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.

Just another Rant

I'm having problems with this blog stuff lately. When I view it in e explorer, my cherry-blossoms background is gone! Grrrr... I put so much work into changing the html so the layout too.

Then trying to make the "girly-girls" non-blog redirect into "girl-girls" failed, so I just had to make another blog with the same name posting the link to this blog. My god, it should not be this stupid. Moreover, maybe I'M just this stupid.

I've been going to a lot of appointments this week for shit, and I've noticed that most of my medical appointments always turn into some kind of explanation for like half an hour about my ileostomy. So many are like "omg tell me about this weird space-age creation". I shouldn't have to educate them, they are supposed to pretend it's something they see all the time and not bat an eye at it. Don't make me explain about it, asshole, it has nothing to do with other medical problems. Like if I broke my foot, don't ask me about a mole on my back. I'm not embarrassed either, just annoyed.

Very stressed out... packing my life up to live in another country, balling all my clothes into tiny bundles, cradling my HDs in packing material in my bags... what about my instruments? What will happen to my piano?! And my guitar! And my recording equipment! Noooo! And my kittehs!!!! I must leave them behind until okasa-mom comes driving out in the late spring. I worry about their safety during the drive, and I worry too about my ileostmy supplies and bags moving to Canada, and how I will get my things (as I said earlier) and my health in general.
I have to take a lot of meds each day, at the moment, unfortunately, and I don't know how I'm going to get what I need to keep me alive. At least we have located Ensure there, because I drink a few of those a day. That's the only thing keeping me from being 70 lbs, like I was earlier in the year.

((Does stress affect an ileostomy? I suppose so. Stress affects most things in our health, doesn't it? I think I get less output when I'm stressed.))

I'm about to go out on an impromptu dance date with two other girls and my husband tonight. I don't exactly think it will help to dance the stress away, but I need to get out for a reason other than Doctor's appointments.

I'm sorry everything has been so hap-hazard and disorganized lately, I'm just being a silly human and my body is still trying to heal after this hellish year. You know, if I get enough balls, I will post the pics of me when I was at my worst. It's like fucking disgusting. I look like a walking skeleton. Actually, in some of the pictures, I look like I'm already dead. It's weird to think about how much I've gone through this year, and how much my life and body has changed... not totally for the best, but certainly, you know, better than being DEAD. 

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 :( :(

BLOG NO DOWN. HUMAN BAD. HUMAN STOOOPID. (Also, Thankful on Thanksgiving)

Sorry my blog was down for a while--I changed the url and was stupid enough not to realize that hey, maybe people can't find the same blog now that I made the URL DIFFERENT duuhhhh.... (It took me this long to realize my url is "girlgirls" and not "girlygirls". Girl-girls sounds like a lesbian blog site... maybe why I get traffic to begin with?? Heh heh... sweet.

But nah. I'm still here, and hopefully, those of you reading will keep on, occasionally, checking in to see what dumb ideas or suggestions I have. 

Like for the USA Thanskgiving, or as I like to call it "Colonize-the-shit-outta-everything-and-then-give-the friendly-natives-smallpox-blankets-as-thanks giving day". How does one with an Ileostomy combat the wilderness of Turkey and stuffing staples... as many of us, I'd damn near say most of us, would get blockages eating that sort of thing? For those that are better digesters, (ie, not me), I would say bring along a baby grinder and have at it. And drink tons of fluids.
 But for people like me, I just stuck to gravy and mashed potatoes, and walked around talking a lot of pictures of everyone so it wasn't so awkward that I wasn't eating all that they could. Also: DRINK WINE. No one notices if you're not eating as much as they are if you always are drinking something. And wine is good. Wine is fun. Wine is your friend. Because of the drops of Asian blood within me, I get the Asian flush, where our faces go quite red from drinking. But does that deter me? NO. Because of the Russian in me, I have enormous crazy unhealthy amount of Alcohol tolerance, even though I'm 147 cm (4 ft 10) and barely weigh more than a sack of water-softener salt. It's a great party trick, to be able to drink 195 cm dudes (about 6 ft 5 inches) under the table.

ANYWAY.
Off and on I get scared of having Gastro Paresis, and those inflicted go through a fuck lot of worse times when sitting at the dinner table. Literally, they can barely digest anything, therefore, barely eat anything. Sometimes, the same food will sit in their stomachs for days and days on end, undigested. Terrifying. I don't even want to think about it. I am so fucking thankful as shit that I have a little plastic bag attached to my abdomen that collects waste products whenever my body feels generous enough to bestow it upon me. Hard to image for those that are struggling with having too fast of transit, but it's just like the old adage of "you don't thick about it till it hurts".
Like the people around us in our lives, if they ever started having the bleeding or the pain of Crohns, suddenly they would realize their whole lives they should have been thankful for the functioning they DID have. Or like my kidneys. Hey, I think all the time like, "Man, I'm glad I don't need dialysis" or "I sure am glad my copious alcohol consumption hasn't damaged my liver... yet." I mean, I can get out of bed on my own strength every morning, walk on my legs without assistance, breathe without medical intervention, swallow, move my arms and hands, and most of all, I am cognisant without the muddied water of mental illness. I mean, hey. OMG--no way.. I have an ostomy bag!! Who the fuck cares. Whatever. In the grand scheme of life, it is such a small thing, living with an ileostomy. I think the literature written about it makes it a bigger deal than it is because they want to instill fear into you to market their crappy products better. And yeah, it's a damn hassle. I'm moving to Canada in a handful of weeks, and I am nervous and scared about how I'm going to get my ileostomy products.. and they DO have universal healthcare unlike the USA, but in order to get the products you need a doctors RX and in order to get that, you need to get into a Dr, and seeing one is more intensely hard to be set up with than anything my Permanent Resident sister has tried to do in the last 5 or 6 years she''s lived there. So yeah. Ostomy's are a bitch. But they are a devil you know, and one we understand.
I never mean to downplay it or act like another person's misery with their ostomy doesn't matter, but it helps keeps things in perspective for me sometimes, to be like "Whoa man. I am beyond glad that I have all these other things functioning in my body, and I need to be thankful for them."