Halloween Costume with an Ileostomy

FUCK YEAH

This is the very hot and marginally talented Nicki Minaj. When her songs come on, my husband cannot stand the her rapping and flies across the room to slap at the radio controls until the "atrocious sound" is silenced. But her hair is always awesome and her clothes are THE CRAZY and her body is hella bangin. Therefore--it's costume time.

My wig is from:
http://www.wigs.com/product_info.php?products_id=4341
And it's fucking awesome.

I double bra-ed, a leopard print and that weird pink print one, a fishnet shirt with a studded black elastic belt over it, a tiny child's sized swimming skirt (initially bought so I could bag-hide if ever I went swimming) over black "booty" shorts, over blue tights, with rainbow socks pulled up mid-thigh over that.

I'm usually pale as a fresh-found river corpse, so I've been applying self-tanner and bronzer like I lived in Orange Country, California. Or anywhere in Minnesota, basically. I don't normally mind being pale as death. It's just how I'm made, so fuck it. Who cares. Yup. You can see the blue veins through my glass-like skin. Whatever. At least I don't have Multiple Sclerosis, you know? More important things in the world, and if people wanna mock me for being corpse-skinned, cool for them. Personally, I could give less a shit. (Funny enough, but Mr B--my husband--well, his mother kept asking him why I was so pale when we first started hanging out together. Her daughter tans, and her own skin is much darker, so I suppose I was a real jolt to the system.)

Me and my Mr B--he's in his foam-latex mask. Took four hours to apply on him--ugh. No shit. He's seriously into Halloween though. The only sad thing about those masks is that they decompose after a couple of uses (and cost a hundred bucks or more a pop so no small deal) and also he had to SHAVE HIS BEARD to put it on. Very sad. I feel like I'm cheating on my husband when I kiss this clean-shaven stranger. Feels OOooooooogley. :(

OK. So here's my bag hidden underneath the tiny skirt thing. I have it cradled in my bag-holder thingy I made--it's never just hanging without support. It just feels too flapping in the wind--like boobs without a bra.

With one finger, I'm holding out my bag inside it's bag holder------->

 I topped it off with my goofy tennis-shoes and Whatev. Went out Saturday night with this ensemble, will also go on Monday with it, as it's actually, for 2011, Halloween on Monday night. Gross night for Halloween, and all we have around here is bars to club at, but whatever. I got molested by ten or twelve guys last night when we went out like this, but it was all good fun. They were just drunk. You just kind of laugh and remove their hand from your pussy and keep walking. No big deal. of course it incensed my husband, but he's a gentle bear, and easy to tame even when he gets angry about me being hassled.

But I know it sucks trying to hide that bag. But with a little trickery of mini-skirts or clothing folds, you really don't remember it's there unless it fills up. Then---then you empty it. And continue on :)

Worse Than Skin Erosion (part 2)

After a lot of hassle, I finally got to see a wound/Ostomy nurse in a nearby town. She took a look at the disgustingness, but just kind of shrugged and said she wouldn't be too worried about it.

After I cleaned my ostomy and the area around it, I put on my ostomy powder------>

Then I ripped open a package of Cavilon No-Sting barrier film and padded that on, as the little sponge within has liquid on it that turns into a film after 30 seconds------------>

The nurse gave me a small square package that had what looked to be a rectangle of wispy cloth within.

 She proceeded to cut a corner from it, laying this "cloth" over my wound. This cloth-thing is Clacium alginate, which Wikipedia defines as "a water-insoluble, gelatinous, cream coloured substance that can be created through the addition of aqueous calcium chloride to aqueous sodium alginate"

I warmed up and stretched out a piece of wax/ strip paste ( I don't know why they call it paste--it's like soft wax) and placed it around the base of my stoma, covering the stitches still bristling out from my skin. The powder helps keep the area dry, then I brush away the extra that fell on my skin, and the barrier film helps keep the area protected and covered.  The tiny pad of Calcium cloth thing help to protect the open area further, and the wax strip stretched down and molded over it helps really protect it all. Then After I've cut my wafer to size, I fit it on over my stoma and press the sticky-ness down so the bag stays secure.
SET TO GO.

    I have to call her at the end of the week to let her know if it's healing, and next Tuesday I see my surgeon again for a checkup. I hope he actually TAKES A LOOK at the ostomy he made. Ugh. I am always very nice and respectful and listening when at a Doctors appointment, but I'm firm about insisting medical help if I think I need it, and I don't give a shit about acting shy describing something. I speak bluntly, I don't beat around the bush, because hey. These people are here to provide a service, for you, one that you and your insurance are paying for. They aren't Gods, even if some act like it. They aren't better than you. You aren't supposed to feel stupid in an office with them.

    You don't have to be a bitch about it, but you must clearly educate yourself about your condition and ask questions. Who cares if they are put-off that you're asking them things? I've had many Urologists irked at me because I was more up to date on state of the art treatments then they were, but this is a very small stupid town I'm currently in. But anyway, if they are tiffed, so what? Oh no, you might step on their toes suggesting a medication or insisting on receiving a mammogram? Fuck it. This is your life. What if you didn't mention something and that turned out to be the thing that could have saved you? That could have eased your condition? Maybe you could have caught the cancer sooner, or been able to get off steroids or whatever. You get what I'm saying. Only you can take charge of your health. You need assistancee, and you must demand it from doctors that otherwise may not go that extra mile for you.

Oh look, another rant. Sowwy. This has nothing to do with skin erosion, but too many times I've experienced personally and seen people demeaned by surgeons and shamed by doctors into thinking their condition was "all in their head" or sped along in the office and hushed up with "Here, just take these pills--I don't have time to get to the bottom of your pain." If half of these doctors had the same conditions and/or chronic pain their patients did, NONE of them would act like this. Unempathetic assholes. Please be strong when speaking to the medical community. Be educated, be firm, and stand your ground. You deserve it.

<3 Tinylittlelifeform

Worse than Skin Erosion

I was in the hospital for five days after the surgery to make my loop ileostomy a permanent ileo and with total colectomy, two of which I spent vomiting my head off at the slightest movement of my eyes with the wonderful drugs I was on.  More than a week later, and I still have yet to be able to eat more than a spoonful of mashed potatoes and actually be able to digest it... My slow transit just became that much slower :(

The worst, besides the immediate pain I had, which by now has mostly gone away, is the weird skin problems I was left with afterwards. I have had skin erosion before, but this....?

I don't even know what this is. I can't even.

Fills you with sunshine, doesn't it? While I was under in surgery, some dim-bulb cunt nurse put my bag on sideways, resulting in leakage of bile fluids into my new stitches, resulting in this monstrosity you see before you.  I need to get to an ostomy nurse or back to my surgeon, but he's Swedish, and he's gone to some foreign Dr's conference for a while, and anyway, according to his offices, he's booked out for months. So great. How do I make this crazy shit heal now? Ugh. Fuck my life.

I'm trying to get into a local ostomy nurse to see what her recommendations are, but I need my primary to give the order for me even to see her, so I have to call his offices tomorrow, and hopefully get him to do it without make an appointment to see me as well, thus drawing all this shit out mooooaaarrrr. GRRRRR.

One kinda good thing is that he cut along my old huge scar, but I'm pissed he needed to open me up that far and wide anyway, as he anticipated it would just be laprascopic. Now the area around my old scar is entirely numb, except for a shooting pain across my belt line. Sometimes I get stabbing pains throughout my pelvic region that cripple me, but I'm still glad the colon is out, although he left a bit (how much has yet to be determined) to support my vagina and other organs so they don't all collapse into a pelvic prolapse and shit. 

UHG. Not feeln' this shit right now. Really not feeln it. :(

Surgery Tomorrow--goodbye large intestine!!!!!!

Tomorrow afternoon my large intestine will be cut from my body using laprascope and, at the end to remove it from my body, a small incision along my larger abdominal scar resulting from previous resection many years ago. It will take 5-7 hours (WHAT. THE. FUUUUCK??!!) And at the end of it all, the surgeon will not let me keep my useless removed organ like they used to let patients keep their appendix. :( It's a gross thought, but I  want to see it, I want to see this demon that has ruined my life until this point, I want to come face-to-face with this thing and see it for what it really is. then I will bury it. I wanted to have a little plot somewhere and actually conduct a small service for it, because as much as it tortured my existence, i know it was trying the best it could, and it struggled through pain.

Like I've stated previously, I'm pretty scared about the recovery, and the catheter in my urethritis urethra. The urethral pain has sent me to the emergency room a few times this year, ever since that UTI that never really went away. After all my surgeries, the urethral pain is still the worst. Although, my hope is that they'll have me doped up after surgery, laying in a hospital bed somewhere with a big smile on my face from the heavenly morphine.
For the urethral pain , I've been on Nuerontin/Gabbapentin--and the only thing it really does is make me sleepy or kind of slow, and it's been like this for the entire year I've been taking it. Oh well. After physical therapy, spinal caudal injections (many many times--super ouch, cry) medicines and warmth, I fear for my future, every day of pain filled frustration.

Anyway, so we are spending the evening packing dry Ramen noodles (for Mr B) and individual packages of oatmeal (for him again) tiny cans of V8--for both of us. I know it will be a few days (at least) in the hospital.
so I've packed what I hope is appropiate for the night.
Mr B is worried about what if they dont leave enough rectal stump and the missing large intestine makes my vagina srop and our sex life severy complicated. I am also worried with my urethra in the state its been.

Ugh. Well, I drank too much gin and I'm feeling mighty sleepy.  My time here it's only 8:30 pm. I'm getting to be old people.
Please, if you pray to anyone or anything, please pray for me tomorrow. Pray for my pain to be non-existant, pray that the surgery goes swiftly and without complications, pray that I heal fast. Oh please send me good vibes. I just need to survive, and knowing that there's soemone out there rooting for me gives me a little more courage.

<3 Tinylittlelifeform

Total colectomy--totally rad?

Next Monday is my total coloectomy, where my loop ileo is going to be made permanent. So much of my time for months has been literally filled with doctors appointments, even for diff stuff than the ileo) that this just seems like another thing, but it's not. I am finally going to be rid of my stupid hateful piece of shit large intestine. I'm glad to be rid of it, but I'm concerned, naturally, about how I'm going to heal.

Bromaline helps with healing, but it only does so much. My Swedish surgeon told me is takes 5-7 hours to perform this operation. (Forgive me for not being as eloquent this time around, but Blogger erased my post without so much as a tiny trace and I'm having to re-do everything right now off what I can barely remember.)

So anyway, any loop ileo will get "Spillover", the redundant stoma sucking up liquid waste into the large intestine just as its been used to doing it's whole existence. It will continue to do this after loop surgery, sucking up waste from the bag even if you are very careful. My surgeon from Sweden was very blase about this as it WILL HAPPEN  to everyone that has a loop, he so said, but my initial Asshole surgeon went so far as to scorn even the idea that it could possibly ever happen. Stupid stupid asshole.

anyway, so that's my problem, and with the total coletomy, this will be less of a problem, but still something to watch for, trying to "express" the contents of my large intestine, as they will leave a rectal stump to hold up my lil vag so sex doesn't hurt.

I am worried about healing and about my husband being able to remain in the room with me, and about swelling and about surgical complications and about getting out of the hospital quickly. Since going to the emergency room for 16 blood sugar, (WTF that ever means, who knows), my heart hasn't been working quite right, so yeah I'm worried.

The picture above is how my large intestine looks now. When i was 17 I had a large intestinal resection, where they chopped it apart and fit it together like so, so I'm hoping that in light of this, the surgery will not take as long as "normals" who don't already have partial intestine missing and an already-in-place ileostomy.

I'm incoherent with worry, I acknowledge this, and also exhausted with having to rewrite this post and not having having any down time since this whole excursion of pain and suffering really began to sink it's claws into me. All I can ask is for prayers and well-wishes, I'm just too scared sometimes to know how to proceed, and knowing, or thinking, that someone else out there is wishing me well gives me the strength to face another minute of this insanity.

How to make a Sexy Ostomy-Bag holder--TUTORIAL

I don't like my bag dangling around and flopping free-balling. It's like not wearing a bra, or not having a jock-strap on. Moreover, as the wafer stuck to my skin can only take so much yanking, even with added adhesives, I always have on an ileostomy bag holder thing that I first made by cutting a t-shirt in half to kind of make a rudimentary sling.

I made 3 shitty bag holders before I perfected my technique, and here today, instead of showing you the normal bag-holders (which I promise to do a tutorial of that in the future) I will demonstrate how to make a fabulous sexy bag holder out of an old pair of underwear.

I do not like this stupid ill-fitting panties, and therefore, I decided to change it into a bag-holder. This has little strappy things on the side, but this will work with just about any kind of underwear, although boy-shorts might be rather difficult.

OK. So you got your panties--now hold up the larger butt-side to your ostomy bag to see how big/ how long it should be.  

Now start cutting off the front part of the panties from the top elastic band. (See below)

Now that you are at this stage....------->

...  cut off the crotch lining.

Slip the elastic waist-band around your hips like you normally would putting on panties, with the butt-side over your ostomy bag and tuck the crotch part under the bottom of your bag.

See where my finger is right there? That's where I'm cutting.

Now still wearing the elastic-banded piece covering your bag, flip your cutt-off piece around with the biggest side facing you.

Now snug that biggest-side right under your ostomy bag.

 I snugged it up to a little ways lower than my wafer is... you know how the edges of the wafer stuck to your skin don't have the bag attached to it all the way to the edge? I usually have a little wafer room. But anyway, so now I have the other piece of cloth right under my bag, I'm going to pin the edges together. (I normally don't recommend getting pins or anything poke-y near your bag--it's just a bad fucking idea--so be uber careful.) I also pinned underneath, the area where my bag ends.

So this is what it should look like now, front and back.

I'm sewing the edges first..

See? The pouch is starting to take form.

Now you have a lovely and sexy little bag holder... don't mind the dirty mirror or the bit of yellowish part of my bag. I fold it over at the top to fit into the holder., and the bit of tan you might see peeking out the top is from the top part of the sticky wafer. ANYWAY---it is awesome and holds your junk in place, makes you feel more supported, and doesn't cost a million trillion dollars.

Can I Get Married/ Have a Wedding with an Ileostomy?

Yes.
The thing that most women seem concerned about is what kind of dress they will be able to wear. For myself personally, what I wore pretty much fits in with what I wear normally every day. I wear skirts with elastic bands, and I have that elastic band snugged right above my Ileo stoma.
For my wedding reception/party day, I wore a more 1950's style poofy ballerina-like skirt.

See where the end of the bodice meets the skirt? That's resting just barely above my stoma. Those sheath dresses and slip-like wedding dresses really look good on no one but supermodels, and even they can't always carry it off. So this was more of a natural choice for me anyway, since it fits with my natural style and felt comfortable to wear with my ileo. It was short enough--mid-calf--so I could grab up the end and roll it under to check my bag and do all the nice little toiletries that come along with keeping it clean. You really forget you have a bag at all when you have clothes that mask it/fit well with it.

These are mah nails... and my ring and bangles (none of which got in the way of bag-changing or cleanliness) and rose petals my sister scattered across my skirt for the photo.

My mother in law speaking to me after my "vows/ love-letter to Mr B"

Whilst the vows were read...

Anyway, to re-iterate the answer to the title question: Hell yes you can both court and get married and have the sexual relations with an ileostomy. It's like having a birthmark. Some people are mightily ashamed of it, and refuse to take off their long sleeved shirts or whatever and wherever it might be, ashamed of the birthmark's presence. If you can learn to be like "yeah--I have an ileostomy--so the fuck what?" it ceases to matter. It's also like many heavier girls I've seen at clubs. They are extremely attractive, but many are much too self-conscious about themselves to have fun. Then there are ones that get out on the dance floor and love the fuck out of themselves, because they are fabulous. And if you don't feel fabulous at first, fake that confidence until you have it.

Women have enough trouble with confidence anyway without adding a body-altering complications such as a bag that holds our liquidish waste, but I say why the fuck don't you deserve to go out there and have the time of your lives just because of a medical condition that you have no control over? It is what it is--and who the fuck cares if someone wins your confidence, finds out and then gets weirded out? Fuck em. They aren't worth your salt anyway. Our lives and too fragile and too short to waste time with negative people. Your ileo is there for a reason, likely a life-saving one, and you can be fabulous with it. You probably aren't going to be playing tackle rugby with the boys any time soon, but otherwise, as far as ileostomies go, there is nothing stopping you at all whatsoever from leading a life full of a fuck-more potential and opportunities than you could have without your ileostomy, or, you know, dead.

Anyway, as eating is difficult for me with the strange confusion of my digestion, I didn't eat much my wedding-party night and with how ragged I'd worn myself this entire month getting ready for it (we made all our own food, I sewed my dress, we dj-ed the party, we wrote filmed starred-in edited and created music for a video we made of how we met plus setting up all the things and decorations and blah blah etc) I ended up having a blood-sugar of 16 that night and uhm, narrowly missed slipping into a coma.

So things didn't exactly turn out how we planned, but there's worse. There's always worse.

(And I do recognise this is a really shitty way to end a post regarding weddings.)