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.

Vitamins & Minerals Lost with an Ileostomy Proves Deadly

So it would have been nice if an ostomy nurse or, you know, a fucking Doctor had informed me that once you have an ileostomy, the part of the intestine that actually absorbs minerals and vitamins like B12 and B1 (Thiamine Skip to the part that says "WHAT IS THIAMINE AND WHAT ARE THE CONSEQUENCES OF THIAMINE DEFICIENCY?") and all the other B vitamins is gone. Yeah. Gone. No big deal, right?
Without B1, you begin to get lesions on your brain.
Lesions. Deep sinking holes and sores that eat away at brain tissue. I was actually actively dying. Fun.

B1 is fortified in almost all of our foods, from bread to milk to cereal and whatever. That's why clinics and hospitals have stopped testing for B1 deficiency, as they assume most Western culture peoples consume of it in their every day lives. And that's true, they do. But for ileostomates, we don't absorb many B vitamins anymore. Some ileostomates have a pretty good diet, more normal to what they had before. Those of us that have had severe diet changes, well, at the two year mark, our B1 deficiency begins to show.

This year, I began to get disoriented, confused, angry at weird shit, and my hands and whole body were constantly shaking like I had Parkinson's disease--I felt like I was going mad, and even tried anitidepressants, which only made matters worse. Why did I change so suddenly? What the fuck was happening to me? I couldn't get out of bed, my entire body ached and hurt, I lost so much weight I now am just a skelaton.

My husband works at the College of Physicians and Surgeons in our province, and researched through their database to discover that after two years, quite a few ileostomates with drastically changed diets begin to develop B1 deficiency. Some have it worse than others. Some can manage it. Some aren't affected. But those that are end up, well, dying.

In Canada, it is legal to order B1 solution online, and we just walked into a pharmacy and asked for insulin needles and received them. When Thiamine enters your muscle tissue, it is the most painful burning like fucking liquid Napalm I have ever experienced in my life. I have had 8 or 9 surgeries in my life, and I have to say I would take another surgery over having injections of Thiamine. But I have them every few days anyway, because without it, I begin to slip back into a really disoriented and fucked-up state of being. That's no way to live, man. What the hell.

For those in the US, if you are very clever and don't mind spending a few dollars to save your life, you can find sources through the internet in which to receive injectable B1/Thiamine ordered from Canada. Not that I encourage anyone to do 'illegal' shit, but come on. Uhm...... Thiamine shouldn't be illegal to get. What the fuck--like you're gonna get high on Thiamine? Impossible. Like you're gonna collect a whole bunch and go to a middle-school in a trenchcoat and be like, "Hey kids. You wanna get Thiamine injections? Come on. All the cool kids are doing it."
You can never have too much B1 in your system, and you can never have too much B12. Your body just kinda deposes of it, like if you have "too much" vitamin C. It leaves through your urine and stuff like that.

Dude, this shit sucks.

Confidence after Ileostomy surgery--basic facts and Ileostomy Diet (plus 3 PDF Googledocs on the subject)

This is the Ileostomy Diet guidelines by The A.S.P.E.N Nutrition Support Patient Educational Manual

http://tinyurl.com/7kvbybv

As many many forums on this topic will tell you, wait waaay longer than the doctors say before you begin to eat normally. With my first ileostomy operation, I had them bringing me hamburgers the second day! But after extensive reading, and my husband's research, you really are supposed to wait 6-9 weeks before eating "normal."

That means soft things, watery things, a low-carb and substance diet. Lots of soups. Seriously, your doctor is likely a surgeon--not someone who deals with the nutrition after surgery. He did his job--now get out of his hair. Your stoma nurse will even assure you that you can start to eat normally.

DON'T DO IT.

You have to take it easy lifting and moving things around, including moving yourself, right? Because your stomach muscles are still healing. Well so are your intestines, man... think about it. These little squiggly squibs aren't used to being chopped in half and shoved around and sewn down. Who would be? Can't blame them for being sore with me after surgery. They did not like that kind of treatment at all. They even give mournful wails and squeals at times as if to express their sad humiliation and shock.

Like any part of the body, it takes MONTHS to properly heal. You may not  be able to see bleeding from your fading scar, but on the inside, it's still fighting to heal itself.

Since I'm posting GoogleDocs today, here's another PDF from my desktop.
http://tinyurl.com/7nu96s9
This little shit is regarding Confidence After Ileo Surgery, by ConvaTec. Let's just say the facts are good for people that know absolutely nothing about this surgery, like your grandparents or slightly "special" neighbor, but for the majority, I find it rather insultingly unhelpful. It's literally BASIC. You won't find any serious or personal questions answered there.

Here's yet ANOTHER one:
http://tinyurl.com/bstgd8v
this time though, it's kind of insightful in some ways. It is briefly about Colostomy, Ileostomy, and Urostomy life changes, small touching on diet, gas odor ect, bags, and activity level. Very brief though, so don't expect a lot out of it, but at least it's a little more information.
This really should have been one of the first posts I did, since it's kind of an introductionary thing, but I hope at least someone can get a bit of use from the Docs, or a bit of amusement.

I myself can eat those really boiled carrots that are completely mushy like baby food. Yes, I tried baby food for a week after my surgery---hell on earth. Horrible shit. Even the good expensive kinds. How in Buddah's name do babies eat that shit? I guess that's why after you give them a taste of real food, they never want to go back. For good reason. Just like giving dogs table scraps will spoil them from their food pellets.

See this kid? He knows what's up. "You shove this shit in my mouth one more time, I'mma shank you."

I can also eat mashed potatoes and gravy that are really really runnilly swimming in butter. Butter because I need the fat, and its watery because even scrambled eggs gives me a blockage. I've found that for everything I eat, drink twice its amount in fluids afterwards. That for me means fresh juices or hot tea with a pinch of sugar.

Like I've listed before, V8 is a god-send. It gives you the veggies you can't eat and still lets you have all the yummy nutrients. Carrot-juice is good too, but so are almost all juices.
They also forgot to list B12 shit on their Docs. The ileostomy is cut off and sewn down right on that part that absorbs B12. I get a shot once every month (another thing I desperately need to get in order in Canada) but I also take a sub-lingual dropper of it in this red liquid form.
 You can never get enough b12 from food, because your body isn't going to absorb it. Get them shots, yo.
And multivitamins. Can't stress that enough. Not to mention pro-biotics, especially for women to make sure we don't get yeast infections. Ah yes... yogurt is another thing I can eat, and most puddings, obviously not tapioca though, but I used to love it so :(

Avocados have alot of nutrition in them, and if you mash it up with wasabi and soy-sauce, you can even pretend you can actually eat sushi again! I just recently made a huge platter of sushi for our going-away party. (For when we move to Canada in a week). I cooked sushi and peirogi's and chicken pilaf and breads and I can't remember what else for our wedding.

I cook every day for my husband's meals... and I'm damn good at it too. But I miss being able to eat the things I make :(

Let's see... alot of ileostomates have a problem with drinking alcohol... but not me! Just do it in moderation and have something thicker (like a milkshake or my favourite, an Ensure) as a chaser. You need to cushion that alcohol with something healthier to ease it down your digestive tract.

In moderation, I can eat crackers. I've found pita pockets, cooked or fried in oil, become very crispy, thus turn into a crunchy powder when I eat them. This is a "safe" food, because it dissolves so quickly in my mouth, whereas eating bread of any kind normally results in glutinous ball of crap in my stomach that of course causes blockages, no matter how much I drink with it.

Every morning I rip up part of a pita and fry it in a frying pan, and very quickly they brown. Then I pour the oil I cooked them in (Olive Oil) and the chips into a bowl and eat them with a smear of warm cream cheese sprinkled with garlic. It is a very fast and delicious meal, and eating the oil with each bite of pita helps me both with the Omega-3 fats in the olive oil, but also helps me digest it better.

I eat the same thing every day without much variation, sometimes mashed taters, sometimes it's avocados. It sucks the balls, but what can I do. This is life. I eat my pills and my vitamins and ensure and hope that somehow that combination will keep me alive for another year.