My Pink Button

Alternative Histories....

2010-05-03T22:44:00.001-04:00

Somewhere in my jumble of thoughts tonight, I sprouted the idea to rethink my life.... to retell it with a new orientation.

So often I have recounted my history to people and it has focused on strife. One thing after the other. Hurdle after hurdle - and this narrative definitely doesn't paint a whole picture of me. My motivation for focusing on the pain was, I guess, I didn't want to forget it, or I wanted everyone else to know how much I had overcome. Maybe because it helps me looks strong, or maybe because after hearing a history like that, they would be more forgiving of my faults.

Well, it's time for a new history - an alternate history line:

I was born in Gold Rush territory. Well, by the time I got there, it was a pulp and paper town in the middle of British Columbia. I had an older sister, and a mom and dad who loved me very much. I don't remember much of my early days in there - and it's not because my sister dropped me on my head when I was back from the hospital - I left when I was two years old. At the age of four, I was living with my mom and sister and two amazing grandparents in Lake Shawnigan - in a beautiful house with a wild garden, and across the street was the lake. I remember gardening with my grandma, I remember the birds. I remember my grandma's hairbrushes - she had two.

By the time I was five, we moved into a great little townhouse across from the University of Victoria. I know I was five because that was also the number of our townhouse... I thought I might have had something to do with that. In my room, there was a secret room behind one of the closets. The ceiling was low and I played house and marbles and the organ back there. And I had a Fisher Price record player. I went to a nearby school, and was cared for by a good family while my mom was at work. Me and the son Nick used to built forts with cushions and sheets. I remember looking at his bare ass as we were crawling through one of our tunnels. I also remember his mom walking in on us when we were pretending to be mommy and daddy. I couldn't understand why she was so mad! And why it was such a big deal that she was going to tell my mom about it. Thankfully, it was not a problem for my mom, not that I remember.

By the time I was in Grade One, my grandparents moved to Victoria and moved into a little bungalow close to my elementary school - they took care of me and my sister after school - sometimes beforehand as well. My grandpa had their detached garage converted into a workshop so they could have their sewing business right there, and I loved coming home from school when my Grandma was in the workshop - I would watch colourful strips of fabric fall into the little brown bag she had attached at the side of her serger. And I would watch the multiple spools of threads all turn together jerk by jerk.

About this time, my dad remarried a really nice lady, who used to read to me and my sister a lot. Before not too long, I had a little sister, which was such a special and unexpected amazing thing for me! And this also involved amazing little vacations in the town I was born in - in the home I'd first come into - as well another location in North Vancouver, in the home of a clockmaker, which involved a lot of tick-tick-ticking.

Elementary school was okay. I knew the same kids for a long time, and I liked playing with clay, and I liked choir. I tended to excel in academics, but was never quite at the top of my class. I kind of liked soccer too, depending on the crowd. I learned how to mouth people off in certain situations, and how to be an angel in others, and I also learned how to entertain others - or maybe just entertain myself - with humour... absurd, cheeky, or shocking humour. Play with other girls often involved a yo-yo-ing mix of emotional exposure and then betrayal. And play with boys was often thrilling, new territory. Often competitive.

The best boys to play with were the ones at my townhouse - two brothers the same age as me and my older sister. I learned how to play with fire from one of them, and was always intrigued by the forts he built, and I got really into the elaborate updates he would give us about how our townhouse was at war with the townhouse across from us - I even carried out orders for the protection and honour of "our side"!

Brownies and girl guides were good experiences. Met lots of girls, nice ones, fat ones, weird ones, shy ones, prissy ones, high-achievers with many badges. I wonder how they would think of me? Was I quiet? I definitely never sewed any badges on my scarf. I liked the crafts. And the games. And the nature trips. And the leader, whose name was Owl.

I got a paper route, delivering the Pennysaver once a week in my grandparent's neighbourhood. Usually, by the time I got back from school, my grandpa had stuff the papers with all their inserts - work that I felt should have been my job, but my grandpa insisted on doing this.

I moved to a different neighbourhood again, and lived in a big house on the ocean. I loved exploring on the beach. I loved going out in a boat on the ocean. It was a lot of peaceful exploration. Maybe it was here that I learned about time spent alone, in "nature" - but maybe not. I was in B.C. after all... and my dad used to take me and my sister camping at Longbeach fairly regularly.

I went to high school at a private school, starting there about the same time I moved into a new townhouse - that townhouse was walking distance to Salvation Army, where I loved foraging for used clothes. It was also walking distance to a friend that I'd made in junior high who I'd become really attached to. She set me up with my first boyfriend. She also I think set me up with my first tokes, and first rave, and probably a bunch of other firsts too. First sushi for sure.

The first boyfriend was fun. Sure, it lasted only four months - but it was the first time I'd been in love - for him too. It took me a long time to get over him.

I loved graduation. It was a signal of freedom!

I went to university in Burnaby - lived in residence on top of a mountain. Met people from all over B.C. and many from all over the world. I was exposed to a lot of ideas and perspectives and well...

Okay - that is as far as this alternate history is going to go for tonight. I originally restricted myself to five minutes to write all of this out. And it's now been about 50 - and already, I feel my mind is opened up to a fresh vault of memories.... oh how refreshing it is to remember the good!

Life comes from death

2010-04-30T01:15:00.000-04:00

I am doing surprisingly well. I feel able to look beyond, on bob my way on through some pretty intense things today. I feel like there's even some kind of cosmic beauty in it all.

When I woke up this morning, I was already feeling the weight of a bunch of little setbacks. Like my dismal effort with choir - being the only member who has not only not learned by heart a very complicated piece... I didn't even recognize it when everyone else was bursting with the song! And God! on Monday, I learned that seven video interviews I'd done for the oral history project had no sound! Bloody hell! And I was feeling so stressed about the job I have come to hate, and stressed about not having heard back from the museum guy still. oh, and then there would be that little gem of a comment from my last post, something about my writing being a bunch of drivel and my life being pathetic. Read for yourself. ...or if it was you that wrote that... buddy, do you need a hug? It didn't actually bother me that much, I am just trying to looking for hard evidence of how crummy I felt. I am also really missing my boyfriend, who is still out of the country for more than two weeks.

Nothing too crazy, huh? Just life.
But in my journal-writing this morning, I found myself writing tonnes and tonnes of stuff about continuing. Onward! Because I have no choice! Continue! Even though I just didn't want to muster the energy, and don't know what anything will amount to, I will continue.

I think that got me through the day... through my panic when I lost my wallet - my Visa, my money I had just taken out of the bank machine, my birth certificate, SIN card, all my ID, etc... AND I also lost my notebook for the reporting I do... I had notes from three different unwritten stories in there. That all happened when I was on my way to see my counsellor, who I was determined to discuss an exit strategy with for the job I hate. A couple hours earlier I had been to a harmonica lesson where I basically outlined how miserable I was with the job and how I just had to quit, but had no idea what was next. And then I went to a local elementary school to get a comment for an article I am writing. When I left, on my bike, I guess my backpack was not properly closed, and somewhere between my hood and where my counsellor is, my bag opened up and my wallet and notebook fell out. After going over the whole route four times, I couldn't find anything. No trace. Not even a crumpled up, tire-marked notepad. Nothing. Gone.

So I was panicked about having lost that stuff, but also panicked because I wanted to quit my job and was relying so heavily on my counsellor's guidance, but I had to scrap the appointment as soon as I saw her because of my missing wallet and notes. As I was going back and forth over the route, and feeling so charged... I knew what I had to do - just quit my job! It just rose up within me with certainty! I had to!

What was brilliant was when I got back home, I got an email from the museum guy telling me I was, in fact, getting the money for my project! So... I made the decision to quit without having my counsellor hold my hand, and without the safety net of new income. The universe delivered. I also asked the guy at the flower shop downstairs if I could borrow some money and we ended up having a really good talk, mostly about corruption, and he even gave me a bouquet of flowers! He also convinced me to sit with my convictions about quitting until tomorrow... and quit then, calmly and confidently.

And what was beautiful?? Well, I know it's in there somewhere. The beauty has something to do with losing my wallet and feeling okay. I mean, it's so symbolic of my identity. My identity... so rooted in that birth certificate, which is now... who the hell knows where? It reminds me of an anecdote I read about some kind of plant recently... how the tall mother plant died but its offspring, which came up from it's roots were healthy and thriving some distance away.

I don't need my original birth certificate for a secure sense of identity. I will keep thriving with its death. And the death of so much else. Over time.

Confused?

2010-04-16T22:20:00.001-04:00

well, that last post, when I read it over, did sound a bit confusing. I think I was letting some of my insecurities get the better of me... the museum was not in fact cutting me out of the project. There is value in what I'm doing - yes, on my own terms, but yes, other people believe in the potential of the project as well, which is validating. I have to trust that other people can trust me to do good work! But I do need to keep my values close at hand when it comes to editorial control of this project (ie - i won't censor negative things people have to say about the neighbouhood in favour of a positive-at-all-costs piece of bullshit AND i will respect the dignity of all people i come into contact with in the neighbourhood).

Okay, well there is something else i have been a bit confused about. I was writing and rewriting an email to my partner, and erased the whole damn thing because I wasn't making sense - it was contradictory. and so I am turning to this blog as a space for maybe working it all out.

Here is the meat:

- my life is beginning to take root, and I am feebly gaining networks, reputation, a portfolio, and a better, more confident sense of self in my work

- i am also gaining relative grounding on the homefront, with gardening, becoming a bit more rooted in my neighbourhood, bridging the gap more and more successfully between the city i left and the home I am now creating, fixing up our apartment piece by piece, loving my time here, feeling safe

- i am getting married and reading this annoying book called "the meaning of wife" - granted i haven't gotten to the chapter where the author seeks to resolve some of the major predicaments that women in marriages find themselves in - but i am sick of reading about stats and pop culture indications that married life leads to frustration for married women, whether they decide to be be careerists or to work in the home.

- my fiancé, now out of the country, is tossing around ideas for what to do with his future, and has been advised - by his supervisor - that post-docs are the way to go if you really want to dig your heels further into your research and be secure. (The email I was writing and rewriting was relating to this.)

Aha! Now I see the tension... now I see why I was feeling confused as I was writing to my partner.... I have a way of ignoring all my own needs, or pretending my projects aren't important. I was writing him telling him that I wanted him to make decisions about his future based on his own instincts and interests, and that I will support him, and don't want him to feel pressure to provide for our family - we will figure it out together, etc, etc. But, frankly... what I have just realized is that:

- yes, i am open to moving again if that's what is in his future
- no, i would not move again if it was me leading the way
- yes, i want to build my own life - a delicate balance of home and community and work and art
- yes, i would have to start from scratch again if we were to move again
- yes, if we did move again, i would expect my partner to provide for our family... I mean, more of the onus would have to be on him, because he is the one who is leading the way, and what about me? what about me?

Laterally thinking... there doesn't *have* to be this tension. We have... feebly... talked before about projects together. We haven't really successfully worked on a big project together. well, other than the immense project of a relationship... a home, routines, roadtrips, chores, barbeques, bits and pieces of art and music together... very small bits and pieces. We have dreamed of dreaming up a dream before.... like wouldn't it be a good idea if we embarked on a big project together? I mean, having a family is a big project... but I mean being partners in the creation of something that includes both of our interests (which overlap a lot) and aptitudes (which do not overlap that much), and which creates something that was not there before. Hmmm... what will this be, what will this be?

And, is this a good idea?

I don't know. I am not ready to commit to the idea of creating a common project together, but I do think it is a good option for us... especially if we plan to be more nomadic in our lives. Something so that I have continuity, so that I am not some second-ranked follower. I'm better than that, I deserve to think of myself in higher regards. I think as the next two years shake out, we may have a better idea of our futures together. So for now, I continue to dig my heels in here, and now I know what I am going to say to my partner.

Crying over spilled milk

2010-03-31T21:45:00.001-04:00

I've gone and made the mistake of getting worked up over money, when really, I have all the money I need. I have this part-time job with an eldery woman. It's normally okay. Sometimes it blows, but I get to eat a good meal each night I work with her, and it pays well enough. Not super-stimulating or challenging, but it's all I need for money right now.

Well, I started to treat this other pursuit of mine *like* a job, because it might pay off, financially. I started working on this oral history project for the very interesting neighbourhood I live in - very densely populated, more than 60% of its residents are born outside of Canada and come from all over the place, and it's also closed in on all sides by highway, railroad tracks, and a big long 'apartheid' fence and hedge built by the neighbouring affluent community. Anyway - it was for passion's sake that I was doing this project. But then I also tried to get funding for it.

A certain unnamed city museum became really interested in my project and started working with me to get some funding for it. A museum representative piggy-backed on to a meeting I set up with my local politician and presented a very quickly put-together funding proposal with his museum's fancy letterhead, and my name at the bottom. There's a lot more to it than this, but after several weeks have passed, it looks like that museum will get the funding. And it also looks like they are cutting me out of the project - or at least I am so far being left in the dark by them. IT MAKES ME REALLY ANGRY. And I feel like this was an underhanded move on the museum's part. I feel like the work I have begun doing is really important and my project deserves funding. But at the same time, I feel like getting funding could make my project a sell-out. That is, I could concentrate more on what the funders want, rather than follow my own original passion and impulses. And the project would (perhaps was already veering in the direction of) feeling more like work than a labour of love.

So, yes I am ANGRY and UPSET about the way I've been treated by the museum guy. (although at the same time, I do not know definitively he is cutting me out, he could just be busy and non-communicative). But also, I want to challenge myself to take a breather and get back to the original impulse for the project.

The money is not important. I will create value for myself by doing something that I feel is valuable. Pursuing money started to feel really invaluable to me.

But here is a fear... I am a 30 year-old woman devoting herself to something that others may not value or appreciate. Wait! Good for me!! I am doing it because *I* want to do it. Stick with that, girl! Fuck the funders. They are self-interested anyway. Unless they see me as doing something that will benefit them, they will not be interested. Okay, fine. I will do whatever has value to me, and if that has no value to them, fuck 'em. Ha!

I have told a lot of neighbourhood people about the project, and there is a lot of interest so far. I tell people I will have it done for a certain date, and I say that so I have pressure to actually finish it. But I must keep in mind, this is *my* project. My ideas, my editorial control, my final documentary. And it's also new territory for me. This is exciting. Go with it. I have three months to devote to this, as I want to have it done by the end of June. Good.

Now, at the same time, I need to treat this as one project amongst many. Which it is.

I have been held up for months on my Artist's Way course and I know it's because I'm avoiding my little problem of workaholism. That's a funny problem for an anti-capitalist to have, isn't it??

All those things I wrote about in my last post, I want to bring back to the forefront of my life. I want to pay attention to that which I have put on the backburner because of my silly little obsession with being taken seriously by people in power. Which I think is at the root of my workaholism, and you know, clearly relates to mommy issues.

So here's a recap of all the things I wrote about in the last post, and an update on how it's been going:

Choir: since it's weekly, I do it. It's rad. I love it. Okay, I am not in love with all the religious songs we are singing, but my voice and music skills are thriving. It really showed when I went out and sang karaoke in a bar this past Saturday. I had the whole room clapping and singing along to my version of CCR's Looking out my Backdoor. I was dancing and doing my honky tonk voice and stomp, and at one point a harmonica-playing dude jumped outta nowhere and joined me!

Harmonica: It's not as often as what I'd like, but I super enjoyed playing with my little sister while I was back home visiting. She played guitar, then piano, and since she is so skilled, she supported my playing 100%. And, since we trust each other so much, it was just pure freedom. So so fun.

Getting fit and focused at the Y: Yes, I would like to go slightly more often. But each day I go, including today, I feel energized and hawt.

Writing, for me, for some papers: I have been raking in much more than usual this past month with freelancing gigs. The stories take up too much time sometimes, and sometimes I like doing them, sometimes they are lame. I really liked writing about the collective kitchen organization that runs just down the street from me. In fact, I was thinking I might join a group. Anyway - writing for myself gets the big thumbs down. Fail!! Well, one good thing was when a friend and I gave each other deadlines for out personal writing projects. He was having a hard time getting started on his project, and I was having a hard time getting going on my creation story. So, well. Maybe it's time to do that deadline for each other again.

Playing with paints, other arty stuff: a little bit. I made my hubby a beautiful postcard and poem and mailed it to him. That was the last project. I'm more than due for another.

Speaking my french, ecouter, parler le francais: Yeah, it goes.

Feeding the birds: No, I did not do this.

Gettin' hitched, dreaming creatively about it, making plans for the party: Yes, it is going okay. I would rate it at 50%. My mom shot down my idea to have her and my mother-in-law carrying me and my sweetie in using seperate wheelbarrows. (yeah, so feel free to take that idea and run). I haven't yet figured out what flowers to grow for the ceremony. But! Yes I did buy my dress just the other day! And I love it and this it's sweet and sexy and very me.

Seeking out storytellers from my neighbourhood and recording them: Yes - it's all starting big time this Saturday, and I will do a bit of filming for eight full days!

Planting stuff: Bought lots of heritage seeds, planted some early stuff - eggplant and red pepper. And have been enjoying digging through worm compost and mixing last summer's soil with the worm castings. Very relaxing! A friend joined me one day and it was good for both of us.

Seeking women I like. Talking shamelessly, digging, exploring, loving: Yeah, I would say I could do more in this department. But some developments have been made.

Taking time for meditation - how long will this Buddhist thing last: I want to do tomorrow night, but don't know if I will get off work in time. If I ask, she will let me go.

All the little pieces, jumbled, with some promise

2010-02-08T23:04:00.005-05:00

That's how my life feels right now - with all it's different elements. Like it's all going to come together, but I don't know how. All these burgeoning bits and pieces of my life - some things are starting to take shape - they feel natural. Or, I feel like I belong. Or, I don't know. Sometimes they feel unnatural still, but I think it's all gonna shake out in the not too distant future.

All these different elements are going to somehow come together... around me.

Choir, me singing.
Honking, on the harmonica.
Getting fit and focused at the Y.
Writing, for me, for some papers.
Playing with paints, other arty stuff.
Speaking my french, ecouter, parler le francais
Feeding the birds?
Gettin' hitched, dreaming creatively about it, making plans for the party.
Seeking out storytellers from my neighbourhood and recording them.
Planting stuff - getting more interested in plant life. Seeds! Worms!
Seeking women I like. Talking shamelessly, digging, exploring, loving.
Taking time for meditation - how long will this Buddhist thing last?

These things are all getting layered on top of the more basic needs I've managed to meet. Like love and trust, and security. A good place to live, good food to eat. I am no longer hustling for work all the time - I recently hooked up with a decently-paying part-time gig - I finally have some reliable income again, and a regular schedule.

At the same time, none of this is me, and all of this is me. It's amazing what I can create around me - the bits and pieces I have sniffed out and chosen since moving to this new city. If I look at each little piece, I can trace the threads back further into my life. Oh, it all makes sense. It starts to make sense.

Terrifying thought

2010-01-28T20:32:00.000-05:00

What if you woke up one day, and all the artists and intellectuals you relied on in your life were suddenly gone? Maybe they all died. You don't know. They're just gone. And you're left alone, in a society of corruption, blank stares, total acceptance of the status quo. What do you do?

I've been struck with this thought the last few days. I've found myself in a few situations where it's me that must be relied upon for the critical analysis, the groundbreaking perspective, the bursting forth of creative energy, of colour, of light.... and I have this terrifying fear that I'm not up for the challenge.

That I've spent too long riding along in total reliance of others for their brilliant contributions to life. They make my day. I sit, I take it in. I gain my sense of moral superiority for seeing a bird's eye view of it all, but I haven't been doing the work.

And this sci-fi horror has struck me. What if all the people that have been doing the work are gone?

What do you do? What would I do? What am I going to do?

This horror is too real. I have a responsibility to not ever be in that situation. I've had a good education, been given tonnes of opportunities, and I have to do something meaningful with my life.

Some simple explanations for this idea coming into my mind are the deaths of three people I have admired dying over the last several days: PK Page, Howard Zinn, and JD Salinger. That, and my beau just got on a plane for a long trip, and I am now void of the daily stimulation of hearing his thoughts.

Well, good. It'll do me good. This is the wake up call I need to start taking responsibility for my brain, and my power as a human being.

To all the artificial poop shuters, and admirers.... I'm back.

2010-01-20T17:07:00.004-05:00

So after a long, long hiatus spent doing things other than reflecting on my terd, I've decided to start writing my blog again. Thanks to everyone who has sent encouraging posts, and telling me how the blog has impacted your life. This is truly the best feedback I could possibly ever get. Very very touching. Much of this hiatus I've spent wondering how and where to apply my creative spirit, my writing talents. I've strayed pretty far from my own heart, trying to get paid for writing, trying to find my way. What really works for me I've discovered: writing frankly about my own experiences. Thanks for being an audience. And reminding me that my honesty isn't something to be ashamed of, or to hide. And in fact, it's something that others find healing. It feels very very good to know I can be of real value to others. Thank you for your comments. I'm back, regardless of who's listening.

I want to continue erupting myself on this blog, but I want open up the content to other aspects of life... it'll be more holistic, but I imagine each post will be influenced my ostomy-induced philosophy of bare-all, inside-out kind of self exposure.

I have some updates and interesting ostomy-related anecdotes to share.

1. The very first person I made out with without disclosing my ostomy status to beforehand, was totally aware of what an ostomy was anyway. He said when it came up the next day, or maybe days later, he knew exactly what it was when he felt it and saw it on my body because his dad has had an ostomy for at least three decades. How bizarre is that??

2. Said makeout partner is now my life partner, doesn't bat an eyelash at the ostomy. Though the first time I pooed on him by way of bedtime bag-leaking, he was a wee bit traumatized. When I came out of the bathroom after doing a bag-change that took me at least several minutes, he was still at the kitchen sink washing his arm, which was the primary point of contact.

3. Said dad, my boyfriend's partner, will be my father-in-law since the dude and I decided to actually tie the knot. Said dad and I have had some funny, but mostly pretty reserved talks about our ostomies. We've showed each other our supplies. Said dad doesn't talk about his ostomy with others. Said dad said he doesn't hang his identity on his ostomy, and said dad has a very active, interesting, dynamic life. I compare myself to him, and wonder what the hell holds me back from my active, interesting, dynamic life. Seriously. There've been a lot of changes in my life in the last couple years, primarily moving provinces and moving in with this guy I love. Sadly, my social and work life has become decidedly inactive, flat, and dull. I've been going through stuff. I've been shedding some things, reevaluating some things, and maybe I've shed a lot of stuff I'd outgrown. But I shed something else... forthcoming, naked honesty. Fucking shamelessness. I want it back. I wonder if, unlike said dad, my identity needs to be kind of reunited with my ostomy, my body, my self-perception, my heart and soul... my insides need to be reunited with my outsides. Body, mind, soul... I could spring off into some Buddhist talk of one-ness too here, but maybe I've made my point.

3. I'm now really non-chalant about going to public pools and getting naked in the shower. Barely barely phases me. Yeah, fucking stare why don't you.

4. The shape of my tummy has changed. I've fattened. This happens to people who are in love, I've heard. I think it's laziness and inertia brought on my the sheer comfort of being able to hang about like a slug with someone you love who loves you back. Sounds unhealthy. And like something I need to do something about. Get my life back, my spirit back, my body back. It's like I've fused with this guy I intend to marry, and in the meantime have forgotten about everything that makes me me. That's terribly unhealthy, isn't it?? I know! I don't want to give up what I have with him - unconditional love, someone I trust, and all that. But I do want to give up on this ragged, insecure, poverty-stricken mess I've become in the last two years or so. Do you know what I was doing in the course of becoming this ungrounded, ineffective weirdo?? My (potentially simplitistic) self-analysis informs I was making sure he'd still love me. I'm not going to wax on about how that may or may not be fucked up, like what a self-destructive, untrusting way to ensure unconditional love it was. But it was. And I gotta chuck that out the window and start being the righteous woman I'M in love with. haha. Anyway, with this new roundness in my tummy and all, my flanges have had some ongoing leakage problems, and I'm now experimenting with new convex flanges. They are more expensive, but if I get longer wear outta them... well, we'll see how the shape of my tummy, and the rest of my life, changes.

Not hiding

2007-10-15T10:26:00.000-04:00

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

2007-06-13T06:59:00.000-04:00

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!

2007-06-07T01:35:00.000-04:00

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...

2007-05-17T23:53:00.000-04:00

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

2007-04-16T04:37:00.000-04:00

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?

2007-04-09T08:13:00.000-04:00

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

2007-02-09T04:12:00.000-05:00

I shat myself at school

2007-02-05T02:29:00.000-05:00

...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?

2007-01-16T02:42:00.000-05:00

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

2007-01-05T19:10:00.000-05:00

...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

2007-01-02T16:25:00.000-05:00

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

2006-11-05T05:39:00.000-05:00

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

2006-09-26T03:38:00.000-04:00

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!

2006-07-24T03:31:00.000-04:00

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

2006-07-18T04:34:00.000-04:00

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...

2006-07-04T03:29:00.000-04:00

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!

2006-06-21T03:37:00.000-04:00

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

2006-06-14T02:22:00.000-04:00

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!

2006-05-31T04:04:00.000-04:00

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

2006-05-27T14:46:00.000-04:00

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.

2006-05-24T06:15:00.000-04:00

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

2006-05-18T03:30:00.000-04:00

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

2006-05-17T02:44:00.000-04:00

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

2006-05-12T02:50:00.000-04:00

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.

I guess it's more red than pink...

2006-05-08T23:31:00.000-04:00

but myredbutton just didn't have the double-entendre effect I was going for.

My Big ol' Bowel bash... just around the corner

2006-05-05T02:11:00.000-04:00

When I started this blog, one of my first posts announced that May 7th would be my fourth anniversary without an anus and with an ileostomy, and that I would be throwing a party.

With May 7th being just days away, I am feeling somewhat unprepared. The venue is booked (a small community room because I live in a shoe box) (a nice shoebox, but a shoebox), I've invited people (I'm guessing about 15-20 people will show), and the food and drinks are well on their way to be taken care of.

But those are silly details. The meat of the party - the big juicy beef steak - is still out of sight, roaming around in some far-off field. I have big plans for this shindig, and yet as the date looms closer and closer, the more pressure I am feeling to come up with something brilliant.

I know I'll have some giant epiphany for what I am going to plan and say to people... I just really don't know what it's going to look like. I'm not even sure what I'll wear (oh my!)

My intention is to somehow convey to my close friends and family - all of whom have demonstrated themselves to be totally osto-friendly, not osto-phobic- the great need we all have to become more open and honest about our poo and our digestive processes in general. I'm not being tongue-in-cheek here at all. I'm dead serious. I know I'm biased, but think it's one of the most fucked up things in the world that people get so strange when they talk about shit. Why do we need cute euphemisms for poo? Why do people say things like "oh my god that was way too much information" when someone mentions gas or bloating? Why do I have to feel so goddamn embarrassed about the fact that I poo into a bag?

If I had been raised in world where it was okay to talk about my poo, I wouldn't even have this fucking bag. I hid the fact that I was bleeding out of my anus. I hid the fact it felt like I was shitting razor blades out of my bum. I didn't tell anyone when I stuck my finger up my bum only to feel raw, raw, raw flesh. I didn't talk about the nausea every time I put food in my mouth, or the pain. And I had to put a wad of toilet paper between my ass cheeks after every wretched, stinky bowel movement because of the crud that would leak out in between secretive trips to the toilet. I didn't want anyone to know about this, because I felt like a total freak. I thought that I was as freakish as the half-beast half-human freaks and the six-legged babies that I would see on the cover of The National Enquirer while waiting in line at the grocery store with my mom. I honestly thought that if anyone found out that I was bleeding out of my bum I would be the next person on the covers of those tabloids.

I was 10 when all this started, and the silence went on for 1.5 years. I became emaciated and malnourished. I missed puberty when my friends were blossoming. My large bowel became so bloodied and raw that it is really no surprise that it couldn't stay with me for the rest of my life.

So, yeah, I think that's kind of what I want to broach when I have this party. I mean, I don't want to get into the details too much, but I do certainly want to illustrate the need for being more accepting and open about discussing digestion. It's a major social problem that needs to be addressed. And while I know there are more pressing issues like child abuse, rape, murder and torture that are more important than this cause, I still think it's important.

I know it's only three more days until the party, but if you're reading this, and you feel similarly to me - would you mind posting a quick note of support about why you feel the way you do, even if it's anonymous? I just thought - if I can post all of these responses on a wall at my party, people can read them and see how the stigma around digestive issues is a big problem for lots of people, not just this one little pink button in their corner of the world.

Is it wrong to be eagerly anticipating an ileoscopy?

2006-05-01T02:44:00.000-04:00

Several posts ago I mentioned I was having some pain. It lasted 2-3 weeks on-and-off and although it wasn't terrible, it scared me. Shock and surprise, it went away with the arrival of a two-week vacation.

[note to self: prioritize work/life balance.]

I made an appointment with my GI and he suggested that a scope was in order, an ileoscopy. I haven't had an invasive diagnostic procedure since the ostomy surgery; MRIs, ultrasounds and CT Scans don't count. I'm talking prodding. And frankly, the prospect of prodding, invasive procedures excites me.

Given my fear of stoma rape, this might come as a shock. Um, given popular opinion and some might argue sanity, this might come as a shock. Cramming a tube with a camera mounted on the end the wrong way up my digestion tract? And I'm all "bring it on!?" It's true.

Why?

Drugs. It's true, I admit it, I am not ashamed. I am aware. It feels good. Come Tuesday, the dopey euporia I'll experience as white-clothed technicians and my gastro-enterologist float about me like hazy spirits will be the just rewards I crave for the pain I've endured. My on-going self-analysis tells me this is a problematic way of thinking about things. A reward? Like postive-reinforcement for having pain? But then again, my hedonistic nature overrides that impulse and says oh for the love of god just enjoy yourself. So I do.

Unabashed Gut Spilling

2006-04-26T00:45:00.000-04:00

In March I was interviewed about having Crohn's Disease for a health show on a local radio station. Click this here text to hear the 48-minute editted broadcast.

The interview was pre-recorded, and I didn't know when it was going to air. One day in late March I hopped into my car at about a quarter to the hour, and heard my voice over the radio... talking about poo and the like! God it was weird hearing myself going on.

A quick disclaimer: In retrospect, I realized I was bullshitting somewhat about the advances made in diagnostic procedures... I suggested they had changed since the '90s and then made reference to a small camera that people can swallow which takes pictures of one's intestinal tract. This, as far as I know has been invented but is not in common usage. I think I made it sound like this procedure is getting used a lot, and kind of feel like I have my head up my ass on this issue, so to speak.

Easy, breezy travel tale...

2006-04-23T14:16:00.000-04:00

I just returned from out-of-town, and I was gone for 15 days total. Guess how many times I changed my flange. Guess. No really, guess. Once! How crazy is that? Of course, I changed my bag every couple of days as usual, but the flange must have been sealed by angels with ostomies. I changed my flange at home the day I left, then one week into the trip, and I will probably change it later on today.

This is one case where I am glad I didn't use everything I packed- I brought enough supplies to do a change every day (and based on past experience, that is not excessive or over-cautious... a trip to Florida a few years ago had me changing my bag daily)!

In the face of gendered clothing

2006-04-16T16:44:00.000-04:00

In the summer of 2003, I hosted a travelling marketing tour for kids. Appearance, according to my boss, was everything. This guy, who I discovered seemed to only hire women who were all tits and teeth, also had some pretty firm ideas about how women should be dressed. He seemed to think that since I was slim with large breasts, it would be a foolish business-mistake to not use that to maximize our audience's size and attention span.

Before the tour started, my boss had t-shirts made for all of the hosts without any consultation. When I saw the shirts he'd ordered for all of the girls, I was a bit... you could say... hesitant. They were tiny and went down just past my belly button; and this was before they were washed. Since the job called for a lot of moving around on stage in front of an audience, I was starting to feel really uncomfortable about the prospect of being constantly paranoid that my bag could be poking out beneath the tiny tee at any point during a show.

The guys had regular t-shirts, which I looked at with envy.

Fortunately, my boss announced to everyone that he hadn't yet ordered enough for everyone to have a decent supply of shirts for the summer, so if we wanted any particular sizes, to speak up now. Thank god! I quietly requested some men's shirts. With the way he looked at me in front of everyone, I might as well have asked him to order me a strap-on dildo.

With all my co-workers in the room, only one of whom knew about my bag, I looked him in the eye in the sharpest way I could that might cause him to remember that I had an ostomy and said, "I don't feel comfortable wearing the smaller shirts." This time, I might as well have been speaking Yiddish. He was unbendable and oblivious, and it wasn't until I left the room with tears welled-up in my eyes that he clued into the fact that my request maybe wasn't just another one of my crazy liberated-woman ideas.

In the end, I got the shirts. I asked him the next day if he realized why I was so upset and he apologized saying he didn't realize until later that it was the ostomy that was the issue and that he felt like a jerk.

But what I didn't ask was this: ostomy-or not, does a woman really need a better reason than feeling uncomfortable to say no to wearing something that's too revealing for her?

Back at the Beach

2006-04-13T23:46:00.000-04:00

One of the many people I met while working as a nude beach vendor was a fellow ostomate. I didn't realize he was one the first couple of times I saw him, but it finally clicked when I realized his little pouch never shifted from covering his lower-right abdomen... of course, it was a cover for his ostomy. Just like my little apron was a cover for mine.

The next time I served him, I asked him about his ostomy. There was a distinct language barrier between us, but I'm fairly certain that he overplayed it and feigned misunderstanding, until I lifted my apron to show him that I had one too.

There was a flash of surprise and relief on his behalf, and we exchanged smiles of understanding. I was amazed that it took me- an ostomate- so long to figure out what he was hiding inside that rectangular pouch that hung from a belt around his waist. I guess it shows how truly concealable ostomies can be.

I sold juice to my fellow ostomate several more times before the end of summer. We didn't talk about our ostomies or anything; it just a graceful secret that somehow meant we were connected.

My huge underpants

2006-04-07T03:19:00.000-04:00

Pre-surgery, I think I used to call them panties. That word no longer suffices to describe my undergarments. I hear "panties" and I think dainty and pretty. No, I wear underpants.

There was a short time when I tried to wear pretty little panties post-surgery, but I can't stand the feeling of my bag not being totally contained in a strong cotton weave. Unless it's all packed inside, gas will inevitably bulge over the top of low-riding underwear. Plus, little panties just aren't strong enough to keep my poopy bundle packed tight against me. Not that I like it super tight, but tight enough so that say, 200mL of soupy poop will be squished out somewhat evenly rather than accumulated in a clearly visibly lump-in-my-pants at the bottom of the bag.

I've slowly come to embrace and love the granny underpants I wear. My underwear drawer is filled with no less than 20, maybe 30 pairs, mostly black, but a few white ones too. Apparently, offering brilliantly-coloured or super-cute choices to consumers of this type of underwear is not a priority for the designers (yes, designers of Elita, I'm talkin' to you).

Of course, I had to get over the stigma of granny underpants. Not traditionally cool, not traditionally sexy, I've had to make them my own. It was a couple years before I could stand in front of a full length mirror and like the way I looked in them; I've even built up enough confidence to look at myself in my granny underwear and think: nice.

Now naked is a different story. I'm not sure there will ever be a day where I'll walk nude past a mirror and think my god, you sure wear that bag of shite well girl! work it! Who knows though, it has only been four years.

The Fear of Stoma Rape

2006-04-03T23:57:00.000-04:00

Somewhere along the line I developed this odd but overwhelming fear that someone might rape me in my stoma. It happened when I was walking home one night, and for some reason, was having rape scenarios run through my head. I figured that if someone was sick-in-the-head enough to rape a woman, chances are the sight of my ostomy and/or lack of anus could make them do something REALLY fucked up.

Then I graphically imagined myself getting raped in the stoma. Normally I have a hard time freaking myself out, even though I have a fairly wild imagination. This time was different. The fear of getting raped in the stoma actually haunted me for a month or two.

I imagined my intestine ripping apart from the skin of my belly, blood and feces spilling everywhere, including my insides. And then the girth of the penis stretching and tearing the intestine and the hole in my skin even further. I imagined blood and feces running down the sloped ground of the hidden embankment where my crude vision took place, and being left for dead there in the cold.

I'm pretty much over the fear now. But it led me to do some research on the Internet. I came across ostomates' discussions where a girl said her boyfriend was dying to fuck her in the stoma, and one guy's professed yearning to fuck a stoma. Then I spoke with some female ostomates I know who admitted they were afraid of what I had been afraid of too.

Soft, wet, warm, tight hole... should I really be surprised?

Poopy Predicament

2006-03-31T16:51:00.000-05:00

Last summer, I got a free haircut and cheap colour from a friend who was attending hairdesign school. I biked there and I think I kind of knew on the way there that my bag was due for a changing, but I definitely did not anticipate this.

After the shampoo and cut, my flange started leaking, mid-colour. Thankfully it was a friend cutting my hair, one who knew about my bag. And it was a stroke of luck that I was wearing one of those big capes that go down to your knees. We shuffled off to the washroom together and he didn't make a big deal of it at all, he just said "what can I do for you?" which was the most useful kind of support I could have gotten. The leak was pretty bad. My underwear was shot and my pants were stained.

After a first failed attempt to just tape up the leak, I had to pull a MacGyver. My friend brought me some heavy duty tape and clear plastic that he wangled from a receptionist. I ended up taping this large rectangle of plastic on my right abdomen, hips, and even a bit down my leg. So the flange was still leaking, it was just leaking into this transparent reservoir and sitting against my skin. Rad!

Actually, it really was. The seal was good, and I even took my sweet time heading home after my hair was done.

Baring All

2006-03-29T02:53:00.000-05:00

Before my abdomen was cut open, I was a fairly regular nudist. Not in random places, but at a really popular and amazing nude beach in my city. After my first surgery, which was only a resection, I lamented that there would clearly be no more of that. Who would want to be seen on the beach with a giant scar down their tummy?

You could say my perspective has changed.

Since then, I got the ostomy. I visited the beach about three months after that surgery. It was challenging, but I did get naked. For the most part, I just hung out on my blanket with my boyfriend feeling a bit awkward, but I knew it was going to take work to overcome the shame I was feeling. I built up the nerve to go swimming, which meant walking past people with my bag flip-flopping around. I kept my head down most of the time, but at one point did look up to see two men playing frisbee who kind of stopped what they were doing to get a second look. It wasn't really rude, they were just shocked I think. The whole thing made me feel a bit proud, and I went to the beach a couple more times in 2002 and then again in the summer of 2003. I couldn't have done it without supportive friends, and each time got a little easier.

In 2004, I became a nude vendor at the beach. I set up my own licensed little business at the beach and spent part of my summer days walking up and down the beach selling fruit, water and juice. I wore a little apron to keep my change in and this hid my bag, but as I got to know the regulars, they got to know me, and it just became a matter-of-fact that I had a bag. I would often take the apron off to go swimming, and while I've never been able to do this without feeling somewhat self-conscious (and don't know if I ever will), each time it does get easier and I really believe that there is value in me challenging myself to do this.

Don't get me wrong; I mean I do have other reasons to go to the beach too. It's beautiful, fun, relaxed, and a totally social atmosphere; and it's not all about being the hottest person there, in fact, the folks vying for that title kind of look like fools on the beach. I've found the beach, in many ways to be a place where people can find acceptance, for both eccentric personalities and body types.

I have many memorable and interesting stories from the beach, which I want to share on this blog, but one in particular comes to mind right now. When I was vending two summers ago, I walked past a woman sitting with her friends. She was a burn victim, and it was obviously a really bad fire. It was really comforting to see her on the beach, baring all, since every inch of her body was scarred and tight. I thought she was so brave and I admired her, and after thinking about it, I figured that if that was my reaction toward her, then maybe others might perceive me in the same way. Maybe the reason that the beach is such a place of self-acceptance is because we all get a chance to see others put their marks, scars, irregularities, or whatever on display, and it in turn tells us that we are okay.

Sub-zero Trauma

2006-03-26T15:01:00.000-05:00

Since the surgery, I haven't been able to sleep for more than six hours straight without getting up to empty the Good Year Blimp. It's gotten to the point where I can practically sleep-walk to the can, and go through all the motions of emptying my bag without much thinking. I've gotten used to it and it's only when I think about it heavily that I feel sorry for myself and decry the ill-effects this nightly disturbance to my REM cycle must be having on my complexion.

Pooping in the middle of the night whilst camping, is not quite so easy.

When I'm camping, it's a whole different routine. The bathroom- or outhouse in most cases- is often a fair walk away, I have to put on my shoes, there's no simple light switch, it's cold, unfamiliar, and basically it's just not a smooth ride.

I went camping with my sister and her fiancee in February. It was camping in the snow, which would not at all have been enticing to me were it not for the hotsprings that were nearby.

Anyway, I came up with a brilliant plan before going to sleep that would avert all the bother and discomfort of having to put my coat and shoes on and trudge up the hill to the outhouse to empty my poo-filled bag when I would inevitably wake up at about 4am, sleep-filled and disoriented.

I had a couple of sturdy grocery bags, and the plan was to simply get up, unzip the tent, poke part of my body outside of it, and empty the contents of my bag into said plastic reservoir, double-lined of course. Then I'd wipe, re-attach the velcro, roll that puppy back up, zip up the tent and climb back into my down-filled cocoon of warmth and sweet dreams. Easy frickin' peezy.

Ha!

When my bag got to be quite full, I did what I often do in the middle of the night to buy myself some time, or to let myself finish off some amazing dream. I released some gas. And boy, there was no shortage of that given the navy bean soup my sister had boiled up for an appetizer that night.

About an hour or so later, it was time. I began rustling around in my sleeping bag to get myself out, and grab the plastic bags so I could execute the genius plan. But as I was rustling out of my bag, I noticed the rankin' smell coming out of it. I thought, "my god! that gas was potent," assuming that I had simply been marinating in a dutch oven of navy bean farts until I allowed even a peep of air to escape 60 some odd minutes later.

So the plan changed. Believing that my gas was that bad, I figured it would be a great disservice to my sister and her beau if I let the poop out in the vicinity of them sleeping. So on went my shoes, and plastic bags in hand, I headed outside of the tent, in the snow, the falling snow, to empty my bag several steps away from the tent. So I go to grab my bag and what do I feel? Wet fleece pants. And then I reach up to my stoma, half panicked, to confirm - oh my god- that it was naked.

Seconds later, my sister woke up to the tune of me saying "oh fuck! oh fuck! oh fuck!" She asked what was going on, and so I told her I lost my bag somewhere between my sleeping bag and where I was standing now. Seconds after that, the worst-case scenario is confirmed. My loving sister discovered that my bag of poo and it's contents were, for the most part anyway, inside my sleeping bag.

Scheiße!

Not only was the poop spread wildly about my sleeping bag, I also found it was all down me, on my shirt, and even on my wool scarf. I was poo-soaked and standing in the snow, frozen. Frozen, yes, because I was cold, but moreso, frozen not knowing quite how to proceed.

About 15-20 minutes later, I had managed to clothe myself in clean garments and was more or less hating myself and wishing I had not come on the trip as I climbed into the tent. My sister has rolled up my sleeping bag and pushed it to the end of the tent. She then told me that I had no choice but to climb into her sleeping bag with her.

Now that is love.

Until the sun came up, we spooned. Very uncomfortably, mind you. I barely slept, and when one of us wanted to shuffle, the other one had to cooperate with every motion or risk suffocation. The fabric of her sleeping bag was stretched tight and there was not enough extra room to even insert something like a sheet of paper into the bag.

She got up with the sun and headed for the hotsprings while I, still feeling miserable, tried to sleep as long as I could. It was embarassing and horrid, but my fellow-campers treated me with nothing but respect and love. After the self-loathing and sense that my entire weekend had been ruined, I managed to have a good time for the rest of the trip and now, with this incredible story, I am that much richer.

Crusty and Bitter

2006-03-24T12:57:00.000-05:00

Is what that last entry sounds like to me. My mood this past week has been pretty bad. About a week ago, I started getting pain in my abdomen- it's Crohn's pain. I know what it feels like and it scares the hell out of me.

I've jumped back into a *kinda* strict diet. I never eat wheat anyway, but now I'm avoiding red meat, dairy, sugary or overly-processed stuff and am totally cutting out the deep-fried stuff (lies! I ate some Hari-Krishnan deep-fried potato dish yesterday). What am I eating? Rice, corn and soy-based stuff, nuts, seeds, veggies, fish, poultry, yoghurt, and lots of juice. And my loving boyfriend is mixing up a sludgy concoction of aloe vera juice, Udo's Ultimate Blend, Greens Rx and juice for me in the morning.

I'm also drawing the line at work. No more doing other people's jobs, no more working on the weekends, no more insanity.

This would be the second time in four years the pain has inched back into my life. I nipped it in the bud the first time and I'll do it again. Life without Crohn's Disease is too good.

Enter my uterus...

2006-03-22T02:58:00.000-05:00

Of all the things that could have started bleeding after my surgery, I guess I should be thankful this was the biggest.

But it was truly inconvenient and just my luck that my period would hit the day after ostomy surgery.

It was also kind of a neat coincidence that I had surgery on the same week that nurses-in-training would be floating about the post-op ward looking for odd jobs.

One such odd job was giving a sponge-bath to the new ostomate in the corner room. Me!

I don't remember her name. She was nice, but totally without experience and probably assumed that what I had to say was simply demerol-induced, hallucinogenic, paranoid ramblings.

No. As a leant over the sink, nauseous, I tried to communicate that I had my period (that part she got) AND that my anus had just been removed and there was a gaping wound between my ass cheeks, which she should be careful about wiping around. That entire second clause she either misheard, or she was the devil's minion.

The giant front-to-back swoop she made with that warm soapy cloth probably did clear away a mess of clotted menstrual blood. This might have felt nice if my drugged-up body had a chance to register that 0.02 seconds before the abrasive lump of towel was shoved and scraped across the raw open hole that just 72 hours before had housed my anus.

The details of what followed this are blurry. Extreme pain, however, played a large role.

She came to visit several times in the week or so that followed. I think she felt too weird about it to apologize but she was extra nice. It wasn't until my last day in the hospital that I was able to forgive her and actually say something mildly pleasant to her. I knew all along it wasn't really her fault; it was an accident, right? But under the circumstances I just didn't have the energy to be nice and pretend like I wasn't totally scarred by the event.

On the bright side, I imagine that as an RN now, she probably gives the gentlest sponge-baths ever.

People I haven't seen in over four years

2006-03-20T03:52:00.000-05:00

Occasionally I'll come across these people, and of course, they don't know about my pink button.

This happened on Friday night, when I ran into a woman I used to go to junior high with. We used to hang out a fair bit back then, and if I had my ostomy back then, she would have known about it. I've run into her several times over the past year and chatted, but this time we decided to really hang out. We were with a couple other people, having a really good time, and she and I went into her bedroom to get dressed up to go out dancing.

When we were changing, it felt weird to not tell her. And then I got this lump in my throat- this total block- because it was bothering me so much that she didn't know. So I told her. Since she had known me when I was first diagnosed with Crohn's, I started with some history. I explained how the scarring got worse and worse over the years with recurrent inflammations and Prednisone usage. I said how in the end, it all just had to be taken out, and then I told her how my stoma was formed by my surgeon.

She was really sympathetic. She knew what a colostomy was, and my guess is that she had probably had some laughs at the expense of some hypothetical ostomate before... but she also looked me in the eye and said that if I ever needed to talk about things, she'd be there for me. And then she totally opened up to me about a health issue she was having.

On top of it just being nice to have this heart-to-heart, I felt like I had come clean. We had done so much catching up about everything else; by avoiding discussing my ostomy, I felt like I wasn't being true to myself or to her. Once I told her, I felt so much freer to be myself.

#1 reading experience, gone

2006-03-20T02:00:00.000-05:00

Previous to that four-hour surgery that displaced my digestive point of departure, from ass crack to abdomen... I used to enjoy sitting on the toilet and reading.

It was really relaxing. It was healthy. It was free from distractions.

Toilet time, for the anal pooper is simmer down time for the body and mind. It's a time for peristalsis and self-lubrication. It's a time for reflection, wandering thoughts, even epiphanies. It's a good place to read too.

Back in the day, I used to own one of those wire book/magazine baskets that hook on the lip of the toilet tank. It was filled with good material that just begging to be read. And if the circumstances were right, I'd stay on the john for as much as an hour, filtering through these books, magazines, and newspapers thoughtfully. I remember many times getting up off the toilet with a deep, red U-shape branded on my ass cheeks. It was a good place to read not only because I could really get into a book without the usual distractions, but it also gave me the time I needed to get everything out. Even though my poo was often very liquidy, it was rare that I would actually be able to expell it all in one sitting, unless I took that extra time to relax. The filling mechanism in my rectum was scarred and didn't work properly. Plus, the colon just north of that was a strictured mess. If I didn't take the extra time, this would be the order of events on many an evening:

00m:00s = sense of urgency strikes, run to toilet to avoid disaster
00m:15s = squirt out about 6 ounces of poo
00m:30s = wipe chafed bum, do pants up, wash dried-out hands, leave
04m:30s = repeat, 6-12 times

So taking my time in the toilet was very worthwhile. My favourite set-up would involve a really good article and my 20+ pound cat purring away on my naked lap. In fact, getting that big red horseshoe mark on my ass was synonymous with having been on a small vacation.

Now, I don't do that. Sitting on the toilet now is purely mechanical. I go in, I pull my pants down, I unroll the end of the back, undo the velcro strips, let it pour out, squeeze out the extra, wipe, wipe, roll up, wipe the pee, flush, pull my pants up, wash my hands, and I'm out. No romancing the bowel, no slowing-down of breathing or brainwaves, no reading!

So everyone knows...

2006-03-17T14:38:00.000-05:00

Last Sunday, still feeling somewhat hungover from the wedding the night before, I was interviewed about having Crohn's Disease and an ostomy. It was a phone interview, and it will air on a local community radio station by the end of March.

At the time I was doing the interview, I was lying on my mother's bed looking out onto the ocean, sipping coffee and, despite the mild headache, feeling quite relaxed. I was comfortable and it felt easy to talk. I found myself taking about 5-10 minutes to answer each question, and I felt like I was only scratching the surface.

How do you condense 1.5 decades of pain, invasive diagnostic procedures, gas, blood, diarrhea, hospitalizations, malnourishment, retarded puberty, medications and their side effects, intenstinal scarring, cessation of periods, doctors' appointments, home-based naso-gastric tube feeds, surgery, fistulas, accidents, lessons learned about nutrition and anxiety, and all the accompanying emotions and effects on family and relationships in less than one hour?

I didn't realize that I was going to have so much to talk about, and that I was going to feel that okay about talking. Who would've thought that just four years ago I was sure I would only ever talk about my ostomy with a handful of select people- those who I knew wouldn't turn away from me. Now I'm okay with telling anyone who happens to be tuned into a particular radio frequency, not to mention keeping this blog.

It feels good to confront the shame head-on like that. I said things like "removal of my rectum" and "when gas came out of the hole in my abdomen for the first time" without flinching. I'm sure it will be challenging to listen to. I'll get self-conscious about all the people who, in my mind, could be laughing uncomfortably as they listen in their cars, and I'll wonder how many peoples' too much information barriers I'll be crossing.

Fuck it. This stuff doesn't get talked about enough. And I'm always game for getting myself into norm-challenging situations.

I'll post the audio on this blog when it's ready.

Public Poopin'

2006-03-13T01:39:00.000-05:00

At a wedding last night there was a constant flow of women in the can. Chatting, grooming, gushing, etc. Not women I knew, so I found myself in that position that presents itself every now and again as an ostomate: having to poop publicly when the stank will (in my mind anyway) obviously be attributed to my stall- by potentially judgmental strangers.

I used to carry around that genius blue M7 concoction. Seven drops and a bag of would-be-stench becomes odorless. I stopped; not so much out of laziness or not caring so much (although it's true I don't care as much as I used to), but when I graduated, my medical supplies were no longer covered by my Dad's insurance, and my income was dismal.

A recent tip passed on from a fellow-ostomate is that just putting one of those fresh breath tabs in your bag will eliminate all odor (which doesn't surprise me at all since they also can burn the roof of my mouth off with their potency). I keep meaning to get some... but what if my stoma dissolves?

Just a month or so ago at a night club I found myself in a similar public washroom situation of dreading the sploosh of poo and it's accompanying whoosh of sulfuric stench into the air (mind you, I don't mind the smell myself). It was then that I had an epiphany. If I unroll the bag to the point where it's just about to spill and then quickly slam my legs together, squeezing so that no air will escape, no smell will escape. Then there are two choices: one is to slip your hand through the airtight barrier, releasing as little air as possible, bring up the end of the bag and do the wiping thing; the second choice is to twist around (without releasing a peep of air) and flush the toilet, taking down all the poop except that nominal amount which clings to the opening, and is really not enough to make a stink about (oh, har har har).

I prefer the latter method, and it worked just fine for me last night. Although, this does require two flushes, in order to get the poopy TP out of site. But I'm not so self-conscious that I care if people outside the stall would actually pay attention to the number of flushes, plus- being an ostomate I feel I'm naturally entitled to an extra quota of flushes per day.

Should some vigilant water-conservationist ever yield enough power in my neck of the woods to enforce some kind of cap on water usage, I'll be sure to fight for special exemption status.

Worth thinking about.

2006-03-11T14:10:00.000-05:00

Remember Freud? I wonder if he ever commented on people who had procto-colectomies... or if they were being performed back in his time. I know ostomies were... and that history will make some interesting future posts. (could you imagine someone having a ostomy without a proper bag? people used to use whatever they could find... like rubber gloves taped to their skin)

Freud put so much emphasis on anal fixation, anal pleasure, anal retentiveness, etc. and the relationship between anal shit (so to speak) and the psyche.

My anus was seriously fucked starting at the age of 10. I vaguely remember enjoying anal play and 'exploration' as a kid. I still kind of remember how good it felt. Now, I no longer have an outlet for this kind of pleasure (there is really no shortage of puns to be made here, but I'll try to stop)... anyway, when I think about how my surgery has changed who I am, mentally, this is one of the things that comes to mind.

Sexually, I don't feel all that sorry for myself. Stories from girlfriends about the pain of anal-sex do not make me envious. Then again, there are some pretty exciting stories about anal sex that make me a bit jealous. I still do have some neat sensations in the crack region and truly dig some gentle touching if my partner's down there already. When I play with my partner's anus, I like watching the amount of pleasure it yields, and do kinda wish it could be reciprocal, but no, I don't feel sorry for myself. Wanna know who I do feel sorry for? Gay guys who have had proctocolectomies. The fact that that of course has happened to many men makes my heart go out. Mind you, if they like being top, their partner likes bottom, and they can still get erections (a portion of male ostomates can't) I guess it is something that one could get used to.

I was telling a girl I've known casually for years just a couple weeks ago about my ostomy. She was extremely concerned about the fact I had no anus. Not all because she's a prude or whatever, more because she is ultra-sexual and couldn't life fathom without anal-play on a regular basis. The ostomy to her was no big deal... not having an anus though... that was fucked up!

But back to my original question... does not having an anus make me mentally different from others? It's hard to say. A variety of unique life experiences makes me different, but you could say that for anyone. I do get a bit anal retentive sometimes, especially at work... I take things seriously and sometimes have a hard time letting something go that might not even phase someone else. None of this necessarily correlates with having no asshole.

One day when I have my laboratory, and of course, my stark white lab coat with a killer-sexy red suit on underneath and red high heels (and those hot half-glasses and my hair in a bun), I will make a point of looking into personality attributes of those who've had proctocolectomies.

I bet we all like to play with Chinese finger traps.

Sometimes things happen that reinforce my belief in God

2006-03-10T22:09:00.000-05:00

This was one of those times.

When I first had my surgery, I was grateful that I was in a relationship with someone I really loved, because I knew it would be so tough go through the whole dating thing with a bag a poo hanging off me. I thought we would get married. But as the months went by, it became clear that we weren't really that compatible, and things ended.

My first date following that break-up was fear-filled. I was looking forward to it, but so many things were going on in my head before the date. What if I like him? How long will I wait before I tell him? I think I'll have to become one of those girls that doesn't have sex for like... gulp... months... maybe years into a relationship.

Well, the date started out nicely, we had a delicious dinner at some Italian place and I managed to completely skirt around any discussion of my Crohn's disease, my ileostomy, or the fact I'd been hospitalized for nearly four months the previous Spring. But then we went for a walk after dinner...

It was hard to talk about any major stretch of my life from the age of 10 to the present without bringing up the Crohn's Disease. And that was something I was never ashamed of, so I let it out.

Then, the most beautiful thing happened.

He said, "Oh yeah... I used to date a girl that had that. She actually had one of those, those... what do you call it... hmmm, oh yeah! ...an ostomy."

So many things rushed through my mind at that point. WOW! How lucky was I that the first new guy I went out on date with after the surgery had dated a girl with one, plus, seemed completely casual and non-judgmental about it!

We actually ended up seeing each other for about five or six months. It was a respectful relationship and the sex was amazing! It was just what I needed. I have some great hybrid relationship/ostomy stories from that period of my life, but I'll save them for a later post.

What I am going to share now is part of an email that I sent to very close friends the night I got back from that first date:

Alright, I went out on this date. I wasn't going to mention my ileostomy- but the fact that I had Crohn's came up. XXX said, "I know someone that had that... well, actually, I used to date this girl. In fact, she had one of those bags... I think it's called a colosto.. no, wait.. an ileostomy." Dude... I thought it was the coolest thing ever. I listened to him talk about it for a bit, and asked him a couple questions... and then told him that I had one. It was just so cool because it really made me feel like I wasn't so alone. He knew exactly what I was talking about, and it wasn't a big deal at all. We talked about it some more, and then we just changed topics and it didn't really come up again... except for the few times I asked him some more questions about his ex's experience with it, and how I thought it was so crazy and unlikely. ... it just made me feel great. And I wanted to share that with you, because you've been there so much for me. In case you were worried that I might get hurt by someone who wouldn't accept it, this experience was a giant step in me gaining back my confidence.

That's right! No anus!

2006-03-09T04:19:00.000-05:00

I'm totally sewed up. My surgeon took out my entire large intestine, rectum and anus. For the first 10 days or so after surgery my ass-cheeks felt like they were slightly misaligned, like... crooked. But that went away. Guess what didn't go away? Ass smell. You know- that unforgettable sweaty ass smell. I used to think it had something to do with poo residue, but nope. I have no poo in my butt, yet that smell still exists. I figure it must be a usual glandular secretion and I don't even think of it as dirty.

Talking Helped Big Time!

2006-03-09T03:47:00.000-05:00

Long conversations with my boyfriend, incredibly emotional conversations with my mom, heart-to-hearts with friends, good chats with some really caring nurses (although some nurses stared at me blankly which was not all that cool), counselling from a woman who had an ostomy (thanks to my mom), a visit from a woman with an ostomy, on-line chats with ostomates around the world, and hospital visit from my cat (chauferred by my mom or sister).

All that talking over time helped me come to terms with the fact that I would have ostomy surgey. PERMANENT ostomy surgery.

I remember that last time ever pooing out of my ass - it was really anti-climatic - just before getting wheeled down to surgery. I thought I should get an award or something, but no one said anything. It was just me and my private last poo in the sterile hospital bathroom, in my flimsy blue gown.

I was scared, but I was ready.

My Life Felt Over!

2006-03-09T03:31:00.000-05:00

I argued with doctors, kept doing Internet research for some sort of viable alternative (all of which my doctors rejected), cried to my mom and boyfriend and a few friends, fought with my mom, cried, cried, cried, cried, hated myself, cried and scratched my wrists until they bled- becasue I needed some way to release the pain I was feeling inside. It was so difficult accepting that my body would never be the same again.

Blood. Morphine. Tears. Fights.

2006-03-09T03:06:00.000-05:00

I hated the idea of having an ileostomy. I figured my life was pretty much over, that no one would look at me in the same way, that I would totally hate myself and always feel disgusting. Oh yeah, I was also worried that if it didn't work out with my boyfriend at the time (who was accepting about it), that I would never have sex again... or if I did, that it would totally suck, because who on earth would fuck someone with an ostomy!

2006-03-08T03:17:00.000-05:00

...it was fascinating to witness peristalsis for the first time through the transparent bags that I wore for the first several days after surgery.

2006-03-08T02:58:00.000-05:00

I use a two-piece Coloplast system that works fairly well. The skin around my stoma has never completely healed. It's a bit painful when putting the alcohol-based sealant on it, but I I don't mind. It feels good to itch everytime I change the flange.

2006-03-08T02:11:00.000-05:00

stripping

Nearly four years without an anus

2006-03-08T00:26:00.000-05:00

Crohn's Disease... diagnosed in 1992.

Severely scarred rectum, anus and large intestine resulted in having permanent ileostomy surgery in 2002. Protocolectomy included.

Planning a four-year anniversary sans-anus on May 7th. Will be sure to keep you posted as to how plans for the party roll along. I wonder what to serve?

perhaps sausages.