Friday, January 28, 2011

It’s Colonoscopy Time!

EveningGoose (not her real name, obviously) asked me to write about colonoscopy.  Her Mother, Mrs. EveningGoose’s Mother - to borrow the format used by children - gets to have her very first full colonoscopy soon.  [singsong voice]  “I get to be helpful.”
Ahem.  Yes.  To business.

First of all, colonoscopy isn’t that bad.   I know it worries people.  It is a strange medical thing.  You don’t hear much about it in the media.  It deals with [whispering] your bottom.  It sounds uncomfortable, scary and embarrassing.  And, among other things, it checks for Cancer.  

Did you go to that link?  Whole Lea Cow, talk about depressing.  Not exactly welcoming, warm and friendly, is it? 

But the procedure itself is really not that bad.  Let’s start with the name.  Colonoscopy.  A doctor is going to be looking at your colon (the large intestine) through something called an endoscope, which is essentially a long, flexible tube with a camera on the end.  It looks a little like thick coaxial cable – like the stuff that goes from the wall to the TV.   A ‘scope’ of some kind.  A scope for your colon.  Colon-o-scope.  But it’s not really pronounced like that.  If you do say it that way, your doctor will look at you a little funny.  But you can call it a scope.  That isn’t as scary, is it?  Scope is the term we’ll be using.

By the way, the preparation (or prep.) is the worst part.  Also the longest part.  And it’s not as bad as it used to be. 

Your doctor may have sent you to a specialist, called a Gastroenterologist.  This lovely person will perform the procedure, probably in a hospital or other clinical setting.  My Gastroenterologist is a very nice man.  I refer to him as GastroGuy.  Not to his face, of course.  I don’t know how he’d take it.  I don’t think he would be offended, but he may feel compelled to start wearing a cape, or a mask and tights, and that wouldn’t look dignified.  It probably wouldn’t inspire confidence in his patients, either.

Anyway, Your GastroGuy (or GastroGal, or GG) will have given you a list of instructions around the time you booked your scope, or they will be sent to you probably 2 weeks before your scope.  Read These Instructions!

Like the ones for CT, they didn’t write them for the laughs.  They are to help you with the preparations before hand.  If you follow them, the prep shouldn’t be too bad.  The instructions will help make the overall procedure easier for all concerned.

You may have a list of foods you should not eat before the scope.  It’s a good idea to make a menu plan on your calendar, and ensure you stop eating things like, say, poppy seeds or cucumbers or tomatoes when the instructions tell you to.  

You need to stop taking the things in so that they will have enough time to come out before the scope.  Cucumber and sesame seeds can (and will) stick to the sides of your colon.  Your GG will have to remove them to get a good look at your colon walls.  This will be accomplished during the scope with a jet of really, really cold water.  It doesn’t hurt, but it is:
    a) an incredibly bizarre feeling that you probably will not enjoy at all,
    b) a little embarrassing, because it says "I didn’t read the instructions."  

Unless of course you did read and follow all the instructions, in which case your GG will talk to you about it.  Don’t Panic! 

You will not be allowed to eat solids for some number of hours before you take your purgative.  You will not be allowed to consume dairy for some number of hours before you take your purgative.  Trust me when I say this is really, really important.

At the beginning of this post, I said that the prep is really long.  It is.  So, for the sake of readability, I will be breaking this into a few posts.  I want to give a good description/explanation of what to expect, in smallish increments.

Stay tuned!

Tuesday, January 25, 2011

Things they don’t tell you before your CT

Before you report to the Hospital or Imaging Centre 1 for your CT, you will be given a list of instructions.  Things to bring to the hospital, like a Health Card, ID, Copy of the Procedure Orders (if you’ve been given them), list of medications or the medications themselves, vitamins or natural supplements you take, that sort of stuff.  Bring them.  You will be told how to prepare for your study.  When to eat or to stop eating.  If you have to take a purgative.  What to take as a purgative.  When and how to take it.  Do what they say.  The folks who told you to do this stuff didn’t write the instructions for laughs.  You do it this way to make it easier for you, not easier for them. 

OK, some of the stuff makes it easier for them.  Bringing your vitamins and supplements and telling the nurses and techs about any allergies you have ahead of time means the these lovely people probably won’t have to deal with you having a reaction and screwing up the whole day.   Not just your whole day.  The tech’s day.  The nurses’ day.  The doctor’s day.  And the days of all the patients scheduled to have the test after you.   Don’t be ‘That Guy'.

In addition to all the very important stuff they do tell you, which includes why you are having the test, and what the side effects are, and what the risks may be, there are things they don’t tell you.  Well, sometimes they do tell you, but not always.  Why?  Well, because it’s not really that important in the grand scheme of things. 

Anyway, I’ve had some of these tests lots of times.  If I can help you not panic, I’m all for it.  I’m often the youngest person in the waiting area.  I try to calm the other patients down.  After all, if you are here to see exactly how bad off you are, isn’t it nice to see someone who has done it before?  
  • Barium tastes bad. Orange flavor is a lie.  Whoever decided that abomination was ‘orange’ has clearly never eaten any form of citrus in his (or her) life.  And who decided ‘Orange’ was a palatable flavor for a thick liquid-metal-chalk thing anyway?
  • The drink itself looks (initially) like milk.  Kinda.  If you squint.  It is thicker, almost thick milkshake consistency.  It does not taste good.  I have seen 2 men (or perhaps it was the same man twice) chug it.  They just some how opened up their throats and down it went.  One 500ml glass at a time.  Clearly this is an important skill. 
  • Have tissues handy, and try not to lick your lips.  Ever notice that you do that when you drink?  Lick your lips after a sip?  Try it.  I’ll wait.  Did you get yourself a nice beverage.  Take a sip.  Then another.  Do you feel any fluid on your lips?  Did you lick it?  C’mon, you know you did. It must be a reflexive action.  Well, when you drink barium (or intestinal lav., for that matter) don’t  lick.  If you are at all like me, and odds are you may be, the taste is so unbelievably repulsive that the barium may come back up just a little bit.  And that’s bad.  Not because it will hurt you in some way.  No, it’s bad because you will have to drink another glass.  And the nurse/tech supervising will make that face.  You know the one. 
  • Iodine may be used as a contrast agent, too.  It’s better than barium, in that you don’t taste it.  Right away.  It is a vascular contrast agent.  This means it will be injected. To see the vascular structures.  You know, the lovely little tubes that carry your blood around your body.  They are everywhere.  They are even in your tongue.  Yep.  But the part they don’t tell you about until you are strapped to the table with the stupid needle in your arm, is that the iodine will cause you to feel warm as it courses through you.  This is really neat, in that you can actually feel it moving through your body.  Those of you with medical experience, or practical patient experience, know what is coming.  You have lots of vascular structures in your lower abdomen and groin.  When the iodine hits, it will feel as if you are going to pee yourself.  And it will feel like you may have peed yourself.  You (probably) didn’t, it’s just a side effect of the contrast agent.  Just to be safe, always go to the bathroom before a CT.   
  • As a courtesy, don’t look too closely at the patients coming out of the exam room.  They may be feeling a little self-conscious as they exit.
  • According to one patient, the Iodine induced warming feels very much like a menopausal hot flash.  This may reassure you.  Or it may make you dread menopause.  Or it may give you empathy for menopausal women.
  • Be nice.   I always try to be nice for my techs.  I wouldn’t want their job.  Yes, you are having a test, and yes, this is not a very good time for you.  They are here to help you, and they have some not particularly pleasant things they have to do.  However, in chatting with many techs,  I’ve found that we know the same people.  Although I now live in a good-sized city, I grew up in a small town.  
  • Ask the techs if you should eat or avoid eating anything in particular after your test.  You will have been fasting, and may have also taken a purgative before hand.  Sometimes the contrast agents will have a residual after taste.  If they say to not eat something in particular, DO NOT EAT IT!    They are helping you here. 
  • The barium follow through will be eliminated from your body.  It will not be painful, nor will it look like the sort of thing that is normally eliminated from your person.  Spackle?  Bird poop? Parging, possibly?  Don’t panic.

Well, ok, you can panic a little.    

1  I live in Canada.  

Friday, January 21, 2011

“She’s my Cancer Sherpa.”

That is how I was introduced to a dear friend’s care team.  I rather liked it.  It is certainly a lot shorter than My-Friend-Who-Comes-With-Me-To-Appointments-And-Carries-Stuff-And-Takes-Notes.  It is less official sounding than Patient Support Person. 

Cancer Sherpa nicely summed up what I was doing:
-       Accompanying the patient on her journey.  While I may not have walked the exact route she was taking before, I at least knew the terrain.
-       Carrying the stuff.  Coats, hats, mitts, purses, reading material, notebooks, pens, change, hand sanitizer, wipes, Kleenex, water, ginger ale, snacks and assorted papers were lugged cheerfully around in my giant backpack called ‘Support Bag’. 
-       Making sure she stayed hydrated, rested and ate.  Well, ok, nagging her to do these things.  She’s a grownup.
-       Keeping track of things.  Who has signed up to bring meals which night?  Where did we park the car?  Where are the bathrooms in this place?
-       Pulling her back from the edge occasionally.  Chatting about nothing in particular to take her mind off stuff.  Introspection is good, but sometimes too much is bad.  Reminding people to never Google anything medical before attempting to sleep. 

I found that when people asked what I was doing, saying “Cancer Sherpa” was a pretty good answer.  The people who were just making small talk could pause for a moment, then go back to talking about themselves.  The people who were interested (or listening) would ask a question. 

And it is talking to those people that made me think about just writing all this stuff down.  I have asked lots of questions, and found lots of people who knew, or knew who would know the answers.  "What is this test like?"  "How bad is the prep?"    "What should I take with me?"   "Where do you park?"   "Why am I so much more easily distracted?"

I started keeping lists.  In real life, I’m a project manager, so lists and schedules are kind of my thing anyway.  I like sharing information.  It’s not going to do a whole heck of a lot of good just locked up in my skull. 

A few weeks ago, I attended a seminar at one of the local universities.   Some of the things discussed would have been really useful in the past year.   Before Christmas I had coffee with one of the most plugged-in people I know.  He gave me some good advice and encouraged me to start this blog.

That’s why I started this blog.  I’m calling it Jade Sherpa.

Tuesday, January 18, 2011