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

Mar 31, 2006

Poopy Predicament

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.

Mar 29, 2006

Baring All

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.

Mar 26, 2006

Sub-zero Trauma

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.

Schei├če!

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.

Mar 24, 2006

Crusty and Bitter

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.

Mar 22, 2006

Enter my uterus...

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.

Mar 20, 2006

People I haven't seen in over four years

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

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!

Mar 17, 2006

So everyone knows...

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.

Mar 13, 2006

Public Poopin'

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.

Mar 11, 2006

Worth thinking about.

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.

Mar 10, 2006

Sometimes things happen that reinforce my belief in God

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.

Mar 9, 2006

That's right! No anus!

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!

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!

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.

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!

Mar 8, 2006


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


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. Posted by Picasa


stripping Posted by Picasa

Nearly four years without an anus

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.