Thursday, December 29, 2011

Rectal Stump Suctioning & Stomal Stenosis

A month ago maybe, I had my rectal stump suctioned out at my Swedish surgeon's office. He's the incredibly intelligent dude who talks to you like you are a human being, but he doesn't hold your hand and certainly doesn't fuck around.
So some peeps who have a total colectomy, every 2 weeks or something they'll have rectal drainage. It's just a smidge of clear jelly, as your intestine is still creating and shedding its lining and all that. Well, mine doesn't feel like following orders and so I went to his office for suction time.
Friends, neighbors... back when I was a teenager before my large intestine resection, I had to bend over ass naked on this table and a Dr stuck a looooong scissors up my asshole and took a SNIPPET of the inside tissue to test for something whatever. I WAS STILL AWAKE. I was given NO DRUGS. I was given NO WARNING. I began to have Vasovagel reaction from the pain, high-pitched noise in my ears drowning-out all sounds, my vision clouded and white, my body's blood pressure plummeting alarmingly. Yeah. So that was pretty fucked up, but this suction thing wasn't as bad as that but still by no means do I recommend it.
It's heavy on the ass-rape, and as I've never been one to travel the road of the difficult brown, I didn't kin much to my Swedish surgeon finding out just how much pain I could tollerate before I broke down completely. It was like a Saw movie.
So they lie you on your side with a sheet covering just the unclothed bottom half, then jam a tube up your no-no, then flush some liquid junk into it and suction it back out. I was shaking the whole time from pain and doing this thing I do when I'm really really hurting, where I kind of growl through my teeth. I've never been a screamer. I've never gotten scared and screamed, not even on rollercoasters. On rollercoasters, I get really sarcastic and start saying shit like "Oh boy. Here comes the big drop. Oh good. Okay. Great. Looks fun." I've even had people tell me to shut the fuck up, and rightfully so. But I don't scream. I got my foot run over by a car once. I just kind of looked down and said really quietly "oh." Like I'd stepped in dog shit. No... I think if I'd have stepped in dog shit, I might have had more of a reaction than that. But anyway, I don't scream, and though I get many tears in my eyes, I don't cry. It's shit for the vocal chords, and it's annoying as fuck to scream. I heard kids screaming all the time in my old neighborhood--you try and tell me with a straight face the sound of high-pitched little kids screams at 7 am on a Saturday morning is ever EVER on your top list of cherished noises to burn on that CD of Songs to Listen to for Peaceful Living.
I can't even lie, I dreamily contemplated murder.

Oh yeah--and while I'm mentioning fun facts I forgot to mention earlier, back when I still had my le loop stoma, my uncaring bitch of a first surgeon (Dr Asshole) checked for stenosis (narrowing of the small intestine due to strictures/scar tissue) by shoving his bloated finger down into my goddamned stoma opening. I now know what it feel like to be raped in the stomach. And once inside, the fucker kind of wiggled it around too, you know, just for fun. It was a strange sensation, to say the least. Not necessarily painful, as in it didn't totally hurt, but it's an uncomfortable feeling to say the least, to have someone dig around inside your guts while you're un-anaesthetised and quite aware and watching.

Misgivings and Fears prior to Ileostomy Surgery, & what to look out for on your own

So you're scared about having an ileostomy surgury, but you've reached this desperate point in your life where you're actually researching it, and stumbled across this blog.

 There comes a time when you have to weigh the convenience and the quality of life against your fears. Too many times, asshole USA surgeons I ran into didn't even know the phrase "quality of life". They would scowl at me like I was speaking some alien language. They didn't deal with that. Over and over I was told "I operate for emergenceis." If SO--then they should work in the ER. Fuckers. Quality of life is when a doctor can actually restore you to a "better" sense of life with less pain than you are now in. And isn't that the vow of ALL doctors? Do no harm? Help the patient? It isn't a delusional addicted mind asking for more pain pills... no one begs to have an ileotomy done except me. Yeah. Not like I loved the idea--but I had come to a point in my life where having a shit-spout in my gut was a fuck of a lot more preferrable to the other option, which would have been DEATH. Too many bitches passed me off like I was frontin' and just trying to get an ileostomy for fun?? WTF. Yeah--my dream in life is to spin in circles and shit at the same time like a garden sprinkler.

I'm a Buddhist, but dear fucking gods, I cannot stand assholes like this who get a bit of an education and take a shit all over their patient, as if they were god and they can play marbles with the outcome of your life and fuck you if you don't like it because their degree is bigger than yours.
Listen. My late father was a surgeon. I know VERY WELL their attitudes. Maybe only once in my life have I ever met/spoken to/interacted with a sugeon who was willing to really listen, and really just be a normal humble kind person with me. It usually takes a certain attitude to get into the job, one of gradiose, one of god-complex, a bit of narsessism, and a whole lot of secret shame and emotional injury to drive them to think abusing poor suffering souls is a good and just idea. Wankers. I hope they're tortured in all 9 levels of Dante's hell.
I say "usually" because I know there are always exceptions.
A lot of surgeons don't like to operate on Crohnes patients for ileostomies because it's not like it cures the disease, but this is what I was talking about with "quality of life". Giving a weelchair to a crippled guy isn't going ot make him walk again, but he can be mobile on his own, and give him back a sece of being independant again. To doctors that don't understand this, I hope you or someone your black heart loves suffers through the same situation as you force your patients through.


Here are some questions I'll address.
Others have had diarrhea/diarrhoea where the digestive enzymes burn on exit. They're afraid of getting the stoma in case it burns just as much.
 The stoma IS and ISN'T like an anus. It acts in much the same way, but things exiting will not hurt--unless you have some kind of blockage, but that's another matter for another time, and earlier posts. The only time digestive juices hurt is when it repeatedly touches around the OUTSIDE of the stoma, which casues skin erosion and skin breakdown similar to a sore all around the outside. 
You see, the stoma itself has no nerve-endings, (PDF from American Cancer Society) as it is just the small intestine turned inside-out. It may even bleed, and you don't really have any idea unless you be all up in its face, checking it out all the time and poking at it with your comact mirror. The majority of ileostomates--myself not totally discluded from this list--will have watery output. If you have something seriously going wrong with you and it's waaay fucking watery--you will know. There will be other signs of something going off inside your body, Trust. But again, normal is liquidy, depending on diet and fluid intake. And no, it doesn't burn, it doesn't sting, it's not like having diarrhea. It's just a bother to find another toilet to dump your bag into, but so what?

Depending on how big your body is to begin with, and how much you normally put in your stomach, the nighttime bag-drainage is not a problem. Sometimes during the night, the majority of us, young and old, get up to take a wizz. After doing so, give your bag a little jiggle to see if it's full. I do this during the day anyway. I cup my bag like rappers cup their junk--and feel it to see the weight and heft--and if shit's heavy, I dump it out. No big deal.

Does insurence cover ostomy supplies? Do bears shit in the woods? Mostly. It's a damn fucking shady insurence to not cover, uhm MEDICAL SUPPLIES needed for you to uhm STAY THE FUCK ALIVE. It depends on your own individual insurence of course, and right now I'm going through my own hassels trying to get insurence set-up in a new country, but medical supplies are usually covered. In some way or another. It's worth your life to fight them on it too. Get doctors to sign shit you type up outlining why you need bags and supplies, if it coems down to it. This is a no-brainer. I got both my GP to and surgeon to sign a paper I printed out saying how many osotmy bags I needed each month, my strip-pate needs, my liquid adhesive, ostomy powder and Melgasorb needs each month. DUDE, don't be shy. They are doctors. They are human beings that aint god and they are there as a public servant that you are MORE THAN LIKELY paying for. Fuck asking them. DEMAND that they fucking sign it. This is your life.

And lastly, when you have your little stoma, of course you are going to be worried about it. Especially in the first few weeks. It's like taking a newborn infant home from the hospital. Every little thing makes you question whether it is safe or if what you are doing is good enough. Even though I'll wager I've written something similar to this before, here it is again.
  • If you have stomach cramps lasting more than 2 or 3 hours (and it's not period/menstrual related)
  • Nausea and vomiting for more than a day
  • No ileostomy output for 4-6 hours combined with cramping and nausea
  • Pretty fucking watery output continuously for more than 5 or 6 hours
  • Bad odor lasting more than a week (This may be a sign of infection.)
  • A deep cut or injury to the stoma (This is when I went to the ostomy nurse, when the ostomy wasn't sewn down right)
  • Bad skin irritation or deep ulcers (sores--dude man, same as above in my case)
  • Fuck tons of blood from the stoma opening
  • Continuous bleeding where the stoma meets the skin (SAME FOR ME PART 2, Y'ALL)
  • Unusual change in your stoma size and color (Usually hand-in-hand with blockage)
  • Anything unusual going on with your ostomy (It makes hotel reservations for Florida while you're sleeping, doesn't complete homework after school and hangs out with the "wrong" types of kids)

So how about it, kids? Any more questions/concerns? Either leave a comment, or sent me a mail if you're a little to shy to publicly ask. When I gather enough Q's together, I'll do another question-answering post.

Care for a Flush or Retracted Stoma

Forgive me here, as I don't know much personally about it, so this page will be riddled with references and links. I know this affects plenty, so here we go.

A "flush" stoma sits skin-level or even retracts. Not only is it super hard to take care of and/or fit for appliances, but the leakage around it from improper fitting and frequent pouch changes can end up being frustrating, painful and expensive.

Prolapsed ostomy= red elephant trunk
 I don't necessarily LOVE having an ostomy that is roughly two inches long, but like a flaccid dick, it just kind of hangs down in a little curve like a sad rainbow and isn't that noticeable. In any case, it is much easier to pour from an actual spout than it would be to pour from a hole carved into your gut. Much easier to clean, too. (At least it's not prolapsed, like this horror-story here--->)

If you have a flush or retracted stoma, it's hard to maintain a proper seal. That's where convex products come in.

If you are looking through an ostomy catalogue, you'll come across shallow, medium and deep convex stuff, depending on if your stoma is situated in folds, you have leakage, or the damn thing's super retracted into your body like a red belly-button.
The list of products available are pretty straight-forward on same as above link, but if you're too lazy and hate pop-up windows, here's the copy-paste:
    Convex inserts:  Inserts can be applied to a two-piece system by snapping an insert into the ring of the flange. The outer diameter must match the flange size. This can be cost effective as this insert can be cleaned and reused.
    Pouches Designed with Convexity:  These are available in both one and two-piece systems. They can be shallow, medium, or deep. They come as either precut, cut or cut to fit.
    Addition of Skin Barrier Gaskets:  These are used around the stoma and can be cut or purchased precut. One layer or several layers can be used.
    Eakins Wafer / Colorplast Strip Paste:  These are products that can be pressed into shape around the stoma to protect the seal. 
    Use Ostomy paste for “caulking.” Always read and follow manufacturer’s direction for product use.
Product Information:
    Most ostomy companies make pouches with convexity and carry inserts as well as belts. 
    ConvaTec uses a product called “Durahesive,” which has a turtleneck effect around the stoma.
    Hollister has the “Premier” series that does not erode.
    Nu-Hope makes barriers that are oval as well as round and which have deep convexity. Nu-Hope also makes support belts and Hernia belts for urostomies.
Here's some tips on how to treat de-nuded (ie rubbed the fuck raw) skin around flush stomas, but the info here I've seen proves pretty useful for any ostomate experiencing a rash or that raw open-sore like place around your stoma. I use 3 M No-Sting Barrier Film every day. Shit's awesome. 

Sunday, December 25, 2011

Calendar or Collection of Short Stories for ileostomates!!!!

There is this awesome guy named Chris, and he's doing a project that might either be for a calendar of ostomates displaying their bag in sexy, funny or elegant poses, or a grouping of short life-stories about our experiences. He needs more people on board before he can continue, however.

There are waaay too many goddamned bad jokes out there about colostomies and colostomy bags and ileostomies and an overall public agreement about it being disgustingly nasty. Spead shame onto people that can't help it--good. Real good. Hope those assholes are proud of themselves. Hope THEY never have to have one.

He thinks--and I back this 100%--that the time is ripe to raise awareness about diseases and conditions that lead to young adults having to have external bags. He's aiming for an overall message of empowerment, because fucking god-damn. Not everyone can just be born with perfect healthy bodies.
When some kid is struck down with Crohns, or say colon cancer, or Ulcerative Colitis or diverticulitis, imperforate anus, Hirschsprung's disease, Colonic Inertia or slow transit or is in an accident where they must have an Ileostomy, what can we say for them? Where can we point them to, to show that life DOES go on, that isn't really not that bad having an ileostomy, that it can be fun, flirty sexy whatever--that having a stoma and bag is just another part of your body no more than having a birthmark? No where... NO WHERE on any dating site, on any friendship query to mark off does it say one MUST SHIT FROM ASSHOLE to be acceptable. I don't think so. But not every ostomate has that kind of confidence, either. We need this. Ostomates need this. Our kids need to see this. Our friends and our grandparents and our teachers and our lovers need to see this. We NEED to be a part of this--if anything is ever going to change, a group of people need to decide they don't like the way things are going, and not just sit back and wait for others to do something about it.

He is looking for regular people, but young people especially, since too many of our young are told to shut up and shy away into hiding with their little bags.

If you have an ileostomy, please contact him.

Please think of the children.

Poo on a Plane--& First Days in Canada (Travel advice for ostomates)

We finally hauled all of our life (what we could pack into a few bags) onto a plane and made our way to Canada. This pic is in the airport, waiting near our gate.

Looking out the window as we sat on the runway

Within the tiny TINY plane

On the runway still...
The plane does this thing where the engines start and everyone gets really excited, adrenaline rushing, thinking we are going to take off. Not so. It's just got indigestion. About half an hour later we finally start to move a little bit--YAY!! But then we don't really go anywhere. Another case of blue-balls.
FINALLY FINALLY the plane starts taxi-ing down the runway and the roar of the engines is rumbling through your entire body, and your chest hums with the sound of the jets as it begins to lift off the ground.
For me, there's always this moment of terror/pleasure, like being on a roller-coaster as it's climbing to the ascent, just before the drop.

View of cities from the window

Okay. Here's where things get serious. How the hell do you empty your bag on an airplane?  I've heard so many horror stories of this situation, and now I "got" to try it out for myself.

First of all, whenver you travel, MAKE SURE YOU HAVE SUPPLIES HANDY. Not packed away in an overhead thing, but in your purse or carry-on, something that you shove under your seat or have handy, like with you if you are in a car. And this goes for riding in a plane or car-- DON'T lay that seatbelt over your stoma. it seems unavoidable, but here's what I do. I Ball up an item of light clothing and place it over my stoma, and the seatbelt rides a little higher then. And DON'T wear tight-ass clothing, like waistbands that will press against your little stoma, okay?

 My bag didn't fill up with air--first of all. Too many people don't understand that ordering soda on a plane will--duh--give you gas. Get the juice. Get water. Don't compromise your health or comfort, man.
But eventually, anyway, the bag does fill up. Now I'm used to larger planes, but even the larger ones have tiny water-closets/bathrooms, much like this miny nightmare we flew on.
While I was feverishly battling an on-going urinary-tract infection, (my 6th or 7nth of the year, as my bladder and kidney's are basically shot through with some kind of germ that no amount of antibiotics or urinary specialist can kill) I made my way to the toilets to try out how emptying my bag would work. And I took pictures of course, because I love you guys that much.

This is the tiny-ass toilet I wedged into. Not pleasant.



To actually empty my bag was a Cirque-de-Soleil twisting crouching affair. I rolled up my skirt and crouched before the shit-basin and angled my pelvis as far in toward the poop-suction tub as I could physically go. I haven't practiced my yoga since I got really ill, so it's been a year or so and I'm not as limber anymore. 
 I squeezed out the contents like it was a pastry bag (hadn't had enough fluids, so it gets like that) and with a lot of tissue paper, swabbed-out the spout and cleaned everything that I could.
It's not really that big of a deal, trying to do your business and clean it up on a plane, just requires a few more minutes and some finesse.

Now onto our first days in Vancouver.


More buildings!

My pwetty husband and buildings!

Me before the entrance to China Town where I bought most of our groceries

Waiting for subway, looking out at lit buildings...

Ahh! Subway's here! (Actually they call it the Skytrain)

 Vancouver is really expensive compared to MN. But this subway here? Skytrain...whatever. it totally reminded me of Tokyo~! The platforms and the signs... I think that's why I kinda love this place so much. So so many Chinese and Korean and Vietnamese and Japanese (and Indian too) are all over the place. I can buy the foods I want, and go to stores we like and hear the languages I love.
Instead of snow, it rains, but it's so crazy that in the dead of winter back in MN, here there is no snow, but green (albeit wet) grass and leaves on the bushes. So strange and wonderful. I'm not star-struck though, our place where we're living is waaay too expensive and it's falling apart (feels like a bad hotel); and we have to walk many km's to get anywhere, take buses, then walk some more; no jobs, yet hemorrhaging money on this rent and life expenses; and of course I have a raging infection and terrible crippling pain to deal with.

So yeah. This wasn't really a funny post, but it's an update, and maybe if someone sees they can pour their crap out into a plane toilet with no trouble, they'll have a bit more confidence taking a flight.
Going through customs with my ostomy supplies was no trouble at all. One lady questioned my ostomy powder as a liquid, but I opened it and poured some powder into my hand to demonstrate. I even got through with a doctors order to carry Ensure with me!! Just remember to be patient and kind with these people, they are doing a stupid job where they're on their feet all day, and they're just people too. Be nice and kindly explain things to them, and they'll get kind of embarrassed for being gruff. But you shouldn't have any problem, just leave the ostomy scissors in your checked luggage :)

Saturday, December 17, 2011

Not really a Rant, but hey. An Ileostomy ain't the worst.

I try to keep this a purely ostomy-related blog--you know, not updating you on my breakfast or minute-by-minute thoughts or whatever inane shit pops into my shattered skull--but I thought I should be honest about my other medical problems so you know where I proverbially "sit" on the scale of normalcy.

I can't remember how much I've talked about having a past UTI and as I'm packing to move my entire life to Canada in three days, don't have the time to look it up, but a year an a half ago, I acquired my first UTi that due to our shittastic health care in the USA, wasn't treated correctly for a long enough period of time with antibiotics. Because of this, it cropped up again a few days after the last measly dose of meds, and I was treated again, in the same paltry unforgivably near-sighted way.

Since then, I have had persistent urethra pain that is akin to have a hot meat-knife stabbed UP into your urethra... that little button you don't even usually notice on top of your Vag.
Out of all my surgeries, out of my accidents and jaw-breaking and even the funny stupid post on ripping our your vag hair... out of every recovery and every pain in my life, out of being crushed by a couple-ton horse even... genitalia pain like this... this kind of pain i live with every day is the absolute worst pain in my life. Nothing has driven me so close to the edge of suicide, has lead me to forget my dreams and consider there was no happiness left for me in my life than this kind of pain. Every waking moment. Even while I try to sleep... there is no medications that can quell this persistent pain. Not gabbapentin/neurontin, not detrol la, not even Tylenol 2/codeine or Oxycontin. Not even alcohol, although out of everything, at least alcohol sort of works better. No... i have left behind my dreams of having children or a job or even having a partially normal life. Every single day for most hours of the day, I am in a "sitz" bath, trying to soothe the damaged section of my body. This makes sex super painful, obviously, and I've never had a sex-related orgasm (I don't fake it with him, but I still don't ever want my husband to necessarily know that. I just don't talk about it) and I've been to every specialist out there. Everyone in the United States. Every Dr who knows about pelvic floor disorder, everyone who has worked with gynecology, every urologist, everyone.. .at the end of my long sessions of testing has shrugged at me.
"Don't know. Could be this or this but doesn't look like it."
Likely not IC.
Likely not paraurethral gland infection.
Likely not anything.
And NOT spasms from your pelvic floor.
Persistant acute chronic pain from damaged nerves maybe?
great. fuck you all .
I had my first Cudal-nerve injection at the clinic for pain management last fall. They put you tummy down on a narrow bed in a surgical suite, and using an x-ray live-time guided imagery above the base of your spine, jam a foot long needle into your Coccyx. I had that done many times over the course of months, but it never worked. I also went into physical therapist after another telling me there was nothing they could do for me.
Then I began having surgeries for my ileostomy.
Yesterday, i had my first pudental injection.
And now Imma tell you all about it.
After a wait of 4 hours for a 2 pm appointment, they finally took me back into the surgical suite at nearly 6 pm, when all the nurses kept bantering to me about was how "overworked" and "tired" they were, and how they wanted to go home for the weekend. The doctor came in, surprised that my hair was red despite it being so since about my fourth year of life when it changed from baby-blond, and snapped at one of his nurses to "get out of (his) damn way."
Oh, did I mention I lay face-down on the table for 45 minutes before he finally entered the room? yeah. fuck you doctor.
Here are your ass cheeks.

With that same foot-long needle, he went in on "exploratory" injection sites, jamming that needle in through my ass-cheeks into this place here:

And he proceeded to jam it in through my ass cheek to inject my nerve! But oops--wrong nerve. So he did it five more times! FUN!
Then they proceed onto the other ass cheek and repeat... as in above photo.

It's better than in the past were they went through the perineum or through the rectum, but it still hurts like those without spinal nerve pain can imagine.
It didn't work. The moment we rolled off the lot, after all that time waiting, after all that pain of injections, after all the hopes, I was in excruciating pain... urethrally.
Today I am back to my sitz bath, because I don't know what else to do. This has crippled my life like nothing else, and i still consider my self lucky as I don't have a giant facial tumor ripping apart my skull, and I don't have necrotising fasciitis, or a whole bunch of other horrible tragic and WHY GOD WHY things of that nature...

Trying to keep life in perspective, but if having an ileostomy was my only problem, even with not being able to truely "eat"....  I would still count myself the luckiest...

Tuesday, December 13, 2011

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
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.
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.
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:
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.

Monday, December 12, 2011

Getting Pubes in your Wafer

To de-Pube, or Not to de-Pube

When I first began dating Mr B, it was summertime. I hadn't been swimming in years, but I thought with Mr B's backyard pool, maybe he would invite me in for a dip, yes?
Shaving the naughty bits usually results in pimple-bumps, so I took my elder sister's sage advice to wax. I bought some little strips at the store, soaked in a warm tub for a while, then tried it out. I would be sexy as hell, seductively slinking around in my bikini... yeah. I'd drop my towel and bend over to get it, showing him that shaved pussy encased in a filmy little thong.
My plan= the most awesomest ever.
I smoothed the strip down over my bikini lines--just to try it out before I went any further. Then, steeling myself for a moment of hurt, I yanked them off.

If I had multiplied that moment by a thousand and thought of "hurt" as "ovary-shattering-pain" I would have had a more accurate idea of just what I was getting myself into. And it's not that I have a low tollerance to pain. I have been through 13 surgeries and had my jaw broken on my birthday when I was a young lass of 20. But ripping out the hair near/around/on my genetalia tops the list of unpleasent experiences I'd rather not twice encounter.

Blood immidiately rushed to the surface of my skin-- I was delighted to see as I stood crouched there with the hairy strips still grasped in my trembling hands. I tossed the strips aside, and, reaching for a handful of toilet paper to quell the blood, slipped in the tub and banged my side, back and left boob into the shower door.
I made a quick assesment of my injuries--none fatal, but AGGHHHHH! My crotch was still bleeding!!!!
The pain! It just went on and on! I pushed around through my medicine cabinet until I found the tea-tree oil and splattered that on, spilling a generous amount on the counter in my haste. But it still fucking HURT. DEAR CHRIST IN HEAVEN, WHY DO WE DO THIS TO OURSELVES!? I made a frantic dash for the freezer and held ice cubes to my burning loins.
But... it was still okay. I was salvageable. I could still be sexy, right?
Of course I had to do this last minute, and the doorbell rang.
It was Mr B.
I could see his shadow through the glass.
For fuck's sake. Why.

 I think I shouted some garbled mess as him, and he took that to mean "Hey, come on it! Open the door and just hang around!"
So the door began to open. I shit you not, I watched that handle wiggle and the door creek open like it was a horror movie. I felt like I was going to puke.
Naked, dripped a mixture of water and blood, I limped/hopped back to the bathroom still clutching ice cubes to my crotch.

He said something that I couldn't really hear through the door, but it was to the effect that he was excited to see me in my new bathing suit.

When I came back out, my smile was really more of a grimace. I gingerly walked around and he admired me. And my new bikini.
      Mr B: "What's that on the floor?"
You like my Micro paint drawing? Done on a track pad. So awesome.
Fuck. The drops of bloody water. Leading to the bathroom like a betraying trail of misery.
      Me: "Oh that's just a thing. Hey, it's not going to rain today, is it?"
I attempted the sexy, posing with my leg stiffly crooked on the couch, every movement one of wooden-doll-like stiffness. I snapped the back of my thong and winked at him. "I'm ready for you baby. It's alllll smoooth."
       Mr B: "What's that sticking out of your thong?"
Fuck. Toilet paper.

I am actually getting somewhere with this. I only recalled the above incident after I had yet another waxing-like experience with the sticky wafer on my ileostomy bag. The wafer is circular, and is generally placed on your lower right side around/over the stoma.
My bags have the wafer attatched, and with the attached wafer, I've never had leakage like I've had with two-piece bags. One-piece bags FTW.
Anyway, I've found what works for me, for not giving yourself that nasty hair-pulling expereince, is that I gently shave over that area. There are little hairs on our abdomens that also get pulled when you change your bag/wafer. If you lightly shave the area where the wafer goes (and trim the top of your pudenal bush, if you have one) you will find yourself in much less misery.

I have the rare good fortune that Mr B--finally told me after the fact--likes and nay, prefers pubic hair on women. We're not talknig about umbleweeds, but definately not full Brazillion anyway. I don't want ot get into pulling apart the idea of Brazilion waxes as tryign ot encourage men toward pedophilia or anything like that, because some really do swear that the smoother it is, the more sensations you have with sexual encounters. others like to run their fingers through hair, or feel it tickling their balls. Whatever floats your boat--or in this case, juices your pickle.
Just remember to trim those loose little guys up at the top and shave a bit around the wafer and you should be good.

Monday, December 5, 2011

More Ileostomy Fashion

I thought I would start this out with a disclaimer. Those who looooove wearing pants or are not willing to change their fashion after an ileostomy will not find this page helpful at all. This will work for those who veer toward rockabilly, like the 1950's fashion, follow Japanese fashion lolita (which in this case just means young girl), or who just like frilly skirts.

((I don't intend to be superficial, I just hope that posting pictures of clothing options can give young girls or women encountering an ileostomy surgery--and worried about how their bodies will be afterward--can gather some hope and even maybe... be a little reasurred.
I was worried. Damn straight I was. I did all the reasearch you could ever find, and some Med-scape things most people even can't! I looked at personal stories, and scoured blogs, but I could never find specific information about the actual changes that happen to your body, or what you might feel like, or your emotions regarding it, or the struggles, or, lastly, clothing. You can't always just wear big baggy sweatshirts or a muu-muu.
Fuck that. We are fabulous women. and nowhere in dating essentials do men list "girl must shit from her anus". Where we eliminate our waste has NOTHING  to do with our fabulosity.
It's just a bag, and this is one way to deal with it.

Clothing options, yo:
Professional-ish shit (ignore gross splattered mirror):

The white shirts I got at Target, same with the two skirts, and the white and black shirt I hand-made. Professional and everyday really do blend together in most work places, so on I go.

Every Day


These all right here, the really professional pics with the accessories? They all come from a great store I found on ebay called bombshellvintage. But really, if you look up skirts and 1950's dresses or vintage or rockabilly or lolita dresses on ebay, you are bound to find a trillion awesome clothes.

Here's some vintage.
   Like that little caption says in the white dress with the pink ribbon here, Posh Girl Vintage  is a really great place for beautiful overpriced vintage dresses that get snapped up really quick by wealthy women who sit at home on the Internet all day. But looking at them give me great sewing ideas...

Here are some examples of classic lolita dresses:

I think those girls are wearing shit from Jesus Diamante    
And here's one more pic of awesome:

Bein Sexay
I've had a few examples of this, but here's another one.

(Holding out my bag within its bag-holder)

I always hate that top part of the bag that sunrises over the actual stoma itself. I find it mostly useless and it irritates my skin, so I fold it down and tape it down, and thusly stuff it into the bag holder. Weeeeeeeee!

Now before I got my ileo,  I rarely wore skirts. I always wore those jeggings things, those leggings that are kinda jeans... you know? Whatever. So anyway, I wore them and tight pants and things, but after my ileo, I was like, Ok I can't wear the same clothes again, so what looks good on my body? I took assessment of myself, and tried to find another avenue for my fashion tastes that I could wear with my ostomy bag. Don't sit and fret about what you can't change. The ileostomy is there. You are lucky to have it, as it likely saved your life. So get up and move on. Looks are important, no doubt, hey. It's just how the world works. But lucky for us girls, we can wear skirts as it's sadly still more socially acceptable for us to than guys. And fuck that! we can look DAMN sexy doing it too.

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.

Saturday, December 3, 2011

Just another Rant

I'm having problems with this blog stuff lately. When I view it in e explorer, my cherry-blossoms background is gone! Grrrr... I put so much work into changing the html so the layout too.

Then trying to make the "girly-girls" non-blog redirect into "girl-girls" failed, so I just had to make another blog with the same name posting the link to this blog. My god, it should not be this stupid. Moreover, maybe I'M just this stupid.

I've been going to a lot of appointments this week for shit, and I've noticed that most of my medical appointments always turn into some kind of explanation for like half an hour about my ileostomy. So many are like "omg tell me about this weird space-age creation". I shouldn't have to educate them, they are supposed to pretend it's something they see all the time and not bat an eye at it. Don't make me explain about it, asshole, it has nothing to do with other medical problems. Like if I broke my foot, don't ask me about a mole on my back. I'm not embarrassed either, just annoyed.

Very stressed out... packing my life up to live in another country, balling all my clothes into tiny bundles, cradling my HDs in packing material in my bags... what about my instruments? What will happen to my piano?! And my guitar! And my recording equipment! Noooo! And my kittehs!!!! I must leave them behind until okasa-mom comes driving out in the late spring. I worry about their safety during the drive, and I worry too about my ileostmy supplies and bags moving to Canada, and how I will get my things (as I said earlier) and my health in general.
I have to take a lot of meds each day, at the moment, unfortunately, and I don't know how I'm going to get what I need to keep me alive. At least we have located Ensure there, because I drink a few of those a day. That's the only thing keeping me from being 70 lbs, like I was earlier in the year.

((Does stress affect an ileostomy? I suppose so. Stress affects most things in our health, doesn't it? I think I get less output when I'm stressed.))

I'm about to go out on an impromptu dance date with two other girls and my husband tonight. I don't exactly think it will help to dance the stress away, but I need to get out for a reason other than Doctor's appointments.

I'm sorry everything has been so hap-hazard and disorganized lately, I'm just being a silly human and my body is still trying to heal after this hellish year. You know, if I get enough balls, I will post the pics of me when I was at my worst. It's like fucking disgusting. I look like a walking skeleton. Actually, in some of the pictures, I look like I'm already dead. It's weird to think about how much I've gone through this year, and how much my life and body has changed... not totally for the best, but certainly, you know, better than being DEAD.