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

May 5, 2006

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.


Anonymous Anonymous said...

By design, nature put our ass BEHIND us (I really believe it's because hot air RISES. Imagine, if you can handle it, having the business end in FRONT. Afore-mentioned gas passes right up to the nose.) Ostomates no longer have the luxury of not looking at, smelling, or handling their own crap/excrement/shit/#2/poop. It's right there in front of us, and we have to do more than push, wipe, and flush. So we HAVE to confront every aspect of the elimination process. Glamorous, um....not! Real? Oh yeah. And dealing with that reality frankly makes us less prone to avoidance and euphemisms, and more prone to graphic truth.

2:17 p.m., May 05, 2006

Blogger Kevin said...

I find it interesting that society is able to openly discuss sex, politics, and religon, but any talk about "elimination" still remains a taboo subject.

I find it highly amusing how this all changes when a bunch of ostomates get together. We sit around at our local ostomy chapter meetings, eat cookies and brownies, talk about ostomies, and no one is the least bit grossed out.

A fellow ostomate told me that it is time to get ostomy awareness out of the closet and into the living room.

4:32 a.m., May 07, 2006

Blogger ~mypinkbutton~ said...

Thanks Kevin and Anony... I posted your responses and I few others I got on osto-discussion boards at the party. I'll write more about the party later, but it was a definite success. smiles... but total fatigue right now.


3:39 a.m., May 08, 2006

Blogger Torild said...

I'm an ostomate also, and I'm not ashamed to say. The greatest sorrow of all was not getting the stoma, but thinking about all the time I had to work so hard to hide my illness. I felt so lonely, and now I feel energetic and strong.

I now consider it my calling to raise awareness about bowel diseases and living with an ostomy:-)

3:43 a.m., May 08, 2006

Anonymous said...

I had my anus,rectum,prostate,and bladder removed 6 years ago due to cancer.My anus,at the time,hurt a lot.Now after all that time,it hurts even worse.Doctors don't care.Each of us is on our own.I have been reading about nerve blocks.It appears that maybe an injection of Lidocaine might numb the area,in which case a more permanent nerve destruction technique might work.I'm thinking of injecting my scar myself with alcohol to kill the nerves.Wish me luck.

12:47 p.m., May 09, 2006


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