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

Is that an inflated ileostomy bag, or are you just happy to see me?

BOTH actually!!

Early morning inflated bag, don't you just love it? I have been stupidly sneaking small sips of delicious Cherry Dr Pepper--I forgot how much I loved that shit--so of course, as any carbonated drink will produce intestinal air, I end up with a puffy little bag.



(POV angle, me in my sleepy-time clothing, with my furry cat friend to the right :P)

Some times, I wake in the middle of the night to find it is like a balloon, so damn stretched out that it appears it could burst with the slightest poke.

(Black bag-holder barely containing my gross-ass shit-spattered bag. Furry friend still to the right, roaming about.)

Look at this. Shit, but I have no shame. Ratty sleepy-time clothing pictures with my damn shorts around my ankles. And I do this for you, Ostomy Curiosity People. All for you. So anyway, this inflation seems to happen more while I'm sleeping, and really inflates whenever I sleep on my back. Why is this?

(I really am disgusting, aren't I?)

We all know that there are certain foods to avoid that create gas. Asparagus, broccoli, cabbage, eggs, fish, little-balls-of-death-Brussels sprouts, cauliflour, onions and garlic. You should really avoid roughage anyway, unless you want a gorram blockage. (Gorram you say? Yes, I've watched Firefly.) Now, funny thing is, I have been purchasing fresh broccoli and chopping it up, then I fill a huge pot 1/4 of the way with water and I place a colander over it, dump the broccoli pieces in the colander, and boil the water with the lid on over all that shit.

(Closest pic I could find, courtesy of Akidscookingchallenge.blogspot.ca)

This is called steaming, and I steam the shit outta that broccoli so it keeps the nutrients in, but is soft enough for me to eat. I have been eating that with cream cheese and a sprinkle of garlic--omg, yum. But I have noticed it really doesn't give me increased intestinal air at all--but maybe I don't eat a ton of it, so it's not a problem.
Now some people have a filter on their bag. This lets the air escape, and also drives away your closest friends and then you're alienated and alone and depressed and contemplating ending it all. Kinda. I tried out the filter bags, and it mimics the glorious experience of having uncontrollable diarrhea farts. Just shoots out everywhere and stinks up everything and you're constantly turning red in the face and apologizing vehemently.
Uhm, no fucking thanks. I'd rather watch my bag for air and just dump it and air it out in the water closet when needed.

Ahhhh. All emptied and the bag lays flat. Like it should. (Narrows eyes threateningly at bag.)
How do you prevent the dreaded shit explosion from an inflated bag? I usually dump my bag before driving, naps, and certainly before sleepy-time at night. And before sex... heh heh (uncomfortable chuckles). How many times you will dump your bag/pouch during the day really varies for how much you eat and what, but is typically like, maybe four or five. Bag size also matters. Larger bags can hold more feces, smaller bags will have you running to the toilet with every little squirt.

So when should you empty a bag? Dude, seriously, empty that shit when it's like a third full. You see that nasty picture of me with my bare legs and underwear showing? Yeah. It wasn't full of feces, but the air puffed it up. When air isn't in the bag, I ALWAYS empty it when it's a third to half-way full. The bag gets heavy, and my bag-holder really helps hold it up so it isn't dragging down on the sticky wafer and you know, ripping it off or something.

But don't sweat it. You can handle a little stinky air.

And check out my FABULOUS nails, OMG.

The pinkie has a little slice of watermelon glued on it, ring finer has an apple slice, middle finger has kiwi and orange slice, first finger has a strawberry. And then, the thumb has a lime slice. FABULOUS! FASHION! GORGEOUS!

Video

So I am planning on doing a video, directed by my husband, showing the entire process of changing a bag--from cutting around the edges to size it right, and cutting the wafer to fit my ostomy bud, and all the powders and wax shit that goes along.

It will be gross. You will see liquid feces. You will see exactly how this whole ileostomy life works. And it will be the only REAL video showing this crap to those who are desperately trying to find answers to those questions that swim through their scared and panicked mind when the doctor says to some youth they need to have an ileostomy. Oh My God! Will my life end? How will this work? Everyone will know I have a bag! Everyone will smell it! I wont be able to wear anything pretty anymore! I will be an outcast! Everyone will think I'm gross! FUUUUUUUUU------

So that's why. I might be ashamed. Maybe I should be. But this will be for all those people who feel so horrible and just want answers. Maybe... maybe I can supply them.

What do you think? Bad idea? Good idea?

Can I Dance With an Ileostomy? (And What Can I Wear??)

There are these wonderful and totally not lowbrow "dance" moves called Crunking, and Krumping, and Grinding and this thing that girls do where they kinda squat on the ground and then bring themselves back up with their ass in the air.

Yes my friends, you too can do this and more even with an ileostomy.

Some years ago, I decided I was sick of staying home every Saturday night. So I said "Fuck this, I'm not going to be shy any more." I got dressed up, and I walked the few blocks from my old home to a bar/nightclub and I danced there alone, and amazingly enough, never once was drunk. I learned how to dance from videos and practicing in front of a mirror, and from watching other people at the club. I built up confidence from the desperation of being lonely and deciding that I didn't want my life like that anymore.

After my first ileostmy (the le loop), about two or 3 weeks later, my then-fiance (now husband) and I went out dancing. -------->

Awww. Look how sweaty and gross we look.

Because I have a little bag-holder, I felt like the bag was securely in place, and because I wear skirts right above the top of the bag anyway, I was covered.

You can flail your body about and twist around and spin and do all sorts of things. But what if the bag's full? One of the first places I changed by bag in public was in a nightclub bathroom... may have been this night, actually.

So by now you know how I change my bag... and though I don't get on my knees in front of a public toilet (holey god, eww); I crouch a bit over the toilet and get my spout as close to the edge and as far in as I can, and let it out. You don't hear any splashing or gross noises, and as I always maintain, it is better to do this than sit on the toilet and have liquid feces stream past your naked privates. (UHM... YEAH. TOTALLY ASKING FOR ecoli UTI, THERE. And totally gross too. Seriously.)

These are the outfits I usually wear, whether on the street or in da club.

And this is 2 of my outfits going out, hey heeeyyyyyyy~!

(That's my duct-tape dress-form in the background.)

Really, you can wear what you want based on how much you want to hide your bag. That's really what the ileostomy guides from the hospital should say. They're always like "OHHH-- you can wear whatever you want and whatever you wore before surgery." No you can't, jack-ass. You have to accommodate shit so it shields your bag, yo. Because you don't exactly want to announce to the world that those strange gurgling noises they hear just might be coming from the jutting pink penis on your lower abdomen. "Oh that? that's just my dick talkin. Yeah... good ol dicky, here. He likes to spit up sometimes. Messy little guy."

As far as dancing goes, don't be shy, man. Slosh that bag around. have fun with shit. In terms of bag safety, you might not want to dance with knives or needles in your hands, but that's good enough advice for any dancing, I would expect.

Skin Erosion & Rashes

Jesus Christ. They just don't prepare you for this shit. One of the probs with having a loop ileo instead of an end is that the loop is a fat stupid motherfucker that creates a figure 8 that you can't cut wafers and such to fit exactly, so guess what? Your skin around it gets burned by the acids from your output. And my fucking surgeon had the gall to say "Meh--we'll just keep it a loop. Looks fine to me. Dar Dar Dar." Stupid son of a bitch.

I've had problems with stitches. Those supposedly dissolveable stitches never ever dissolve with me. I've always had to yank them out with a tweezers. Weeeeeee! When I had my large intestine resection (the big scar going down from my umbilicus) the stitches for that were crazy infected. I had to yank them shits out and it was like someone was disemboweling me---No, I REALLY felt that when the nurse was pulling out the drains. THAT was disembowelment. So my stitches around the stoma are red and puffy and the skin around that is rashy from the stupid adhesive.

Sorry for the gross largeness, but I thought it might help some hos out there who wonder wtf I'm talking about, or want to compare their infections with me. The white around the stoma, that shiny shit?--that's Desitin, a diaper rash cream that's actually hella useful for this type of thing, but also why you can't really see how bad the infection is, as the cream is covering it :/

My suggestion for helping skin erosion and aiding in healing rashes is this. On the weekend, stay the fuck inside. Take your bag the fuck off. Walk around with toilet paper around your stoma, secured with tape if need be, but I'm not a high out-putter and my output isn't liquidy, so I don't have too much probs with this. My reasoning for this is the rash and the infection needs to breaaaathe. The skin is sick of being imprisoned under strips of wax and adhesives and it yearns for the cool kiss of a summer brease upon its malformed infected face. Also, I wipe Destin on my eroding skin and use Aloe vera gelly on the rashy part, but Bacitracin Zinc Ointment USP is always a good choice. this isn't just me advising this. I've dug around through ostomy forums for this info, and this works.

As I still don't have too many bags to be using recklessly, I've only gone de-bagged twice, but I think I'm starting to see the difference in the overall healing and happiness levels of my epidermis.

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.