How to Excuse yourself Politely when your Ileo's burpin up shit

Apparently, I have had a lot of Drafts here I've never posted. So... I suppose that is why I haven't updated in a while. I'm so SMRT that I didn't realize they were going into drafts.
Dar dar dar, I know wrds and hw to type on compooters. :/

Anywoozles,
With trousers, it's often quite easy to mask or hide a bag. An ileostomy bag ain't that big--depending on the brand you're going with. But against your right leg, you are totally aware of that thing and like "Omg--they are totally looking at it right now, freaking out, wondering if it's gonna burst liquid shit on them."

TRUST. Ain't no one care about your bag. They forgot about it the moment you told them. It's interesting, but not THAT interesting.
Unless it fills up with air (like mine does in the morning) or shit, it isn't noticeable at all.
It if starts to get uncomfortable or you think it might be noticeable, you could direct the attention to something else "Ah! I think I have something my eye! Excuse me!" (then run to the Water Closet) or "Pardon--I'm embarrassed to say I have something stuck in my teeth". These are good excuses, and then you can make an elegant exit without making it about "My ileostomy is shitin out lotsa stuff and it's goan go all ova da place if I don get to a terlet".

The worst is in a restaurant.

For years, I avoided eating with people or going out to the point that my in-laws wondered if I had an eating disorder. It wasn't surprising. I mean... I weigh like 3 lbs and look like a hairless baby chick or like Gollum with eyeliner.  But every time I eat, or am just moving around, or am just sitting there... my bag fills up. And my stoma is like a bratty child. I swear to Jeebus it has an incarnation of some spoiled little shit kid who is always plotting and planning, biding its time, being silent when I'm alone, and then as soon as I'm with people:

 

Thanks MacBook Pro Paintbrush. You are a piece of shit and NOTHING as easy to use as Windows Paint >:(

I have found for me this is inevitable. As I have no shame, decorum, delicate elegance and usually make the Britishly self-deprecating jokes regarding myself,  I have found it is much easier to just say at a polite pause in the meal--or at the end of it-- "I have to wash my hands and dump my bag. I'll be right back."

I mean--you got an ileostomy. It's just a part of your life. It's better if someone's head explodes from this announcement than your bag.
Man--I've had that trouble a lot. The exploding bag, I mean.

Many times when I am sleeping, the darn stupid NOT STICKY AT ALL wafer bends and leaks shit all over my blankets, my clothing, and my soul. Yes, my SOUL.
There's no way to act all cute in the morning with your loved one, waking up to Vivadli's Four Season's as you adorably prance out of your room clutching bedsheets covered in brown feces.
:D

It's dehumanizing to sleep on towels or a bed covered in plastic like you are an incontinent 4-year old. 
Just... just no.


I have a very valid concern that my wafer will crack in public, and I will be left with no way to change it, fix it, or escape. It just isn't practical to carry alllll of your ostomy supplies with you wherever you go. A tote-bag is too large to haul around constantly! 
But, even though I have the supposedly "useful" sticky liquid, I have found masking tape around the edges of the wafer do assist in keeping the leaking feces at bay if you are wearing your bag for more than a day or 2.
(For monetary reasons of making them last, I do this quite frequently. I do not recommend it. :/ )

Then again, this is just a personal experience. Most ileostomates I have connected with were able to resume their normal diet after surgery, avoiding the usual suspects of mushrooms and globs of things that would cause a blockage... and their transit time was normal-to-fast, unlike my slow slow slow 8-hour speed. :''(

I am an unusual example.
 Doctors being mystified over my many health problems has long since lost the quirky sort of curiosity one experiences from continuous confused frowns, muttering with other doctors whilst you are still in the room, and the inevitable non-diagnosis of" idiopathic"--which basically means they don't know why and there is no reason for it.

As a last comfort to those newly branded with a rosebud stoma (heh. I named my small intestine stub 'Rosebud'. Orson Welles 1941 Citizen Kane, yall), I have a 40-something Degree and 75 degree curvature of my spine--both upper back and lower. Somehow my body looks normal...normal-ish... but my X-rays make me look like a cool awesome monster being that Marvel Comics should totally make into an evil villain.
For long years, it has been speculated by many that the pinched nerves and messed-up things in my dinosaur spine were causing me problems with my intestines, my nerve-endings in my face and legs, and other problems all across my withered little form.
So lucky you, dude! You probably wont have the horror-story experience I do, but perhaps maybe you can gather a bit of information and hints from these rambles.

At least... I hope it's a bit informative and entertaining.

<3

Un-Related to Ileostomies, but a broken-face part of life

Unrelated...

When I was 17 I entered a relationship with a boy that I thought I would marry. Yeah yeah.. young love and all that happy crappy.
It was mostly an entirely unsexual bonding, and the guy was more like a really best friend. Our conversations rocked, but whenever i wasn't physically in front of him, he forgot me. Forgot my birthday numerous times, forgot ot call me, or I'd wait all day for a time we were supposed ot have together, but.. he forot and was playign World of Warcraft with his buddies. :/
Nice.
Anyway, not bitching, I'm over it, but one of my birthdays, the last I spent with him, we got into a fight, and well, my ratty hair got grabbed by the back of my skull, and my lover face and jaw were delightfully smashed against a cement windowsill. I blacked out there on the kitchen floor, and when I woke, there was blood everywhere and I was crying out "where's my tooth?" 

With my mother's angry urging, he paid the not-insurance-covered coin to replace my tooth with a ceramic cap.
but about 6 years later, when my husband & I returned to MN, it broke off as we were riding in the car to get groceries.
YAY!

So that's without the crown. My little stub. Aint it just cute?
Now that we're on foodstamps (yay :( ) and dont make no money without no jobs, we were able to cover some of the enormous cost with some deal my husband did because it involved numbers and research and that's HIS bag--I do the stuff that doesn't require math. That's our deal, that's our teamwork. 

So after many times of a temporary cap thing falling off while I'm drinking my morning coffee or sipping Butternut Squash soup, I finally got my 'permanent' crown on once again.
In direct sunlight, it's a bit off-coloured compared to my other teeth, but it'll do, right?

Nice patch of sunlight there right on that fucker.

Unforch for my time as a young 20's -something, that birthday present from my X-boyfriend (Happy birthday! I forgot it was your birthday again--but here's a broken face!) also included a broken jaw.

So there's a bulge on my jaw there where the bone healed all weird... and damn, one day when I have money I'm gonna get it shaved smooth or something.

Yay for depressing update!

Gonna work on some more blog posts related to ileostomies now. Sorry for all that!

<3

My top lip was also busted open, and I have a faint scar there I can cover with some old theatre makeup that's awesomely cake-y, but I can't whistle anymore. That fucking sucks. I used to whistle like, crazy good and that pisses me off more than the broken jaw.

Moving (to another country) With an Ileostomy--& other rambling crap

Vancouver, BC, Canada

At this moment, I dwell in the cold barren wastelands of Minnesota, where everyone comes to die. I wasn't born here, but I've lived out the majority of my sad futile existence in this Dante's last-level of inferno ice graveyard.
If my health can pan out evenly in the next handful of weeks/month before we are scheduled to move, I will be joining Mr B on our flight to Canada, where we will live for at least two years, and then hopefully hope the pond elsewhere, world climate depending, eh?

My first fear was: "OH HOLY FUCKING SHIT. WHAT ABOUT MY OSTOMY??!!"

 Although their is universal healthcare in Canada--unlike in the USA--they have a shortage of actual General Practitioners and it is hard to find a primary doctor, as my permanent resident sister can attest to. As you need a Dr to prescribe your bags and meds etc, I am WORRIED, yall. TOTES WORRIED.

But there is:

Ostomy Care and Supply Centre

2004 8th Ave

New Westminster, Canada

V3M2T5

604-522-4265

1-888-290-6313

andy@ostomycareandsupply.com

I have had a couple different correspondences with them for my impending move. Mostly I was worried about receiving the products I use.

These are them, just fyi:
1.Hollister Adapt Stoma Powder 1Oz  
2.Assura 1pc Non Cnvx Drn Pch, 10", Trns, 3/8"-2 1/8    [3 boxes of 10]
3.Coloplast Strip Paste, 10 Per Box (2 Oz.)  
4.3m No Sting Wipes, 1.0 Ml, 25  
5.When I needs skin healing around stoma: Melgisorb 4" X 4" Absorbent Calcium Alginate, 10  

For British Columbia, Vancouver specific, Pharmacare is their provincial system, but as I'm not a resident, I have to physically call them on the phone or some shit when I'm actually there. UBC is the Grad School where Mr B my husband is going, and I've been told they should also be able to "hook me up" with a plan.

 ( http://www.health.gov.bc.ca/pharmacare/generalinfo/generalinfoindex.html )

And apparently, this is from where I can order the supplies:

 http://www.ostomycareandsupply.com/orders01.html    

STILL DOES NOT QUELL THE WORRY!! 

We are moving into a carriage house, which is located on the lawn of a wealthy lady's home. It comes furnished, so we won't be able to decorate it or do anything we want with it, as we'll only be living there a few months before we go on to another place. But if I had a choice, this is how I 'd want my room to be:

See? It makes great use by converting the closet into a place to put a single bed, and it's totally cute! Kawaii! 

Vancouver is super beautiful. Not the city.. i mean, that's nice and all, really clean and significantly more slick and quiet than anything I've seen before, Certainly not like dirty Minneapolis, but the Mediterranean rain forests are my favourite. Also, the Science centre, it's pretty neat.

Recently, I had to paint the skyline and shit for my sister, for a fundraiser she was doing at the Children's Hospital in BC.

I was trying to make it vaguely Mucha-esque, but whatevs. And forgive the coloured smudge in the right hand corner. I had to smear out my real name, because I've had waaaaaayyyyy too many crazies say weird ass creepy shit to me, and I don't exactly want them looking me up on Facebook :/

I had to paint it in an absolute rush, as my lovely sister told me LAST MINUTE to do so with no heads-up whatsoever :(  So it turned out awkward and looking like crap, but at least the face is nice.

Here:

 GIANT ASS PICTURES OMG WTF HAHAHAHHAHAHAHA

Anywhoo, so that's Vancouver. Kinda. I shall post more pics of course once I get there, which I'm desperately hoping I can, as my health problems extend far beyond just an ileostomy :( :(

A rant about the "normals" that don't understand

An issue recently has been brought up to me on Facebook, and I feel very strongly about it,  and i know other people with Ulceritive Colitus, Crones, and other Intestinal disorders can surely agree.

The issue is when people ask you, in a semi-polite, rarely actually curious way "What are you doing now with your life?"
This can come from old teachers to classmates to friends to etc etc, but it still is touchy either way.
Right now in this economy, even given good education and good health--guess what's happening? Don't be a douchebag. Look at Salon.com, look at CNN, look at BBC for news. No one's got fucking jobs, asshole. That's why the economy is tanking, along with a billion other things, so don't judge all of us who can't even find work at a McDonalds.

Secondly, and most importantly, whether the "normals" understand it or not, battling a Chronic illness, at most times, is nearly a full-time job. You think of us as lazy, maybe you think we just lie around watching soap-opera's all day. To this notion, I give a hearty FUCK YOU IN THE FACE. ------>

 

The anguish of just trying to nibble food and then having to run to the bathroom throughout the day because of it, because of your condition, is heartbreaking. Curling up on the floor in pain, weeping because it seems the stabbing in your guts will never stop, wishing yourself into death because of it--This is no life. This is just anguished continuing suffering. If everyone "normal" could remember back to the time they had the flu maybe, or when they ate someting horrible: well, it's like that 24-7 times 1,000. Every. Single. Goddamned. Day for people trying to battle this shit. And surgery? It fixes some things--even alot! Don't get me wrong! But afterward, your life isn't magically changed into a "normal" person's life.

My friend is a First Lieutenant in the army, and every summer he vists me. So summer 2010, he took me out in his car, saying we were going dancing. Nope. We went to his friend's house, where I met this tall deep-voiced shy young man with a scruffy beard and an Austrian accent, and... and I had to meet his mom. It was fine, randomly having a parent crash the party of three young kids getting-together, but she kept grilling me about why I wasn't in this or that University, why I was a failure for not having this or that job, and didn't really like that I told her I finished most of my University classes in accelerated courses while I was still in High school, and, in fact, graduated from my Prep School a year early because of my grades. (I had a disease that kept me out of sports and parties and extracurricular activities of all kinds. Of course I studied hard. It was all I had :( :(
In front of my Lieutenant friend and this new tall boy, she kept grilling and grilling me embarrassingly, not caring that I was obviously uncomfortable with the questions, just wanting to shame me for not going the path she thought everyone should go out of tradition.

If I had known her better, I would have turned to her and been like "Hey lady? Guess what. I've struggled with a birth defect my entire life that has left me basically incapacitated for over 15 or 19 years. Sound Fun? I've been going to hospitals once a month since I was 9. For surgeries, for adjustments on my TLSO back-brace, for tests, for cultures, for god knows how many things. I've spent weeks at Mayo Clinic in Rochester, MN, where they starved me for a month on nothing but clear liquids so they could run a damaging banister of tests on me. My heart stopped. I went into cardiac arrest when I was 18 after all these tests. I was lucky to survive, but I'm still not okay. I have to take medication for my heart every day. I can barely eat anything I want. I still struggle with just daily living that you take entirely for granted. So yeah--I don't have a job right now. I'm not at a University. And yeah! I'd be lucky to just live like a bum even--maybe they aren't in constant agonising pain that drives you to think the only solution is suicide. So FUCK YOU. FUCK YOU IN THE FACE, AND FUCK YOU IN THE HOLE I'M GOING TO POUND THROUGH YOUR CHEST IN MY FEROCIOUS ANGER."

Go ahead and judge me, cunt. Just go ahead.

Anyway, this bitch became my mother in law, as I married the soft-spoken kind tall man, but she never once stopped judging the shit out of me. She works in the health-care field too, so you'd think she'd be a little more sensitive, but no. Every single chance she'd gotten, she's told her son, my hubby, to get away from me, that I was just a sickly piece of crap that would drag him down, that with my illness, I was worthless, that I would never provide her with grandchildren that I would never be able to hold a job, and so much more, over and over, where even the father, when I told them we were getting married, he was so disgusted he even mimed that he was going to vomit.
My hubby's family is so unlike him, it's amazing he came from them, but they have truly and honestly hated me from day one, and even more so once they found out how ill I was. Even through my surgeries, they kept trying to get my Mr B to leave me, to just walk out the hospital room where I was, to just leave and never come back.

To this, I say: I am not worthless. I have many talents, I have a big heart, I have a lot of love to give that obviously you lack you cunt asshole. I am a human being. I am a daughter, a wife, a sister, a writer, a musician, a singer, an artist, an animal protector and love-love-lover!!, I am so many things that your puny mind couldn't even conceive the wealth of all the love I have to give.
Now I can talk a lot of shit in writing, sure, but I'm actually pretty soft-spoken myself, and I don't say hurtful things to other people. I just don't. I haven't acted like a good Buddhist in my writing. It's angry and full of cuss-words many times, but I know in person, these people that ask you thinks that hurt your feelings, or people that even outright mock you for your conditon, they are just confused, they are just saying things offhandedly without really "thinking" about it. Sometimes they are scared, too. Sometimes they feel like they can't handle the seriousness of what has happened to you. Sometimes they feel dumb that they don't understand.
So to these idiots, to these small-minded dumb superficial people, just shrug. Give your response with a flightly smile. Pretend you don't care. Say "Oh you know, just hanging around" "Just surviving" or change the subject quick to the weather. If they keep pressing on, just keep telling them, "Oh odd-jobs here and there" "Just doing what I can to get by" and try not to talk about your illness at all, if you can, as it just confuses the tiny little rat-people.

I'm sorry for the rant, but i have lived with these questions so much for so long, and though I have mostly gotten good at giving vague-passing answers, sometimes I still get angry at them.

How do YOU deal with these kinds of questions??