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

Rectal Stump Suctioning & Stomal Stenosis

A month ago maybe, I had my rectal stump suctioned out at my Swedish surgeon's office. He's the incredibly intelligent dude who talks to you like you are a human being, but he doesn't hold your hand and certainly doesn't fuck around.
So some peeps who have a total colectomy, every 2 weeks or something they'll have rectal drainage. It's just a smidge of clear jelly, as your intestine is still creating and shedding its lining and all that. Well, mine doesn't feel like following orders and so I went to his office for suction time.
Friends, neighbors... back when I was a teenager before my large intestine resection, I had to bend over ass naked on this table and a Dr stuck a looooong scissors up my asshole and took a SNIPPET of the inside tissue to test for something whatever. I WAS STILL AWAKE. I was given NO DRUGS. I was given NO WARNING. I began to have Vasovagel reaction from the pain, high-pitched noise in my ears drowning-out all sounds, my vision clouded and white, my body's blood pressure plummeting alarmingly. Yeah. So that was pretty fucked up, but this suction thing wasn't as bad as that but still by no means do I recommend it.
It's heavy on the ass-rape, and as I've never been one to travel the road of the difficult brown, I didn't kin much to my Swedish surgeon finding out just how much pain I could tollerate before I broke down completely. It was like a Saw movie.
So they lie you on your side with a sheet covering just the unclothed bottom half, then jam a tube up your no-no, then flush some liquid junk into it and suction it back out. I was shaking the whole time from pain and doing this thing I do when I'm really really hurting, where I kind of growl through my teeth. I've never been a screamer. I've never gotten scared and screamed, not even on rollercoasters. On rollercoasters, I get really sarcastic and start saying shit like "Oh boy. Here comes the big drop. Oh good. Okay. Great. Looks fun." I've even had people tell me to shut the fuck up, and rightfully so. But I don't scream. I got my foot run over by a car once. I just kind of looked down and said really quietly "oh." Like I'd stepped in dog shit. No... I think if I'd have stepped in dog shit, I might have had more of a reaction than that. But anyway, I don't scream, and though I get many tears in my eyes, I don't cry. It's shit for the vocal chords, and it's annoying as fuck to scream. I heard kids screaming all the time in my old neighborhood--you try and tell me with a straight face the sound of high-pitched little kids screams at 7 am on a Saturday morning is ever EVER on your top list of cherished noises to burn on that CD of Songs to Listen to for Peaceful Living.
I can't even lie, I dreamily contemplated murder.

Oh yeah--and while I'm mentioning fun facts I forgot to mention earlier, back when I still had my le loop stoma, my uncaring bitch of a first surgeon (Dr Asshole) checked for stenosis (narrowing of the small intestine due to strictures/scar tissue) by shoving his bloated finger down into my goddamned stoma opening. I now know what it feel like to be raped in the stomach. And once inside, the fucker kind of wiggled it around too, you know, just for fun. It was a strange sensation, to say the least. Not necessarily painful, as in it didn't totally hurt, but it's an uncomfortable feeling to say the least, to have someone dig around inside your guts while you're un-anaesthetised and quite aware and watching.

Worse than Skin Erosion

I was in the hospital for five days after the surgery to make my loop ileostomy a permanent ileo and with total colectomy, two of which I spent vomiting my head off at the slightest movement of my eyes with the wonderful drugs I was on.  More than a week later, and I still have yet to be able to eat more than a spoonful of mashed potatoes and actually be able to digest it... My slow transit just became that much slower :(

The worst, besides the immediate pain I had, which by now has mostly gone away, is the weird skin problems I was left with afterwards. I have had skin erosion before, but this....?

I don't even know what this is. I can't even.

Fills you with sunshine, doesn't it? While I was under in surgery, some dim-bulb cunt nurse put my bag on sideways, resulting in leakage of bile fluids into my new stitches, resulting in this monstrosity you see before you.  I need to get to an ostomy nurse or back to my surgeon, but he's Swedish, and he's gone to some foreign Dr's conference for a while, and anyway, according to his offices, he's booked out for months. So great. How do I make this crazy shit heal now? Ugh. Fuck my life.

I'm trying to get into a local ostomy nurse to see what her recommendations are, but I need my primary to give the order for me even to see her, so I have to call his offices tomorrow, and hopefully get him to do it without make an appointment to see me as well, thus drawing all this shit out mooooaaarrrr. GRRRRR.

One kinda good thing is that he cut along my old huge scar, but I'm pissed he needed to open me up that far and wide anyway, as he anticipated it would just be laprascopic. Now the area around my old scar is entirely numb, except for a shooting pain across my belt line. Sometimes I get stabbing pains throughout my pelvic region that cripple me, but I'm still glad the colon is out, although he left a bit (how much has yet to be determined) to support my vagina and other organs so they don't all collapse into a pelvic prolapse and shit. 

UHG. Not feeln' this shit right now. Really not feeln it. :(

IT'S ALIVVVVVE!!!

You are not getting a stoma prolapse. Neither are you experiencing some kind of malfunction of your stoma, or your small intestine trying to escape your body through the hole in your abdominal muscular wall. No-- the stoma you have sometimes bops around like a robin listening to a fat dubstep beat (I have never experienced this much action from my own, but I've heard stories...) or elongates and contracts at its own will.

The peristalsis you are used to never fucking ever seeing inside your body is now (at least a little bit) on the outside. The cute little red button is going to grow and move and morph around like a fucking anime demon trying to find its true form.

Yeah. Kinda like that.
In other words, it's alright, yo. Chillax.  :) 

My 'le Loop' Stoma, Changing the Bag & Other Practicalities

This is le loop or Lil SquiRter-- as he's known in the gang circles. Mr double-trouble is still super swollen considering it's the 18th and I just had the surgery on the 8th, and though I look pretty skinny still, I'm still swollen abdominally considering where I was before I entered surgery. (So don't expect yourself to be back to normal by this time. I was seriously emaciated going in, so slightly puffy I just look more normal.)

So here's one of the big-ass Coloplast bags they sent home with me.  I'm ordering ones that actually fit me soon, so I'll update as soon as I get those. Oh yeah, this is a one-piece bag, meaning that it has the wafer thing built on, which I ADORE compared to the two-piece, which leaked like crazy and never stayed on right.

In the hospital with my stoma nurse, we determined a good size for cutting the opening, since mine is irregular. I trace that onto the back and cut around it.

The wax

Once you've cut the bag to fit and squished the wax around the opening

place bag over those little fuckers as closely to the bottom as you can (but not too tight, the wax is there to fill in gaps) then gently wiggle stomas into the fashioned hole and press down on the sticky wafer thing to create a kick-ass seal. Make sure it is flat and smooth on your skin. If it's buckled even a little bit, even with the gummy wax, shit is going to seep out. Not cool.

Yup. It's on.

Yes, sometimes your little squirter is going to begin to operate while you're changing bags. I change mine in front of the sink just in case this happens, which it doesn't too frequently. I keep Clorox Wipes under the sink for this reason. Seriously people, don't let your family members/ housemates suffer with feces germs and shit. Hmm... well, maybe if they're horrible. Then it serves them right.
Also, a tip here, change your bag at least an hour before you eat anything, and seriously don't eat right before you change your bag. Some peeps do it first thing in the morning, but I do it whenever during the day.

If you're changing the bag for your child, wait until they are kinda sleepy or at least chilled out. like, they aren't really excitable or angry that you pulled them away from watching cartoons. Before you even bring them into the water closet to change their bag, cut that pouch, have all your supplies out and ready--this will make the process go much faster. Trust. Just like giving a squirmy cat medicine, you might want to have another person there to assist. Unless your kid is naturally obediant and quiet. (Yeah right.) HERE is a great site with links for children and ileostomies. Or ostomies in general.

For changing the bag, depending on how fucking nasty it is, I'd say every 2 days. If it's loose or leaking, change that shit, cuz man, the acids in your feces are gonna fuck up your skin. If it's your kid with an ileostomy, or just an ostomy in general, they might start to get fussy or uncomfortable, or if they're older, they might complain that it's itchy or it burns. That's when THIS occurs. So change that bag, okay?

For emptying, wich you do a handful of times a day, also depending, I keep a pair of plastic gloves in the Water Closet that I slip on for these special occasions. I'm such a fancy lady, emptying my shit-bags with gloves on.
 With the Coloplast ones I have here, I unroll it from its delightful velcro wings (seriously, velcro wings on the flange are the greatest. So much fucking better than the clips) and squeeze it open at both ends so the hard plastic remains open while I drain it.

(In this pic I'm not wearing gloves as this is a new bag but whatev)

So, to best drain, some sit on the toilet and drain the bag from between their legs, but I've had trouble with UTI's and I'm not exactly keen about liquid feces going past my vag and urethra so I get on one knee, to romance the toilet, and drain that shit like so---->

And yes, as you can see a bit of watery blood drop in my bag, your stoma's gonna bleed a bit. It's the inside of your intestines folded back and sewn to your abdomen, for gods's sake. Of COURSE it's going to bleed. Expect it. Sometimes I bleed like, a 1/4 cup a day, sometimes nothing. Depends on if the little tomato's been rubbed or is upset or not. Whatever. It's not worrisome unless its' a shit-ton of bleeding, and trust me, seeing blood may be scary, but you will know when it's seriously time to call the emergency room. I'm talking about a FUCK TON on blood. Tablespoons of blood even if not anything to be stressed over. Chillax.