Will's Ileostomy

One man's story of living without a butt for a few months

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Done

I had my third and final surgery last Wednesday, barely a week after surgery #2.  Some complications (a kink in my small intestine) meant that they couldn't afford wait the usual three-ish months between surgeries.  So, I'm done.

It will take about a year to eighteen months for the J-pouch to mature, at which point I'll be having ~six bowel movements a day.  For now, it's closer to twelve, and will be for the foreseeable future.  I can't sleep.  I'm so tired all the time. .

Had a bit of a scare yesterday.  I ended up back in the ER when the toilet filled up with blood.  Turned out to be ok, it stopped on its own and they sent me home.  Probably a ruptured/irritated little blood vessel, not a break in my sutures.  Scared me half to death, though.

I had a bowel obstruction in the hospital.  I have an astoundingly high pain tolerance (ten years of chronic spinal pain will do that), but this one hurt, a lot.  That kind of hurt where you can't draw enough breath to scream, no matter how hard you try.  Twenty milligrams of oxycodone and a half milligram of dilaudid took the edge off and knocked me out, eventually.  Puked my guts out the next morning.

I'm so done.

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This isn’t really much to do with ileostomies but

I want to show off this year’s Halloween costumes, for a “haunted speakeasy” party.  We dressed up as Deep One/human hybrids out of the town of Innsmouth, Massachusetts, from the Cthulhu Mythos.  Gotta say, emptying an ostomy bag with those nails -- sharpened to points -- was an adventure.

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I was at the colorectal surgeon’s office for a followup appointment about my next abdominal surgery and the reading material was hilariously appropriate.

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Pain

I’ve found that there are three subtypes of pain:

Subtype 1:  “You probably shouldn’t do that again” pain.  That’s when you forget to use a potholder, or stick a bobby pin in an electrical outlet (I have no memory of the event, but eyewitness say that toddler Will flew halfway across the room, and that it was “hilarious once we were sure you didn’t die”).  More recently, it’s “of course I can go grocery shopping two weeks after abdominal surgery” pain.  Did I learn my lesson, stopping to catch my breath, sitting on the curb?  Subsequent shopping journeys suggest I did not.  But a less-stubborn individual could have had a real learning experience, there.

(There’s a specialized variant of subtype 1 called “ow, but let’s do that again anyway” pain.  You usually get that from vigorous exercise, when your lungs burn and your legs are all wobbly.  Also, it’s when you eat something too spicy but it’s so delicious that you try to convince yourself that the running nose and the tears and the look in Haley’s rolling eyes that says “you should have ordered the mild version, idiot” are all fine.)

Subtype 2:  “Will this go away already” pain.  That’s when you bruise your shin on the coffee table or have a bad reaction to a flu shot, when the pain lingers all day.  For me, that’s been the last ten years, after a spinal fusion surgery that went horribly right.  My back is fixed (hooray) and the operation was a thorough success, but I’ve been popping Advil on the regular ever since.  Titanium is very biocompatible, for a metal, but fifteen vertebrae bound together with rods and screws are going to hurt no matter how friendly the implants are to your immune system.

Subtype 3:  Healing pain.  That’s when you yank off the last few millimeters of a scab or scrub out a cut with hydrogen peroxide.  It’s when the nurse is having a bit of an adventure trying to find a vein in your dehydrated arm, but you know the bag of saline on the other end of the needle is going to do wonders for your splitting headache and dizziness.  It’s the itch of incisions healing.  It’s when you wince at a twinge in your gut and realize that at some point, you’ve stopped firing back with “I can get through this,” because now it’s “I will get through this.”  It’s I’ve-done-this-before-and-it-didn’t-stop-me pain.  It’s this wonderful pain that let’s you know that you’re not just fighting, you’re winning.

It’s the pain that takes everything — the leaking ostomy bag, the weakness, the dread of two more surgeries, the empty place where “innocence” used to be, the overwhelming bouts of subtypes 1 and 2, the fear, and the quiet, private tears — and makes it all worth it.

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Exhaustion and Coffee

I expected the pain after surgery, and I know how to deal with it (the dark and mysterious past I’ve alluded to includes a lot of issues stemming from that spinal fusion).  But it turns out that in trying to repair what it thinks is some horrifying traumatic wound, your body doesn’t have a ton of resources to spare for things like “exercise” or “standing on two feet” or, most importantly, “getting to the coffee shop.”

But come hell or high water, there is nothing that will keep me from my mocha latte.   Nothing.

I have very strict “no lifting more than five pounds” instructions for another week or so, which presented a problem:  my backpack, laptop, laptop charger, and emergency ostomy-changing kit weigh more than that.  I’m doing my best to abide by that rule for fear of re-opening an incision or earning the wrath of my slightly intimidating colorectal surgeon from Russia, but it turns out that I needn’t have stressed out about accidentally breaking it — for the first few weeks, it was literally impossible for me to lift that much without keeling over.

The thought of going to the coffee shop without my laptop just doesn’t make sense.  The mental image doesn’t compute.  It’s an impossibility, a evil mirror-universe version of reality where everything is terrible all the time.  So I went ahead and decided to be a fashion trendsetter and bring rolling backpacks into style.  Voila:

So the first obstacle — weight limits — had been conquered.  Good!  But the fact remained that simply walking the distance to my favorite coffee shop required two breaks to catch my breath and left me exhausted.  I compensated by going to my second-favorite, much closer coffee shop, which has been working okay.  I’ve made it to my favorite shop once so far, and I’m determined to get there this afternoon.  They have the best damn cappuccino in town, and more importantly, no wifi to distract me from getting some work done.  A Cambridge coffee shop without wifi is part of the of evil mirror-universe reality that I am totally chill with.

My third-favorite coffee shop, by the way, is even closer than those two, but I can’t eat their sandwiches anymore without risking a blockage behind my stoma.

How’s that for a mental image?

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Fashionista

An ileostomy represents many things.  Hope for my future, where I live without ulcerative colitis.  Grief for my old body, and longing for a time when I was whole.  A constant reminder of our individual fragility, tempered by awe at the marvels of modern medicine.  But most importantly, it represents a new opportunity to accessorize!  And when I say “accessories,” what’s the first thing you think of?

That’s right!  Home-made, artisanal crafts from Etsy shops!

I’m a bit of a compulsive shopper, so I’m building up a collection faster than I really need to.  The jellyfish bag is from Stomy Bag Covers, and the rest are from The Undercover Company, and they’re all super adorable.  The particular bag system that I use is transparent, so a cover is a must-have for the sake of not grossing everybody else out.  And also they’re pretty.

I had been keeping them in a drawer, but I had a swath of fishing net lying around (don’t ask) so I decided to Pinterest the shit out of these guys.  Look at them!  Isn’t that cute?!

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Would it be innaccurate to say that you "had your butt rerouted" if I'm having a conversation at the pub about carrots?

That sounds pretty accurate.  They’re doing road work on my butt, and right now there’s this annoying detour until they’ve finished re-paving but of course it’s going to take like half a year because I’m in Boston and in this town we have a deeply-ingrained cultural phobia of efficient construction projects.

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My medical alert tag arrived!  It’s pretty important for doctors to know that my internals are not exactly factory-standard if they have to go digging around in there and I can’t communicate.  A less dire concern is that getting buckled tightly to an ambulance stretcher with an ostomy bag in the wrong spot could end up making a bit of a mess.  I whipped together a quick paracord bracelet, as I wait patiently for @armoreddragon​ to have enough free time that I won’t feel bad about commissioning a proper chainmail one.

Best practice dictates putting a couple of ICE (In Case of Emergency) phone numbers on my tag,  Using MOM and DAD instead of ICE isn’t exactly standard, but they convey more information in the same space and I bet the EMT scraping me off the sidewalk would get a kick out of it.

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The large intestine is responsible for absorbing the vast majority of the water that you eat and drink.  My small intestine is trying to pick up the slack but small intestines really suck at taking up water, so I need to drink a lot of fluids to compensate.  Upwards of four liters a day.

This is the result.  You are looking at 825 milliliters of pee.  I produced this amount of pee in one sitting, back in the hospital when they were having me measure everything that went into and out of my body.  825 milliliters is the size of a fifth of vodka, plus two more shots.  That’s most of a quart of milk, after you’ve poured yourself enough to take care of a few Oreos.  That’s about 1.4 regulation softballs filled with pee.

825 milliliters of pee weighs just over 1.8 pounds.  That’s the weight of two guinea pigs.  That’s the weight of two reasonable potatoes.  If you were to take a one-month-old german shepherd puppy and put it on the moon (please don’t do this), it would weigh less than my pee.

That is a lot of pee.

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This morning I woke up and my ostomy bag was inflated like the world’s most terrifying balloon.  I can’t think of a punchline for this post but trust me, it was hilarious.

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Nausea

I need to be more careful about nausea.

For one, if I eat (for example) too many of Satan’s orange daggers — known to many by the name “raw carrots” — I could get an obstruction behind my stoma, which could cause nausea, vomiting, and a nice, expensive ambulance ride (or maybe ruin some poor Lyft driver’s day instead).

For another, I tried to tell the saga of my ostomy journey to a couple of friends the other day.  One had to leave the room and the other turned a little green, so I stopped with that and started talking about kittens instead.  Turns out while I’ve gotten used to serious-medical-emergency talk, some people are a little squeamish about the subjects of lots and lots of needles and of blood coming from new, exciting orifices.

In a similar vein, being very ill in a hospital for three weeks is pretty dark and depressing.  In order to not go completely insane, my sense of humor descended to match.  Example: a friend sent me a cheerful Snapchat of a pretty, ivy-covered building with the caption, “This place is so ivy!”

So I sent back a picture of my arm, festooned with way too many needles, and captioned it with a hilarious joke.

“I’m so IV too!”

I apologized later.

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Nothing

I had my post-op ileostomy checkup last week, ten days after they wheeled me into the operating room.  The WOC nurse (wound/ostomy/continence) misread my chart, at first — she assumed that the recorded date I was admitted to the hospital a full month previous was the day I’d had the surgery.  “Oh, sorry,” she said, “you’re just so active for somebody a week out of a hospital bed.”

I looked down at myself — I was wearing a variant of my usual outfit, a Miskatonic University Historical Society shirt and a pair of black jeans held up with a Pokemon-themed belt.  Not exactly workout clothing.

“What do you mean?”  I asked.  “I’m walking at half a mile per hour and had to take two breaks to catch my breath between here and the lobby.”

“That’s nothing.”  She beamed at me, poking my stoma with a Q-tip.  “And you’re healing quite nicely.”

I reflected on that statement as she busied herself with checking my sutures (I’d actually popped one, probably carrying groceries that I shouldn’t have.  I’m not supposed to lift more than five pounds for the next couple of weeks, but how was I supposed to cook pizza without a butternut squash?).  It retrospect, she was right.  This was excellent.  Compared to last time.

Pause for dramatic effect, gaze into the distance.  The audience is on edge of their seats.

The thing is, this wasn’t the first time my body had decided to fuck itself over in a new, creative way. Ten years ago, I had a fifteen-vertebrae spinal fusion surgery with thirty titanium screws and two rods to correct a severe kind of scoliosis called kyphosis, and it sucked.   My colectomy was done laparoscopically, where they made four or five very small incisions in my belly and did everything with cameras on the end of probes.  Recovery from that sort of procedure is rapid and relatively easy.  The fusion was not done laparoscopically.  I have a scar that runs down from the nape of my neck to my tailbone.  Recovery from that was sheer hell.  Here’s what I look like now:

I was planning on going into more detail, but bad things happen if I start to talk about it for too long.  So I’m going to leave to your imagination the pain and blood and haze of dilaudid and oxycodone, the weakness and trembling and confusion, the terror and darkness and the echoing screams of the pediatric intensive care unit.  I promise you that whatever you’re thinking, it was worse.

So, a laparoscopic colectomy?  A few tiny holes poked in my belly, a bottle of tylenol, and butternut squash pizza with burrata and honeycrisp apples?

That’s nothing.

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Superheroes

Ileosto-Man.  His only weakness is raw carrots and he has the power of... ew...

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Vocabulary

Bowel:

Everything in your digestive tract after your stomach.  Divided into the small intestine, also called the ileum, and the large intestine, also called the colon.  The small intestine is responsible for absorbing nutrients, the large intestine is in charge of absorbing water and storing things until you’re ready to poop.

Ileostomy:

Wherein your small intestine pokes out through your belly and empties into a pouch.  A person with an ileostomy is called an ileostomate, which is fun to say with an Australian accent.  That’s me for a few months.

Colostomy:

Wherein your large intestine pokes out through your belly and empties into a pouch.  A person with a colostomy is called a colostomate, which is also fun to say with an Australian accent.  I don’t have a large intestine anymore, so that’s not what I have.

Raw carrots:

A manifestation of pure evil.  Believed by most medical professionals to be literal incarnations of Satan on Earth, they will seriously fuck up an ileostomy and send you to the ER.  More on my diet in a later post.

Total colectomy:

A surgical procedure where they remove your entire large intestine.  That’s me!

Stoma:

The bit of intestine that sticks out of your body.  It’s red and squishy, and if it ever stops being red and squishy, get to a hospital right the frick now.  Also it has no sensory nerve endings, so once the stitches heal after surgery it isn’t painful.  This is my stoma, in a new, clean ileostomy bag.

J-Pouch:

A couple of feet of small intestine sewn together into a pouch inside your body.  It acts like a cobbled-together, kind of janky rectum, but it gets the job done.  With a J-Pouch, you can control when you poop, but you’re still going somewhere between five and eight times a day.  I’ll go into more detail about J-pouches and my upcoming surgeries to make one in a later post.

Tylenol:

The religion I converted to after my surgery.

IBD:

Inflammatory Bowel Disease.  The two most well-known varieties of IBD are ulcerative colitis (that was me!) and Crohn’s disease.  IBD is an autoimmune disease, where the body’s own immune system starts to attack healthy tissue.  Has nothing to do with IBS (irritable bowel syndrome), other than the fact that they both are in your gastrointestinal tract.  IBD comes in flares that last anywhere from days to months, with kind-of normal bowel function between flares.  Typical treatment is with corticosteroids to halt a flare, followed by immunosuppressants to keep you in remission.

Ulcerative colitis:

A disease characterized by inflammation and ulceration of the large intestine.  The most obvious symptom is frequent, bloody diarrhea.  It often happens in discreet segments of the large intestine, but I had what’s called “pancolitis,” where the entire thing is involved.  A total colectomy is the only cure.

Crohn’s disease:

Similar in a lot of ways to ulcerative colitis, but it can happen anywhere in your GI tract, from your mouth down to the anus.  Surgical removal of all or bits of various parts of the intestine can help, but until somebody invents an entire robotic digestive system, there won’t be a cure like there is for UC.

Butt:

Tuchis.

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In some countries they have specialized stoma-cleaning sinks in public restrooms. Do you wish the US had nice things like that?

Dang, that’s awesome.  To be fair, the US does have some public accommodations for medical issues, like wheelchair ramps and shame.

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Have you ever seen the inside of your own butt?

Seeing the inside of your own butt is quite an experience.  For a colonoscopy (where they stick a camera all up in there and snake it through the entire large intestine), almost everybody opts for twilight anesthesia.  I’m going to avoid the cheap vampire joke here — twilight anesthesia is just when they give you a mild sedative that keeps you mostly awake and responsive, but very dopey and sleepy.  Kind of like Kristen Stewart’s acting in Snow White and the Huntsman (zing!).  It also induces amnesia, so you forget the whole experience (and about half of the day afterwards).  Would have come in handy for watching that Robert Pattinson movie, Remember Me (zing!).

A flexible sigmoidoscopy (like a colonoscopy, but they just go in a foot or so), however, can be done awake without too much trouble, and having to fast for eight hours before they sedate you is actually worse than the procedure.  So for my second flex sig, I went in awake and aware, and got to watch the whole thing on the same monitor as the doctor in glorious 360p resolution.

The inside of my butt was not in good shape.  Honestly, the viewing experience was a worse sight than that Taylor Lautner movie, Abduction (zing!).  It was pretty much just ulcers on top of ulcers that had eaten through pretty much the entire lining of my large intestine.  “There’s not much left,” remarked Doctor S.

Anyway, if you want to see the INCREDIBLY GROSS inside of my butt, here you go.  Warning: It’s pretty disgusting.  Worse than The Twilight Saga: Breaking Dawn Part 1.

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Waking up from surgery, I couldn’t help but notice that everybody looked all somber and stuff.  So I decided to lighten the mood a bit.

“Ladies, gentlemen, thank you for joining me.  You’ve seen what he’s capable of.  What he’s willing to do,” I said, gesturing at my hospital-bedridden self.  “So I have one very simple question for you.  How do we kill Superman?”