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

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.

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."

Nutrition after Ileostomy

The very end of your small intestine, that little ilieum place right before the large intestine is where B12 is absorbed. For ileostomates, that little hook of intestines is folded back and sewn onto their abdomens, making the absorption impossible.
People with low B12 are also much more prone to develop chronic shit like heart disease, fibromyalgia--which is where like your entire body is a cut-glass assembly of horrible pain-- and the dreaded cancer.
B12 is essential for blood to form and tissues to grow. The reason why you're fatigued with B12 deficiency is because it helps fat and protein to metabolize in your body. When that happens--bam! Energy! When it doesn't, you're tired as shit.
B12 also reduces homocystein levels, which, if it's all elevated and shit in your body, ya'll can develop cancer, cardiovascular disease, Parkinson's and wham you with a stroke, not to mention you'll forget everything except for your shitty childhood when you get Alzheimer's. :(

For Norms--people without ileostomies, B12 can come in poultry, oysters /seafood, Eggs, milk and meat. For those with ileos like me, all meats are hard to digest, no matter how many times you grind them up in a baby grinder. I can eat a little bit of eggs, but not nearly any seafood I can think of, though I take a multivitamin a day to keep me active.
B12 deficiency is classified as

*mental confusion
*headaches
*paranoia
*Depression
*balance is waaay off
*Kinda feel foggy and floating and weird as shit
*you can lose your appetite, and maybe even barf
*You're super weak, and can't really do a lot before you suddenly feel super exhausted like an old person

I went to my primary and had my blood levels drawn, and after speaking with him about my deficiency, he decided to give me a shot of B12 once a month as well as me taking a B21 supplement sublingual (under the tongue) from Wallgreens. I fill up the eyedropper top, and squirt it under my tongue, where I let it sit and absorb for a minute, then I swallow it. Doesn't taste too bad.

But this isn't just a post about B12. I also drink Ensure plus, Pecan flavoured, every day. Sometimes a bottle and a 1/2.

Whether you want to admit it or not, whether your nurses will ever tell you or not, your body WILL  be deficient of vitamins after you have an ileostomy. You MUST take supplements like multivitamins and for the ladies, probiotic pills---to make your Vag doesn't get any weird infections--in order to keep yourself running.

For the proper amount of calories, I recommend putting a little tablespoon of coconut butter in cocoa to drink. The coconut butter doesn't have any trans-fat or anything that would get clogged in your heart. I only recently came across this with my husband's insistence. It has no flavour, so it swims in a clear shimmer on the top of your cocoa, but it's not big deal to stir.

Every morning, I drink an 8 ounces glass of V8. It actually has become something I look foreward to, before I fry my pita-bread in olive oil with garlic and smear on cream cheese. It's delicious, and when I get  the pita bread to a crunchy crumbly fall-apart consistency, I can actually eat it. I get calories from the olive oil, get my carbs from the bread, and I get satisfaction spreading cream cheese on it and sprinkling that with garlic powder.

That brings me onto my next part: CALORIES.
Maybe before your ileo, it wasn't a problem getting too many calories, maybe it was just the opposite. Although alot of people with Ileostomies have no trouble at all eating whatever they want, there are a great deal more who, I've found out, are more like myself. With their severely restricted diets, it's quite a challenge to find foods they can actually digest that wont cause a blockage, and this often leads to body-weakening malnutrition.
You need to take multi-vitamins every day anyway, but I also recommend Omega-3 fats, like from Fish Oil. Because the gel capsules I'm too wary too attempted swallowing, I take a teaspoonful of liquid Fish Oil a day, something I found in the organic section of our Supermarket, although Heath Food stores should carry them too. Look online, maybe there's a nice little shop from where you can order them.
Anyway, Calories.

Olive oil
Virgin Olive oil I pretty much put with anything. Some people actually drink this stuff by itself. Gag. Puke. But it's one of the healthiest monounsaturated fats, regulates heart health and helps maintain your cholesterol.
As Olive oil is a monounsaturated fat, it helps insulin levels and blood sugar control.
It took a while to get used to the strong taste of the healthier cold-pressed version, but it really does benefit your health.
 I use a mask for my hair that includes olive oil, and restores shine to it once I rinse it out. I have an organic lotion where olive oil is a key component, so I rub it in tiny amounts onto the very dry patches on my face, namely my giant cheekbones.

Coconut Butter
I use this in cooking as a substitute for butter.
Coconut butter has medium-chain triglycerides, which also reduces cholesterol, heart disease, promotes calcium-absorption so y'all don't get osteoporosis, boots immunity with Lauric Oils and slows down aging. Damn, dude.
It is 120 Calories per tablespoon, but unfortunately, people tend to lose weight instead of gaining it while using this oil, as it stimulates the metabolism.
Still good stuff, in my world. I add it to tea, where is swims around all flavourless and clear at the top.


DehydrationBig-ass deal for a lot of folks with Ileos. Their squirter squirts a little too much a little too often. They always say "drink 6-8 glasses of shit a day", but for smaller kids, that's obviously a recipe for water-intoxication, and for much bigger people, that's not nearly enough! It's so stupid how they keep on doing this "one size fits all" for health care, especially in the very backwards-thinking US. Don't fit the machine until it breaks down entirely, is the mentality with health care here. I couldn't get get my permanent Ileostomy by my original Dr Asshole surgeon, because he said he "didn't care about quality of life" and that I'd need to have "a life-threatening emergency" in order for him to make it a permanent one.
Luckily, my second surgeon was from Sweden, and got it right away :)

Anyway, keep a bottle of juice or water with you at all times. Pedialite makes a powdered package of flavours you can pour into the water when you are beginning to feel fatigued, and they apparently also make freezer pops.

The symptoms of dehydration are as follows:

*Dry, sticky mouth
*Tired and sleepy as shit
*Decreased urine output
*Dry skin
*Headache
*Dizziness or lightheadedness
*Low blood pressure
*fainting and shit, dude

This is why I always keep a bottle of water/juice with me in the car, wherever I go. I also do that because I have trouble with my blood sugar, and it had gotten hella low in the past. I need to keep that up and keep my ileostomy digesting well.

To add more calories to my diet, I melt Promise Butter with my mashed taters and add garlic and pepper afterward, and also use vegetable oil for things I cook, or use olive oil. Ensure is also one of the best things keeping me alive. I drink it throughout the day. It is good for you, and if insurance covers it---whee!

I also take a powder called "Mus L Blast"
I know I linked to a scary body-building website, but shut up. It's actually super healthy for you, with fuck tons of amino acids and vitamins and shit. I have been taking this powder in milk since I was 12 years old, trying to gain weight to please the people around me who never let me forget that being skinny was hideous.

Let's see... what haven't I covered? 

If you can think of anything else I should add, please let me know!!

<3 Tinylittlelifeform

Disclaimer:

Hey duh. I'm not a doctor, although nearly everyone in my family

works in the surgical, nursing, phych, OR, and ER. I've gained lots of info from

them over my lifetime, alot of info I don't even want, but if something

is seriously wrong with you, don't be an idiot. Go see your primary or set up an

 appointment at the hospital to find a doc who you can call your primary.

 Or call your surgeon, if that's available.

 This info is for getting ideas, not the end-all be-all God's truth.

Ileostomy: What NOT to eat, ever, and WTF about Blockages

You got an Ileostomy. Bitch. Moan. Get over it. I loved steak too, but there's some shit we can just never have again with an ileo. You can test it if you want to spend a day or more in the hospital, and one woman I've known had a blockage for 5--FIVE--weeks!!! She was in the hospital on TPN because of that little stunt, care of corn or maybe it was pineapples...
Anyway, if you care about not having horrible stabbing pains in your gut, here's a list gathered from around the Internet and from friends, compiled entirely here.

                                                 WHAT YOU CANNOT EAT:

     *Oatmeal/porridge

 *Be CAREFUL eating pasta!!! (My suggestion is to grind that shit up)*Bananas thicken your output, so if you have trouble with output like me, avoid those fuckers
*Same goes for smooth Peanut butter, but hell no you can't have crunchy anyway 

*Chinese vegetables such as bean sprouts and bamboo shoots (they suck anyway)
*Citrus of any kind, like oranges, fruits with membranes attached    *Cereal     *Raw vegetables--carrots etc    *Berries, although I know exactly one person who could eat a handful of blueberries and it was fine with their ileo
*Nuts     *Corn      *Popcorn     *Fibre (After a life-time of fibre-only diets, I say "Fuck You, Fibre!!!")
*Potatoe skin       *cucumbers and tomatos

*Raisons      *Grapes (any fruit or veggie with a peel like)--> *Apple skins
*Celery    *Wild rice      *Pineapple     *cauliflower/ broccoli, unless it's been cooked to hell and back
*mushrooms     *Lettuce    *Coleslaw   *Milk products or creamed foods slow the emptying of the stomach, promoting vomiting, and may be poorly absorbed, so avoid if you want
*Raw cabbage      *Green peppers     *Peas--(eh, fuck peas. Who needs em.)
*Dried fruit      *Absolutely no motherfucking seeds ever
*Celery        *Coconut

I'm reminded of that scene in Requiem for a Dream where the mother is looking at her diet plan, and all she sees is NO NO NO. That's basically going to be your life, but it slightly beats death, right?

Anyway, say you've been a good little bee but you still get blockages because you probably have adhesions or you need to be dilated or something. What the fuck do you do? Here's some tips before you go crawling to the ER:

   1. STOP FUCKING EATING. Seriously. Nothing else should pass your lips but lops of warm fluids.

   2.  massage the fuck out of the area around the stoma. I do this anyway just to get my watery mashed-potatoes to pass because fuck knows what's wrong with me.

  3. Try a hot bath, I haven't 

  4. Use a heating pad over your abdomen.

   After a period of time, the blockage will either be passed or you're fucked. Symptoms increase when you become totally obstructed. Cramps become more severe, nausea becomes more severe, and your barf your brains out. 
          

If you need to go to the ER, here's a great dealy thing from the United Ostomy Associations of America to print-off for the retarded ER workers that scrunch their noses up at stomas and scratch their heads in oblivious confusion:

http://www.ostomy.org/ostomy_info/pubs/blockage_card.pdf

Ileostomy--What to Eat After Surgery

I really wish someone had published a list and tips like this before I had surgery. It would have made life a whole fuck-lot easier. But here's my advice:
*Mashed potatoes. For REAL. Whip that shit with butter for both calories and to keep it a really airy consistency.

*Invest in a baby-food grinder. It sucks, but it's a reality you have to deal with. Shit you eat is going to have to be that kind of consistency, on top of drinking a lot of milk or fluids with the food anyway.
*Gravy is okay
*Processed cheese, like in a jar
*Oscar Myer Hotdogs (ground up of course)
*soups of any kind as long as it doesn't have chunks in it, and if it does, grind that shit
*I browned some hamburger, then ground it up and put it in a jar in the fridge. I advise others to do the same with both meats and soups, and pre-boiled veggies.
*Cream of anything in a jaw. Except watch out for cream of mushroom, pick out those stupid mushroom bits.
*ICE CREAM---yeaaaahhhhhh!
*Braunswieger liver pate-crap. Never thought I'd get sick of this, but I so totally am.
*Yogurt
*buttermilk
*sour cream
*butter/ margarine/ any kind of condiment that's not chunky like salsa
*hummus
*any juice
*v8
*juice slurry blends
*scrambled eggs

Complain if you want, say "I wont do that--no way!" or "Well, my doctor never told me about that, so it must not be true." Go ahead. That just leads me to my next post: Blockages.