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.