Thursday, December 29, 2011

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

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

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

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


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

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

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

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

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


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