Stuff and Nonsense: ostomy

Showing posts with label ostomy. Show all posts
Showing posts with label ostomy. Show all posts


My Life As Shitty Slapstick

Wake up in the wee small hours of the morning, desperate to pee. Stumble out of bed to realize I also really need to empty my ostomy pouch, but whatever, I'm headed to the right place, anyway. Arrive at the toilet still only half awake. Decide it is more important to empty my pouch than my bladder. Empty pouch. Start to tidy the end with a bit of tissue. Sudden, godawful, gurgling sound from my stoma and watery, almost entirely colorless, poo shoots down my pouch, out the opening and, missing the toilet entirely, splashes all over the floor.

Horrified, I stare at the floor for what seems like hours, before hesitantly reaching for the hand towel hanging above the sink. I don't want to sacrifice the hand towel, but I don't know what else to do. So I lean forward.

And slip. Slip on my own watery poo. And fall. Whacking my chest against the corner of the sink as I go down. Down, down, onto my knees in the watery poo. Still desperate to pee.

Best. Night. Ever. At least I didn't brain myself, eh?

(And the bruises. Dear heaven, the black-purple-green-blue peacock bruises. At least no-one can see them when I'm clothed, because I don't know how to explain them in a way that doesn't involve poo!)


Ostomy: Travel Kit & Accidental Poopage

We were on vacation recently and so I thought it'd be a good time to talk a little about what it's like to travel as an ostomate. I don't know about you but, for me, traveling as an ostomate can be a bit nerve-racking. While I actually love flying, I am always slightly terrified I will develop some catastrophic pouch or faceplate failure on the plane and be stuck changing it in the tiny, tiny airplane toilet. During some delightful turbulence, no doubt.

Happily, I've flown many times since my surgery and this nightmare-scenario has yet to happen. It's probably just luck, but I like to pretend these actions help:

  1. Changing my appliance the morning of my flight so it's at maximum freshness and hold
  2. Eating very lightly before and during the flight so there's not a lot of gas or poop to pass
  3. Drinking lots of water (avoiding sticky poo pileup)

I do pack an "ostomy kit" in my carry-on when I travel, as well as an indentical kit in my checked luggage because I'd rather have too many medical supplies than not enough. I've never had a problem getting my kit through the checkpoints, although I've occasionally had to explain the contents. Given a choice, I go through the line for families and travelers with disabilities/medical conditions and I think that makes it a bit easier for everyone.

I do always get my pouch area patted down and my hands checked for explosives, but the screeners have been very fairly discreet and impersonal about it (unlike some of my rubbernecking fellow travelers) and it doesn't bother me. (I'm also quite sure that the smoothness of screening is helped by the fact I'm a completely innocuous-looking and pleasantly-mannered middle-aged white lady and, god help me, I will play that privilege hard to make my travel experience as comfortable and easy as possible).

So what's in my carry-on kit?

  • 4 faceplates
  • 4 pouches
  • 1 tube stomehesive
  • 4 skin cleansing wipes
  • 8 hand wipes
  • 1 pair of blunt-tipped nail scissors

You might think that's a lot of stuff, but it's enough to cover us both supposing we both fail twice during travel ... or our checked luggage is temporarily misplaced. Again, I'd rather too many medical supplies than not enough!

And it's all zipped up into an unattractive transparent plastic storage bag. I keep my work kit in a cute batik cosmetics bag, because it's much more unobtrusive when tucked under my arm and carried across the reference floor, but the travel stuff ... it's just easier to have "out in the open" for when I have to explain it to the screeners, etc.

Incidentally, the worst thing that ever happened to me while traveling happened on this most recent trip. I drank rather heavily one night (I think we can all guess which night that was) and, sunk in a deep sleep, did not waken as my bag reached capacity due to a combination of poop and gas. Indeed, I only woke up after I had rolled over in my sleep and the bag popped right off the faceplate, spreading poop all over me and the beautiful king-sized hotel room bed (but none on The Husband, lucky bastard).

Unsurprisingly, there was some screaming. Then I showered, stripped the bed, rolled everything up into a horrible bedding burrito, and pushed it into a corner. I called housekeeping and asked for a new set of linens, mostly remade the bed, and went back to sleep. In the morning, I left the housekeeper a twenty dollar bill on the burrito along with an extremely apologetic note. (And, of course, I also left a good tip when we checked out. My mother, grandmother, and aunts have worked as hotel chambermaids/housekeepers and I've heard all their horror stories, so I try to be a respectful guest ... but poop happens).


One Month Since I "Lost" My Rectum

It's been a month since my surgery and things are looking good. My most recent visiting nurse, who is some kind of "wound vac" whisperer and trains other nurses on the device, thought I might only need the vac for another week .. although, of course, she couldn't promise anything because it's all up to my body and my surgeon. (Happily, I see my surgeon next week).

I'm sure you probably have no idea what a wound vac is, so let me get all I-cribbed-this-from-the-internet-for-you:

A wound vac is, essentially, a wee vacuum pump that connects to my wounds using a tube and special sealed dressing that looks a lot like extra-sticky cling wrap and black foam insulation. The pump creates a vacuum (obviously) that draws fluid from the wounds, increasing blood flow to the wounds and stimulating healing. Fluids drawn out by the pump dump into a disposable canister snapped on to it. This canister is filled with an absorbent powder that solidify the fluids into a yucky-looking red paste. Happily, the pump and attached canister can be neatly hidden away in a nifty nylon tote so I can pretend that what's happening isn't actually happening.

Negative-pressure wound therapy (NPWT). Hooray for science!

Because I'm fancy, my wounds are also packed with a little Tritec Silver dressing -- it looks a bit like white canvas, but is infused with near-magical antimicrobial qualities and helps keep the tissue around the wounds dry while the wounds themselves stay moist (wet wounds heal better/faster).

I have a love-hate relationship with the wound vac. Yes, the vac speeds up healing (by as much as 40%, which is nothing to sneeze at when you're looking at wounds like mine) so that wounds close better and faster, greatly reducing my long-term discomfort and unhappiness. However:

  • Between the vac and my healing rump, there are no truly comfortable sleeping positions
  • Random coffee percolator-like noises quickly stopped being cute
  • Constant, vaguely unpleasant whiff of something from the vac is off-putting
  • Tubing almost as long as I am tall is a major tripping hazard
  • Sensitive skin is sensitive

But. Every time I have a nurse visit they are overwhelmingly positive about my wounds. "So beefy," they say. "So red," they say. "Look how shallow that's gotten since --day," they say. So, I try to be happy about the wound vac. It's doing its job and I just need to hang in there.

Most, but not all, of my medical supplies. I knew
the Muir Glen crate would come in handy again one day...


Bad Dreams; Or, Opiates Fuck Me Up

Pain control continues to be the name of the game, although I'm slowly reducing dosage -- it astonishes me how much I've improved in a week (she says, now certain she's jinxed herself) -- and mostly need it at night. Problem is, I'm pretty sure the opiates I've been prescribed are doing bad things to my subconscious brain (which is still reeling from the very real things that have happened in my pelvis) and I've had some rather terrifying ohmygodnevergonnasleepagain nightmares.

Which I'm going to share "the best" with you, so you can tell me how absurd they are in the clear light of day. Also, because it kind-of amuses me how my subconscious is a just big ol' plagiarist -- can't even come up with an original story of its own and cribs from all the novels, stories, and films I've consumed over the years:

  • I'm lying, cut open, on a cold metal table in a dimly lit room and a grey shrouded figure is knitting a garment out of my small intestine. I can hear a constant dripping in the background.

  • My laser rifle was undercharged and now I'm lying on the cold, metal, blood-stained deck of a troop carrier while an alien chews through my torso and something whimpers in the distance.

  • I'm a teen living with bunch of others at an institution that exists to, essentially, harvest our organs and other bits to extend the lives of wealthy adults. My best friend has a chronic nosebleed. We make no attempt to flee and I watch everyone around me slowly lose themselves. I am aware of having lost so much of myself, already, that I probably won't survive another harvest.

Mostly, though, I keep waking up drenched in sweat, heart hammering in my throat, consumed with a desperate sense of wrongness.


Getting Comfy; Or, Things I Bought To Make Recovery More Bearable

I have a very confused attitude toward shopping. Maybe it's remnants of Yankee thrift mixed with shreds of Catholic guilt, but I'm either agonizing over every purchase or throwing my hands in the air like I don't care and buying all the things. So I'll spend weeks researching refrigerators, trying to pick the "best" model, and then not buy the fridge because ours isn't actually dead yet, but then I'll throw around cash all willy-nilly on random spice blends from Penzeys.

However, it was clear there were going to be things I needed to buy in order to be comfortable at home post-op. As they weren't books -- if given full reign my spendthrift bookish ways could easily gut our savings -- I felt their purchase was "allowed." And, thank god, I didn't talk myself out of purchasing any of them, because they've turned out to be worth every penny:

  • Nightgowns -- Having a wound vac continuously attached to my pelvis means that anything with a waistband is pretty much an impossibility at the moment. While I'm currently only leaving the house for medical appointments -- at which point I pair one of my three pull-on sleeveless summer dresses with a cardigan and go -- I have a visiting nurse three times a week and face the increasing threat of actual social callers. So I bought three of these cap-sleeved cotton/poly blend nightgowns from Amazon and they are exactly as soft, comfortable, pretty, and modest as I'd hoped they'd be. I'm not particularly modest about my person, but I am all about clothes as a kind of armor and, when I slip one of these gowns on over my head and tie the belt of my robe, I feel properly girded against the world. It's ridiculous, but there it is.

  • Body pillow -- Unsurprisingly, it can be difficult to find a position in bed where both wound sites are comfy. While I looked at a lot of body pillows, I'm happy I bought the curvy Leachco Snoogle Mini Compact Side Sleeper as it's just the right size for a queen-size bed sleeping two adults. Also, as I'm quite short, I feel a larger Snoogle would just engulf me and be that much more difficult to manipulate. The curvy shape makes it easy to shape around my tender spots, giving them adequate support. Mostly, I'm sleeping with it shaped as a big "O" under my hips, but I expect it to be very handy with side-sleeping whenever I get rid of the vac. I'm slightly concerned the washable cover is going to be a bitch to get back on, but I'll cross that bridge when I come to it.

  • Egg crate -- Also, unsurprisingly, sitting is currently not The Most Fun Ever. This 4-inch thick Egg Crate Wheelchair Cushion fits my favorite armchair perfectly. It also works well on dining room chairs, car seats, and regular don't-be-too-comfortable-while-you-wait waiting room chairs. Without it, I would essentially be trapped in bed because there'd be no other comfortable place for me. (Yes, I could medicate myself into oblivion and then sit anywhere I darn well liked, but that's not really a tenable long-term solution). Now I can sit in my armchair and pretend I am an actual Well Person watching Netflix and writing blog posts.

(I fully expect the egg crate will transition into a fabulous cat bed when I no longer need it. The Snoogle, I am less certain of ... but I'm sure the cats will let me know).


Meanwhile, In My Pelvis

Surgery went long. Mind you, the first hour was pretty much just sedation and manipulation -- no slicing and dicing -- but I was still in the operating room for 5+ hours. Turns out the cosmetic surgeon wasn't needed to put in a mesh sling or whatever, because the available muscles were sound and usable. However, a gynecologic surgeon did scrub in to remove the Godzilla-sized uterine fibroids that were blocking access to the bits my colorectal surgeon needed to get at. Everyone knew I had fibroids, but no-one had realized how ridiculously big (we're talking grapefruit, people) they were and the original plan had been, I kid you not, to simply shove them out of the way.

I guess I should be like "Waaaay! Two procedures for the inconvenience of one!" but, instead, I felt weirdly violated when I finally came out from the gentle confusion that is that aftermath of anesthesia and understood what I'd probably already been told several times (I know medical professionals repeatedly popped into my room in ICU after the surgery, describing what they'd done, but they'd might as well have been a French-language sock puppet show for all I comprehended ... although, when asked at the time, I'd say I understood everything). It didn't help that I had ureteral stents and a foley catheter. I couldn't tell bladder discomfort from uterine from abdominal. All I knew is that everything in my pelvic cavity felt foreign. Not quite part of me.

Eventually, of course, the stents and foley went away. Gradually, I began to be able to differentiate my remaining pelvic bits from each other. I was on the mend. I'd probably go home soon. Except ... I developed a near-constant low-grade fever. And there was redness around a few staples. Staples which were removed to reveal the pus of infection. Blood work also revealed a bladder infection -- my very first and not recommended -- which probably explained the blood in my urine. Although maybe that was irritation from the stents. Who knew? Some days, I felt like a mad scientist's experiment.

And being sent for more scans and tests to make sure there wasn't "a mass" or equally scary sounding shizzle somewhere in my pelvis causing the fever (because, sure, the infection was responding to the antibiotics but the fever was not) didn't help a whit. I started taking Xanax, because I could not get control of my anxiety. I also finally mastered the language of the pain scale and stopped being #VeryBritishProblems about asking for Oxy so I was, at least, finally comfortable and (marginally) less worried about everything.

And, let me tell you, pain management is the name of the game. There's no point in trying to stick it out -- surgical pain is not like dropping a book on your naked toeses or burning your arm on the stove -- as it isn't going to go away with any speed on its own. And there's definitely no point in worrying about seeming like a junkie to the nurses/nurse technicians or inconveniencing them with your "unimportant" needs like drugs and help to the bathroom. If they're not helping you, they're helping someone else ... so, fuck it, it might as well be you. (Which doesn't mean be an asshole about it, either -- remember to use polite words like "please" and "thank you." Definitely say "excuse me" and "I'm so sorry" when you elbow your nurse technician in the breasts trying to get out of bed after a particularly confusing fever dream).

Tl;dr it's a lot easier to pee (and think and sleep) when you're not in pain.

Anyway, twelve days after I entered the hospital, I was finally discharged with a handful of scripts to make me comfy at home and continue to clear up whatever infection I might be harboring. (While the infection around the staples has cleared, the source of my persistent low-grade fever remains a mystery). Thankfully, my friend Kelly the RN slept over the first night ... just in case anything went pear-shaped. Which it did not.

So, I'm home now. It's ... good. There are cats. And cups of tea. And The Husband. All the best medicines, really.


My Completely Random & Probably Overly-Optimistic Post-Surgery Reading List

I'm going into the hospital for surgery Monday and I'll probably be there for five days, then home recuperating for ten(ish) weeks. So I've been amassing reading materials. And padding out my library hold list. And stuffing my Amazon cart for when I run out of library things ... as if that is likely to happen.

Thanks to the wonders of modern medicine, I hope to be pretty out of it (and totes comfy) for the first day or two, so I'm thinking of packing just a few "light" graphic novels like the first few volume's of Chi's Sweet Home as just-in-case reads. And then, when my brain is fully functioning and needs distracting from my body's new reality (who stole my asshole? fml), I have this lovely list of totally random, but appealing titles to keep me going:

  • Bright Lines by Tanwi Nandini Islam
  • The Cry of the Owl by Patricia Highsmith
  • Desert of the Heart by Jane Rule
  • Ei8ht, Volume 1: Outcast by Rafael Albuquerque et al
  • Everything is Teeth by Evie Wyld w/ illus. by Joe Sumner
  • The Feminist Utopia Project: Fifty-seven Visions of a Wildly Better Future edited by Alexandra Brodsky & Rachel Kauder Nalebuff
  • The Fire Sermon by Francesca Haig
  • Groot by Jeff Loveness w/ illus. by Brian Kesinger
  • Half World by Hiromi Goto w/ illus. by Jillian Tamaki
  • The Imitation Game: Alan Turing Decoded by Jim Ottaviani w/ illus. by Leland Purvis
  • In a Dark, Dark Wood by Ruth Ware
  • Kaptara, Volume 1: Fear Not, Tiny Alien by Chip Zdarsky et al
  • Life list: A Woman's Quest for the World's Most Amazing Birds by Olivia Gentile
  • Notorious Victoria: The Life of Victoria Woodhull, Uncensored by Mary Gabriel
  • Paper Girls, Volume 1 by Brian K. Vaughan et al
  • A Silent Voice, Volume 1 by Yoshitoki Oima [translation & lettering by Steven LeCroy]
  • Small g: A Summer Idyll by Patricia Highsmith
  • Snuff by Terry Pratchett
  • You Deserve a Drink: Boozy Misadventures & Tales of Debauchery by Mamrie Hart


Goodbye, Adios, Sayonara Rectum

SURGERY IS GO FOR JUNE 20, BITCHEZ. Had my pre-operative assessment interview and will be given a hospital arrival time shortly. This. Is. Really. Happening.

Currently up in the air as to whether I am having a proctocolectomy completion or perineal proctectomy, because (despite CT scans of my GI tract, etc) no-one can actually be certain of what's going on with my insides until they've cut me open and had a good look around. Hooray. Feel free to bet amongst yourselves as to which surgery I'll actually get and how many hours it will take.

Amusingly, my surgeon does not draw butts as well as I'd expected.

It's also still up in the air as to whether I indeed had ulcerative colitis back in 1998 or if I have Crohn's. The CT scan suggests no signs of Crohn's in any other digestive organs, so I probably did not have Crohn's, BUT (heh) the 1998 pathology and surgical reports list points consistent with Crohn's ... so, maybe, I do have Crohn's, and removing my large intestine just happened to take care of all the inflammation and I've been in remission ever since. I definitely had toxic megacolon (toxic colitis) which, unfortunately, is found with both UC and Crohn's. Way to be unambiguous, body. Right now, I believe we're tentatively calling whatever I had/have indeterminate colitis -- which is simply the cop-out term used when a clear diagnosis cannot be made.

(Or, maybe, it's aliens. Aliens have a thing about butts, right?)

Certainly, I've spent the past eighteen years believing I'd had ulcerative colitis, telling everyone I'd had ulcerative colitis, and generally feeling fine. So, if believing a thing could actually influence the universe, I must have had ulcerative colitis.

Anyway, this just means I get a gastroenterologist of my very own (hooray) when this is all over ... and something new to worry about, which is not fair, because this surgery was supposed to end all butt-related worries. Rectum comes out. Butt reverts back to simply being a pair of lovely lady lumps. I never think about cancer or fistulas again.

Well, except for every time I "manage" my ostomy. So that's ... four or five times a day? But, while my current (rectum-related) thoughts are stressful one along the lines of "So, self, when do you think you'll give me cancer?" or "I wonder where the next fistula will spawn, all wormhole like?" my ostomy maintenance thoughts tend to be indignant ones like "It's 2016. Why the fuck are my medical supplies not covered by insurance?" and "It's beet juice! Not blood! Stop freaking out, you nincompoop."

Seriously. Beet juice. Every. Time.


Everything Will Probably Be Okay

Saw one of my doctors yesterday and he was not thrilled by my abrupt spike in blood pressure -- numbers higher than we'd seen in two years -- so he had me do a self-assessment and it's obvious my stress levels need to come way the fuck down. That's not exactly what he said, but that's definitely the gist of it.

I'm having surgery in nine days. Nine. Days. Nine. A completion proctocolectomy which basically means that the rectal remnants I retained after my partial proctocolectomy for ulcerative colitis way back in 1998 are coming out. Do they absolutely need to come out rightnowthisminute? Probably not. But I am at an increased risk for several cancers, I already have a history of fistulas, and I'm simply tired of the day-to-day care (and worry) I'm spending on a part of me that doesn't have a useful function, anymore. My rectum is currently about as useful as an appendix ... which I don't have, because it came out during the partial proctocolectomy.

I've been slowly but steadily headed toward this surgery for months now ... so I ought to have had plenty of time to get over myself and not succumb to anxiety or stress myself out. I've done the research. I've had a bunch of tests. I've spoken with my surgeon repeatedly about what could happen during the surgery. I thought I was pretty chill about the whole thing.

And then I thought about all the lists I've been making for myself -- things to get done at work and home before I go under the knife. Things to read. Things to cook. Things to clean. Things to reorganize. Things to buy. So. Many. Things. It's clear I've simply channeled my surgery anxiety away into every other part of my life. Hooray.

So. I'm having surgery. Big, kinda scary surgery. Bad things could happen. However:
  1. My surgeon knows what she's about.
  2. I am currently in good health.
  3. My hospital has acceptable ratings for the things I care about.
Everything will probably be okay.

Everything will probably be okay.

And, for the love of god, stop writing lists.


It's in the Bag and Under the Covers: Stories of Dating, Intimacy, Sex, & Caregiving About People with Ostomies

So you poop in a bag and you want to know if what you feel about that is "normal?" You're either going to end up on the Internet or at your public library, looking for information about what it means to be an ostomate. Not the nitty-gritty medical stuff -- doctors cover that pretty well -- but the messy emotional stuff about relationships and intimacy your doctor might have given you a not-really-helpful brochure about. (Mine had a middle-aged couple walking hand-in-hand on a beach. I was nineteen. It did not make me feel better about my new self).

Should you end up at your library, ask your nice reference librarian to interlibrary loan this book for you. Should you end up on Amazon, go ahead and buy it ... then donate it to your library when you're done with it.

Truly, I found It's in the Bag and Under the Covers to be a very helpful, informative, and encouraging book. The book is a compilation of true stories contributed by members of so you're guaranteed a healthy dose of real people talking about what it is really like to live with an ostomy. Some stories are funny, some are sad, and some had my nodding along saying "that! that is exactly how it happened for me, too!"

(Basically, we are all beautiful, sexy creatures and people who really like us and want to make beautiful sexytimes with us won't care about how we go to the bathroom).

It's in the Bag and Under the Covers: Stories of Dating, Intimacy, Sex, & Caregiving About People with Ostomies by Brenda Elsagher (Expert Publishing, 2011)