Unruly

Picture it.  My place.  February 17th, 7:00pm.  Take out Mellow Mushroom create your own salad: spinach, artichoke hearts, sun-dried tomatoes, and broccoli.  So begins the descent into my first bout of food poisoning.  Stomach distended, non-stop vomiting, bladder shut down.  By something like 2:00am I’m on my way—via ambulance—to Piedmont Hospital.  Emergency room.  Magical anti-nausea drug administered intravenously and I’m feeling a little better.  Instantly.  It’s that good.

My dad is with me.  My mother is scheduled to return home from working at my Grandma’s house the following day, or by that point, the same day.  I give my history to countless medical personnel about a gazillion times.  Dad is helpful but sleepy and antsy.  High energy and exhausting is his normal state.  This is some exhausted version of that.  I love my dad, I really do, but when your body is in crisis, a calming force is preferred.

After getting settled with the anti-nausea med, IV fluids, and registration, we waited on X-ray.  We waited, and waited, and waited.  The computers were down.  Service was slow.  X-ray came.  Paralysis and X-ray suck.  I won’t sugarcoat it for y’all.  They suck even more when your stomach is far larger than usual, you have IVs and some damn telemetry monitor I still don’t know why I needed, and so on.  Enter Dad’s talents.  He helps lift me with the X-ray dude, who, and I say this as someone who does and does not feel 32, was younger than me, a young dude.  Not very talkative either, which is always rather awkward because my dad wouldn’t stop talking if you shot him with a tranquilizer gun.  But it was the night shift.  You can’t expect those guys to be chatterboxes.  (And, truthfully, I’d rather not be gabbing at 4:30 in the morning with almost anyone unless I’m bored out of my gourd.)

Now it’s time for a CT scan, the CAT scan.  Whatever.  I watch a lot of Grey’s Anatomy and Private Practice.  I call ‘em CTs.  So, when you have an unruly gut like I do, you learn the tricks of the trade.  You learn to refuse to do certain things.  Even when you were, at least subliminally, taught to be a good Southern girl and do what you’re told.  Even when you are not the most assertive person in the world.  Even when you’d rather listen to death metal music than have someone give you a disappointed and disapproving look.  Well, maybe not death metal – I listen to Streisand, for crying out loud, but you get my drift.  Anyway, when you have an unruly gut and then your unruly gut is the reason for the CT, the powers that be – radiologists and ER docs in this case, will want you to drink some damned chalky mess so they can get this supposedly fantastic picture of your unruly gut.  (I did mention I have an unruly gut, didn’t I?  I have gastroparesis, which basically means that my gut is paralyzed, so I do not exaggerate when I say this.  It takes me longer than you could imagine to digest food, not to mention a slew of other mess that comes along with this particular diagnosis.  More on this all soon, I promise.)  So drinking this chalky crud is a nice idea and all, but when your gut is unruly on even your best day, you sure as hell don’t need to be drinking this mess when your gut’s at war with the rest of you.  So I refused.  Got the disapproving look and the explanation of why I should drink it.  We went back and forth and I gave my counterpoint.  Dad swooped in finally and told radiology man to check with the doctor.  Doctor agreed with me.  Thank you.  That’s all I really wanted.  They were going to inject me with some dye anyway that would show them enough, or as much as they were going to reliably see given that if I had actually attempted to drink the chalky mess I would have been in far worse shape than I was before the chalky crud.  This is not opinion or conjecture.  This is fact.  A gastroenterologist stated as much a few hours later without me even broaching the topic.

Now, I am fully aware that many people do not possess as much knowledge as I do about my body.  I’m also aware that some people may think they know things that are actually incorrect.  I just wish that the assumption landed in my favor and not the reverse.  But I’ve watched enough episodes of House, M.D. to know that patients lie and/or are misinformed.  (But, but, but I’m smarter than they are! I actually am, ya know.)

Not long after the CT, the ER doc came in and broke the news to me…which wasn’t news to me but rather a foregone conclusion I’d recognized before I’d even left for the hospital (which is why I delayed the trip as long as possible, an ironic new development in my veteran crip chick identity).  I’d need to be admitted and would need an NG tube, a nasogastric tube, a lovely, giant plastic tube that a nurse would soon shove down my nose and into my stomach, to empty out all the mess from my gut.  I assured her I wasn’t surprised and knew the drill, although it had been about 17 years since I’d been party to such excitement.  She said I shouldn’t have to be familiar with such things at my age.  Illness knows nothing of age.

I exaggerate in life sometimes.  We all do.  But I do not exaggerate at all when I state my hatred of NG tubes.  Before my evil gut issues were diagnosed, I was in and out of hospitals for weeks at a time with NG tubes a regular occurrence.  They are horrible.  Inserting them is painful enough, but that’s only the beginning.  It is nearly impossible to speak or swallow while there is a giant plastic tube down your nose, going through your throat, and into your gut.  I don’t chatter as much as my father, but I can hold my own in a conversation.  The NG tube will shut me up instantly.

They didn’t have small sized tubes, so I got the big momma.  I’m a tiny person, so it was a struggle to shove that sucker in, but we had success.  For the next 24 hours or so, I moaned and groaned but barely spoke.  As luck would have it, all of the doctors decided to come in after the tube was placed and while my dad took a break to go wander around outside.  I really don’t cry much in life, not in many years have I been a sobbing mess of goo.  But that day, when trying to give my history again to a hospital doc, a general surgeon, and the on-call gastroenterologist in the practice I’ve trusted since 1995, I wanted to cry.  (You can imagine crying is not the best option with a giant tube shoved down your nose though.)  Instead, I managed to speak intelligently about my situation, while gagging every so often.  I am immensely grateful for the understanding doctors who exercised such patience as I struggled to explain what was happening.

The docs informed me that I had two liters of fluid in my gut and the tube would help empty that.  I had a blockage that was slowing everything.  They hoped I wouldn’t need surgery but consulted a surgeon just in case.  They did more tests that day to see how much the blockage could be solved without surgery.  This meant more and more moving, all the while with that damn tube and my moaning and groaning.  But my calming force entered just in time.  Mom made it back to town.  Dad went home to sleep.  Fourteen hours after getting to the ER I was admitted to a room on the floor.

I’ve explained before that I had surgery 14 years ago that enlarged and re-routed my bladder such that I can catheterize independently when I am in my chair.  It’s amazing and has afforded me more freedom than I could have imagined otherwise.  But, in order to enlarge and re-route the bladder, the urologist used part of my intestine.  Long story short, my gut and bladder are inextricably linked.  This means that when the staff tested a urine sample, it showed a urinary tract infection (UTI).  Not surprising in the least.  The surprising part came when the doctors could not explain why I had this blockage.  They latched onto the UTI because it has a “cure.”   I’ve also explained before that after nearly 22 years of catheterizing, there will always be bacteria swimming around in my urine.  It’s a fact.  Enter the linked gut and bladder and there really will be some scary critters setting up shop in my urine sample, just to screw with the medical establishment.  You know those commercials for pharmaceuticals that tell you each and every side effect of whatever they’re trying to get you to buy while providing some sort of informed consent and simultaneously praying you’ll still want to medicate yourself?  They sometimes state that the benefits outweigh the risks associated with the drugs.  That’s kind of how major disability and/or illness work.  The bladder surgery solved some problems and it caused some problems, but the benefits outweighed the risks.  The trick is being informed and using whatever intelligence you have to manage your body as well as possible.  I eat healthy and drink more water than your average bear.  And I only treat urinary issues with antibiotics when absolutely necessary.  Antibiotics are wonderful, but a steady diet of them invites more problems than solutions.

So the docs focused on the UTI as the root cause and problem to solve.  Forget the spinach that was very likely contaminated and that revolted against me.  Forget that had they not taken a urine sample I would have had no symptoms of infection.  Forget that I will always have critters hanging out in my bladder.  They even brought in an infection disease doc.  I’d worked with him in 2007 when I had a freak bought with MRSA and sepsis, a scary story for another day.  He’s very intelligent, genuinely concerned, and he—along with all of the other doctors during that stay, treated me like an intelligent adult.  But he wasn’t looking at the whole picture, and I was too weak to do so.  It wasn’t until a couple of weeks later that I could put it all together and recognize that there was no cause for alarm.  Bottom line: I have gastroparesis that is managed pretty well with medication, strict adherence to a healthy diet, and a schedule.  However, such a difficult digestive issue means that any foreign invaders, like food poisoning, will cause significant distress and intervention in the form of at least an NG tube and hospitalization.

That’s my story and I’m stickin’ to it.  Smart people will tell you they learn something new every day.  Sometimes I learn a new version of the same lesson periodically.  I keep learning that I know more than I think I know and that I am the expert on one person—me.  It’s not always easy to sort out the pieces of the puzzle to make sense of our unruly bodies, but trusting ourselves is step one.  A couple of months after my hospitalization, I updated my fantastic urologist during my annual visit.  She supported my hypothesis and said she’d explain everything to the infectious disease doc.  If I’m ever in for food poisoning or some other nonsense again, she’s definitely on the consult list if my own expertise is questioned.

Those two liters of fluid in my gut manifested into what I called my demon baby, tree trunk thighs, and cankles.  Over the next couple of weeks after I was discharged from the hospital I lost that demon child, those tree trunk thighs, and cankles.  I really should have taken a picture; I’ll never have that much body weight naturally!  While I waited impatiently for the NG tube to be removed (about 24 hours or so), I dreamed of glasses of ice water, cucumbers, pitchers of water with raspberries floating in them (in the spirit of a hilarious episode of Grey’s Anatomy).   I returned home and the next morning I enjoyed a long, hot shower and washed my hair three times.  Three days in the hospital will wreak havoc on your vanity.  Actually, three minutes will do almost as much as three months will.

I haven’t been able to stomach a spinach salad or artichoke hearts in a salad yet.  I’ve eaten them cooked, so I’m getting there.  Artichoke hearts aren’t entirely necessary for nutrition, but spinach is super important.  Here’s hoping.

2 Comment(s)

  1. Thanks for sharing your strength with us:)

    Harold | Jun 14, 2012 | Reply

  2. NG tubes are exactly as awful as you describe. I had a bowel obstruction a couple of years ago which the doctor thought was due to bladder augmentation surgery.

    Shannon | Jan 20, 2013 | Reply

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