IT'S ALIVVVVVE!!!

You are not getting a stoma prolapse. Neither are you experiencing some kind of malfunction of your stoma, or your small intestine trying to escape your body through the hole in your abdominal muscular wall. No-- the stoma you have sometimes bops around like a robin listening to a fat dubstep beat (I have never experienced this much action from my own, but I've heard stories...) or elongates and contracts at its own will.

The peristalsis you are used to never fucking ever seeing inside your body is now (at least a little bit) on the outside. The cute little red button is going to grow and move and morph around like a fucking anime demon trying to find its true form.

Yeah. Kinda like that.
In other words, it's alright, yo. Chillax.  :) 

Skin Erosion & Rashes

Jesus Christ. They just don't prepare you for this shit. One of the probs with having a loop ileo instead of an end is that the loop is a fat stupid motherfucker that creates a figure 8 that you can't cut wafers and such to fit exactly, so guess what? Your skin around it gets burned by the acids from your output. And my fucking surgeon had the gall to say "Meh--we'll just keep it a loop. Looks fine to me. Dar Dar Dar." Stupid son of a bitch.

I've had problems with stitches. Those supposedly dissolveable stitches never ever dissolve with me. I've always had to yank them out with a tweezers. Weeeeeee! When I had my large intestine resection (the big scar going down from my umbilicus) the stitches for that were crazy infected. I had to yank them shits out and it was like someone was disemboweling me---No, I REALLY felt that when the nurse was pulling out the drains. THAT was disembowelment. So my stitches around the stoma are red and puffy and the skin around that is rashy from the stupid adhesive.

Sorry for the gross largeness, but I thought it might help some hos out there who wonder wtf I'm talking about, or want to compare their infections with me. The white around the stoma, that shiny shit?--that's Desitin, a diaper rash cream that's actually hella useful for this type of thing, but also why you can't really see how bad the infection is, as the cream is covering it :/

My suggestion for helping skin erosion and aiding in healing rashes is this. On the weekend, stay the fuck inside. Take your bag the fuck off. Walk around with toilet paper around your stoma, secured with tape if need be, but I'm not a high out-putter and my output isn't liquidy, so I don't have too much probs with this. My reasoning for this is the rash and the infection needs to breaaaathe. The skin is sick of being imprisoned under strips of wax and adhesives and it yearns for the cool kiss of a summer brease upon its malformed infected face. Also, I wipe Destin on my eroding skin and use Aloe vera gelly on the rashy part, but Bacitracin Zinc Ointment USP is always a good choice. this isn't just me advising this. I've dug around through ostomy forums for this info, and this works.

As I still don't have too many bags to be using recklessly, I've only gone de-bagged twice, but I think I'm starting to see the difference in the overall healing and happiness levels of my epidermis.

Clothing & your Ostomy

For wearing clothes, I know it will get easier as swelling goes down, but already nobody can tell I have my bag on and I'm little more than a week out.

So I've been sewing both my wedding dresses, one a 1950s-style dress of antique lace, and a court-house dress of white lace and cotton, for when we hop on down and have it officiated. As I'm Buddhist (yeah I know, a good Buddhist shouldn't be swearing and crass and be all punching-with-fists but it's my nature) and Mr B is Agnostic, we aren't having the traditional wedding experience. We're getting it made official with paperwork at the courthouse, then later in the month, in the early fall, we'll be having a little back-yard ceremony for our like, two friends or something. All our pals are in different countries, and so the few peeps there will be family mostly. Bleh.

Anyway, so I tried on my courthouse dress that I've been pinning and sewing yesterday, and snapped a few photos.

BAM. Look at that sexy Ostomate girl! Ileostomies ain't no thang. This is an awkward position because I'm uber fairy-short and wanted to show in das foto the bottom edging of the dress to Mr B.

I'm still not sure if I'm going to use the blue ribbon or not.

But anyway, that's just an example that you can still look like yourself after an ostomy. I wear skirts anyway, my style is mostly Onee-Gyaru with a touch of Victorian Lolita, but I've found wearing even my yoga pants or leggings have worked fine with this too. Either you tuck the end of the bag down one leg, or you flip the waistband of the leggings down under your ostomies and wafer, let the bag hang over the waistband, and wear the skirt-holder pocket-thing in the previous post to hold it up.

Panties

There are websites like Ostomysecrets.com that tout you need this and this and this to get by otherwise OMG YOUR LIFE IS FAIL. Fuck that shit. It's expensive, it's dumb, and most of all, you can make that crap on your own with very little hassle.

They have a thing called a "wrap", which is like a chunk of spandex you just kind of smash down your ostomy with, I guess. I don't know about everyone else, but smashing down my stoma doesn't feel good. The little fucker wants to breathe and definitely NOT be smashed down. But as I don't exactly like walking around with a dangling bag--remember, these ones are still the huge bags I was sent home with and not the smaller one's I've ordered-- I made myself a soft little thing that passes as a short skirt. Observe and cry:



Shirt goes over the top part, and the bottom was cut off an old T-shirt, the bottom border flipped under and literally safety-pinned down to create a pocket or a sling for my bag. I can walk around and move without the gross constriction of that spandex shit, and my little buddies can peek over the top and watch the action.

This is a pair of the underwear they show on the site.





Uhm.... HAHAHAHAHHAHAHA. *Wipes away tear* No. If you didn't wear granny panties before, you certainly don't need them now. And if you're wearing them now, dear christ in heaven, for the love of everything that is sacred, please stop. Nothing says "I no longer care about my life" like the despondent apathy of granny-panties. Good lord.


Here's the panties I wear:

Niiiiiiiceeeee, huh? Of course. I cannot for the life of me understand why some peeps insist you need nasty-ass panties after an Ileo. I meet that with a hearty resounding WTF. I don't stuff my ostomy bag under the panty-strap anyway, because that makes the bag buckle and can cause leakage and shit. I hold up the bag to slip them on, then I leave it hanging over the side, then I slip on my little short-skirty pocket thing to hold it up.

Now this is an actual practical thing and really kawaii super-cute bag holder/cover for when you are wearing a stoma cap--something I have yet to purchase. A cap is basically a really small bag for when you're getting your sexy on. Awww yeaaaahhh.

Here's the website:

http://www.myheartties.com/product_info.php?products_id=39

And for a while, maybe a handful of weeks while your stoma(s) is/are still healing, you really shouldn't be having sex. If your dude has a dick worth working, it's going to be knocking around a whole buncha shit inside. Just take it easy and let your pussy rest. I know it's hard (heh heh) when you look at him walking around in them jeans, with that ass, and he's got those arms and those eyes and his voice makes you wet... but seriously hold off. Use your hands and mouth and all that and I don't know, get oral from him or something. I enjoy giving it but not receiving, but if it works for you...

And what's all this talk I hear of ostomy belts? That's bullshit. You don't need a fucking belt or anything to hold it up, if you've worked with your ostomy nurse to properly pick out bags that fit you. Look back at that first picture in the post. See that top flap thing where the filter is? The area nearest my belly-button? Well because I'm stuck with these huge-ass bags for a while, so that filter part doesn't go flapping all over the damn place, I take a tiny strip of duct-tape and tape that down against my skin. Easy. No prob.

My 'le Loop' Stoma, Changing the Bag & Other Practicalities

This is le loop or Lil SquiRter-- as he's known in the gang circles. Mr double-trouble is still super swollen considering it's the 18th and I just had the surgery on the 8th, and though I look pretty skinny still, I'm still swollen abdominally considering where I was before I entered surgery. (So don't expect yourself to be back to normal by this time. I was seriously emaciated going in, so slightly puffy I just look more normal.)

So here's one of the big-ass Coloplast bags they sent home with me.  I'm ordering ones that actually fit me soon, so I'll update as soon as I get those. Oh yeah, this is a one-piece bag, meaning that it has the wafer thing built on, which I ADORE compared to the two-piece, which leaked like crazy and never stayed on right.

In the hospital with my stoma nurse, we determined a good size for cutting the opening, since mine is irregular. I trace that onto the back and cut around it.

The wax

Once you've cut the bag to fit and squished the wax around the opening

place bag over those little fuckers as closely to the bottom as you can (but not too tight, the wax is there to fill in gaps) then gently wiggle stomas into the fashioned hole and press down on the sticky wafer thing to create a kick-ass seal. Make sure it is flat and smooth on your skin. If it's buckled even a little bit, even with the gummy wax, shit is going to seep out. Not cool.

Yup. It's on.

Yes, sometimes your little squirter is going to begin to operate while you're changing bags. I change mine in front of the sink just in case this happens, which it doesn't too frequently. I keep Clorox Wipes under the sink for this reason. Seriously people, don't let your family members/ housemates suffer with feces germs and shit. Hmm... well, maybe if they're horrible. Then it serves them right.
Also, a tip here, change your bag at least an hour before you eat anything, and seriously don't eat right before you change your bag. Some peeps do it first thing in the morning, but I do it whenever during the day.

If you're changing the bag for your child, wait until they are kinda sleepy or at least chilled out. like, they aren't really excitable or angry that you pulled them away from watching cartoons. Before you even bring them into the water closet to change their bag, cut that pouch, have all your supplies out and ready--this will make the process go much faster. Trust. Just like giving a squirmy cat medicine, you might want to have another person there to assist. Unless your kid is naturally obediant and quiet. (Yeah right.) HERE is a great site with links for children and ileostomies. Or ostomies in general.

For changing the bag, depending on how fucking nasty it is, I'd say every 2 days. If it's loose or leaking, change that shit, cuz man, the acids in your feces are gonna fuck up your skin. If it's your kid with an ileostomy, or just an ostomy in general, they might start to get fussy or uncomfortable, or if they're older, they might complain that it's itchy or it burns. That's when THIS occurs. So change that bag, okay?

For emptying, wich you do a handful of times a day, also depending, I keep a pair of plastic gloves in the Water Closet that I slip on for these special occasions. I'm such a fancy lady, emptying my shit-bags with gloves on.
 With the Coloplast ones I have here, I unroll it from its delightful velcro wings (seriously, velcro wings on the flange are the greatest. So much fucking better than the clips) and squeeze it open at both ends so the hard plastic remains open while I drain it.

(In this pic I'm not wearing gloves as this is a new bag but whatev)

So, to best drain, some sit on the toilet and drain the bag from between their legs, but I've had trouble with UTI's and I'm not exactly keen about liquid feces going past my vag and urethra so I get on one knee, to romance the toilet, and drain that shit like so---->

And yes, as you can see a bit of watery blood drop in my bag, your stoma's gonna bleed a bit. It's the inside of your intestines folded back and sewn to your abdomen, for gods's sake. Of COURSE it's going to bleed. Expect it. Sometimes I bleed like, a 1/4 cup a day, sometimes nothing. Depends on if the little tomato's been rubbed or is upset or not. Whatever. It's not worrisome unless its' a shit-ton of bleeding, and trust me, seeing blood may be scary, but you will know when it's seriously time to call the emergency room. I'm talking about a FUCK TON on blood. Tablespoons of blood even if not anything to be stressed over. Chillax.

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

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

                                                 WHAT YOU CANNOT EAT:

     *Oatmeal/porridge

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

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

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

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

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

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

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

  3. Try a hot bath, I haven't 

  4. Use a heating pad over your abdomen.

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

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

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

Ileostomy--What to Eat After Surgery

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

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

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

8 Days Post-Op

Right away after surgery I woke and within the hour, was roaming the halls sans IV unassisted. That evening, I changed into my own clothing, because hospital robes suck le balls. My surprise on waking was that it was a LOOP ileo, not an END like I had been lead to believe, that the surgeon insists was just miscommunication, even though my mother had been in the room while he was talking to us and took specific notes about what he said. She had been a surgeon's dictator at one point in her career, and she's pretty quick with her pen. Anyway, after that upset had cleared, I was none too happy to be told I'd need two additional operations. One to make the Loop and End Ileo, and another for total colectomy.
Fucking yay.
I had no pain at all, until I started eating mashed potatoes. then as the Ileo was churning away, very very slowly I might add, the pain began. But it really isn't more pain than gas pains, honestly. they gave me Vicodin to take home, but that doesn't help considering the pain goes away once the stoma churns out the crap.
They let me out on the third day, and everyone who has an Ileo, even my ostomy nurse, has told me it would be super fast high volume. Nope. Not for me. 8 days post-op, the swelling is going away, stoma's still bleeding occasionally, but my small intestine is not bringing this crap through in the allotted amount of time. I fear I now have slow transit with this ileo, not good news since I had transit for small intestine tested and they said it was fast-to-normal.

Prep for Surgery

Last time I had a colonoscopy, the two Bisacodyl and two jars of fizzy crap mag citrate didn't work for me. and I mean, I am far below my normal 90 lb weight and this one-size-fits all 'scopy meds didn't hardly make a gurgle in my intestines. Well, I guess that's why I'm having an Ileostomy.

So before surgery, I'm supposed to drink FOUR bottles and take FOUR pills, starting 2 days ahead of time. So I started at 4 pm, and shock and surprise--but this thing ain't going like it's supposed to. To pardon the stupid pun, heh heh. But no laughter! I am in a very unpleasant state right now. Fuck fucking bisacockl and fag citrate.

While I visit the toilet, I'm reminded of Rejected Cartoons by: Don Hertzfeldt--specifically the one with "My anus is bleeding!!" "For the love of god and all that is holey...!" or something like that. yes indeed little ass-bleeding cloud, yes indeed. Not that I'm bleeding or anything, but holey christ it feels like that sometiems.

So while I'm waiting, I'm catching up on watching movies--movies I'd never really thought I wanted to watch. Like the first Transformers. Eh, it's fairly decent--for being a seriously retarded piece of shit.  63 minutes in when the robot cars start talking, I kind of mentally checked-out.

The bag they gave me to practice with is seriously huge. Especially since I'm 4'10 and stopped growing when I was 12. 12 years old. I'm the size of a 12-year old, just to reiterate. So no I don't need a damn 50 gallon bag trailing down between my legs and dragging on the floor by my feet like a giant deflated testicle. Maybe I could just have a wheelbarrow and wheel around my bag. Oh don't mind me... just wheeling around 50 gallons of feces.
Still worried about placement--Dr dude is seriously a gangrene-crusted peener, so instead of sleeping I'm here watching this shit movie on my laptop before the government shuts down streaming, listening to giant june-bugs hitting the windows like rain, and worrying that the bag is going to be higher than the delicious little marking.

Surgery's Coming.....

At my last appointment, I met with the Dr and he preferred to do a Loop Ileo for his own b-tard reasons. Now I'll have to have another surgery in the near future to do total collectomy, and he gave me the lovely statistics that 80% of Ileostomates need revision surgery for herniations, infections etc. Oh GOOD. After the hour long spiel and schematics explanation, I asked him where he'd place it and he pointed to BESIDE MY BELLY BUTTON. Um, fuck no.

The same appointment the ostomy nurse marked me, and she marked it really low beside my right hip. Well, like an inch horizontally from my hip bone. I LOVE where she marked it. If he ostomizes (yeah, it's a made-up word, shut it) me there, then I can still actually you know, wear clothes like a respectable human being. This is what I've been worrying over, as I have surgery in Seven daaayyyyysssss...... (said in creepy voice).

I mean, I'm hard-core worrying. I worry about recovery, yeah, because everyone says you're fucking fucked-up as shit afterward (I understand that, I had an 5 or 6-hour long colonic resection when I was 17, after all); fucked up like, your intestines are so swollen shut that you can't pass anything from your stupid ostomy for days. Sometimes even weeks. Oh joy. What young woman doesn't want to look as swollen as a basketball.
But mostly, I'm worried about placement. That can really make or break the rest of my "enjoyable" life for me. If this arrogant Dr doesn't place it where the ostomy nurse did, I'm fucked. Royally.

(Pic's where nurse marked it, clear tape peeling---->
Big scar from resection, little scars from 2nd endometriosis and lysis of adhestions Lap surgery in Feb)

The other scary thing about this is that every time I've gone to an appointment with him, I had a strong intuition about what was going to happen next. When I first met with him in December, we (my old mom and I) brought my old records and tests with. She being an RN along with other creds too many to list was convinced that this would be enough for him to scedual a surgery. I KNEW he was going to re-order all the tests again. And guess what? Bam. He did, that motherfucker. For the next 5 months I was put through hell as I did test after test for this sceptical asshole, as I lost more and more weight and became more and more dysfunctional until I'm at the point I am now, barely able to drink Ensure every damn day.
On our next visit, my mom was convinced again this would be enoguh for him. Nope. One more test, just as I predicted. Small bowel follow-through, with Gastrograffin instead of barium. (Ask your Dr about it, waaay better than Barium <3) That went fine, then two weeks later we were FINALLY able to secure a surgery date with him. But as I've predicted correctly everything that happened so far, I'm afraid that he is going to place it high. I have this terrible sinking feeling that he's going to place it where HE wants, not where the nurse marked it.  

:(