What a Mess!

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

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

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

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

The Oral Fleet - It ain't so neat

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

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

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

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

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

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

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

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

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

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

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

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

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

Can't get no satisfaction

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

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

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

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

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

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

We must be everywhere

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

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

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

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

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

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

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

I thought my brown ribbon for poo was unique and sassy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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?

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.