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.

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.

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.
 

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!

 

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.

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.