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.

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!

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! :)

Video

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?

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.

 Hmm.

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'.

Update

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.

MOUNTAINs in MONTANA

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.

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.
Constantly.
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.