Not hiding

I stood under the hot shower at the YMCA staring at the piece of bloodied broken condom on the tile floor a couple feet away from me. I'd just flung it there after a half-assed attempt at swooping menstrual blood out of my vag with my finger. Half-assed because I was standing in the shower area with one other woman and my social conditioning reminded me it wouldn't be cool to squat in the shower and do a full finger excavation. But as I stood there looking at the bloodied piece of latex, I wondered what was more shocking.... that? or the ostomy bag hanging off my abdomen in full view?

I've gotten much better - much better - at not getting worked up about being naked in the changeroom. Still, sometimes when I part the towel I have wrapped around me to expose my bag in front of the mirror and blowdry it, I wonder if I am being watched. I am not ashamed. And if I feel ashamed, I hear my mother's voice asking me why I am ashamed and why should I have to change my behaviour because I have a bag? Just carry on and do as you always would. Then I start to think about how blowdrying my bag is just practical - because if I don't, my underwear will get wet, and invariably soak through to my pants, leaving an awkward wet mark just northwest of where it might look like I'd peed myself. But it becomes political. It becomes some sort of indignation, or at least I wonder if that's how others view it when they see me blowdrying my bag. Anyway, I would rather them think that than feel sorry for me.

The woman in the shower with me was busy in her own world. She didn't see, and if she did, my bag and the bloodied bit of condom on the tiles were of little consequence to her life. At the same time, if they had somehow ruptured her sensibilities, then I guess that's good. There was nothing forced on my part. I was just showering and cleaning myself. If someone were to be shaken or disturbed by my bag or that little bit of condom, it's her that needs to open up a bit, not me that has to hide.

dead friend

my friend with an ostomy died recently. his brother sent out a notice by email, using Chris's account. i was shocked to read it, although he had been sick his whole life and was waiting for a double lung transplant in the time leading up to his death. his whole life was marked knowing that it could be over soon. he led an unusual life to say the least, between being a regular TV telethon face, to visits from hockey players at the Children's hospital, to trying to live like a normal kid in a suburban town, and keep a job, and cart an oxygen tank around sometimes.

through having an ostomy, i have come into contact with people - like Chris - who have lived unusual lives, with all kinds of health complications, and run-ins with hospital, needles, knives, drugs, walkathons, frustrations like missing big events because they too sick to go, pooping themselves, getting screwed by a negligent doctor, etc... and then we've all been able to meet up in the park or a coffee shop and laugh about it.

I'm a regular Dear Abby!

Jeff said...

I've wondered what it would look like to have no anus. Thanks for braving it to share with us. I have an ileostomy but still have a rectal stump that needs to be yanked out. Getting it scoped this month but the GI and transplant people tell me that I should get it removed due to the cancer risk. I've chatted with others who said it takes a long time to heal. They also said sitting on a O-ring cushion won't help as it spreads the cheeks and makes it worse. I've heard of the vacuum pump thing to help healing. I had a fairly deep chest opening from a liver trasnplant but it didn't take a year to heal using the old wet to dry packing. Any other tips for this surgery and healing afterwards?

mypinkbutton said...

It feels weird. It kinda felt like my ass cheeks were a bit misaligned and that was annoying. It took a few weeks before that sensation went away.

I used the donut a few times and seem to remember it was a bit of a relief, but also kind of awkward to sit on.

Here's a tip: enjoy whatever pleasure you can from stimulating your anus while you still can. Before my surgery I had the wild fantasy my surgeon might turn my non-functional anus into some kind of erotic pleasure zone. It's the least he coulda done for my troubles, huh? no such luck.

and another: If any nurses approach you with a wet sponge saying they want to clean you up... make goddam clear they know you had your rectum removed. I may just have had the worst luck possible when this happened to me, but that towelly scrape across my gaping wound hurt like an mofo - even when I was pumped full of pain killers.

and another tip: get a sitz bath as pictured above. and sitz your ass in that bath. it feels good. use salts, and for an added treat, use the solution bag of warm water to create a little toilet-top jacuzzi for your ass.

I've never heard of the vacuum pump.

other than that, I don't have any tips, unless, Jeff, you have a vagina. In which case I recommend you are careful when you have sex, like I mentioned in my earlier post. or if you are a gay man and like bottom, all I can say is: there are support groups for you. and... you have my warmest wishes.

well, you have my warmest wishes no matter who you are. Good luck Jeff!

A string of questions from someone who stumbled along...

Qs: How about your diet? Any foods you had to omit completely? But, my main question would be: how does it work with hydration - I mean, how do you compensate all the water your body would absorb back from the poo wasn´t for your ostomy? Just how much do you have to drink?Thank you.

As: I loved eating right after my surgery, SOOO much. I gained 30 pounds that summer, after getting uncomfortably skinny in the midst of the surgery-slash-hospital debacle. I was eating everything... everything! drinking too! ...booze! and although it was a lot to get use to the mechanics of the bag changes and taking care of my peristomal skin, there was no pain after eating, and so eating was a new and glorious experience.

It still is. Although, some of the novelty wore off, and something happened a few years ago that made me reassess my diet. I started to feel sick again. It wasn't terribly sick, but just bits of pain here and there and I knew it was related to Crohn's. It upset me BIG TIME, because it was my first realization that I could get sick again, and I knew what that meant. No more glorious eating; and in exchange: pain, fatigue, diarrhea and all the other shit that comes along with Crohn's Disease.

So! Motivated I was to make change in my life for my long-term health. It had never occurred to me how worth it was to take care of myself when I was sick as a teenager. I didn't realize what was at stake. This time around, I obviously did.

I went to see a nutritionist, and she recommended a long list of foods to concentrate on - including lentils, rice, quinoa, nuts, leafy greens, soy, certain fruits and veggies, yoghurt, seeds, millet, fish, certain oils - the kinds of food that aren't readily availalbe at fast food chains and in the freezer aisle.

Then she recommended I eliminate wheat, red meat, and all dairy products except yoghurt. It wasn't easy, but I was determined to keep up a healthy diet to see what the effect would be. ta da! My pain stopped, I started getting more energy, and I started feeling better about myself. Granted, there were other things in my life at the time that were evolving for the better, so I think all the factors worked together.

I slowly reintroduced dairy and red meat, but now only eay them in small quantities.

I've never been able to reintroduce wheat because each time I've tried it's given me a bad headache the next day - the kind of headache that painkillers do nothing for.

As for hydration, the first few days after having the surgery, my output was quite watery. But as I was told by my nurses, the output would get thicker as my small intestine took over the work the colon was not doing. I guess whatever hydration regulators we have in our body realized I wasn't absorbing enough water from my digestive tract, so my small intestines started doing double-duty.

I still drink probably a little more fluid than the average person, but it's not like I'm panting if I don't get a drink.

Normally my poo ranges in consistency from cream-soup-like to thick-enough-to-make-mud-pies-with. not that I do.

Occassionally I'll have diarrhea, and that's no fun because I have to empty my bag every 30 minutes or hour or so and it is thinner in consistency than water. I don't know if that's possible, but that's what it feels like. And it takes such a toll on me that I'm usually completely wiped the next day and have sometimes had to go to the hospital to get a bag of saline dripped into my veins. That hasn't happened since this past fall, when I was really stressed with school and not taking super care of myself. I went on a 6 week course of some kind of steroids... it's embarrassing I forget which ones... and the problems I was having cleared up.

I hope all that information answers your questions. I've never really measured how much liquid I drink, but I'm gonna venture I probably should drink more.

I think I'll go make some tea.

Snappin' a photo where the sun don't shine

I never thought I would post this picture to my blog, but somebody asked - and I had given the green light to questions.

Anna wondered:

"What is there now where your anus used to be? Is it, like, stitched up or something?"

Pictures are worth a thousand words, right?

but even so, I still have more to say about this. I was cut up my ass crack, and my anus and rectum were completely removed. there was an open wound there after the surgery, and it took about a year for it to heal from the inside out.

Sex was a bit scary for the first few years after the surgery because a penis can (and did a couple times) slip out of my vag and ram into where my anus was. Of course, my nightmare of it actually tearing the wound open again never happened, but I was so scared of that.

Not anymore though. It's sealed SHUT and mostly with scar tissue.

You've got questions?

I've got answers.

Here's a green light to anyone with questions about my ileostomy.

Go ahead! Ask away! A nice lady named Roxanne did!!

Roxanne's first few questions...

R: Your stoma looks like it really hurts; does it?

J: No, the stoma I can't really feel at all. I can only feel pressure on it. The peristomal skin is what sometimes hurts. That's the skin just around the stoma; a small ring of skin has never completely healed. I've had Enterstomal Therapy nurses (aka ET nurses, aka wound care specialists) say it should heal, but many ostomates I've talked to haven't had it heal completely.

Most of the time the peristomal skin doesn't hurt... it only hurts when it marinating in liqui-poo that's slipped under the flange - which indicates it's time for a bag change! - and it hurts when it first comes into contact with the glue I put on underside of the flange - there's alcohol in the glue.

Actually, the peristomal skin feels somewhat orgasmic when I take off the flange and clean it with a wet cloth... ahhhh... it bleeds at bit, but not for long. And honestly, the pleasure of the itching and rubbing is divine, even though it hurts a bit.

R: Is it constantly flowing so you have to wear your bag all the time? Even in the shower, and at a swimming pool?

J: The output from my stoma sometimes slows down depending on what I eat and drink, but it never completely, or predictably, stops. I used to eat a banana 30 minutes before each bag change, because it would slow my bowel activity down for about an hour, but now I don't bother because I've become pretty adept with a quick bag change.

I occasionally take the bag off in the shower - when I do, the poop uncontrollably flows down my front, and it gets to be a ridiculous game of soaping the skin to clean off the poop, and then my stoma erupting again. Plus, poop in the pubes is pretty unappealing. But then again, it feels nice to have that skin exposed for ahile and under the warm water.

Yep, I wear my bag swimming too. I usually wear a speedo, which keeps the bag really tight against my abdomen, plus the patterns on speedo suits are great for obscuring the hard plastic ring where the bagsnaps into to the flange.

R: How does farting work?

J: When I 'fart' - it's usually not like farts coming out of an anus, because I don't have a rectum, or any other kind of receptacle at the end of my digestive tract where gas, or poo, collects before coming out all at once. So mostly my farts come out in small bubbles, just whatever air happens to be cruising through my intestines before peeping out into the light of day (or the light of my bag at least). There's only sometimes a sound, and those are mostly very quiet. Although a few times it's been hilariously loud - like when I farted while talking to my landlady, and she looked at my tummy and said "wow- you must be hungry!"

Some ostomates I've talked to have bigger issues with noise. One woman I knew was a lecturer and she used to hold a small pillow against her tummy at all times to muffle the noise. She had a colostomy though, and I think having a larger stoma, with a portion of your large intenstine intact, makes a difference.

About 25% of the content of my bag is gas when I wake up at about 6am to empty it. Often the bag is like a goodyear blimp floating on my abdomen.

R: Can you anticipate the gas and poo coming out, and can you feel it when it does?

J: Sometimes I can feel the gas coming, but it's a subtle feeling. Sometimes I think a fart is coming, but it's not. But like I said, it's mostly little fart bubbles that come out, and I don't feel that at all.

I only feel the poop coming out when there's a big surge of it. and no, there's no more sense of urgency or satisfaction from pooing. I miss that. well, I would say there's a mild satisfaction after some particulary exciting eruptions, but nothing so satisfying as the days when I had explosive diarreah, or that feeling of laying a huge log after awhile on the toilet.

This Just Leaked!! ...a photo story

I shat myself at school

...and all was fine.

I knew it was bound to happen sooner or later.

It happened on the same day I had all-you-can-eat sushi for lunch, and always after I have all-you-can-eat sushi, I have all-you-can-smell poo. The humdinger is tuna sashimi... any raw tuna in my system comes out smelling P-U-TRID.

I had class in the lab, and it was one of the most boring, long classes ever, and I actually had to ask the instructor to let us take a fine minute break because she just kept talking and talking and I was really starting to bulge uncomfortably.

In the washroom, I suddenly got super self-conscious about the forthcoming stench, especially when I thought it was somebody from my class in the stall next to me.

So I tried to do the perfectly-sealed-vacuum-chamber thing with my legs and the toilet, and when I had to open my legs to pull out the bag's end to wipe it, I did it quickly to let as little stink escape as possible. Well... I thought all was fine. But I was wrong.

It didn't take me long to notice, because when I stood up and began buttoning my pants up, I looked down and noticed a splash of poop on my shoe! ewww!

Panic set in. Oh my god, where else did poo splatter? I wondered. After wiping my shoe clean, I looked all over myself to see if I could see some more poo. Quasi-satisfied the shoe poo was a lone-stray poo drip, I left the stall to wash my hands. In the mirror, I double-checked my body for random poo.

Semi-confidently, I walked back into class. The boring instructor was back at it, and I sat obediently. After a few minutes, I got a hint a of rotten tuna stench and wondered if I was leaking. Nah, I thought. Then I smelled it again, and I looked to my left to see if my classmate was noticing anything. Nope. I crossed my legs tightly and said a little prayer while trying to remain as inconspicuous as possible. Although I could smell little wafts of tuna-fied poo once in awhile, I convinced myself by the end of class I was just being paranoid.

Like I often do, I offered a ride home to a couple classmates. Today, of all days, lots of people wanted a ride!

So I was walking down the hallway with one passenger-to-be, with four others trailing behind us. I felt wet and gasped, and instinctively put my hand where the leak was. My classmate, and thank god, friend, who knows about my ostomy, said "what? do you have your period?"

I grabbed him and ran ahead of everyone else. In the stairwell I told him what was going on and to keep everyone at the bottom of the stairs while I ran to the bathroom to assess the damage.

The problem was a torn bag at the opening, a gaping hole about the size of a dime. The problem was more of a problem given my ultra-watery, ultra-rankin output. Brave face, brave face.

Back at the bottom of the stairs, I got a couple (what I perceive to be) strange looks, and all six of us eventually headed out to my five-passenger vehicle.

It was on my my mind for nearly all of the 10-minute walk out to the car. On one hand, it was a good opportunity to come out to my classmates, on the other maybe no one had any clue anything was up. On the other hand, maybe the car would reek!! On the other hand, I wasn't sure I wanted to bring the attention to myself. On the other hand, people really ought to know more about ostomies. Needless to say, I wasn't quite comfortable with coming out, but I did anyway.

AHEM!

Does everyone here know I have an ileostomy? Only two people didn't. I summarized what it was for them in record speed. Then I told everyone I have a leak, and I had sushi for lunch, and it really stinks, and the car ride might stink. A disclaimer of sorts. No one really had much to say about it after that, no, nothing if I remember correctly.

No one said anything about it in the car; it was all small talk. Were people concerned about my comfort in discussing it? Were they being polite? Was everyone stunned into silence at broaching such a taboo subject? Or was it really just not a big deal at all? I can't tell. I'm too wrapped up in my own poo to really understand if it is or isn't a big deal to anyone else.

Anyway, if you thought that was a good leak story, just wait til I tell the one about camping this summer. Wow. I knew it would take some time before I was ready to make that experience public information... I think it's just about ripe for the telling...

Obsess much?

What was I thinking? Was I really so upset about low-riding pants that I was going to drop $200 on couture jeans? I couldn't really even give a good definition of couture... and I don't care enough to look it up.

What, if anything, did I learn from my high school days if not damn fine pants for dirt cheap prices can be found at Value Village? All it takes is hours of rifling through granny pants, skinny capris, and weird jeans with too many pockets all over them, and then being overcome by static cling in a change stall where you can only try 5 items on at a time, a dumb rule which I broke. tee hee!

Did I find one pair of jeans I like? No! I found two! And... I found 4 more pairs of pants, about 8 shirts, and 2 cute nighties. Yay me. I love my second-hand shopping skills.

I spent $115 and am revelling in my new wardrobe.

But I had a revelation tonight when I sat down to organize the shelf I keep my pants on. I didn't count how many I have, but I can see the shelf from where I sit now, and a rough estimate is that I have 20 pairs of pants, including the new-to-me ones, but not including the other 5 or so pairs hanging in my closet, nor the stack of 5 chill pants I wear on lazy days, nor the fine pair that graces my lounging ass as I write. oh, and of course, not my PJ bottoms, or shorts.

The revelation is that I have developed an obsession with finding pants that "fit" my ostomy so much that I am never satisfied and am always on the lookout. Like I always put my self into horrid pant-shopping experiences, despite the fact I often lose self esteem and get pissy when all I see in stores are pants that would make me look ridiculous, and despite the fact I have more than 30 pants.

I asked myself what the hell am I doing when I rarely have an i-can't-find-a-pair-of-pants-to-wear day, and even better, scarcely live through an oh-my-god-i-can't-believe-i-wore-these-pants-today day.

I'm glad I had my spree and am the happy owner of lots of pants I feel okay about wearing. But for me, the out-of-control pant-shopping buck stops here.

Visible ass-crack is challenging enough

...so who wants to see an ostomy bag bulging out the top of my jeans, complimented by, say, some unruly northern pubes and on some days, a distended tummy?

Every several months I have a renewed optimism that I will venture out in the retail world and come across a pair of jeans I fall in love with. Said jeans will be high-rise without looking like they belong on my mom, they will hug my thighs and ass and keep my ostomy secure, will make me feel hot, will look good with any shoes, with any shirt, and will both suit me up for school and for a sexified night out.

Never happens. Despite year-old rumours than lowrise jeans would go out of style, the powers-that-be in the fashion world have disappointed.

Last night I got the jeans-buying bug. Convinced it was my night, I gave myself 1.5 hours at the mall to cruise the racks at Jacob, Guess, Buffalo, RW&Co, and Gap. No luck.

No jeans were found. Nothing worked. They were all low-rise, as usual.

Over the last several years, I have bought one - ONE - pair of jeans that make me feel hot. They were second-hand, and have since ripped all the way across the right knee and under my right ass-cheek. This summer I patched up the rip in the ass, and wore them a lot during this past semester at school. In December, on a day where there were respectable industry professionals visiting my class, the ass in my jeans tore open wide (i've gained weight recently too). I had to tie my sweater around my waist, which I think raised eyebrows, but only because I had chosen a t-shirt to wear underneath my sweater that had PAIN FOR PLEASURE emblazoned across the front. Of course I was more amused than embarrassed by this.

Ironically, my next two favourite pairs of jeans are ones that my boyfriend bought for himself, before he met me. He has recently relinquished ownership of the second pair to me; the first pair I had successfully claimed title to over a year ago. Possession is nine tenths of the law.

Obsessively, last night, I found myself surfing the websites of different jeans manufacturers. Mainly high-end. I have a hard time digesting the fact that I now want to find a pair of jeans that Oprah raved about 2 years ago and cost around $200. Me? But have always laughed at the concept of designer jeans! Shopping for them would violate my anti-consumerism sensibilities!

Well, apparently, my urge to overcome the challenge of finding myself an ostomy-friendly pair of jeans trumps my disdain for the high-end jeans world. High-rise jeans... here I come!

Stoma Dreams

Last night I dreamt about poo, pooing, outhouses, urgency, messiness, nudity, smells, airplanes, lost luggage, glaciers, beaches, and it starts to get foggy after that.

But what sticks out the most is that which was not sticking out - my stoma! I was in some outhouse, which was on some sandbar in the ocean. I was trying to poo while standing up, out of my abdomen, without an appliance on, and no stoma! It had been sucked inside my abdomen so it really just looked like I had a kind of anus on my tummy.

I tried to push my stoma back out, successfully, but when I relaxed, it sucked backed inside. I thought it looked sexy- like a unique, misplaced bellybutton, and best of all, no bag! The pressure around the hole created by the caved-in stoma acted like a sphincter and kept all my poo inside, unless I pressed both hands on either side and pushed.

I've come a long way. Throughout the first couple of years after my ostomy surgery, I was having regular dreams that my intestines were forcing themselves down toward where my anus once was. I would often find myself in the middle of a very pleasurable dream when a hole opened up in my ass and long, windy farts or warm diarrhea would spill out.

There was actually a part of me that believed this was real, and when I woke up, I would check. Even after the disappointing realization it was just a dream, I figured it still could be possible that my intestines had a kind of memory and they wanted to create a path back toward where my anus was.

I don't really need to mention it hasn't happened. And I've let go of the belief it ever will. I think all of me gets that now, even the dark and cobwebbed corners of my subconscious have seen the light.

This doesn't mean I completely believe what my surgeon and GIs told me in the past... that my ostomy is permanent. I do believe it is possible that I will poo out of my bum again, maybe even out of a proper, healthy anus made of my own genetic material. I would certainly like that.

But for now, despite the annoying bag changes, having to wake within 6 hours of sleep to empty my bag, occasional leaks, problems wearing all the clothes I want, and all other such proverbial, and literal, pains-in-my-ass... and despite sometimes wishing it was different, I've accepted that for now anyway, it's not.

Despite all my failings

My birthday is over. My months (months!?) of neglect of this blog are over, but maybe just temporarily. But will my tendency to beat myself up ever be over?

My flange is about three days overdue for a changing... no wait, probably more. Mid-week at school I stopped in at the school's clinic and got some medical tape to secure the top of the flange which had peeled off dangerous close the edge of disaster. It's still like that, all taped up. Although 10 minutes ago I added another layer of tape, hoping to delay changing my flange til tomorrow - or could I squeeze another day out of it?

So my latest kick is letting go. It's advice from my boyfriend/ex-boyfriend/best friend/confidant/pain-in-ass-relationship/I-might-apply-as-many-labels-to-this-as-I-can-since-none-of-them-seem-to-fit-so-maybe-multiple-labels-will-better-define-it.

Of my need to be in control, of my need to judge, of my need to attack myself, second-guess myself, sabotage my success, exhaust my self-esteem by testing it beyond its limits. letting go of my tension, my fear, my need for self-perfection.

so, with that, I am ending this very imperfect blog entry.

An abridged history

When I was 10, I went to the bathroom and it felt like razor blades were coming out of my anus. I thought it was because I had pushed my heel into my ass to put off going to the can while I sat in front of the TV getting really high scores on Tetris. After a week or so of these really painful shits, I realized the situation was getting really serious. But I still thought it was my fault, and it was so embarrassing.

I told my sister in private, who threatened to tell mom if I didn't. So I told her I would, but I never did. A good year and a half went by, but there was way more wrong than just feeling like there were razor blades coming out of my ass. Thick, dark blood was coming out with the poo. The poo became really stinky. I totally lost my appetite, in fact, I started to gag every time I swallowed unless I took incredibly tiny bites and chewed about 25 times before carefully slipping the food down my throat. My abdomen was mostly always distended, and usually hurt. Every night it took me about an hour to eat dinner, even though I’d never finish what was on my plate, and after eating I would invariably be hunched over in pain. I also became so emaciated that my bones were poking out all over my body and I could grab my ribs and slip my fingers at least a couple of inches underneath the rib cage. It was a pretty cool attention-grabbing trick I could show my friends, who took me less seriously as time went by since I was not as mentally, physically or socially alert as they had known me to be before.

By the time I was twelve, I weighed 55 pounds. I would have to fold up toilet paper and slip it between my ass cheeks in between desperate trips to the washroom to unload, because there was always leakage between shits. Shitting, and finding places to do it without people noticing, completely consumed my consciousness. No one could find out. I had a stash of soiled underwear that I kept hidden in a drawer because I didn’t want my mom to notice that I had shat myself when she did the wash. I saw two different doctors during these secretive times who never figured I was lying when I said my bowel movements were just fine, they just figured I was anorexic.

It was only after I was diagnosed with Crohn's Disease at the age of 12 that I started to understand the anatomy of my digestive tract, and it became clear to me over the course of many years that none of this was really my fault and that I wasn't the biggest freak in the world just because I was shitting blood and because when I stuck my finger up my bum, all I felt was raw, bloody flesh.

After all kinds of health complications, invasive procedures, drug therapies, and an adolescence that was both joyous and fucked up on many fronts, I had ileostomy surgery in 2002, at the age of 22. My digestive tract now ends with my ileum, the last part of my small intestine. The last inch or two of my ileum was pulled through a little hole in the lower right quadrant of my abdomen, turned upon itself like a turtleneck, and sewed into the skin of my abdomen. The part of the intestine that sticks out is called a stoma, and out of it comes a more or less constant flow of excrement, since there is no sphincter or other way of controlling output. Every week or so, I put on a new flange, which is a round disc, sticky on one side, with a hole just large enough for my stoma to come through. Then, I clip a bag on the flange that collects my poo, and which can be emptied while I sit on the toilet through a very intelligently designed drainage mechanism at the bottom of the bag.

When my surgeon formed my ileostomy, he also removed my anus, rectum, and large intestine. I asked, but was not allowed to take any of these home with me, even if they were steeped in formaldehyde and permanently sealed in a big jar. But in exchange for these expendable body parts, what I did get was a bunch of interesting stories, and a perspective on life that I probably wouldn't otherwise. I also finally got the chance to live without pain.

In March of 2006, I started this blog to share some of my stories and thoughts on life with an ostomy; I also write about some big questions related to life with an ostomy that I don’t have the answers to. The blog is part of an ongoing self-reflective process for me, but I’m increasingly finding that it’s a useful resource for others, and a good place to get some dialogue started on issues like stigma and shame. The site has been popular particularly with people who have ostomies, and for those facing having the surgery, but sometimes it gets visitors who have never heard of an ostomy before. This makes me happy, because ostomies get very little attention in the public sphere, and when they do, it’s often pejorative. The blog is a space where I can tell the truth and retain my dignity. It’s filled with contradictions and sometimes rants, but I speak from my gut… what’s left of it anyway. Thanks for stopping by.

Enough booze already... pass me a doob!

In my last year-and-a-half of high school I took to smoking pot a few times a week. At the time I didn't associate it at all with having Crohn's Disease, and I'm still reluctant to do so entirely, but years later I wondered if there was a correlation between me smoking pot regularly and for the first time ever, not getting hospitalized yearly.

Piles of documentation and other personal accounts that I've encountered indicate marijuana as effective in managing Crohn's on many fronts (including pain-relief, anti-inflammation, anxiety-relief, and enhancing appetite). But really, that information is extraneous. I know what I know. I've experienced the overall health benefits myself and can say without hesitation that I like it very much.

It's a drug, and like all drugs, is potentially abused. So I'll qualify the above declaration that it's beneficial for my health by saying it's not like I wake up and get high or feel like I need to smoke a joint to have a good time. I've developed a mature and respectful relationship with the plant.

There is so much pressure to consume alcohol in our world, it drives me crazy. I often feel like people want a good reason why I'm not drinking... when I'm not with people I know well, there is usually some kind of questioning or presumptuous comment. Fuck off already! It gives me crazy diarrhea, sometimes makes me barf, makes me dehydrated, and the next day, I feel awful. Sure it can be fun to be a bit drunk, but for me, it's just not worth it.

Marijuana on the other hand, under the right conditions, makes me feel great. Depending on the situation I'm in, it has made me feel social, comtemplative, comfortable, exploratory, artistic, sexual, or... in the times I have gotten high in sketchy situations or with people I don't enjoy, or who I feel judge me... I have felt anxious, frightened, and closed-off. Essentially, smoking the plant has thrusted me "into the moment" and opened my mind to experiences and ideas that I would not have had in the same situation, not high. Overall, my experiences have been educational, creative, and theatrical.

It took me several years to realize I didn't need to keep puffing until I felt high. Doing that usually resulted in wacko (totally fun, yet somewhat manic) experiences. Now a couple puffs, and I'm feeling fantastic. Not every day, sometimes not even every week... but when I do it, I enjoy it thoroughly.

Feeling fantastic? Waking up the next day feeling just fine? Discovering it actually contributes to my overall healthfulness? Why wouldn't I indulge?

Shit Happened... then it died

Well, I've evolved since last being here. I've discovered reality! I really have nothing to worry about. Everything that's got me all bunched up in mental knots is really relatively meaningless. In the end, it's all just a bunch of matter shifting from place to place in the world, at my job, in my head, in my gut. And I'm not letting the things outside of my control control my head and my tummy. I feel better. I haven't had any pain recently. Okay, once, but it was so brief I could have missed it if I was distracted.

And love. Love! Support! It's there! (big ups to my snuggly-poops and Mom)

And transition! I'm transisting! Leaving my terrible (albeit simultaneously terribly rewarding) job. Laughing (laughing!) at the fact my home is infested with fleas since returning from a few days away. Letting go, and embracing myself, my needs, and yes, the reality that my mental and physical well-being could actually be prioritized (guiltlessly!) over duty!

Finally, I perfected the camping poo! I pooed in one of those re-usable/disposable ziploc containers (with deordorizer in it) in the middle of the night, in the tent. Necessity fuelled my neurons to pump out that stroke of genius. I got several hours worth of diarrhea on our last night camping at a spot that was bang in between two outhouse, hence equally really far away from our tent. Saved myself four trips of outhouse navigation while half-asleep navigating through darkness. Felt pretty proud when I woke up well-rested, and sleeping on my tummy!

Now I'm starting to think more seriously about the perfect bedside toilet that I can have designed and installed when I get to that home-reno phase in life that I'm presuming I'll naturally have.

To admit or not to admit...

I mentioned several posts ago that I had an ileoscopy, but I never mentioned the results. ...drumroll please!

ahem. I have inflammation! According to my gastroenterologist, I have little ulcers about every five centimetres from my stoma to about 30 cm upstream. The reason for the scope was that in March and April, I was having fairly regular Crohn's pain. It was the most major sign of disease since having the ileostomy in 2002.

There was a period of about two weeks, just two years after the surgery where I had pain as well. The moment I definitively recognized it as Crohn's pain, I proceeded to lose it. I cried and screamed. And screamed and cried. It was my first introduction to the cruel fact that my health could disappear at any moment. After a full two years of bountiful health, where I discovered life without pain, anemia, weight fluctuation, diarrhea, fatigue, and appetite loss, it all of a sudden struck me how precarious that precious gift was.

And then I somehow got better.

Over time, I managed to digest that very real possibility that I could get sick again. But then these days I feel like I'm at some dangerous tipping point, where if I admit I could get sick, then I might as well admit I might get sick, and if I say that, plus I'm feeling pain and getting nausea and diarrhea at times (like tonight), I might as well say I might be getting sick, and heck if I say that, why don't I just start telling people in my life that I'm feeling like the Crohn's is coming back and hey I might want to start scaling back on all of these big responsibilities I've gotten myself into over these past years of healthfulness, because dammit they're sure weighing me down right now and I feel anxious and nervous and it sure is causing me grief. But then if I say that, why don't I just quit all the plans I have for myself, ask my mom to support me, and stay at home and watch movies all day and do arts and crafts?

I went through the trauma of Crohn's once before; it was my entire adolesence. Only then, I would never have used such a victimizing and loathful word. Trauma? Like what was I? Some kind of pitiful schmuck with tubes up my nose and no personality? Fuck that noise! Life was good, and Crohn's disease was just this bitch I had to deal with on the side. It was really no big deal. The drugs, tests, visits to the doctors were all novelties, in a way.

On the other side of my adoloscence, looking back, it seems more clear to me the difference it would have made if I had been healthy. The patterns of Crohn's, it's slow progression, it's severe attacks, all steered my life in a way that I don't regret or detest, but I just don't want to have to deal with it again. Because I know what's coming.

And now I feel trapped, not wanting to be fatalistic and play the victim, but also not wanting to foolishly ignore my need to slow down and take care of myself. It's so hard to let go of the approach to life that I adopted shortly after the ileostomy surgery, which was: Go! Do it! Yeah! whoopee! Look at what I can do! yay me! Now it just feels like work, and it feels overwhelming. The sensible thing for me to do over the next little while it seems is to extract myself from that way of thinking. Despite still having all these plans, dreams, and big ideas, I need to think small and prioritize my well-being. The last thing I want to be is a victim, so now I guess it's time to be a hero... and rescue myself.

The last form of acceptable oppression? ...as if!

The next time I hear someone say, "you know, __blah blah blah___ is the last form of acceptable oppression," I'm not sure I'll have the same happenstance reaction as I did the last time I heard it, just a couple of weeks ago, whilst talking to a co-worker who sat beside me on a five-hour flight.

I think my neighbour in seat 18E was referring to making fun of fat people, or short people, or some other widely accepted oppression which really and truly does exist. The last form though? Come on, open your eyes. Read the newspaper and look at how people of Islamic faith are oppressed every day. Look at how seniors are routinely abused and neglected. When's the last time you heard someone equate being Chinese with being a bad driver? Or suggest that a woman who makes certain decisions about her own sexuality is a hoe? Oppression exists everywhere and always will; different kinds of oppression, perpetrated by various people on various capital 'O' Others.

But what my co-worker said to me immediately made me think of myself and, without her knowing about my ostomy, I reactively said "That's not true, I saw a scene in a movie that was oppressive toward people with ostomies." It was kind of weird. First I had to describe what an ostomy was, then describe the scene in the movie, and say how I'd also come across ostomy-mocking on the internet and heard someone joke about people with colostomies on the radio, with no regard for how listening ostomates might have been affected. Predictably, my neighbour said, what an odd and hyper-specific reaction to what she just said. Well, of course it was, I have an ostomy!

So with hours still ahead of us on the flight, I told her. Different from most times I've come out about it, we had a lot of time and I got into the history and the anatomical detail; she asked many questions, and I gave thoughtful answers. It drew us together, and as with most times I've revealed my 'condition,' she began telling me very personal things that she would not have otherwise.

Ultimately though, what I liked in particular was not the depth of our discussion about my ostomy, although that was nice; what I liked was that in the beginning of the conversation, I unknowingly used an intensely personal experience to illustrate a larger political issue: that oppressive actions and words are used all the time, against an unending list of visible and invisible minorites, and sometimes no one other than those connected to the target of oppression even notice. In a very non-offensive way, it became clear that what she said was a gross overstatement of how far we've come as a society.

Unfortunately, the next time someone makes that blah blah blah is the last form of acceptable oppression statement in my presence, I might not react in such a genuine and personal way. Instead, in some angry, didactic and alienating way, I'll probably feel the need to defend all the oppressed people of the world, and deny the truth of the ignorant comment. Maybe not. Hopefully not. But hopefully I won't hear the comment again.

Easier each time

Went to the public pool the other week with an old girlfriend of mine. Decided I might as well not be shameful about the fact I have a bag of poo hanging off me and while in the changeroom after swimming I proceeded to expose myself more or less fearlessly as I got myself dried and dressed. It's not like I was trying to make a point by strutting around the room and flaunting my bag to lots of gasping naked ladies. It was just me and my girlfriend, and I figured what the fuck?! as if this friend of mine is going to judge me. Well, she did.

I could see it in her eyes. She thought it was cool.

What a Mess!

Experiencing a fair bit anxiety lately and unable to sleep last night, I decided to take Gravol. I knew I would be drowsy in the morning, but figured it was worth it. I did not anticipate this.

At about 7am, I woke up and realized that my flange was leaking. Way too out of it to do a bag change, I went for the 'mefix' medical tape, sealed it up, and started dozing heavily again. When I woke up an hour or so later, the poo had soaked through the tape and weakened (to say the least) the seal. My nightie was stained and still I was just too drugged to do anything immediate or really effective about the mess. Instead I took off my PJs, wiped myself up in the bathroom, ate half a banana, covered my abdomen in a plastic bag, and put on some boxers to contain it all. A plastic bag. I wrapped myself up in a plastic bag and lied on my stomach, which then marinated in a squished layer of poo until I could muster up the strength to do a change.

It was about 40 minutes. The banana had time to work it's magic, which is something I use often to facilitate changes without spontaneious liquidy squirting, particularly if it's the morning which is when the poo is the most liquidy and slimy. Bile, guess.

Which come to think of it, is mostly what my abdomen was marinating in. No wonder I now have a bit of red bumpy rash on my tummy. sheesh.

The Oral Fleet - It ain't so neat

I've had enough of these salty piss beverages to last a lifetime. I don't care if it cleans out every nook and cranny of my bowels leaving them with a photogenic gleam. I don't care if it facilitates the diagnostic process. Some day someone with some spare time and a righteous attitude should take the medical community to task on why they subject patients to this utter oral hell.

I recently had an ileoscopy. Before my GI had even completed the sentence suggesting I should have one, I was in full self-protection mode, ready to go to battle to ensure an oral fleet was not in my future. Fortunately, he understood the look of total abhorrence on my face when I asked if what kind of prep he wanted for the scope, and said not to worry about it and that he could clean me out when I was under.

Although I have never investigated this fully, I have the feeling that the oral fleet is not always necessary and more of a hellish-prep-at-the-expense-of-patients in order to make doctors' lives a little more efficient. After my ileostomy surgery, I laid down the law on this bullshit. There would be NO MORE oral fleets fleeting down the throat of one miss mypinkbutton. ever.

One time I was getting prepped for a resection. I was very happy that I had a naso-gastric tube in at the time. I'd been in this situation once before, and it allowed me to slowly but surely shoot the fleet through the tube and into my stomach using a big ol' syringe. Bypassing my taste buds like that sure made me feel lucky, although it was no picnic as I still felt the raunchiness rising up the back of my throat with the accompanying nausea. Anyway, so I had the tube in again, and the nurse on duty that night had never heard of anyone shooting the oral fleet into their naso-gastric tube. It was a very busy night for her and she was skeptical about my plan; it was almost as if she felt it just wouldn't work if a patient didn't experience the displeasure of having the fleet pass over their taste buds. She decided she couldn't let me do it myself, and so she very hurriedly pushed the entire load of oral fleet into my tube all in a matter of two or three minutes. It was too much, too fast. My body couldn't take it. I wretched the whole load up in repeated convulsions. The most disgusting part of this is that the barfing was involuntary and so I was forced to taste long streams of oral fleet barf as it past over the length of my tongue.

The next time I had to have the fleet was in preparation for my ileostomy surgery. A few hours after having taken it, my surgeon came into the hospital room to talk before the operation. He had a look at my fistula, which had formed between my intestines and the skin of abdomen, and saw that it had stopped leaking- an indication that I would be okay, at least for a time, without the ileostomy. He actually had the nerve to say, "are you sure you really want to go ahead with the surgery?"

What the fuck?! Can you imagine what was going through my head? After fighting against the operation for weeks, telling all the doctors I didn't want one, and having them tell me I didn't have a choice?! After all the mental and emotional preparation I had to undergo to prepare myself for the surgery, I was now being given an out?

But in all honesty, that's not what was going through my head. In that very moment after he asked, all I could think was good fucking god - but I already had the oral fleet! ...and so, I said yes, and I went ahead with the surgery.

I am not my bag. My bag is not me.

Since starting this blog, I feel like I have been able to start removing myself from the subject position of freak, which is a label I have constantly struggled against assigning myself since having the surgery.

When I first looked in the mirror, the first thing I always saw was the bag, and behind the bag was a freak. More and more, when I look into the mirror naked, I can see myself.

And when I stand naked in front of my boyfriend, I feel like he can see me and not the bag of poo that before seemed to be in the way.

Things are still processing. I've created some strange psychological distortions of myself over the years and they maybe will never be totally overcome. I know my bag has gotten in the way of me seeing myself as me and instead, often has me filtering many experiences through some conceptions I have of a reconfigured me that resulted from surgery. It's not fair to let my ostomy obscure the other very real parts of who I am.

For now, it's enough that I can say to myself that I don't feel like a freak. I don't remember what movie this was from, but Geena Davis, in some New York accent says to some arrogant guy 'get over yerself.' I got over myself in my early twenties; now I'm trying to get over my ileostomy.

Can't get no satisfaction

Sometimes I stall on going to the toilet. Last night I was watching a movie with someone and I didn't want to ask them to pause it so I could crap. I kept thinking I would just empty it when the movie was over. Then the movie went on forever.

My bag was almost full-blimp-size at the end of the movie, and I had to support it with both hands while manoeuvring myself off the couch when the credits were finally rolling up the screen.

But my legs always start to ache for some reason when I do this to myself. Maybe they get tense because I have to hold my body a certain way to support the bag. I also had a tough time concentrating the on the movie because I kept trying to calculate whether or not there was going to be enough room in the bag before the end of the movie.

It's really dumb that I don't just go when I need to go. How hard would it have been to just say, "hey, hang on... I gotta go empty my bag?" Not hard.

But there's such a difference between that feeling 'of nature calling' I remember from back in the anus-days and the more nagging and annoying 'call' of a full bag. Instead of getting that physical satisfaction from releasing a good rectal dump, I'm now left with the entirely unsatisfactory and mechanical unfastening of my bag, splooshing out it's contents, wiping, and re-rolling. Whoop-di-frickin' doo. No wonder I put it off.

Oh what I would give to experience the satisfaction of taking huge dumps again, especially the super-liquidy ass explosions! Those were the days...

We must be everywhere

In the summer of 2003 I was relaxing in a hotel suite with a group of people I didn't know that well. A joint was being passed around, the conversation was good and we were all unwinding after an intense day. I was very relaxed. I was so relaxed in fact that I did what I normally do when I'm at home lounging on the sofa; I pulled my bag out of my pants and slouched into the couch with my legs crossed on the coffee table. I'm not sure how much time passed before I actually realized that I had just exposed my bag to people who had no idea I had one. I was so embarrassed.

If this had happened to me today, I would have just made an announcement then and there. But I just kind of shrugged and slipped my bag back into my pants feeling, you could say... awkward.

The next day, I felt to the need to have a confidential talk with one guy in particular who I thought might have been completed baffled, maybe disturbed, about the what he'd seen. So I stopped him in his tracks and blurted out something like, "I know that was totally weird when I exposed that bag, um, that was hanging out of my pants, I mean, ummm...."

First of all, he had no idea what I was talking about. And he was not playing dumb. He looked at me blankly, which put me in the unwanted position of then feeling like I had to explain what the hell I was referring to.

Before I get to the apex of the story, this is a good time to illustrate a point. As an ostomate, I know I have an obsession with the lower right quadrant of my abdomen. If I ever feel a little bulge in my jeans, and my shirt isn't covering it, I am prone to thinking that everyone who walks by me is totally aware of it and immediately knows I have an ostomy. If the top of my bag peaks out of my pants when I reach for something, I'll assume that everyone in the room directed their attention to the quarter-inch of tan-coloured bag that was exposed. Yes, I am seriously misguided by my skewed self-perception and obsession with my poo resevoir. Thank god for moments like this when that point becomes clear: despite sitting in the same living room as me, while I had my entire bag hanging out of my pants, he did not notice it. And he hadn't even had a single puff of the magic dragon.

So when I was in the position of feeling like I needed to explain what the heck I was talking about, I told him. When I did, he matter-of-factly told me that he had been given a colostomy when he was a newborn. Apparently, we're everywhere. He was born with an extremely rare condition that required him to have the surgery (how cute it that? a baby with a little ostomy bag! I want one!). It was reversed years later, but I figure- once an ostomate, always an ostomate. I felt that immediate kinship with him that I feel with all ostomates I meet.

As much as I often think my bag is obvious, I know ostomates never really are. I wonder sometimes how many times I have shaken hands with an ostomate without knowing it, or been served by one at a restaurant, or cursed at one when they cut me off in traffic. My neighbours could be ostomates.

I thought my brown ribbon for poo was unique and sassy

Alas, it's been done. In fact the website I just found this image at has way more awareness ribbon variations than I could have dreamt up in a four-hour-long manic episode.

I gave brown ribbons out at my four-years-with-an-ostomy-and-without-an-anus anniversary party, which was a wonderful event. I really feel like I got my point across to everyone, and not in some kind of freaky-deaky me-on-a-soap-box kind of way. There was music; there was food, cake, and drinks. It was totally casual. I also made a display of writings, artwork, photos, a diagram, my osto-supplies and a print-out of some of the responses from other ostomates that I got through this blog and a couple of postings on osto-discussion boards. The point, by the way, was to get people comfortable talking about poo and to address the stigma that surrounds poo and other digestive issues. For the last hour or so, we all sat around in a circle (I think there was 20 people plus me) and shared our perspectives on poo. It was very funny, educational, and at times, sappy. On one hand, it was nice when people told me how brave I was and all that, but on the other hand, it made me kind of embarrassed and I really didn't want the party to be about how strong I am, especially in light of the fact that I had invited an osto-companion of mine who's had his since 1992, and multiple health-complications since birth, and who's facing life-threatening surgery in less than month.

Anyway, the ribbons. I made several of them and placed them in a dainty little white bowl. I put the bowl on a big pink sheet that had these text boxes pasted on it in this order:

"Please... take a brown ribbon to show you support poo and all those who do it."

"Why a brown ribbon for poo? ...because there's a ribbon for every other colour in the g.d. spectrum, that's why. What do you have against brown anyway?"

"No, that's not really why. The reason I'm asking you to wear a brown ribbon is because you've already supported one person with a digestive problem. Wearing one of these ribbons says any of the following:"

"Hey, I know what an ostomy is, and if you ask me what this ribbon means - I'll tell you."

"I promise that I will not shame, frown upon, silence, or otherwise stigmatize someone who discusses poo, pee, or any other traditionally 'gross' bodily function, particularly when I recognize that said person might be needing my support or trying to work through a difficult experience."

"I think that inflammatory bowel disease, colon cancer, and any other of the innumerable conditions that affect digestion should be discussed more openly so that inflicted people are empowered to find answers, live wholly, and not be ashamed."

Everyone wore a ribbon, and everyone spoke out at least once. It was a situtation that was a bit strange for most people, but strange in a good way. It was exciting. After it was all over, I felt good. I felt like it was cool to have an ostomy. I felt really normal and privileged, even. How weird is that?

Although I wasn't the first person to come up with the brown ribbon, the meaning I gave it is original. I agree with the message of the ribbon in the above image. It's cool to be spread awareness of IBDs. But beyond awareness, let's address the fundamental problem that social norms and language constraints actually get in the way of people with IBDs, ostomies, and so on to openly acknowledge their experience and rise above it.