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.

Anywaaaayyyyy.........

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?

QUELLING SOME CONERCERNS
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.

Here's WHEN YOU SHOULD CALL YO DOCTOR or OSTOMY NURSE:

• 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.

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.