life with an ostomy. candid, not sugar-coated. empowered, not embarrassed.

May 3, 2010

Alternative Histories....

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!

Apr. 30, 2010

Life comes from death

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.

Apr. 16, 2010


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.

Mar. 31, 2010

Crying over spilled milk

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.

Feb. 8, 2010

All the little pieces, jumbled, with some promise

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.

Jan. 28, 2010

Terrifying thought

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.

Jan. 20, 2010

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

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.

Oct. 15, 2007

Not hiding

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

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

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

Jun. 13, 2007

dead friend

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

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

Jun. 7, 2007

I'm a regular Dear Abby!

Jeff said...

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

mypinkbutton said...

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

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

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

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

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

I've never heard of the vacuum pump.

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

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

May 17, 2007

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I think I'll go make some tea.

Apr. 16, 2007

Snappin' a photo where the sun don't shine

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

Anna wondered:

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

Pictures are worth a thousand words, right?

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

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

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

Apr. 9, 2007

You've got questions?

I've got answers.
Here's a green light to anyone with questions about my ileostomy.
Go ahead! Ask away! A nice lady named Roxanne did!!

Roxanne's first few questions...

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

J: No, the stoma I can't really feel at all. I can only feel pressure on it. The peristomal skin is what sometimes hurts. That's the skin just around the stoma; a small ring of skin has never completely healed. I've had Enterstomal Therapy nurses (aka ET nurses, aka wound care specialists) say it should heal, but many ostomates I've talked to haven't had it heal completely.
Most of the time the peristomal skin doesn't hurt... it only hurts when it marinating in liqui-poo that's slipped under the flange - which indicates it's time for a bag change! - and it hurts when it first comes into contact with the glue I put on underside of the flange - there's alcohol in the glue.

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

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

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

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

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

R: How does farting work?

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

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

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

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

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

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

Feb. 9, 2007

This Just Leaked!! ...a photo story

Feb. 5, 2007

I shat myself at school

...and all was fine.

I knew it was bound to happen sooner or later.

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

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

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

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

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

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

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

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

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

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

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

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

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


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...

Jan. 16, 2007

Obsess much?

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

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

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

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

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

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

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

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

Jan. 5, 2007

Visible ass-crack is challenging enough 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!