Thursday, October 16, 2014

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. :/

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.

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.



  1. Sorry is depression common after surgery? I Have an ileostomy,and I find myself laying in bed most days wondering why am so depressed. I'm not sure in my 46 years of of ever felt this hopeless. No I don't want to hurt myself or others I just want to be able to join life again. I guess a better wayto say it is I want to be happy I want to feel like being apart. I'm just so tired all the time I swear I could lay in bed all day every day I have a hernia around the stoma that looks like the end of the football the doctors tell me there's not anything they can really do about it because my surgery is still too new. I got this hernia right after surgery no one was there to help me out of bed and I had to go to the restroom so when I stood up I passed out and that was the beginning of this giant football sticking straight out of my gut. I did not know I would wake up with the newlyformed ileostomy. I just know that I went in for a high fever and thought I had the flu and find out that my bow was leaking into my body. I'm 45 I have children I will soon have a grandchild and now I have a football sticking out of my stomach. I'm a little pissed off okay I'm a lot pissed off but I'm alive I should be happy but I keep thinking I'm not going to be able to snorkel anymore because I can't keep this stupid bag on it slides it defaults I hate it I mean I have my shit stuck to the front to meI know I'm alive and yes this is a rant I'm ranting I'm pissed off but again I'm alive I can't say these things to my family friends or others that know me because everyone keeps telling me how lucky I I'm going to seem a little ungrateful right now but I don't feel so lucky I feel kind of stuck stuck in a body I didn't agree to I know I sound like a spoiled rotten child I guess I am. Okay so there's my rant but my question to you is how do I get it back how do youhow do you stay so positive how do you laugh about it how do you do that do you see a counselor to someone slap you around and say you're positive ha ha you're so young yet you just seem to have it please explain

  2. Hey tee pop hang in there, it compleately normal to have those feeling. I had a hernia and had surgery 6 months later to correct it find me on realself .com it help tons

  3. I just wanna say that no need to be depressed. Try to live your life normally as people around you loves you a lot. You can also use the Ostomy Lingerie if you face any problem in wearing your favorite dresses. I know you are strong enough to fight but hope so that you will find it helpful.

  4. Such a fantastic article! More ostomy care blogs need to have a little humour because it really does help us ostomates get through the toughest of moments. With the #GetYourBellyOut campaign, I've certainly witnessed an increase in public awareness of ileostomies and colostomies, therefore life is becoming a little more free.

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