In Memoriam of Farting

So, Andy and I have this strange tradition.  Given that there was a long period of time where my digestive tract was rigged to exit out of my abdomen--twice--that meant that not only poop was exiting out from somewhere other than my anus but also any air was likewise contained within the ostomy bag.  Once everything was reconnected, if Andy started to groan when I actually farted out of my own butt again, I would remind him (jokingly, of course) that it was a miracle and he should appreciate it and be happy and even grateful that I could fart again as he was trying to cover his nose with his shirt or a blanket while I was also trying to tug it off of his nose.  He takes this all in good humor. 

Now we're preparing for the permanent ostomy (whether that will be an ileostomy or a colostomy is still uncertain), it occurs to me that my farting days are numbered.  What a weird thing to feel nostalgic about.  

• No one can ever blame me for their own fart ever again, provided I don't obviously lift the flange and let out some of the air trapped therein, at which point any hypothetical accuser has asked for it, after all.  
• Since I will have no sphincter control and the ostomy site, I cannot control when it makes noises.  This offers a certain kind of freedom in refusing to feel awkward about the gurgling sounds my body makes.
• I will never have to worry about "not trusting" a fart ever again.  My pants and underwear are safe, henceforth, from sharting.

So, I'm struck with another odd question:  are there elements that I will miss about farting?  I haven't really found body humor as funny as your average bear for a while, but appreciate that there are moments where it can be amusingly timed.  Other than that, I've been wracking my brain and haven't really come up with anything other than the joy of grossing out Andy on occasion. 

What I might actually miss, though, is a particular sense of belonging that I had never realized.  I never appreciated farting until it was only coming out in a bag and then when I was routed back.  I've had the last four years or so to appreciate farting again.  I bring more attention to it with our weird "It's a miracle!" running joke, still reveling and confused all at once.  Soon, that will be one way where I'm just not "normal" anymore.  

Some of that is an illusion--my normal is going to be different just as it always has been, though in less obvious ways.  The ostomy will be under my clothes, but still a visible bulge, more apparent than my signs and symptoms used to be, and always on the back of my mind.  Sometimes, I wish that people could just look at me and know that I'm fighting this invisible battle, so that I didn't have to ask for help; other times, I'm glad that I can hide it away when I don't want to talk about it anymore.  Similarly, I've been very open about most things, but at the same time, I appreciate that I can choose when I want to be open.  The further we drift from "normal" the more intimidating it will be to discuss it and the more difficult for people to really understand.  Yet, it will also be more rewarding, bringing a stranger perspective to a normal place.  I will continue to write what is real to me.  

I imagine that I will feel a certain pang when someone farts around me (be it a tuba, a duck, a burble, a rumble, or a deflating balloon animal kind of sound); I won't belong there anymore.  I hold this brief moment, now, in memoriam of farting and all that it might imply. 

And, yes, you may giggle now.

The Call of the Void

Sometimes, I'm sitting in a group of people doing perfectly normal things, having a perfectly normal conversation (well, normal for me, anyway) and in the middle of nowhere comes this strange thought, bright and clear across my mind:  "Tell them they're worthless." 

And I'm shocked.  I have no idea where that thought came from.  And I would never say that to this person or anyone.  I resist the urge to shake my head to make the thought go away, hoping that I have given no outward clue at all what just happened. 

Another time, the random thought to swing out and punch the stranger walking by.  Perhaps that particularly raunchy scene from a movie I saw six years ago while I'm sitting in church listening to announcements.  I hope very much in those moments that no one can read minds because they might get the wrong idea. 

These are intrusive thoughts.  I used to feel ashamed about them, that something must be wrong with me for these things to pop in my head--Jekyll and Hyde kinds of fears.  They're not intentional.  I wouldn't act on them or say them, when relevant.  They just are.  And other people get them, too, those unbidden, uncharacteristic thoughts that cross your mind.  Provided that you don't act on them, of course. 

Now, there is a subset of these that is a little bit different.  Sometimes, when I'm driving I think "I could just jerk the steering wheel and then I'd never have to worry about anything again."  I've heard this called "The Call of the Void."  Like the other kinds of intrusive thoughts, I don't plan on following through with it, but I always think about these a little bit longer.  These, I think, stem from a natural urge, the want to escape away from all of your problems. 

I am so very tired of having to deal with all of my Crohn's symptoms.  I'm tired of organizing my doctor's visits around my work schedule.  I'm tired of arguing with insurance companies.  I'm tired of needing to excuse myself from activities.  I'm tired of feeling lousy. 

OF COURSE escape is alluring.  I might linger on these kinds of thoughts more than I do other intrusive thoughts, but I let them slip by, too.  It's okay to have these kinds thoughts.  There's one big caveat to the Call of the Void though:  I know that if I start having these thoughts  too frequently or I start considering acting on it, that's the point to reach out for help. 

So that got me thinking on to a different question:  what are healthy escapes and what are unhealthy escapes?  Anything permanently damaging falls into unhealthy, but anything that enables you to escape "too long" also seems to fall toward unhealthy.  Even something as innocuous as videogames has a stigma attached to it, if the person plays "too much."  Where are the lines?  Is it ultimately about finding balance, working on enough escape to see all of those problems from enough distance to think through a solution more effectively.  And are those lines different for everyone?  That doesn't mean, though, that people won't try to enforce their boundary expectations on you, just like when people subtly try to enforce their own idea of how you should manage your health or how and how long you should grieve.  A little food for thought for your day.

Temporary escape is okay; it's okay to want a break and to take a short, healthy break.  
I can't tell you how to deal with all of your problems when you've hit that point of too much.  I can only tell you what works for me:  I find comfort in getting back to a routine, in exercise, in writing, which provide a certain kind of comfort and processing yet not always that particular sense of relief that I crave.  I may never get the full rest that I want, but by learning the best coping mechanisms for me, I can take some of the weight away and make it easier to carry.  But I do want to stress to you that you are not alone.  When you need to find some kind of escape, find what is healthy for you and what your needs are, not what anyone else thinks they should be. 

And when your brain plugs in the Ducktail's theme song in the middle of your important meeting or comes up with something entirely out of character, know that you're not alone there either.  

An Update, Regarding Surgery and Thoughts around It

I want to make an update, but I've been having some difficulty finding a good way to jump into it.  So, I'll start with the cut-and-dry facts. 

• We went to Mayos last week and made it back safely.
• They placed two Seton drains.
• Proctectomy has been scheduled for November 8th, with tests and consultations on the 6th and 7th. 

Now, then, what the hell does that mean?

For the first part, that's the easy one.  It was good to spend some time with my brother and my father.  We had a fun trip to the Mall of America and sushi for supper that night.  Mike actually lost his glasses on the first loop of the SpongeBob rollercoaster, which meant for the rest of the ride I was laughing and shouting "did that just happen?"  Once the coaster stopped, we told Dad what happened, resulting in a deadpan "you're kidding."  However, when we stood up, his glasses were wedged between the seat in front of us and the car itself.  The situation, then, immediately switched from incredulous frustration to incredulous relief, which also made it hilarious.  We got Caribou Coffee a few times, read to each other, and had some good catch-up time. 

In the appointments themselves, we got exactly what we asked for--we got options.  It happens that our best option is surgery.  Turns out that the fistulas bursting open was a little more dangerous than I had realized, which led to our decision to put in the Seton drains, mostly as a stop-gap. 

Anyone asking what a Seton drain is?  This was a new one on me, too.  The only ones I've run into that have known what it is are somewhere in the medical field, even in making an appointment at my doctor's office the front desk staff had to ask what it was and they deal with a lot of my kind of ridiculous regularly.  So here's the explanation:  right now, these fistulas that I have created their own path from the rectum to exit out somewhere else, eventually to open air to drain...stuff out.  A Seton drain threads a suture/string/something through the passageway until it loops back out, at which point that the ends are tied together.  Now recall that both of these "starter holes" are in the rectum.  It's kind of like a weird piercing that I poop right next to.

It is just as annoying as it sounds, maybe more so.  I need to keep it as clean as possible, and it is suggested that I take a bath pretty much every time I have a BM (bowel movement), and I don't exactly carry a tub around with me or have access to one at work.  Now let's add a bit more to that:  part of the drain, that loop of suture string, is literally flaying open my skin.  With the way things are going, I think it is wholly possible that this loop could eventually work its way out.  Yes, I have talked to a couple of parties about this, and have been told to keep it as clean as I could, let them know if it "gets worse."  See, I had thought that flaying open was pretty bad, but at least it's been documented in three different places now.  

That brings me now to the third point, the surgery itself.  If nothing else, I will not have to deal with these drains any longer once I have had that surgery.  Also, we knew this surgery was inevitable and now we no longer have to worry on when it's going to interrupt our lives because we've chosen to do it on our terms rather than when my body forces us to.  My doctors were emphatic that whenever I couldn't stand the symptoms anymore was when we could pull the trigger--I have hit my limit.    

Sometimes, that is it.  I feel confident that we are making the right decision.  I cannot dwell on the what-ifs because they exist in another reality that I will never know.  This is the decision I am making, so whether it was the right one at the right time, we are doing the best we can with what we know now.  I have done everything I can to avoid this for as long as possible.  It's time to let it go.  There is time to get to work preparing all that I can in the meanwhile, lining up help and logistics.  There is peace in this decision.  There is calm.  

And then in other moments, my tears choke out the wordless wail into a silent contortion of  features.  There is too much emotion to process in a moment.  I can't even figure out how to let it out, it feels so impossible.  There is a roar in my ears and tightness in my forehead.  I forget how to breathe.  I am robbed of words, voice.  And for a short time, I am lost.  

When I can swallow again, the feeling recedes to a weight behind nose, at the top of my throat.  Crying doesn't always seem to make it feel any smaller, but some days it does.  I can summon it in an instant if I wanted to, but I am not constantly overwhelmed by it--only sometimes.  I've learned to let that grief wave roll through me, to bodysurf rather than fight the current.

I'm spending pockets of time in both, oscillating to helpful coping techniques and spending time in the trauma vortex in turn, titrating the emotions.  There's a lot to work through, yet, and about 84 days, as of writing this, to hopefully make a dent--that's a lot and little time all at once.  And I have no illusions that this will be the only blog about this before or afterwards.  This is a continuous cycle of reacceptance, in that I accept that I have this disease but must constantly reaccept what accommodations I need to make.

But in the meanwhile, I just found out there's such a thing called "Baby Animals in the Wild" is on Netflix. 

Mayos and Surgery

I had two discussions on Tuesday afternoon and am still sifting through all of information.  One of those components was how potentially dangerous these fistulas can be, particularly the violent reopening possibly getting into the bloodstream involving then some systemic infection.  Unsurprisingly, the surgeon suggested surgery.  The doctor on the medical side of things has me doubling up on my main medication but also brought up surgery.  Both doctors put the ball for this firmly in my court, noting that if my symptoms are tolerable, there's no rush.  However, both doctors agree that this surgery in an inevitability, though neither can really say when. 

But I am so very tired of this hanging over my head.  Andy and I are of the opinion that if it's coming, why not get it over with?  We've not scheduled anything yet, but I think that within a year or a year and a half, unless the new treatment plan takes things on a significant turn. 

That's heavy. 

Particularly now as I'm recovering from an outpatient procedure and reminded once again of what that part of the process really means.  I remember what it's like to live with an ostomy.  I had blocked out what it was like to go back into surgery. 

For Mayos, I've got it pretty well down.  I make it a point to eat something the night before that sounds really good, aware that I won't have anything else until some crackers or pudding after the procedure itself.  And I like to go see a movie the night before, too.  This time, we watched The Count of Monte Cristo in the hotel room together.  After that, I shower with Hibiclens soap, that I refer to as "gas station soap" because it smells like cheap soap you'd use in a gas station bathroom.  This red goop is slathered on, left for two minutes as I avoid the warmth of the stream from the showerhead, then rinse.  The next morning, I sleep as long as I can, so I won't notice that I'm hungry for as long as possible.  One more shower with the gas station soap, in order to reduce the possibility of post-surgical infection. 

We then head down the shuttle to take us to the right Mayo building, usually Eisenberg (stemming several choruses of "We're taking Larissa to Eisenberg!" ala this tune).  I walk up to the front desk and find out what floor and station I need to head toward, walking around the corner to the left to the elevators.  We follow the directions on the wall and make our way to the nurse's station, me and whatever entourage I have with me. 

The nurse I greet sees that I'm sent to my assigned room, pulling out a gown and some grippy socks (so as not to slip on the floor).  I strip down everything and put the on the gown, clothes placed in the locker or in a plastic bag and then in the locker.  Trying not to flash anyone, I settle on the bed awkwardly.  I cross my legs unconsciously; even covered I feel vulnerable.  Warm blankets or warm air help make this at least a little better. 

My nurse for the day introduces herself and, after checking my name and birthday, goes through another few questions and takes vitals.  I am asked what procedure I am expecting today, to ensure that everyone is on the same page.  Another person comes in to start my IV.  Then, we wait until I'm called down to the next stage, the Pre-op.  I get on a different gurney, the warmed blanket tucked under my feet.  The warmth seems to evaporate off of the blanket almost immediately as the bed is pushed down the hallway, generating a breeze with that cool, sterile air.  My arms stay at my sides, careful not to bump the IV site, and my legs are still crossed at the ankles.  I greet and nod to people as we zip by until we eventually land in my own small room.  I have thoroughly lost my bearings on where we are. 

Another nurse comes in, introduces herself or himself, and confirms with me that I am who I'm supposed to be and I know what we're planning on doing today.  If they brought the antibiotic that they'll be giving me during surgery or even if they don't have it, I ask what it is to make sure that it is not the one that I explicitly asked them not to use.  Then, I stand my ground and explain that they will not be using that particular antibiotic and they have to contact the pharmacy to get it switched.  They cannot give me an explanation that I have not heard by this point, and I'm pretty sure they mention Gram Negative bacteria because they don't think I know what it means. 

This time, I had a view of one of the doors and did a lot of people watching while I waited for a little more than an hour doing so.  At some point in there, the anesthesiologist comes in and makes introductions.  I ask what cocktail they will be using today, because I make it a point to know.  They ask a lot of other questions and check my airway, particularly if I'm going to be intubated.  Time goes both fast and slow at the same time.  I am given a fashionable hat to stuff my hair into to keep it out of the way. 

Why are they always blue?

Eventually, my gurney then gets wheeled into the OR proper.  It's always cold in the OR, particularly when your warmed blanket is just a thin blanket by now.  I am asked to move to the operating table.  My IV port is then hooked up to the appropriate solution, and I am asked again what we are doing today, confirming my name and birthday one more time.  The electrodes for the EKG are attached to my chest.  The other persons in the room introduce themselves.  I try to keep from shivering.  I allow them to take my glasses and feel more naked than before.  I am secured to the table.  The large, circular lights above are all the I can see when I look up, apart from the face that hovers over me from time to time to ask another question or check on me in a different capacity. 

There are two or three of these above my head.

I am given a mask with 100% oxygen, and the first wave of pain killers hit, making me feel heavy, heavy, heavy as the world begins to slip away. 

I wake up somewhere else, still feeling extraordinarily heavy.  I am reminded to keep taking deep breaths, because I am forgetting to breathe.  I want very much to go back to sleep.  My throat hurts from the tube that they placed down it, likely to hurt for the next couple of days.  They give me a spoonful or two of ice chips as I'm waking up to help.  Fighting, fighting to stay awake when breathing is oppressive.  I give a test wiggle to see what hurts.  Finally, the heavy feeling starts getting better (though parts of it will linger over the next couple days), but I'm still antsy and uncomfortable. 

My bed is moved back up to my original room.  My entourage is coming if they're not already there.  At some point, either I or my family has been given some basics of how things went.  I have to go for a walk, eat something, void, and meet a couple of additional criteria before I am allowed to leave.  If this is a longer stay, a more complex surgery than something outpatient, then we settle into the room, under some of the same criteria with a few extra bells and whistles, like pain management.  Occupational therapy, physical therapy, wound ostomy care, whathaveyou will also stop by as necessary over subsequent days.  If it is overnight or more, there will be a parade of phlebotomists, the main residents under my surgeon, and then a posse of people learning under my surgeon (really, possibly twelve different people) to come in and discuss my case, all by the time I have breakfast decided and delivered.  Well, the last part there is more Mayo specific, but you get the idea.  Over the next few days, anywhere there was an adhesive on my body gets this shadow of residue, showing exactly where the piece of tape, electrode sticker, or whatever else was placed. 

This go around was a minor procedure, taking a closer look at the angry areas and feeding through some seton drains.  So, the two fistulas that have an exit, imagine some fishing line that goes from where the hole starts in the rectum and all the way through the fistula, exiting out and tied to itself.  The seton drains keep it from closing, meaning that it continues to drain.  So far, they're damned uncomfortable and bleeding a lot, because they're fresh.  This procedure, though, takes out some of the immediate danger, that it cannot explode if it cannot build up pressure.  It gives us time.  Meanwhile, I'm awfully scared of what the first poop is going to be like with these in. 

No matter how many times I've done this, I'll still admit that going into surgery makes me anxious--there was only once that I can think of where a different emotion predominated, that being relief when we were going in for the emergency surgery after my bowel resection had failed.  And I'm glad that I do still have that healthy dose of anxiety--I don't want this to ever feel normal.  Familiar is bad enough.  Once I wake up from this surgery, life and self as I knew them will be done in a few senses.  I'm looking forward to being past the anxiety of deciding, but not the recovery time, the adjustment time.  I am keeping my eyes on the goal and in the preparation details at the moment, like focusing on the marriage and not the wedding details.

That means that emotionally right now, I don't really know where I'm at.  I'm making plans, weighing my options, waiting on some additional calls.  I don't know whether it's better to ignore everything or sit in a pity puddle for a while.  That's going to take some different sifting. 

In the meanwhile, though, thank you all for your continued thoughts and prayers.  They have meant the world to Andy and me.  Thank you, too, especially to those who reached out to Andy this week.  If you missed out this time, unfortunately, there will be another place to be present, whenever we do dive into that surgery. 

More as it develops.