Tuesday, September 27, 2016

Can you go in a hottub with an ileostomy?

Last May, me and my mother attended a Dual Diagnosis Peer Conference in Portland Oregon (Where my mom wants to live with me, but now that Dan is in my life, I want to remain in MN). We stayed in a hotel and they has a pool  and hot-tub there. None of the other guests wanted to splash around in that cold rainy weather, so we took advantage of that and went down there in our underwear and long T-shirts and swam.

Now, I was definitely afraid of my wafer leaking.
 I don't know if I posted this before and I'm too lazy to go back through my posts to see, but what really helped me was Skin Tac liquid adhesive.  

You open this little bottle and it has a fuzzy ball at the end soaked with the solution. When your bag is off, you lightly dab this stuff all around the stoma and you have to wait for like a minute for it to become tacky, so don't try to put your bag on before then. I have, and I had to throw away the new clean bag because it wouldn't stick on anything once I put it on too early.
This stuff works like magic, I swear to god.
So I put on a new bag after the skin tac dried, and I went in the hot tub expecting shitty (ha ha) results. And I was surprised! It stayed on, and I could soak in that heat as much as I wanted!
It stayed put in the pool too, of course.
Unforch, my insurance doesn't cover Skin Tac, so Im glad I have a few bottles left. That shit is hella expensive! Since my supplies are low, I only use it when I've been having leaky days where I have changed my bag three times and they all leak from the wafer.


Monday, September 26, 2016

I found Love!

For a long time, I've been deeply severely depressed.
 I have Major Depressive Disorder, but the meds I take only help me sleep--not help my mood.
Don't get me wrong, for years I slept only 15 minutes in a week, and I was going nearly psychotic, but sometimes my depression gets the best (or would it be worst?) of me, and I sink.

Some time ago, I sunk so hard I told my mom I was considering suicide. I didn't have a plan, but I knew I never wanted to wake up again.
Where I live in Minnesota, there is a hospital program called "partial Hospital". You are required to come in every day at 9 am and stay until about 4 pm. There is group therapy and an arts and crafts hour where you feel like a rest home patient making wicker baskets or painting wooden objects. It's supposed to help, but I just found it condescending.

But in this darkest time of my life, I met a man who had gone through very similar situations and feelings. When we got to talking, I realized we had music, passions, philosophy... every conversation reveals more and more that we have in common. Our conversations were easy, I felt comfortable and totally accepted.

Through our interactions, I found he was brilliantly intelligent, had a quick and smart witty humour, and we have the same values. He loves his children and respects his ex-wife, and even has friendly communications with her, and they are not acting selfishly out of hurt emotions, but rationally for their children.

Most of all, he made me feel wanted, like I mattered, like I could also borrow some of his strength and stand strong myself.
I've read that common interests have nothing to do with compatibility. It is about respect.
We know how to communicate, and most of all, I TRUST him, dude. I trust him with my very fucking life. When I am near him, I feel protected, I feel safe. Not just physically, but emotionally. He holds my heart as a precious fragile gift I have given him freely, just as I hold his in my own little hands.
Even through struggles, I know we can win victorious. I am on a waiting list for a DBT Dialectical Behaviour Therapy class (forced into it by my mom with many frightening threats of legal commitment if I didn't go), and in two months when I start it, it may last for 8 months. It really may, and I'm afraid of it, and I'm afraid of starting it. But Dan tells me I can do it, that he's here for me, that together we can conquer it.

We were two broken people with our own horrible shit we were trying to get over, and we came together as friends who had known each other since time before. Like in a past life. It was that rare moment when I gazed into his hazel eyes and realized, "Hey. I feel like I've known you my entire life."
As I say to him, cradling his bearded face in my hands, "You are perfectly imperfect."
I fit against him like we are two puzzle pieces. I love to lay my head on his chest and hear the reassuring thump of his heart beneath my ear. His hands are strong with long fingers, his body tight with muscles. He has an elegant face with good bone structure not quite hidden by the short beard, and almost shoulder length brown hair.
We mutually support each other.
I want him to have a good career and hobbies, I support what he does, and I'm proud of him. He has lived through some very horrible things and instead of being bitter, he has become gentle and compassionate.
I never thought I would find love again. I was resigned to being alone forever, and that my life would be lonely, but at least I would never fall into the trap of love where I projected "good things" onto a person and made them in my own mind on a pedestal. That's what I did with my marriage. I projected all the qualities I wanted in a man on my X, and no fucking shit, it didn't work out. Like, duh. I tried to make it work, I forced the puzzle piece into a spot where it didn't fit, and I was left with heartache and despair.

I guess I am writing this to say love can happen in places where you least expect it. Have an open heart. I am so glad I didn't go into my normal mode of isolation... it was difficult at first, awkward to talk to him over our first lunch together, but I realized that here was a gentle intelligent man that was also putting himself out there to interact with new people and get to know them. Really get to know them.

Depression.. it will pass. The difficult shit in your life... it will pass. Love isn't just a man-made construct, relationships are like a blossoming flower. Timid at first, then when more is revealed, the more you witness this transformation, you begin to understand your emotions and your human drive for contact can actually lead you into something wonderful.

I am so blessed! :)

Thursday, February 4, 2016

Hernias are super common

When an ileostomy is created, there essentially create a hernia for the bud of the small intestine. A hernia is a separation of the muscle tissue, where guts ooze out from and form a lump. I have said lump around my rosebud.

I went and drank the dye they gave me and had a CAT scan, bud I don't think the dye had digested far enoguh along to show the hernia, because they said 'OH hey--you don't have a hernia" and I'm all like "then what is this huge lump formed around my ileostomy site!?" Ugh

If I had a camera, I would take picture, but it died last year and I have no money for cigarettes, much less a new phone or camera (my phone is also ancient and wont take pictures, voicemail, or let me get on the internet. Yes, I live in the stone ages now.)

Stoma hernias can be caused by being overweight, coughing a lot (I had pneumonia again this year) lifting heavy shit, or infection from the get-go of receiving an ileostomy. I have trouble fitting the wafer over my hernia and ileostomy, causing the wafer to crack a lot and out seeps liquid feces--thank you so very much, body. Come on, can't you just make it work?

I was hoping to at least get a hernia belt or some form of elastic fabric to hold it in, but no.

Here is a link of some products that are supposed to help with this... that i may just try!


Sunday, October 4, 2015

Urinary shit

So now my bladder isn't working right and i have an indwelling catheter attached to my leg like above. The line looks like it's coming out of my illeostomy bag, but really it is supposed to be shown coming out of my urethra. The bag of piss is attached to my shin, the lines to it strapped down to my leg. I have been taking Seroquel, Roserum, and Divalproex to sleep. Divalproex is known to create anticholinergic effectwhich totally fucked up my bladder.

I once saw a porn where a man had a woman insert a glass tube up his urethra. Either by accident or some form of spiritual intervention, the glass rod broke and the man was screaming in pain before the image cut out to black. That's pretty much what it feels like to have a tube shoved up your urethra, and the same sensation while it is being yanked out.
 I had enough bag trouble with my illeostomy and then to have yet another bag on my body? No thanks.

So after two days, I returned from the Urologist and he took my catheter out. I didn't scream like the man in the video, but I felt like it... I only made a small roar of pain, I'm glad to announce.

Having two bags at once is a little much. I mean, it's not the end of the world. I could have so many more problems in my life that I'm glad to be able to walk on my own, to breathe, to speak, to hear, and my hands... to be able to create.  Even in pain as I was, I reminded myself I didn't have cerebral palsy, or MS, or a million other conditions that would have seriously fucked up my awesome.
So I went through it. I grabbed my awesome back when they took out the bag, and I'm not gonna stop. I feel shitty about myself most of the time, but I have to remind myself about my good qualities, things that make me happy (kinda), and things that I am proud of.
So I dont have success in the eyes of the world right now, but I will someday. I am a hard worker, and I beleive in myself.

Wow. This changed the tone of this post a lot. Sorry for that :P

Monday, September 28, 2015

Divorced and Single

 So the time has come. for years it was draining from a pond into a swamp, one that i was drowning in.
I finally got a divorce, thanks to pro bono working attorneys. This also means i have no idea if it is finished or not,  but we think it is. :/

I wasn't protected by the person that was supposed to love me. I was hurt physically and notionally, and once was taken advantage of sexually when i wasn't in a state to accept it.he gossiped to his parents about me, he didn't want to hug me, my mom paid for his grad school and he never so much as wrote her a thank you note. He took money from both me and my mom and bought expensive stupid supplies with it. I wasn't important enough for him to stand up for me, especially since his parents had hated me all along, it was easier for him to fall back into the habit of being under their wings at the age of 30. 
The last two years of our time together, I was self medicating and drinking far too much to dull the deep bleeding ache I felt.
It's just like that Sia song, Elastic Heart. There were so many red flags, and i discarded them. It's hard to lose a chosen one, the one you thought you would spend your life with.

On top of all that, the pain of him pulling away, refusing to hug me, then refusing to kiss me--  it came to a point that we had gone so long without sleeping in the same bed or even in the same room that it was normal.
Seeing each other again was like seeing a ghost of the love we once had, and how ruined it was now, just a husk, just a mutilated thing that now was so wrapped up with hatred and hurt and betrayal that our meeting last fall as he took the remainder of his things away to his parent's house was a cold one indeed.
Why do you hate me? I did nothing so horrible to you, I used to think, before I convinced himself we were both holding the dagger stabbed into the other's back.

The thing is, you never think it's going to be your last.
The last time you had sex. The last time you held and kissed them. The last time you felt their body pressing against yours and the nearness of them dizzied you with love. The last time you'd told each other you loved them. You didn't think at that time, warm seasons ago, when you lay in the lake together, balancing your hands on each other shoulders while kissing his wet hair that this would be it. And never again.
Running out at night under the stars in the fields, collapsing together, out of breath, watching the sky as the moon climbed high in the sky.
On top of the roof of an old shack, bright lights falling from the sky in a shower of comets. The feeling of elation in your heart, and that comforting notion that never again would you have to search for a mate—because you found it in them.
I've always been a person highly aware of the present and the now not being forever. More often the good than not. I've always been over sensitive to that whatever niceness was going on, it would all be brutally cut short one day.

But still, somewhere around where my heart lies is s a fleeting moment of love, like a spark that quickly lit and then went out. Was it even love anymore? It must be, because though this was our new normal, I still remember what it tasted like to kiss his entire body. I remembered the rain that came down on the first night we made love, and how afterwards, both I and Him had gone out in it, me with my arms wide as I twirled, eyes closed and that lingering smile on my face. I remember the joy. I remembered how we both had protected each other emotionally, physically...
Once you loved me so much...

Thursday, October 16, 2014

How to Excuse yourself Politely when your Ileo's burpin up shit

Apparently, I have had a lot of Drafts here I've never posted. So... I suppose that is why I haven't updated in a while. I'm so SMRT that I didn't realize they were going into drafts.
Dar dar dar, I know wrds and hw to type on compooters. :/

With trousers, it's often quite easy to mask or hide a bag. An ileostomy bag ain't that big--depending on the brand you're going with. But against your right leg, you are totally aware of that thing and like "Omg--they are totally looking at it right now, freaking out, wondering if it's gonna burst liquid shit on them."

TRUST. Ain't no one care about your bag. They forgot about it the moment you told them. It's interesting, but not THAT interesting.
Unless it fills up with air (like mine does in the morning) or shit, it isn't noticeable at all.
It if starts to get uncomfortable or you think it might be noticeable, you could direct the attention to something else "Ah! I think I have something my eye! Excuse me!" (then run to the Water Closet) or "Pardon--I'm embarrassed to say I have something stuck in my teeth". These are good excuses, and then you can make an elegant exit without making it about "My ileostomy is shitin out lotsa stuff and it's goan go all ova da place if I don get to a terlet".

The worst is in a restaurant.

For years, I avoided eating with people or going out to the point that my in-laws wondered if I had an eating disorder. It wasn't surprising. I mean... I weigh like 3 lbs and look like a hairless baby chick or like Gollum with eyeliner.  But every time I eat, or am just moving around, or am just sitting there... my bag fills up. And my stoma is like a bratty child. I swear to Jeebus it has an incarnation of some spoiled little shit kid who is always plotting and planning, biding its time, being silent when I'm alone, and then as soon as I'm with people:

Thanks MacBook Pro Paintbrush. You are a piece of shit and NOTHING as easy to use as Windows Paint >:(

I have found for me this is inevitable. As I have no shame, decorum, delicate elegance and usually make the Britishly self-deprecating jokes regarding myself,  I have found it is much easier to just say at a polite pause in the meal--or at the end of it-- "I have to wash my hands and dump my bag. I'll be right back."

I mean--you got an ileostomy. It's just a part of your life. It's better if someone's head explodes from this announcement than your bag.
Man--I've had that trouble a lot. The exploding bag, I mean.

Many times when I am sleeping, the darn stupid NOT STICKY AT ALL wafer bends and leaks shit all over my blankets, my clothing, and my soul. Yes, my SOUL.
There's no way to act all cute in the morning with your loved one, waking up to Vivadli's Four Season's as you adorably prance out of your room clutching bedsheets covered in brown feces.

It's dehumanizing to sleep on towels or a bed covered in plastic like you are an incontinent 4-year old. 
Just... just no.

I have a very valid concern that my wafer will crack in public, and I will be left with no way to change it, fix it, or escape. It just isn't practical to carry alllll of your ostomy supplies with you wherever you go. A tote-bag is too large to haul around constantly! 
But, even though I have the supposedly "useful" sticky liquid, I have found masking tape around the edges of the wafer do assist in keeping the leaking feces at bay if you are wearing your bag for more than a day or 2.
(For monetary reasons of making them last, I do this quite frequently. I do not recommend it. :/ )

Then again, this is just a personal experience. Most ileostomates I have connected with were able to resume their normal diet after surgery, avoiding the usual suspects of mushrooms and globs of things that would cause a blockage... and their transit time was normal-to-fast, unlike my slow slow slow 8-hour speed. :''(

I am an unusual example.
 Doctors being mystified over my many health problems has long since lost the quirky sort of curiosity one experiences from continuous confused frowns, muttering with other doctors whilst you are still in the room, and the inevitable non-diagnosis of" idiopathic"--which basically means they don't know why and there is no reason for it.

As a last comfort to those newly branded with a rosebud stoma (heh. I named my small intestine stub 'Rosebud'. Orson Welles 1941 Citizen Kane, yall), I have a 40-something Degree and 75 degree curvature of my spine--both upper back and lower. Somehow my body looks normal...normal-ish... but my X-rays make me look like a cool awesome monster being that Marvel Comics should totally make into an evil villain.
For long years, it has been speculated by many that the pinched nerves and messed-up things in my dinosaur spine were causing me problems with my intestines, my nerve-endings in my face and legs, and other problems all across my withered little form.
So lucky you, dude! You probably wont have the horror-story experience I do, but perhaps maybe you can gather a bit of information and hints from these rambles.

At least... I hope it's a bit informative and entertaining.


Un-Related to Ileostomies, but a broken-face part of life


When I was 17 I entered a relationship with a boy that I thought I would marry. Yeah yeah.. young love and all that happy crappy.
It was mostly an entirely unsexual bonding, and the guy was more like a really best friend. Our conversations rocked, but whenever i wasn't physically in front of him, he forgot me. Forgot my birthday numerous times, forgot ot call me, or I'd wait all day for a time we were supposed ot have together, but.. he forot and was playign World of Warcraft with his buddies. :/
Anyway, not bitching, I'm over it, but one of my birthdays, the last I spent with him, we got into a fight, and well, my ratty hair got grabbed by the back of my skull, and my lover face and jaw were delightfully smashed against a cement windowsill. I blacked out there on the kitchen floor, and when I woke, there was blood everywhere and I was crying out "where's my tooth?" 

With my mother's angry urging, he paid the not-insurance-covered coin to replace my tooth with a ceramic cap.
but about 6 years later, when my husband & I returned to MN, it broke off as we were riding in the car to get groceries.

So that's without the crown. My little stub. Aint it just cute?
Now that we're on foodstamps (yay :( ) and dont make no money without no jobs, we were able to cover some of the enormous cost with some deal my husband did because it involved numbers and research and that's HIS bag--I do the stuff that doesn't require math. That's our deal, that's our teamwork. 

So after many times of a temporary cap thing falling off while I'm drinking my morning coffee or sipping Butternut Squash soup, I finally got my 'permanent' crown on once again.
In direct sunlight, it's a bit off-coloured compared to my other teeth, but it'll do, right?

Nice patch of sunlight there right on that fucker.

Unforch for my time as a young 20's -something, that birthday present from my X-boyfriend (Happy birthday! I forgot it was your birthday again--but here's a broken face!) also included a broken jaw.

So there's a bulge on my jaw there where the bone healed all weird... and damn, one day when I have money I'm gonna get it shaved smooth or something.

Yay for depressing update!

Gonna work on some more blog posts related to ileostomies now. Sorry for all that!


My top lip was also busted open, and I have a faint scar there I can cover with some old theatre makeup that's awesomely cake-y, but I can't whistle anymore. That fucking sucks. I used to whistle like, crazy good and that pisses me off more than the broken jaw.