Wednesday, November 30, 2011

Moving (to another country) With an Ileostomy--& other rambling crap

Vancouver, BC, Canada

At this moment, I dwell in the cold barren wastelands of Minnesota, where everyone comes to die. I wasn't born here, but I've lived out the majority of my sad futile existence in this Dante's last-level of inferno ice graveyard.
If my health can pan out evenly in the next handful of weeks/month before we are scheduled to move, I will be joining Mr B on our flight to Canada, where we will live for at least two years, and then hopefully hope the pond elsewhere, world climate depending, eh?


 Although their is universal healthcare in Canada--unlike in the USA--they have a shortage of actual General Practitioners and it is hard to find a primary doctor, as my permanent resident sister can attest to. As you need a Dr to prescribe your bags and meds etc, I am WORRIED, yall. TOTES WORRIED.

But there is:
Ostomy Care and Supply Centre
2004 8th Ave
New Westminster, Canada
I have had a couple different correspondences with them for my impending move. Mostly I was worried about receiving the products I use.
For British Columbia, Vancouver specific, Pharmacare is their provincial system, but as I'm not a resident, I have to physically call them on the phone or some shit when I'm actually there. UBC is the Grad School where Mr B my husband is going, and I've been told they should also be able to "hook me up" with a plan.
And apparently, this is from where I can order the supplies:
We are moving into a carriage house, which is located on the lawn of a wealthy lady's home. It comes furnished, so we won't be able to decorate it or do anything we want with it, as we'll only be living there a few months before we go on to another place. But if I had a choice, this is how I 'd want my room to be:

See? It makes great use by converting the closet into a place to put a single bed, and it's totally cute! Kawaii! 
Vancouver is super beautiful. Not the city.. i mean, that's nice and all, really clean and significantly more slick and quiet than anything I've seen before, Certainly not like dirty Minneapolis, but the Mediterranean rain forests are my favourite. Also, the Science centre, it's pretty neat.
Recently, I had to paint the skyline and shit for my sister, for a fundraiser she was doing at the Children's Hospital in BC.

I was trying to make it vaguely Mucha-esque, but whatevs. And forgive the coloured smudge in the right hand corner. I had to smear out my real name, because I've had waaaaaayyyyy too many crazies say weird ass creepy shit to me, and I don't exactly want them looking me up on Facebook :/
I had to paint it in an absolute rush, as my lovely sister told me LAST MINUTE to do so with no heads-up whatsoever :(  So it turned out awkward and looking like crap, but at least the face is nice.


Anywhoo, so that's Vancouver. Kinda. I shall post more pics of course once I get there, which I'm desperately hoping I can, as my health problems extend far beyond just an ileostomy :( :(

Monday, November 28, 2011

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.

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."

Monday, November 21, 2011

A rant about the "normals" that don't understand

An issue recently has been brought up to me on Facebook, and I feel very strongly about it,  and i know other people with Ulceritive Colitus, Crones, and other Intestinal disorders can surely agree.

The issue is when people ask you, in a semi-polite, rarely actually curious way "What are you doing now with your life?"
This can come from old teachers to classmates to friends to etc etc, but it still is touchy either way.
Right now in this economy, even given good education and good health--guess what's happening? Don't be a douchebag. Look at, look at CNN, look at BBC for news. No one's got fucking jobs, asshole. That's why the economy is tanking, along with a billion other things, so don't judge all of us who can't even find work at a McDonalds.

Secondly, and most importantly, whether the "normals" understand it or not, battling a Chronic illness, at most times, is nearly a full-time job. You think of us as lazy, maybe you think we just lie around watching soap-opera's all day. To this notion, I give a hearty FUCK YOU IN THE FACE. ------>

The anguish of just trying to nibble food and then having to run to the bathroom throughout the day because of it, because of your condition, is heartbreaking. Curling up on the floor in pain, weeping because it seems the stabbing in your guts will never stop, wishing yourself into death because of it--This is no life. This is just anguished continuing suffering. If everyone "normal" could remember back to the time they had the flu maybe, or when they ate someting horrible: well, it's like that 24-7 times 1,000. Every. Single. Goddamned. Day for people trying to battle this shit. And surgery? It fixes some things--even alot! Don't get me wrong! But afterward, your life isn't magically changed into a "normal" person's life.

My friend is a First Lieutenant in the army, and every summer he vists me. So summer 2010, he took me out in his car, saying we were going dancing. Nope. We went to his friend's house, where I met this tall deep-voiced shy young man with a scruffy beard and an Austrian accent, and... and I had to meet his mom. It was fine, randomly having a parent crash the party of three young kids getting-together, but she kept grilling me about why I wasn't in this or that University, why I was a failure for not having this or that job, and didn't really like that I told her I finished most of my University classes in accelerated courses while I was still in High school, and, in fact, graduated from my Prep School a year early because of my grades. (I had a disease that kept me out of sports and parties and extracurricular activities of all kinds. Of course I studied hard. It was all I had :( :(
In front of my Lieutenant friend and this new tall boy, she kept grilling and grilling me embarrassingly, not caring that I was obviously uncomfortable with the questions, just wanting to shame me for not going the path she thought everyone should go out of tradition.

If I had known her better, I would have turned to her and been like "Hey lady? Guess what. I've struggled with a birth defect my entire life that has left me basically incapacitated for over 15 or 19 years. Sound Fun? I've been going to hospitals once a month since I was 9. For surgeries, for adjustments on my TLSO back-brace, for tests, for cultures, for god knows how many things. I've spent weeks at Mayo Clinic in Rochester, MN, where they starved me for a month on nothing but clear liquids so they could run a damaging banister of tests on me. My heart stopped. I went into cardiac arrest when I was 18 after all these tests. I was lucky to survive, but I'm still not okay. I have to take medication for my heart every day. I can barely eat anything I want. I still struggle with just daily living that you take entirely for granted. So yeah--I don't have a job right now. I'm not at a University. And yeah! I'd be lucky to just live like a bum even--maybe they aren't in constant agonising pain that drives you to think the only solution is suicide. So FUCK YOU. FUCK YOU IN THE FACE, AND FUCK YOU IN THE HOLE I'M GOING TO POUND THROUGH YOUR CHEST IN MY FEROCIOUS ANGER."

Go ahead and judge me, cunt. Just go ahead.

Anyway, this bitch became my mother in law, as I married the soft-spoken kind tall man, but she never once stopped judging the shit out of me. She works in the health-care field too, so you'd think she'd be a little more sensitive, but no. Every single chance she'd gotten, she's told her son, my hubby, to get away from me, that I was just a sickly piece of crap that would drag him down, that with my illness, I was worthless, that I would never provide her with grandchildren that I would never be able to hold a job, and so much more, over and over, where even the father, when I told them we were getting married, he was so disgusted he even mimed that he was going to vomit.
My hubby's family is so unlike him, it's amazing he came from them, but they have truly and honestly hated me from day one, and even more so once they found out how ill I was. Even through my surgeries, they kept trying to get my Mr B to leave me, to just walk out the hospital room where I was, to just leave and never come back.

To this, I say: I am not worthless. I have many talents, I have a big heart, I have a lot of love to give that obviously you lack you cunt asshole. I am a human being. I am a daughter, a wife, a sister, a writer, a musician, a singer, an artist, an animal protector and love-love-lover!!, I am so many things that your puny mind couldn't even conceive the wealth of all the love I have to give.
Now I can talk a lot of shit in writing, sure, but I'm actually pretty soft-spoken myself, and I don't say hurtful things to other people. I just don't. I haven't acted like a good Buddhist in my writing. It's angry and full of cuss-words many times, but I know in person, these people that ask you thinks that hurt your feelings, or people that even outright mock you for your conditon, they are just confused, they are just saying things offhandedly without really "thinking" about it. Sometimes they are scared, too. Sometimes they feel like they can't handle the seriousness of what has happened to you. Sometimes they feel dumb that they don't understand.
So to these idiots, to these small-minded dumb superficial people, just shrug. Give your response with a flightly smile. Pretend you don't care. Say "Oh you know, just hanging around" "Just surviving" or change the subject quick to the weather. If they keep pressing on, just keep telling them, "Oh odd-jobs here and there" "Just doing what I can to get by" and try not to talk about your illness at all, if you can, as it just confuses the tiny little rat-people.

I'm sorry for the rant, but i have lived with these questions so much for so long, and though I have mostly gotten good at giving vague-passing answers, sometimes I still get angry at them.

How do YOU deal with these kinds of questions??

Friday, November 18, 2011

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
*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
*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

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.

Wednesday, November 9, 2011

Sex After Permanent Ileostomy Surgery

Some weeks ago during my check up with my surgeon, I very bluntly asked him when I could expect to engage in being physically intimate again. He said, in his heavilly accented English, "In Sweden--you are done. Healthy. Four weeks. Good. In the United States--they say 6-9 weeks." He shrugged. "Just do what feels comfortable and don't push yourself beyond that."
 During a total colectomy, almost, if not all, of the large intestine is removed. One of the most common complaints from women after the surgery is Dyspareunia, pain when having sex. There's a reason for this.
I hate to have to do this to you, but here's a shake-yo-head nasty diagram of a female pelvic floor.

See? Tiny muscle like a skinny saddle right under all that. This shit is fragile as hell. Fuck, man. After my large intestine resection, I was diagnosed with Pelvic Floor Disorder at Mayo clinic in Minnesota. I went through a week of pysical therapy with probes and leads stuck to my abdomen and everything. I do my Kegals every day (been pretty lazy lately, though). There's a book, Saving the Whole Woman that is pretty useful too for certain exercises and all that. I recommend it, but don't let all the crap  they say freak you out. In the book, the writer is like "no surgeries for anything!" and dude, sometimes, you just gotta have a total colectomy. Or a hysterectomy. Or whatever.

But onto sexy times.
So after waiting a gruelling 4 weeks, I was like "I'm tired of this shit. I'm not bleeding anymore, I've had a shot of 151--we've having sex. NOW." Always after a major surgery, when you ease into normal life again, you gotta take stuff slow and be cautious. I have a very gentle partner anyway, so it works that I'm the agressor and he can slow me down before I hurt myself.
What assists is tilting your vagina so it doesn't hurt when you're first easing back into a sex life.
Here's my shit drawing on Micro Paint to demonstrate.

On a flat surface, lay a small firm pillow under the back of your upper hips/buttocks. This raises the pelvis and makes entery easier, tilting you at such an angle that gravity helps the vagina stretch out a bit more :)
It's not the most exciting position, but it works, and if he wants to grab you and turn you around so you are riding him, that also works too. No, nothing gets jostled loose inside, nor are you going to rip open your stitches and have internal bleeding. Jesus. You're not having sex with a jackhammer, are you?

Anyway, if your doctor recommends a total colectomy, open up a dialogue with them about your concerns about removing the rectum. Because I don't have a degenerative disease like Ulceritive Colitus, I was able to speak with my surgeon about leaving some--I got maybe maybe 30 cms--of my rectum to help support the vagina. Without the rectum there, the vagina tends to collapse downward and certainly with gravity, it begins to make things down there very painful anyway with just moving around, much less trying to engage in sexy times. Like I mentioned, if there's no way around its entire removal, do read the Whole Woman book for what you can do to strengthen yourself, but otherwise, please please speak lucidly to your surgeon and be adament you want to save a bit o' the rectum!