've used Wintergreen Oil, and this is nice for home.  But I carry around Lavender Oil with me and use it all the time.

So if you're ever in a toilet and are wondering "who pooped lavender?"  It was probably me.

You're welcome.

Thursday, September 13, 2012

How It All Began



Years ago, before I realized that this would turn out to be an ongoing issue, I posted this on a different blog I was writing.  I'm re-posting it because reminding myself about the intermittent nature of this disease gives me hope that it can go into remission.  For now, a time warp back to September, 2005.

The Life and Times of My Colon 

So this is my rant about the health care system as it applies to me (a generally healthy person getting a feel for what it must be like to have chronic health problems). May also be a little bit too much information for some...I am going to try and euphemize wherever I can.

Last year around this time, I began having stomach/intestinal problems...I felt a constant churning in my stomach for about 3 weeks, and this gradually turned into incredible spasms of pain in my lower abdomen, occurring about 5-15 times per hour. These felt remarkably similar to labor pains...I was actually needing to breathe through some of them.


At first, I chalked it up to stress. I was trying to finish my school placement, we had just bought a house and were planning a move, I was trying to supplement our income whenever I possible could by working extra hours, and I was feeling pretty busy. But then I started feeling like I needed to go to the bathroom (BM) 4-5 times an hour, and more often than not, I (how should I put this...) eliminated only blood. That scared me enough to call the doctor.


I made an appointment to see the doctor who was (of course) on holidays, so I ended up seeing her 'resident'. Now I have nothing against residents in general, but this one was pretty useless. She asked me a couple of questions, hehmed and hawed for a few minutes and came up with the well thought-out diagnosis of....constipation. Now, I know my body pretty well, and I think that I would know if things were getting backed up in there. But she sent me away, telling me to eat more fiber and that was that.


About a week later, when things hadn't gotten any better, I made another appointment. My doctor was again away on holidays, but I saw another doctor on her team. She felt that my symptoms warranted a trip to a specialist, and said she would make the referral. Two weeks later I got a call from the office with an appointment in 6 months with the specialist. They wanted to do a sigmoidoscopy (at least I think that's what they called it) which is sort of like a less-invasive colonoscopy (although I don't think there are really degrees of invasiveness when you're talking about something going up your ass...). Fab.


So, now I'm just waiting. And wouldn't you know it, about a month later, all my symptoms disappear.


As the time for my specialist appointment approaches, I'm feeling a little bit nervous about the procedure. I hadn't heard from the office telling me of any "special preparations" that I needed to take before my appointment. I call, the answering machine tells me they are on holidays until the day before my appointment (understandable...I was booked for the 1st week of January). I left a message and they didn't call back. The morning of my appointment, I called and spoke to the receptionist who told me that I was supposed to fast for 12 hours before hand, as well as ensuring that I was all cleaned out inside. She asked if I wanted to rebook, and I declined at that time because I had not had symptoms for 5 months.


So, here I am, 9 months later, and it's all started up again. My first stop is again to my family doctor, except they don't have any appointments for another 3 weeks. I'm sure they'll refer me once again to the specialist which will take another half a year. What the Hell kind of system is this?? I know that I should count myself as lucky for even having a family doctor, but I don't understand how it is helping anyone to have to wait that long for a chance to see her. My family of 4 makes probably a total of 2-3 visits a year to the doctor's office...but because my dr. in involved in some program where her patients promise to call her office first and see an on-call dr. rather than visit emerg (unless it is really a life threatening thing), the government pays her "x" amount of dollars monthly per patient rather than for actual services provided. I understand the theory behind this program (keeping the emergency rooms open for actual emergencies) but all it has done is encourage family doctors to take on more patients than they can realistically manage, make more money, and actually see less people.


I know that we have a huge doctor. shortage in Canada right now, but there has to be a better way. This is pissing me off.

 

Sunday, September 9, 2012

Ew.


I'm writing a blog about poop.  Not generic poop either.  My poop.

This is quite a bit outside of my comfort zone.

Although I'm pretty open about things, even embarrassing things, toileting was not a topic that I ever thought I would be discussing with anyone.  I kind of just took it for granted that I wouldn't ever need to discuss it with anyone.

When I first met my GI doctor I struggled to find language to use to politely describe what was happening with me.  It just squicked me out to talk about it.  Even now, I have a hard time talking in specific language.

I say "used the bathroom" instead of "shat so much blood the toilet water looked like fruit punch".

Or  "Having a bad day" instead of "pooped in a plastic bag in my car".

But.  I am being incredibly open about my condition online.  I used the word "anus" in my opening post even.  And the contrast between my words in person and online has me wondering.

Because now that I've put it out there, you know what's going on.

Obviously I knew this.  When you post a link to your blog, people are going to read it.  I've also been encouraged by what people have said to me, congratulating me on speaking out, on being honest.  But underneath all that though, are you grossed out?  Do you think differently of me?

There seem to be only two groups of people who can talk about defecation openly and not be judged: guys,and new parents.

The new parents get away with it easily.  They're not even talking about their own poop.  It's baby poop.  It's cute.

Guys too.  It's totally culturally acceptable for them to openly discuss body parts and their functions.

But girls?  Are we allowed to talk about this stuff?  Without being thought of as disgusting?  I sure hope so.  In my travels through the Interwebs, I've found a great group that is doing their best to break down the stigma associated with IBD.  It's called Girls With Guts and the stories there are pretty inspirational.  It's definitely worth a read if you're even remotely interested.

As for me, well I imagine that I will get more comfortable with language as time goes on.  After all, Everyone Poops!

 

Wednesday, September 5, 2012

My Own Cheerleader

You can do it!
Sometimes when I make it to the toilet on time, I think it would be appropriate for a marching band to appear, playing some sort of celebratory fanfare, heavy on the trumpets.  That hasn't happened yet.

The other thing that would be handy would be my own personal cheerleader, pumping me up when I'm feeling discouraged, and urging me to keep on keeping on when I'm on the brink of disaster.

Instead, I've had to become my own cheerleader, which is a new role for me. It is now very common for me to give myself pep talks as I'm scurrying as fast as I can to the nearest restroom.  They go a bit like this:

"You can do this!  It's just mind over matter. Mind over matter. Mind over matter!  You can do this!" (this is the one that I generally use while I'm in the car.  Along with "come on come on come on come on!" while waiting for red lights.  There are SO many red lights in this city!  Also, advanced greens for every direction except the one I'm traveling.).

If I happen to be walking (which is actually a thousand times worse than driving.  It is really really hard to clench certain muscles while moving others as fast as you can), I generally time my mantras to the rhythm of my footsteps: "You. Are. Going. To. Make. It. You. Are. Going. To. Make. It."

On a good day, I find this to be hilarious.  On a bad day, it makes me really angry.

Because the reality is that this disease steals moments away from me.

Yesterday was the first day of school.  My 6th grader wanted me to walk with her to the bus stop, as she does most days.  And I tried.  Valiantly.  Even though I knew I was having a rough morning.

It's really not that far of a walk.  Down to the end of my street and around the corner.

And I made it as far as the end of the street before having to apologize and send her the rest of the way on her own.  I couldn't even spend the few extra seconds to give her a proper hug goodbye, just a quick kiss and a "Love you have a good day" tossed over my shoulder as I hurried away from her.

And I wonder how much of her childhood she will remember this way; me leaving her alone to face the world when she's not quite ready.

So as I'm timing my cheer-leading to my footsteps, speed walking down what is possibly the longest sidewalk in the world, there is a voice whispering in my head that there are probably not many moments like these left to spend with her.  She is 11 years old, and isn't always going to want her Mommy to be giving her a kiss and hug in front of a busload of kids.  And I'm missing them.

I just haven't figured out a personal pep talk for that yet.

Sunday, September 2, 2012

Road Trip



Want to know something that causes me a crap-load (heh) of anxiety?  Being in a car, for 2 entire days, driving in unfamiliar territory, with no easily accessible bathrooms.

You see, over the past few months I have been drawing up a mental map of every single gas station, Tim Hortons, McDonalds, and any other possible place in the city that I can get to in a hurry.  Most of the time I can make it to one of them before disaster strikes.  Most of the time.

But on a road trip, I am at the absolute mercy of the highway architects, city planners, or whoever it is that decides where the exits and rest stops will be.  I am also at the mercy of the one who is in the driver seat.  And since I wasn't the only driver this time, it meant that I was not always going to be the one calling the shots.

For someone who doesn't have a digestive disease, this anxiety may be hard to understand.  I don't think I would have been able to wrap my head around it before experiencing it myself.  But I want you to remember a time when you had a terrible stomach flu.  The kind where you camp out in front of the toilet because you don't trust yourself to be even a room away.  The kind where when the cramping starts, you literally cannot think of anything other than evacuating the vile contents of your colon.  Ok.  Remember that?  Good.  Now apply that feeling to Every. Single. Day.

We were leaving early in the morning, which only added to my worries.  Mornings are rough.  Apparently this is common, as the waking process releases all kinds of hormones and stuff.  I'm sure there is a scientific explanation to it all, but I'm too lazy to look it up.  All I know is that I am woken up between 6-6:30am with a need to dash to the toilet, and then (on a bad day) it's a pretty sure bet that I'll be in there 6-10 times before 9am.

In any case, we got on the road in good time and headed towards the border.  I was actually feeling pretty good, which was encouraging!  But then we got in line.  You know what the border crossing looks like, right?


No U Turns, and no bathrooms in sight!

So of course, since my brain is connected directly to my colon, my panic about not having a bathroom available meant that I suddenly and desperately needed to use one.  We were crossing in Niagara Falls, where quite a few pedestrians walk across.  My dad's girlfriend offered to walk with me to the pedestrian crossing to see if there were bathrooms available there.  It wasn't too far of a walk and the need was great.  So we got out of the car, hopped the barrier to the sidewalk and headed for the gate.

Uh yeah.  Apparently Canada doesn't have a bathroom on our side.

So I'm waiting at this locked door.  Border guards are doing their thing, and I'm clenching and dancing.  All I can see is the ladies room sign at the other side of the room.  After a few minutes, the guard calls us in.  I shove my passport across the desk and launch into my now routine explanation:

"I'm really sorry, but I have a digestive disease and I have an urgent need to use the bathroom!"
"Ma'am, I need to clear you first, where are you going?"
"Yes sir, I understand, but if we could do this as fast as we can because I really need the bathroom"
"Ma'am I will do what the law requires me to do.  Where are you going?"

Now, I do understand that the man had a job to do.  I truly do.  But at that moment, I could not care about anything else than getting across the room.

 After explaining where we were going, and also that we'd hopped out of the car specifically for the bathroom, he very bluntly said that we had to get back in the car and go across with the rest of them.  When I frantically asked about the bathroom again, he told me that he would escort me to the ladies room and then back outside.

That's not mortifying at all.  Nope, not at all!

In any case, I got across the room.  He then escorted me and my dad's girlfriend back into the lineup of cars, and walked us about 200 feet away from the border.  He asked if we could see the van we came in, and we pointed to one that looked about right.  He handed us back our passports and walked away.

We walked up to the van we'd pointed to and realized that it was not actually our van.  Not knowing what else to do at that point we started weaving in and out of the cars in the lineup, desperately looking for our family.  I can only imagine what it must have looked like to everyone there...here were 2 women who had just been escorted out by a border guard, and now were running through the traffic looking panicked.

And in the middle of it all, I hear someone calling my name!  It was the father of one of my daughter's friends, laughing and asking what the heck I was doing.  I don't even think I said something intelligible, just mumbled something about needing to find the van and ran off.

We finally spotted it, and ran as fast as we could.  We got in, laughing, relieved and buckled up.  They were literally next in line, and I don't have a clue what we would have done if they had already crossed!

Disaster averted, thank goodness.  And mercifully there were plenty of exits that first day of driving.  And now I have a funny story to tell, right?  Bright side.  Bright side indeed.

Coming out of the closet.


 Or maybe it would be more appropriate to say "Coming out of the bathroom".  Because that's the place I've been spending most of my time lately.