Sacrificing the Queen (or Accidental Crohn's Trilogy)

I did not intend to have all of this particular subject matter three posts in a row, but this is the text that is burning on my heart at the moment.  This helps me process.  This helps me find some peace.  This helps me to articulate something difficult to find words for.  This, I hope, helps those who also seek those words for themselves and those who seek to understand those that need them.

So I have had my colonoscopy.  I picked up my chart from the bedside table to look at the pictures while the doctor was out of the room, because I know what I'm looking at by this point and it's my chart (we'll go over more points together at another appointment).  The inside of your colon is supposed to look pretty much like the inside of your cheek--pink, smooth, consistent.  I've seen pictures in the past where mine was red, yellow, black-ish, and actively bleeding with an odd, lumpy kind of texture.  There are the occasional bits and pieces, too, that stand tall against the lining, like exaggerated fingers on an otherwise smooth-ish surface as though my colon were flipping me the bird.  These are called pseudopolyps, sentinalforms, or sometimes simply skintags; they're virtually harmless, but irregular.  Most of my pictures this go-around looked pretty damn good, all things considered.  Our course of treatment is clearly working on most levels.

However there is a particular snag:  my rectum (basically, that last chunk of the normal five feet of large intestine) is still scarred, ulcerated, and six shades of pissed off.  Still.  About four and a half years out, now, for when particular symptoms started picking up steam in that area (as opposed to just all of the large intestine).  The thing is having severe inflammation here generates a LOT of symptoms, including but not limited to the following:  painful pooping, active anal bleeding, sudden and violent urges to go to the bathroom, leakage, fistula development.  Consider this, too, about scar tissue:  it does not stretch, like how your colon is supposed to be able to hold a great deal of...material, and the resultant layering of this scar tissue in me has restricted my rectum down to where my doctor cannot put a finger up to check for basic scans in the office.  

This compounds into a great deal of frustration for me, that about everywhere else is actually in decent shape (for me) but this last, stubborn piece that causes most of the rest of my current symptoms.  And it is continuing to narrow, possibly eventually blocking itself off.  
So what can we do?  Well, that's where we're at about now.  If you mention "Crohn's" and "rectum" to a surgeon, they'll back off, meaning that no one really wants to touch the rectum of a Crohn's patient surgically unless they have to--and I have a thick chart on top of that.  It does not end well, with a very high percentage that issues will reoccur or otherwise figuratively become incensed by the effort.  This is why no one has mentioned "fixing" the fistulas, since this would involve the rectum, the place of highest inflammation in my body currently, and all signs point to both of mine being attached to the rectum.  No surgeon wants to make it worse, particularly if it's something I can just "deal with."  My doctor and I will be running some additional bloodwork to see if we can better some of my medication levels and an MRI to see what we can see about the fistulas, but I feel a certain kind of impending doom thinking about the actual solution.

Take it all out.  Have a permanent colostomy (i.e. poop in a bag for the rest of my life).  

I've seen this as an eventuality for years now--I had just hoped to have another ten or so before I had to pull that trigger.  I've lived with it before (both a colostomy and an iliostomy) and I know that it is perfectly livable, if inconvenient; the difference would be now that there would be no eventual undoing.  Permanent.  Even now, though, I'm still not certain if this is where we're heading, but frankly it doesn't look good.  We need more information.  We're getting more information.   

I don't know if I stick through it a little while longer if it will resolve itself or if this really is the best course of treatment for me, to give me the best quality of life.  It's like waffling whether or not to take a pill for pain, wondering if it's better just to take one and feel better now or stick it out to see if it goes away on its own, suffering but not wanting to waste or take something unnecessary.  It's like sacrificing your queen in chess, that you're willing to do it to win the game, but you don't want to have to do it if you don't need to or too early in.  I'm frozen at the figurative board because I do not know what my opponent might do.

So, I guess we'll just stare at each other.

In the meanwhile, I feel a certain sense of resolve that can only be fueled by anger.  I'm not mad at God nor my previous surgeon nor myself--the situation is.  Makes it hard to let it go, when I don't have anything to really rail against.  It's not fair.  It sucks.  It just is.  

So I intend to take some drastic action, and a much less worse kind of drastic action than I could in the circumstances, before anyone becomes alarmed.  I'm going to work on improving my body, doubling down on sticking to my diet and changing my exercise routine, specifically.  My body is going to be in the best damn shape possible if I'm going to surgery or it's going to be in the best damn shape possible to help make everything else better, whichever way this turns out.  I am tending to different components of my health that needed to be done a while ago, like my yearly eye exam that I haven't done for two years.  I'm catching up on mail and medical bills that have been stacking up because I did not want to look at the fiscal toll of my day-to-day needs while fretting about new fistulas and the like.  I'm addressing parts of the house that have been neglected (or not moved in fully yet) in small pieces at a time.    

That anger is also transmuting into a lot of tears.  I'm so very, very tired in my soul.  There is a significant part of me that wants to press for surgery because then I won't have to worry about deciding about it anymore, no figurative swords over my head. 

Again, a lot of conversations yet to be had, a couple small avenues to pursue, but more and more I feel that I need to be preparing myself, too.  I've started my shopping list (including an "ask me about my ostomy" shirt and a couple of pretty-patterned Stealth Belts) and had shower conversations with TSA in my head.  I fully plan to get a tattoo on my butt that says "for display use only."

But more importantly, I need to stop myself and mourn from time to time.  I've gotten too good at distracting myself.  This has certainly brought a lot more depression, anxiety, and anger forward from the back of my mind, surrounding my daily tasks more than I normally allow my disease to do.  I will need you all.  I don't always know how to ask for it, when to ask for it, or what I might even specifically need in that moment.  But I will need you there, all the same. 

I hope I will have more answers soon.  Thank you all so very, very much for your continued prayers and support.

Colonoscopy for Dummies (or Why I Cannot Drink Sunkist Orange)

I don't remember why it was the subject in the office one day--probably something about health in general--but I made the claim that I had probably had more colonscopies than everyone else in the office combined.  I'm pretty sure I've had at least eight by this point.  All at once, that struck me as funny, sad, and astounding.

Sometimes, I forget that procedures like this have not been an important part of peoples' lives.  The other day, I was in a conversation with friends and genuinely forgot that diarrhea was not the only way to rapidly lose water (it's hot where he works, which means sweating), rattling off some tips to help and earning a few confused stares.  I've had to take very close stock of how loose my stool is for long periods of time and that is the way my brain is subsequently trained; most people have not.

Given that I'm facing another colonoscopy today, I thought I might share some of my experience, dispel some myths, and otherwise include a few tips.  Before I do, I will certainly point out here that I am not a doctor and any questions that you might have regarding your own health/body should be directed toward such an authority.  

Plus, this also distracts me from how hungry I am at the moment of writing this.

The Procedure Itself:

So what is a colonoscopy?  To be blunt, they're sticking a camera up your butt.  This also entails a little inflation with air to help make it easier for those performing the procedure to see.  Additionally, there are components of that camera that can take samples of any suspicious tissue, checking for pre-cancerous cells, for example.  This can be the difference between explaining art to someone and taking them to see the portrait itself, where the doctor can now see symptoms (tracking progress in my case) by noting signs of inflammation, bleeding, cancer or pre-cancerous areas, and overall getting a fuller picture of the health of this part of your body.  While this sounds unpleasant, in the States we tend to have a nice, happy cocktail of drugs, commonly Versed (generic Midazolom) and fentanyl or maybe propofol.  Versed prevents your brain from making new memories, and fentanyl is a pain inhibitor.  What this means is you're doped up in some lovely ways and won't remember a damn thing.  

I stress "in the States" because in other countries, they don't bother with the anesthesia unless it is asked for specifically.  It's an uncomfortable pressure, sure, but then you don't have to worry about getting a ride home or losing the rest of your work day.  I've had a few lesser procedures where I was awake and had some kind of scope (once for radiography and another to confirm that my ostomy had reattached well with a simple camera, which I narrated for my doctor because I could tell what was looking at).  I have theories as to why we go right to the drugs in the US (they will do it without them if you press), which include padding hospital CEO pockets and simply not wanting to deal with people that have a camera up their butt.

All in all, though, the procedure, again, is not that bad.  Your doctor has seen plenty of butts and has been sharted on or worse, so you are far more embarrassed about this than anyone else in that room.  Ask for another warmed blanket and relax.

The Bad Part:

The prep, however, can be six shades of miserable.  The thing is, if you want a clear view of the colon, well, you need to clear out all of the normal stuff.  And you never know how much poop you can store in your body until it comes shooting out of your ass at a startling velocity.  You're hungry since you need to be on clear liquids for the entirety of the day before and into the day of the procedure in addition to a raw butt.  What people complain about the most is drinking a certain level of ill-flavored sludge.  Most of the time, when someone is getting a colonoscopy, they are given about a gallon of liquid to drink.  It can be thick, it can taste nasty, and all around it feels like it never ends. 

I haven't done that version of the prep since I was twelve.  Ah-ha!  Did you know there was an alternative?  When I was a certain shade of sick, where imbibing anything in my stomach was intolerable, I remember looking at the jug of liquid with a lot of despair.  And between myself and my parents, we asked.  Sure enough, there was one. 

The nurse suggested that I mix it with something we had on hand, which happened to be a can of orange Sunkist. 

*glare* You...

I still had to drink some, but significantly less, though the nurse warned it would taste pretty disgusting.  She was right.  Imagine orange soda with half a shaker of salt.  Evidently, it worked by reverse osmosis, that the substance was so salty that it pulled water out of my system and into my colon.  In any case, it worked at liquefying my insides to help clear out the crud.  Ever since then, as I'm talking to the doctor or the scheduling staff, I ask if there's something else other than the normal jug of liquid.  The last few times, it's been pills instead, taking four every fifteen minutes for a period of time paired with a cup of some clear liquid.  But I get to choose the liquid, meaning it could be apple juice or tea instead of something that just tastes...off.  If you're younger and specifically if your kidneys are happy, it's worth asking to see if you can follow suit. 

Regardless of what you do, though, there is a very particular rumble, as your whole gut seems to shift down a few inches, and that prep is EFFECTIVE.  Fun perk, though:  I tickle Andy and tell him he can't tickle me back because "I might poop."  He doesn't like that as much as I do.

Tips for the prep:
1.  If the alternative sounds good to you, it's worth asking.
2.  Make yourself comfortable and be close to a bathroom (seriously, don't start the prep at work).  You'll need to at least figuratively buckle in once that prep gets everything moving.
3.  Grab some Preparation H wet wipes for your chaffed butt and sit in the tub. Around my fistulas or whenever my butt is irritated, I also use a product called Calmoseptine which is like adult diaper cream in some of the best ways--both for pain relief and soothing the angry skin.
4.  Surround yourself with some good distractions.  I've got Civilization V, Netflix, and a blog post, myself.
5.  Drink some extra fluids the day before you start the prep, trying to ensure against dehydration by giving yourself that boost.  And certainly, too, drink more while you can.
6.  Allow yourself to be sullen for a while.

Grumpy pants are on in full force

On the procedure day itself:
1.  Drink as long as you can.  Staying hydrated will help start the IV and otherwise keep you through.
2.  Be early to the hospital.  And make someone else drive.
3.  Be sure that you follow instructions prior to the procedure--nothing is worse than going through the prep and having to turn around and go back home to do it again another day.
4.  Ask you doctor questions.  Know what is being put into your body, and ask as many questions as you'd like.  You have a right to understand and know what to expect.
5.  Be polite to your nurses and medical staff.  Yes, you're hangry and annoyed, but one should always be nice to your hospital staff, if only to get additional warm blankets.

What it means today:

All in all, it's not that big of a deal.  The risks are minimal and the potential rewards are good.  It's just damned inconvenient.  The thing is, though, I'm really looking forward to hearing some good news.  I feel as thought we been making good progress in my disease, but it would be nice to have further, visual confirmation on that.  I have been in this same flare event now for about seven years.  Seven years trying to get my symptoms truly under control.  This has involved three major medication switches, surgery, cleanup when surgery failed, and lots and lots of poking, prodding, and tears.  Crohn's is something that is never completely over, but I long for a little bit of peace.  Even if it's just symbolically, a little peace would be nice. 

I want to know where that place is, the place where everything is the best it can be for me.  If I can find that place, then it would be a frameshift in my mind, that I could find out finally what are the things I have to accept as "just going to be a thing" and what are the things I can fight to make better.  It would take away the uncertainty, knowing when and what to fight for.  Logically, I know that place doesn't really exist, that there's always an element of guessing and trying, but I feel that wish pushing from my heart to my throat all the same. 

This is a progress marker for me, making it to another checkup.  I'll be doing a colonoscopy every other year in my current treatment plan, checking in on progress and screening for some other fun components I'm more predisposed to as a result of my disease (like colon cancer).  I can look at the resulting pictures and tell you what's good, what's bad, and what some of those weird shapes are.  I know roughly how quickly my body responds to the prep.  I've had to set some parameters for myself on when it's time to see the doctor, when it's not worth going to ER (because they won't be able to help in some circumstances), and when it's time to simply put up with it.  The rest will hopefully come in time.  And a level of peace will hopefully find its way sooner still.

And for now, I'm planning what I will eat this afternoon as soon as I'm able to.  I've landed on "milkshake" but have not yet decided on a flavor...

My Two Faces

I heard some bad news from my doctor this recently.  I hit one of my "No, you really can't ignore this any longer" markers--the pain was bad enough that I couldn't sleep.  I called in sick to work so that I could rest, take care of whatever parts needed tending, and hopefully squeeze in an appointment (along with any needed bloodwork, prescription pickup, etc.).  Somewhere in the night, I did start to feel better, enough to sleep until about nine (though actual time of falling asleep is undetermined).  I waffled for a couple of hours as to whether or not I should go to the doctor, because I don't like polling an expert if there's no evidence of a problem (like calling over Andy to fix my computer and the problem has magically resolved itself...).  Eventually, I made the call anyway.  

I have a new fistula, one of the fun quirks of Crohn's Disease.  

A fistula is a spontaneous connection between body parts.  One day, my rectum and an abscess were connected through a small, random path that eventually broke the skin; this one I've had for about two years now.  No doctor created this drain--my body made it, slowly and independently.  On the one hand, it's helpful because I would rather my body drain an infection rather than build up and make me feel sicker.  On the other, when it's irritated, I have a hard time finding a comfortable way to sit and have to change a pad frequently in my underwear, with where it's placed.  And here's the weird part--sometimes when I expel gas, air escapes out of there, too.  Yeah, weird and unpleasant, I tell you.  

So here are some of the basic facts:  

1.  Fistulas could connect about anything.  Intestine to bladder, gall bladder to skin, artery to vein.  Lucky me, with how my disease works, I tend to involve the rectum in some capacity, as this has been the area where my disease is most stubborn, where the cells are most diseased/irregular.

2.  It may or may not ever close on its own.  The one I had first has, again, stayed open for two years and shows no indications of closing.  

3.  There is little we can do about it.  Surgery near the rectum at all for me is considered a BAD idea--plus there's a significant rate of reoccurence.  Worst case scenario:  additional complications in potential surgery could result in an ostomy, which I would prefer to avoid if possible.

This new one though, well, it's in such a place that the doctor I saw was my OB/GYN.  She stuck a q-tip in to try and find where it was tracking, which involved some very loud swear words on my end.  All told, while I'm feeling better physically because the fistula is serving its purpose of draining...something, I'm emotionally a few shades of upset.  

There are so many unknowns with this.  We'll need to find out what it's connecting to to make sure there aren't any other problems we need to address, and otherwise I feel my chances are good that I'm stuck with it.  A second one.  In addition to everything else.  Another thing to monitor, another thing to potentially cause a problem, and another thing that I'm mad as hell about.  I accept that this is a condition of my disease; I have to continually re-accept the life adjustments that I must now make for it.

So emotionally (now and in many other moments) I have two warring sensations, my two faces:

I am strong, capable of seizing control out of a terrible situation and powering through.  I am resilient, standing up when I should be knocked down and finding another way to push back.  I have grit enough to carry on, refusing to let Crohn's take one more thing from me.

I am fragile, easily shattered, knowing that an ignored symptom could equate to a week's worth of hospital time.  I am depressed to the point where I do not want to leave the bed and feel all this time healing is wasted time, time stolen from me.  I am so, so angry, and that always seems to come out as more tears.  

Okay, I'll add a third--I don't understand how I can feel these two things so viscerally at the same time.  Like a porcelain doll in the Superman-pose triumphantly silhouetted in the sunlight.  An eggshell, able to resist astounding pressure due to their shape and yet cracked before you make it home from the grocery store.  A Non-Newtonian fluid.  I feel as though I wear both of these faces at the same time, that I exist as a contradiction in those moments I stop to realize it.  I can somehow pendulate between surrender and *insert warrior face here.*   

I'm very aware of my own mortality, of the impermanence of the world around me.  We as living beings are fragile, always a careless step away from death.  Some simply have more cracks than others, revealing that fragility baldly. 

Or maybe it's just fired clay, hardened by experiences to be both breakable but much, much stronger.  But that doesn't allow much flexibility for growth.

OR.  Maybe I'm rambling.  Maybe I am both of these things and don't have to make a perfect analogy (though it makes my inner English Major very uncomfortable).  I am just me, a slurry of emotions, experiences, and occasionally a bit of rationale; I don't have to make sense of all of me.  These components are all part of the mosaic of who I am.  

I find, though, that it's a very common impulse with grief, the need to understand it.  Coping by trying to find reason.  With my disease, I am always looking to understand it better, to wrap my head around why it works the way it does, to possibly predict and preempt future episodes through research.  That answers elements of why, but there comes a point where I need to accept that this is something that I will never completely understand.  It just is. 

This world is chaos.  People die or are hurt in ways that have no logic (there might be symptoms that can be understood, but the why is never truly complete).  I personally don't believe that God "picks" on people, pointing down with a large, ethereal finger that so-and-so gets a tumor and the Generic family has a miscarriage or Joe Nobody was killed by a domestic terrorist.  That's the chaos part.  I do believe though, that God can take these moments of chaos and turn them into something beautiful.  The cracks and the pain are still there--no denying that--but that's where some of the light can shine through.

...which means that my rationale for why we don't always understand is something else that I've worked to understand.

As it stands, I am oddly looking forward to a colonsocopy, where we might at least know a little bit more about the state of things afterwards.  And we--that being myself and those that love me--will continue to carry on.  There will be parts that we understand and parts that we will never be able to justify or ignore.  Who I am is fluid with familiar properties, one face of swirling colors and patterns.  The world will always be a certain level of chaos.  And we will all continue forward anyway.

Andy's Improvisation

I present to you another excerpt from the Peterson Household. 

We have spent now about two full months in our new place.  There are a few pieces yet that don't have a designated spot, but it is all-around definitely starting to feel like home.  We have a basement that I'm already eyeing as a cool, relaxation place for the summer evenings.  We have our own garage that connects inside, so we don't have to bring in groceries in the rain. 

We have some south-facing windows.

Our bedroom window is twice as wide as our old one, and we haven't gotten around to buying curtains yet.  These windows were lovely at first, allowing light in as the days grew longer.  When that first Saturday morning came, sunlight seemed to blast through the blinds like they weren't there. 

After a few days in a row of this, Andy had an idea.  I heard grunts from the other room and came to investigate. 

Now, that is a heavy blanket--note the bending of the thin curtain rod that was left behind by the previous tenant.  It was maybe not the best choice of blankets, but it was a good solution.  However, I still couldn't stop giggling at the sad noises as he fought with it, a  flailing lump under a heavy blanket. 

He paused to peek out from beneath the blanket and I snapped this one. 

Followed by the innocent, "What?" 

We'll get around to curtains at some point.  Right now, I'm inclined to leave the blankets up a little while longer, just because they make me smile.