Tuesday, September 4, 2012

Nutrition & Healing

As I've been struggling to remain alive, every day it becomes more apparent how important nutrition is to our health. Fucking shut up, right? Duh. But I mean, REALLY think about it. Really be mindful about what you are putting into your body.
My life has progressed from bad to worse, with neuropathic icicle-stabbing pain into the giant spreading numbness on my left thigh, the constant tremors in my hands and body, constant vomiting and muscle wasting of delightful Gastro Parisis. The actual things I can "eat" as in chew are only a few cherries, a couple of frozen blueberries, maybe a cracker or two and a bite of soft cheese. Everything else is vitamins, supplements, pills and Ensure.
Needless to say, I could be doing better. Sorry to get all earthy on you like this, but I've found Chakra meditations really assist. THIS is a kick-ass website that has nothing to do with religion whatsoever, just offering guided meditation as a way for us to harness what's already there inside. I've been practicing meditation for a while now, and on days when I've really focused quite well and been able to calmly meditate, I can harness my body's energy enough to not vomit! Sounds disgusting and like "oh wow, good job, loser" but for someone that's been barfing a few times a day for the past 7 or whatever months, this is a huge accomplishment. I was so excited I had to burst out and tell my husband and he was like "YEAH--YOU ROCK!"
Now, meditation has been known for thousands of years to promote healing. But there is numerous research now to justify making it a part of your daily life, as important as feeding yourself nutritious and delicious foods. As important as taking Bromelain to help reduce swelling after surgery, so is it important to assist your body to heal through meditation. Meditation is not unique to only one culture or religion. You don't have to renounce your deities to meditate. Meditation has been around in both Christian and Jewish practices for a very long time, but had trickled out of popularity during the 1500s.

So that's my bit on healing, and because i have such shit nutrition but don't want ot die, here's what I most sincerely recommend to anyone of any health stage:

This shit may look like nasty green powder, but I get the Acai & Mango-flavoured shit, mix with with a bit of oj and it's fucking delicious and super damn good for you. Okay--so I just spilt it all over my bed--green sweet powder everywhere. Ugh.

I wish I had this in capsules, because swallowing it is nearly impossible like gagging down whole fish--but of course unrefined omega fatty acids are beyond awesome for your body. From the website "for people who want one product that gives them all of the good fats they need, without any of the bad fats they should avoid. Every cell, tissue, gland and organ is dependent upon the presence of essential fatty acids. They are the main structural component of cell membranes and are necessary for cell growth and division."
(Wouldn't that be mitosis, then? I remember learning that in 4th grade, mitotis is the process of cell division, although the definition is swaying and changing throughout the years.) 
This lastly is some seriously delicious shit. It actually DOES taste like lemon meringue, and all you need is a swallow every day to get your Omega 3s. Damn good stuff.

Much more, but I have some research to do <3

Monday, August 20, 2012

Tips and something else about bladder/urethral infections

Tip numero uno: pee before you empty your bag, alright? Seriously, dudes. Don't touch anywhere around your urethra--guys and gals both--if you just emptied and swabbed out the spout of your bag.
Feces residue--even if you can't see it--of ANY kind on your fingers when you touch your pee-place=BAD, INFECTION, UTI.

This can happen during sexual intercourse, if an object (penis probably) falls out of vag and crams back into anus or perineum briefly, or from nylon underpants, or something that slides back and forth on your perineum from anus to Venus--uhm, vagina. For girls especially, this can happen super easily, unforch. Trust.

And all that ranting I've done about injections to my spine and trying to find meds for my hurting urethra? Well I hate to be a proprietor of antibiotics, but macrobid, taken infrequently, but when I'm beginning to have pain there, has actually been the only thing to save me. The recurrent infections have ONLY been killed by this antibiotic, I hate to say. I really really hate to say. I have tried D-mannose

(a really helpful thing everyone should probably take in their water or juice every day), and I have tried Peridium, and Detrol LA, neurontin/gabbapentin, and all those spinal injections, and where has that gotten me? Shit nowhere. But painful sex, pain after urination, all that crap is nearly (knock on wooden head) gone because of the rare times I just pop a Macrobid. I guess many women have to take an antibiotic before or after sex in order to prevent having a urethral infection, if they have gotten UTI's in the past. This has literally been a lifesaver for me. I was always soaking in a sitz bath, crying from the pain until late at night, like 5 am, when I finally just fell asleep there. This was unbearable. Sometimes, this is still my reality. But it is SO MUCH LESS with an easy little prescription.

I'm having health probs in other regards, but seriously yo, heed this advice.  I hope those women suffering pain in their urethra, constant, for years, will be able to find this.

I am by no means pushing antibiotics on anyone. It breaks down your own immune-system's ability to handle stuff. But for urethral pain--don't FUCK AROUND.

Saturday, July 21, 2012

Is that an inflated ileostomy bag, or are you just happy to see me?

BOTH actually!!

Early morning inflated bag, don't you just love it? I have been stupidly sneaking small sips of delicious Cherry Dr Pepper--I forgot how much I loved that shit--so of course, as any carbonated drink will produce intestinal air, I end up with a puffy little bag.

(POV angle, me in my sleepy-time clothing, with my furry cat friend to the right :P)
Some times, I wake in the middle of the night to find it is like a balloon, so damn stretched out that it appears it could burst with the slightest poke.
(Black bag-holder barely containing my gross-ass shit-spattered bag. Furry friend still to the right, roaming about.)

Look at this. Shit, but I have no shame. Ratty sleepy-time clothing pictures with my damn shorts around my ankles. And I do this for you, Ostomy Curiosity People. All for you. So anyway, this inflation seems to happen more while I'm sleeping, and really inflates whenever I sleep on my back. Why is this?

(I really am disgusting, aren't I?)

We all know that there are certain foods to avoid that create gas. Asparagus, broccoli, cabbage, eggs, fish, little-balls-of-death-Brussels sprouts, cauliflour, onions and garlic. You should really avoid roughage anyway, unless you want a gorram blockage. (Gorram you say? Yes, I've watched Firefly.) Now, funny thing is, I have been purchasing fresh broccoli and chopping it up, then I fill a huge pot 1/4 of the way with water and I place a colander over it, dump the broccoli pieces in the colander, and boil the water with the lid on over all that shit.

(Closest pic I could find, courtesy of Akidscookingchallenge.blogspot.ca)
This is called steaming, and I steam the shit outta that broccoli so it keeps the nutrients in, but is soft enough for me to eat. I have been eating that with cream cheese and a sprinkle of garlic--omg, yum. But I have noticed it really doesn't give me increased intestinal air at all--but maybe I don't eat a ton of it, so it's not a problem.
Now some people have a filter on their bag. This lets the air escape, and also drives away your closest friends and then you're alienated and alone and depressed and contemplating ending it all. Kinda. I tried out the filter bags, and it mimics the glorious experience of having uncontrollable diarrhea farts. Just shoots out everywhere and stinks up everything and you're constantly turning red in the face and apologizing vehemently.
Uhm, no fucking thanks. I'd rather watch my bag for air and just dump it and air it out in the water closet when needed.

Ahhhh. All emptied and the bag lays flat. Like it should. (Narrows eyes threateningly at bag.)
How do you prevent the dreaded shit explosion from an inflated bag? I usually dump my bag before driving, naps, and certainly before sleepy-time at night. And before sex... heh heh (uncomfortable chuckles). How many times you will dump your bag/pouch during the day really varies for how much you eat and what, but is typically like, maybe four or five. Bag size also matters. Larger bags can hold more feces, smaller bags will have you running to the toilet with every little squirt.

So when should you empty a bag? Dude, seriously, empty that shit when it's like a third full. You see that nasty picture of me with my bare legs and underwear showing? Yeah. It wasn't full of feces, but the air puffed it up. When air isn't in the bag, I ALWAYS empty it when it's a third to half-way full. The bag gets heavy, and my bag-holder really helps hold it up so it isn't dragging down on the sticky wafer and you know, ripping it off or something.

But don't sweat it. You can handle a little stinky air.

And check out my FABULOUS nails, OMG.

The pinkie has a little slice of watermelon glued on it, ring finer has an apple slice, middle finger has kiwi and orange slice, first finger has a strawberry. And then, the thumb has a lime slice. FABULOUS! FASHION! GORGEOUS!

Tuesday, July 10, 2012

Finished Corset

Y'all, this shit is SERIOUS! LOOK at this finished beauty! It has special flap designed in the front so I can have access to my ostomy whenever i want. (I will take better pictures of the flap).

Short post here--but it's encouraging to know that you can wear corsets or any kind of fashion really, though you have to be a bit creative to cover the bag! :)


So I am planning on doing a video, directed by my husband, showing the entire process of changing a bag--from cutting around the edges to size it right, and cutting the wafer to fit my ostomy bud, and all the powders and wax shit that goes along.

It will be gross. You will see liquid feces. You will see exactly how this whole ileostomy life works. And it will be the only REAL video showing this crap to those who are desperately trying to find answers to those questions that swim through their scared and panicked mind when the doctor says to some youth they need to have an ileostomy. Oh My God! Will my life end? How will this work? Everyone will know I have a bag! Everyone will smell it! I wont be able to wear anything pretty anymore! I will be an outcast! Everyone will think I'm gross! FUUUUUUUUU------

So that's why. I might be ashamed. Maybe I should be. But this will be for all those people who feel so horrible and just want answers. Maybe... maybe I can supply them.

What do you think? Bad idea? Good idea?

Sunday, May 27, 2012

Swimming with an Ileostomy? & Canadian Insurence

Our "new" home is quite a tight squeeze with one tiny bedroom and a mini kitchen all attached in a weird snaking rectangle. It's mostly a storage-space now after we drove cross-country and over the border with all our things (well, most but not all) from our previous lives. 
I'm always trying to think of ways to talk about ostomies and ileostomies, but it's really just something that you live with everyday. I walked on the rotting-kelp scented beach recently, and that reminded me that I still have yet to swim, because the adhesive on my COLOPLAST Assura 12630 One-piece Midi/Drainable/Transparent   3/8''-2 1/8''  10-55mm is SHIT.

This is really similar to mine, but without the stupid filter
The wafer that's supposed to be sticky is not, of course and even though when I change my bag, I press down REALLY fucking hard to make it stick, it buckles and occasionally leaks. (Although I've never had a horrible leak, like in the middle of the night. Just bits of discolouration on the underside of my bag and the waistline of my panties with uhm... the liquid contents :P).
Please people, if you need a transparent bag, this is NOT the way to go. The adhesive is so bad, I have used an add-on liquid adhesive.

This is the liquid adhesive that I've used to try and help with this problem----> Skin Tac.
You're supposed to dab it on clean dry skin (check) and wait for it to turn tacky (check), except it never turned THAT tacky, then lay your wafer down over it in the futile hope that it will stick. Well, ma--guess what? It don't work.

Ahoy--waste of money!! This shit won't stick to fucking anything!
Abandon ship! Save your bags! Save yourselves!

I know I'd have to use a one-piece bag for swimming,  but I'm unsure how to really proceed. Not that I want to go out in a bathing suit any time soon. My body is a wispy assembly of bones and my stomach is sore and rather grossly distorted from all the GastroParisis-induced vomiting.

Sooooo..... perhaps this is all just a rather hopeful dream of mine to swim. It would be nice, though, wouldn't it? On a sultry hot day, muggy air wavering the heat in a mirage over the road, sweat trickling down your forehead and down your sides and down your spine... your body is heavy and sluggish with the heat, and you just want to slip into the cool calm waters of some lake, just relax, floating in there... letting your troubles slowly seep out of your body as you soak in the coolness of the lake...  

So from my research, this is what I've found. From this PDF, "An ostomy belt or waterproof tape around the edge of the skin barrier can assist security." But you're supposed to remove the tape as soon as you're done swimming, because it can irritate the skin.

Oh yeah. Another fun thing about Canada (or maybe just BC in general)? I can't get any more ostomy bags. We waited 5 fucking months after we arrived here, and FINALLY our insurance papers went through (I was well-warned that Canada's process is slow--they aren't like the US where people take their jobs seriously and things go fast). 
I am trying to wear what bags and supplies I have left as long as I can and I'm getting skin erosion from it. You see, in order to have insurance cover bags, I need Farmacare. It's a Canadian insurance thing. *Shakes head*
  In order to have Farmacare, both spouces have to have a social insurance number, but as my husband is a grad student, they will NOT allow him a work visa until July (why? who knows), and a work visa=you are allowed a social insurance number. As I myself have a work visa, I am allowed a number. So I waited in line, got my number, but I still can't get Farmacare until maybe I try to set it up on an online form, maybe over the phone.

As me and Mr B have been paying for all my medication out of our pocket (Canada has free health care my ass) we are going broke. As he's not allowed to work until many months away, and I'm constantly ill, we are going downhill fast. We spend our nights traveling the alleyways collecting cans and alcohol bottles. The cans are a 5 cents deposit, so those aren't much, but the beer cans are 10 cents. The alcohol bottles are pretty nice, they are 20 cents if they are over a litre, but 10 cents or 15 if they are small.
I'm usually down for anything and just roll with the flow, so out of nescessity I've been going out, I've been scouring trash cans for bottles, and it really struck me how pitiful I am.This is what my life has come to. I narrow my eyes with suscpicion at all the homeless people trying to steal my cans. We wear gloves and old clothing and are incredably careful about antiseptics and germs, but still....
Hey, in THIS economy, don't be judgin'.

Wednesday, May 9, 2012


I am currently in the middle of a writing contest after months of doing my husbands extensive homework with him (he's such a perfectionist that it cripples his ability to accomplish things:/) and FINALLY  the corset people had me in again for another fitting. (this is also after traveling cross-country and over into another country with our belongings in a trailor with my father-in-law ohgodIalmost died blagghrhrsjvjnnbm ....

Anyway. Here is a picture of a buffalo-bison statue somewhere in south or north dakota i took from the car window during our travels.

What the fuck are you doing, bison? Just hanging out there all giant and shit on top of that hill. Scaring little children and old ladies. What the hell? Who do you think you are?

Why is there a giant cow here? Just because.


What the hell is this landscape, I don't even...

Compared to the flat icy landscape of MN, this is alien land. Whhhhaaaaaaat the fuck.

And on to the corset pics!

You see, for my ileo, as I intend to be a constant wearer, my peeps there are putting in a "panel" a little hook-clasp area over my ileostomy so I can have easy access to the bag whenever need be, which, lets be honest, in pretty constant. I'm always checking it and fiddling with it, especially as my wafer just isn't sticking right--totally need new type of bags... hm...

In these pics I am looking at lace trim, and the area down to the right side of my hip, where my ileo is, is actually cut up a lot higher than normal for my ileostomy. That's where the panel-thing will go. Also, it's not really pressing down on my rosebud ileostomy either.
I have a lot more to say about Gastro Parisis and ligaments holding up the organs dropping, but that's not ileo-related, and I try to keep this blog pretty ileo-centred. But perhaps I shall tell you of my struggles with this parisis, and the ikelihood of getting such a disease after many abdominal surgeries, one day.
One day.

Tuesday, April 24, 2012

Honestly, this month, and going into this month, the only things I'd have to say are un-ileostomy related, although still health shit.

GP not only stands for your General Practitioner, but Gastro Parisis. It happens sometimes after your abdomen has been fucked enough by too many surgeries that your stomach says "Fuck it. Fuck you--I'm done" and it stops emptying or digesting like it should. I could "eat" nothing all day and never have the feeling of hunger. It means basically that you digest so slow from your stomach that you never feel any hunger at all, and that when you try to fill your stomach even with food, it makes you vomit.
All the time.
I didn't want to put off anyone from having an ileo, so I have not talked about this here, but recently, this is what I have been suffering. Not as bad as some, not as good as others.

You see, this is a very rare side effect of having an abdominal surgury, that because I have had so many many surgeries for my abdomen, whether it be for ovary, uterus, or intestinal complications--I have just had so may that my stomach has shut down. That and also who knows what is naturally set in course from when I was a young child.
Most people that go in for an ileostomy will NOT have GP as a complication. They wont. Fucking trust me or don't--they wont. I do NOT have the typical symptoms of anything (lucky me :/) and these things that I have been having now have little to do with an ileostomy--that's why I've been so wary to post. I dont ever want to give the wrong impression that having an ileostomy is ever a burden or a trial or anything--whatever that it takes adjustment to--BIG DEAL. Put on your big kid pants and get the fuck over it. You have a bag--
NO. ONE. CARES. Trust me-- you notice yourself more than anyone else does. That's not important. What I was giddly excited over with having an ileostomy is that I would actually be able to EAT again. But because of my stomache, I haven't been able to. I live off Ensure.
At this point now I am very ill, and no, the corset shop hasn't even gotten back to me because they are so busy, and I just feel like crap. We are going through a cross-country/over the boarder move with our earthly possessions and not sure how that will work, and other difficulties while trying to find me health care in Canada, which isn't all it's cracked up to be, as we're been here for five months and still have never gotten our "Care cards" (insurance cards) after we arrived for Mr B's grad schooling.

So, like I said, this is not much about ostomy care although I can REALLY say a lot of negative things about ileostomy options in Canada. And I probably will, when I have more energy.

Until now. Stay the FUCK out of Canada, and thank whatever god you have for your life.

Saturday, March 3, 2012

Can You Wear a Corset with an Ileostomy???

Birthdays are always hard for me. It's the time of year where everything I haven't accomplished career-wise really hits home. I try to go into the day with no expectations so I don't become disappointed, but a little part of you that expects just a tiny bit of specialness is always heartbroken when nothing good comes your way.

We just got done with our SECOND move, and Mr B is extremely busy with grad school, and we don't have any money to spend, (we barely have any at all) so I understood why I would be receiving no presents this year.
Since I can't eat cake, or hardly any food at all (not typical of ileostomates, just me as I have slow transit and possible borderline Gastro Parisis), there was no cake or candle blowing. Our tiny rented rooms are empty but for lawn-chairs we borrowed from the landlady and our big suitcases. No streamers or balloons--kid things, but they can brighten up a place.

After some really uncomfortable and unsuccessful sex, I spent the rest of the night crying in the rain, waiting for buses that showed up late, walking in the really fucking cold wind to get to an overcrowded bar that didn't have room to seat me. (And at that point, I wasn't going to spend an hour traveling to the heart of the city to nightclubs.) I think I'm also so sad because when we moved, we had to leave our cats behind, with the promise from my mother that she'd make sure we'd get them back. Well, she's grown attached to them, and only wants to relinquish one now, and hasn't spoken to me since. I kept checking me inbox every day, thinking she would at least write me for my birthday, but alas...
We just feel so lost and alone and without money and directionless in this country.

Earlier that day, I went in for my second appointment to get my corset fitted. Lace Embrace is a fabulous place here in Vancouver BC where they will fit you properly and make adjustments for your own body type and desires. Because I have scoliosis, I had to wear a TLSO back-brace for about 15 years or something, at least more than ten, and I became used to the feeling of having that nice rigidness around me. However, corsets are breathable, plastic braces are not!

Lace Embrace has shops now all over the country of USA, and is run by this surprisingly young-looking Melanie. (Seriously, she looks like she's 22, and not in a surgically enhanced way at all, but in an enviably good-genetics way.)
On my first visit, her assistant fitted me and began filling out the form for the kind of corset I wanted. On my second visit, Melanie fitted me herself with Dita Von Teese's prototype stage corset. (Yeah, did  I mention Dita flies to Vancouver JUST to see Melanie and get fitted for custom corsets by her??)

Amazing. Anyway, mine is I think called the femenette, and right here on me is Dita's prototype... an overbust--I'm getting an underbust, and it's too big for me, as she is bigger than me anyway. (My shoulders look all wonky because I have on this sweater-shrug thing that goes over my T-shirt... I don't know what it's called, but it always slips off my shoulders and makes them look like footballer shoulders.)
Yes, that's Mr B waiting patiently in the background.

With Melanie, I discussed how I have an ileostomy and how I'll need access to the bag. She took down my measurements and said no problem, she can make the corset shorter, or have a little flap that opens and buttons up again, just like the Victorian nursing-corsets, with flaps to open for boobage to come out.

I have this problem with ligaments in my body, and those holding up my organs are wear and so my liver etc has all fallen very low. With a corset, it lifts them back up where they should be. And no, it's not bad for your digestion, and no, I'm not a tight-lacer. I don't want to have to defend my reasons for liking corsets. Some feminists will say it's cages of men's tyranny or whatever bla bla. Others will say Why--you're skinny enough. It's not about being skinny, it's about being an hourglass, and I love old fashions anyway, so STFU.

I'm getting mine made in this pale pinkish sort of cotton twill--I think it's called??--that has this sort of jaquard-ish floral design. It's going to be edged in cream lace, and though we still have to knock out a few details about stitching, for the most part, I think that's it. In 4-6 weeks I return to Lace Embrace for a specific fitting of my actual corset--and I will keep you posted!!

Saturday, February 4, 2012

More Bag-Hiding Fashion for the Femininely Inclined

So maybe my skirts aren't really your style. They weren't mine before, but I've come to really like them. But there are times when I'm pretty fucking sick of them, so here's another option. I used to dress more like, let's see, this:  
This is some sushi and fried cream-cheese wontons I made for my boyfriend/now-husband Mr B back when I could actually eat the things I made. I favoured sleeker clothing because I'm young and people have a limited amount of years they can wear crap like this before their body decides it's going to take a nap. 

I don't always wanna wear a cupcake skirt. I don't really appreciate giving across the impression that I think I'm just such a cute little girl ooo look at me. I guess with my surly attitude, nobody really gets that impression from me, but I'm afraid sometimes that they might, or maybe I'm just paranoid about it. 
So are you sick of not being able to wear your old clothing? Me too. Fuck everything--I'm wearing what I want and I'm modifying it to suit my baggery needs.

The spatters on the mirror are, per usual, entirely my fault. I lean really close to the mirror to do my flossing and this is the result. I should have cleaned it before I took photos, but I'm running out of battery and had to snap them really fast.
I took a stretchy-silky material T-shirt and cut it under the bust to use as my "skirt". Of course that was too large around my hips and bum, so I gathered all the excess material to one side and pinned it down. It creates gathers which are a great illusion to hide your bag. (Since this is pictured in the mirror, my bag is on the opposite side of the pin.)

Here I didn't want to be all gross, but I wanted to show you that you still look normal sitting down, too. That it's not all hugely bumpy and obvious, thanks to the clever little gathers.

Saturday, January 28, 2012

Pregnancy and your Ileostomy

I've been wondering about that for a while, since even before I got my first loop Ileo.

I'm what many would quantify as underweight, but for me, this has always been where I'm at, give or take 10 lbs. With my mixed Chinese ancestry, my body is unfortunately small. I'm not a stack of ribs like before my surgery, but I'm smaller than I'd want to be. Still, for all that, I've always had a terribly regular menstrual cycle. YOU WANTED TO KNOW, DIDN'T YOU?
Although 10% of ileostomates have fertility troubles (mostly due to blocked fallopian tubes via adhesions) I don't think that will ever be my main concern. My family... we are fertile people. We don't have five-thousand children, we have about 2 or 3 per household, but generally, first try always resulted in what my husband annoying refers to as "crotch fruit". (For the uninitiated, "crotch fruit"= children. I don't know from where he got that phrase, and frankly, I don't want to know.) And some women end up having fertility problems because of gynecological issues after surgery.

A very small percentage of men have sexual dysfunction problems after ileostomy, j-pouch or colostomy surgery.  Sometimes they can get it up but can't get it off, and sometimes they just remain flaccid. This isn't trouble from the "Ileostomy", but from is they are removing the colon as well and do some hasty slices to those innocent little nerve endings around the rectum. Obviously, if your surgeon has done your type surgery over 100 times successfully, with very little to no complications, your chances of recovering without any trouble are a lot greater.  

So here are my general worries/ apprehensions regarding pregnancy for us female Ileostomates:
*Sometimes, with the enlarging utererus, intestinal obstructions are unavoidable, and sometimes even last for months long at a time and women are put on TPN to just to let them live.
*With the internal pressure of the growing human parasite, the stoma enlarges and sometimes prolapses. Although, "Women who have had an ileostomy also can have a prolapse or obstruction of the ileostomy during pregnancy. Waiting a year after the (initial) surgery before becoming pregnant reduces that likelihood." ( Source)
*peristomal hernia!
*need for second surgery to relocate ostomy!
*All these and more listed here!!!

& here are:
*Some facts from Inside Out On-line May/June 2000
*Someone who's had a pretty good result
*Some mixed results
*More brief mixed
*Some don't seem to have much trouble at all, either conceiving or carrying
*Blockages, being on liquid diets
*Here's a terrifying page (the whole 3-page reading is worth it though) of women dying from obstructions that doctors don't understand or dismiss due to them being pregnant, and other delightful complications that mostly seem obstructionary related.

Although  Google searches will show you a great deal more, I have yet to come across personal stories, as in day by day descriptions of life with an ileostomy and pregnancy as in Blog form. On my blog roll, I have someone who was just starting a pregnancy with an ileo, but sadly she lost her baby and doesn't know when/if she'll conceive again.

And yet, at the end of the gestation period, how the hell is this creature going to be expelled??

 Caesarean-sections are generally discouraged as a form of birthing for Ileostomates, what with scar tissue and the actual ileostomy itself, many doctors are wary of creating ever more the complications and ever more scar tissue.
Shitty news for me.
Because of my internal scars and due to my body size, I WILL need caesarean. My mother, who is a significant amount larger than me (not in fat quantity, just larger bones) needed C-sections as well. We tend to have non-widening hips in our family, even with the rush of pregnancy hormones. Natural selection is trying to kill us out. Fuck you Darwin.

I also am really interested to see in what ways a woman's body returns to normal after pregnancy with an ileostomy. What happens with the stoma? And what happens with your stomach? Do the loose folds and shit make it hard to get an external appliance that fits properly?

Of course, according to logic, this isn't something I should be considering even THINKING about right now. We have no money, my career hasn't shot off anywhere, Mr B still needs to finish Grad School, my health sucks, and it's not that I have a hungry uterus that squees in joy each time I see someone elses baby, either. This is just an honest wondering of mine, a daydream if you will, that might or might not ever come to (crotch-fruit) fruition.
And then I have to ask myself all the questions women ask themselves anyway, outside of being an ileostomate:
Am I too selfish to have children?
 I value my alone time. Whereas my heart used to ache with loneliness, I have grown accustomed to and now enjoy my solitude, as that is when I can work the best. These mornings before Mr B wakes up are my easiest time to work. As soon as he wakes, I am busy preparing food for him, and as we live in a one-room abode at the moment, I'm more inhibited and don't work as well. (It's most def not a misogynist relationship either. I honestly LIKE to get things ready for him, to cook for him and do little things like that, because I feel like I'm contributing and helping in the areas where I can help and he does the other things that I can't do. Like pieces of a puzzle that fit together, or steps of a stairway.)

My husband is a very gentle patient man. He is soft-spoken and kind. I get frustrated, I'm impatient, I'm flustered under stress. Babies are stress. Make no mistake, they look cute (occasionally, after the vernix caseosa is wiped off and they're not crying) but I already have trouble sleeping, so I'm not really gonna dig being woken up to feed. (Although I guess I was a silent baby, according to my mom, and never woke her during the night. I don't believe that is the norm, however.)
Even under ideal circumstances, with perfect health, babies will stress you the fuck out. Even more so when you are dealing with a fucked-up stoma that may or may not be bulging with hernias in need of surgical repair and possible relocation after expulsion of the miniature human.

So I have to honestly ask myself, what are my reasons for wanting a child? Because I think I will be a good parent? Who honestly can say that? Every mother I know wishes they had done things differently, as is the human condition of someone with a conscience, I suppose.
A child isn't an extension of myself. It's this small being with its own ideas and comments and likes and needs and wants, and I wont understand them. And they wont understand me. And to them, I will just be a provider and someone that loves and wants to protect them. But they will become a mouthy teen, they will want to drink and smoke and do things of this nature, and they will becomes confused young adults on their own time.
Do I think that I have enough wisdom to pass on to another human being? Do I want a child just because of biological urges, because I think of it as an expression of our love?
I don't really have genes I'd want to propagate. I'm not the best looking, not the smartest. My husband is damn sexy, but the rest of his family is questionable, at best.
We could always adopt, I think about that also quite a bit as our best friend was adopted from Korea and we love him like crazy.
These questions still hold true for adoption though, maybe more so as more thought and money is put into this, and then there's the possibility that the birth-mother of the adopted child consumed drugs or alcohol during her pregnancy, or has a family lineage of mentally or physically disfiguring diseases. Sigh.

At least if it was my own pregnancy, I'd know no chemicals entered into the gestation equation. Nutrition is a concern for me, however. Most of my nutrients come from Ensure and vitamins and tons of supplements... and as there are plenty of stories of women with Ileos that are put on TPN for their last months of pregnancy for whatever reason.

I always swore I'd be a better Buddhist by the time we were ready for children. I do not want them growing up without a temple nearby, and monks to help guide them through their development, so they do not become like everyone else, like myself as well, stuck with my mind in this plane of existence, always anxious and fraught with indecision. If they can grow with their minds at peace, none of the ordinary trip-ups of humanity will harm them. It would be... possibly the greatest achievement to raise children that were wise and unconcerned with the physical world. 

So for now, this is just a consideration in the back of my mind, because who knows? Things change. Life changes. This time three years ago, if you told me I would be married and move out of the country, I would have slapped you with rage-tears in my eyes for your filthy teasing lies. I would never have imagined that I could move out of the basement, much less leave the house. My body was a cage.

back then, literally all day and night was agony, torture-- there was no life for me to have. There was nothing to distract me from my body trying to kill itself, nor from me wanting to kill myself... because there was no way out. Every doctor told me either I was crazy, I was overreacting, I was the one creating the problems, that no one actual did a surgery for my problems, that such things didn't exist, ect. I was so hopeless and felt so helpless and lost and like there was no direction.
Shit, getting an ileostomy didn't give me the life of a god, I still have problems, of course I do--but who the fuck cares compared to that tiger pit of despair I was mired in for the majority of my life. Living the way I had  limited my choices for the future until there was nothing left but every day, every minute just trying to hold on for another hour because it would have crushed my mother's heart if I had let go.

And really, isn't that what you fear the most, if you choose to have a child, if you choose to be a parent? That your child will be in pain? That one day, you too will have to watch them suffer and hurt and cry in pain, and be helpless to stop the illness that terrorizes them?

Saturday, January 21, 2012

Black output from ileo bag

Red Wine.
I hate it, but my sister loves it. Now that I live near her, she insists I see her occasionally, and she also insists on giving me red wine for the occasion. Let me just preference this by saying red wine is disgusting as shit. I have drunken 151 and other shit that will set your hair on fire if you are near a microwave because it simply gets the job done. Red wine is just a waste of stomach space and doesn't do shit other than make your ileostomy output black.
I have discovered this after two closely monitored red-wine drinking attempts.
As bile is green, and red wine is, you guessed it, red, the combination colour is black.
Colour wheel as visual:
Red across from green. Black, motherfuckers.

Or, if that isn't gross enough for you, and of course it isn't, here's something you can relate to:

I pulled my bag-holder aside to show the blackness. Fucking gross, yeah, but this is what it looks like and don't be alarmed that you're dying.