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.

Anyway, YES! YOU *CAN* SWIM AND GO IN HOT-TUBS WITH YOUR BAG! 

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! :)

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!


<3

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

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...

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. :/

Anywoozles,
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.
:D

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.

<3

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

Unrelated...

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. :/
Nice.
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.
YAY!

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!

<3

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.

Vitamins & Minerals Lost with an Ileostomy Proves Deadly

So it would have been nice if an ostomy nurse or, you know, a fucking Doctor had informed me that once you have an ileostomy, the part of the intestine that actually absorbs minerals and vitamins like B12 and B1 (Thiamine Skip to the part that says "WHAT IS THIAMINE AND WHAT ARE THE CONSEQUENCES OF THIAMINE DEFICIENCY?") and all the other B vitamins is gone. Yeah. Gone. No big deal, right?
Without B1, you begin to get lesions on your brain.
Lesions. Deep sinking holes and sores that eat away at brain tissue. I was actually actively dying. Fun.

B1 is fortified in almost all of our foods, from bread to milk to cereal and whatever. That's why clinics and hospitals have stopped testing for B1 deficiency, as they assume most Western culture peoples consume of it in their every day lives. And that's true, they do. But for ileostomates, we don't absorb many B vitamins anymore. Some ileostomates have a pretty good diet, more normal to what they had before. Those of us that have had severe diet changes, well, at the two year mark, our B1 deficiency begins to show.

This year, I began to get disoriented, confused, angry at weird shit, and my hands and whole body were constantly shaking like I had Parkinson's disease--I felt like I was going mad, and even tried anitidepressants, which only made matters worse. Why did I change so suddenly? What the fuck was happening to me? I couldn't get out of bed, my entire body ached and hurt, I lost so much weight I now am just a skelaton.

My husband works at the College of Physicians and Surgeons in our province, and researched through their database to discover that after two years, quite a few ileostomates with drastically changed diets begin to develop B1 deficiency. Some have it worse than others. Some can manage it. Some aren't affected. But those that are end up, well, dying.

In Canada, it is legal to order B1 solution online, and we just walked into a pharmacy and asked for insulin needles and received them. When Thiamine enters your muscle tissue, it is the most painful burning like fucking liquid Napalm I have ever experienced in my life. I have had 8 or 9 surgeries in my life, and I have to say I would take another surgery over having injections of Thiamine. But I have them every few days anyway, because without it, I begin to slip back into a really disoriented and fucked-up state of being. That's no way to live, man. What the hell.

For those in the US, if you are very clever and don't mind spending a few dollars to save your life, you can find sources through the internet in which to receive injectable B1/Thiamine ordered from Canada. Not that I encourage anyone to do 'illegal' shit, but come on. Uhm...... Thiamine shouldn't be illegal to get. What the fuck--like you're gonna get high on Thiamine? Impossible. Like you're gonna collect a whole bunch and go to a middle-school in a trenchcoat and be like, "Hey kids. You wanna get Thiamine injections? Come on. All the cool kids are doing it."
You can never have too much B1 in your system, and you can never have too much B12. Your body just kinda deposes of it, like if you have "too much" vitamin C. It leaves through your urine and stuff like that.

Dude, this shit sucks.

No More Intestines= No More Seratonin!

As far back as I can remember, I have never laid all day in bed. Even after surgeries, the anesthetists are always like "holy shit" when I sit up in bed and start talking, grab my IV pole and walk on outta there to start making the rounds. Even when I've had the flu, I've generally lugged myself about enough to make it to the water closet, to the kitchen, to the couch, and back to bed.

I've never been one of those people that's been bored, either. I never used to wake up with nothing to do: I always wanted to write that day, no matter what day it was, even birthdays. I never woke without a purpose.

This year has been a pile of feces slowly dissolving into a pile of corpse exudate. Just when I think it cant get any worse; oh it does, and then some, and then some more. And the rock bottom always sinks ever lower and lower.

Some of this is due to moving four times within the year and losing some of my most important and much beloved items. Some of it has to do with Gastroparisis, and losing so much potassium I blacked out for an entire day, apparently screaming lying on the kitchen floor while hazing seizure after seizure.

But even being borderline depressed my entire life,  I have never before experienced such a lack of energy and apathy that I cannot even move out of bed, don't even look at the Internet, read, or write. I just lie there. Just. Lie. There. Like a dead thing--and likely smelling and looking like one too.

This is related to iliostomies how?
Serotonin.

Where is fancy bred; in the heart or in the head? Serotonin is created in the gut and in the head, and if you are missing a large portion of your intestines, such as for an ileostomy, you are not already making enough serotonin to 'block' in the synapse. As the US Library of Medicine & National Institutes of Heath says: "the predominant site of serotonin synthesis, storage, and release is the enterochromaffin cells of the intestinal mucosa. Within the intestinal mucosa, serotonin released from EC cells activates neural reflexes associated with intestinal secretion, motility, and sensation."

As my apathy and depression, insomnia, and suicidal panic grew worse, no one thought to tell me that without my large intestine creating seratonin, this shit happens. I was put on an SSRI, a selective serotonin reuptake inhibitor, Mirtazapine, a med to help both peeps with Gastroparisis and to help with my moods. It made me worse than before, and every day I felt like I had a hangover and couldn't even look at the sun or roll out of bed. My husband was carrying me to the water closet at this point, and again, the lackluster care of a shrugging physchologist left me floundering. With much research both on my husband and mothers side (both of them in the medical field, anyway), we discovered  5HTP.

5HTP has been used for 40 plus years in Europe and is safe as a fucking fluffy bunny that gives you no alergies, wont bite, and just wants to cuddle with gentle fluffy rainbow kisses. Actually, it's much safer than SSRIs, which can lead to 'seratonin syndrome' (a nasty bit of business, there) and for which everyone and their Dr admits takes mutiple trial and errors for years before the 'right' combination of drugs are found. It will not fuck your system up and make you fat, you wont feel tired from it, you wont have any type of reaction or side-effect.
 Don't take it if you're already on a antidepressant, because you gotta wean off that shit completely before you start another thing, dig?

 I love how on WebMd, some little asshole writing for big Pharma bashes it and makes baseless, false claims of how it's unsafe, just because Big Fucking Pharma can't regulate and sell it. Haha, assholes!

Now, I haven't been taking it long enough to know if it will help me, but it will, though it takes months to really get it in the ol' bloodstream.

In any case, this is just soemthing else to watch out for if you're an ileostomate. If you start feeling increasingly lethargic, depressed, have no appetite, can't concentrate, and generally feel like a pile of shit, this was be your problem.

Potassium

There are a few things I wish a doctor, and not the ER attendats, had told me about illeostomies.

Apparently, not only losing sodium and electrolytes essential to life like potassium is our problem, but we leach other vital nutrients as well--Even with me, being as slooooooooowwwww digesting as I am with gastroparisis.

(On another note, with careful slow chewing, I can eat nuts. Carefully, mind you, but godddamn it--I can still eat them. In this form especially:

Unrelated to ileostomy, I have spent this year in and out of hospitals with gastroparisis. I barely have the energy to scroll through Tumblr much less type. It's shit. Also not surprisingly, this equals suicidal depression. When one can't see an end to their physical suffering, their torments, their nights of endless no sleep, their years of losing so much weight they can't even walk to the toilet on their own anymore....... yeah.

A delicious bit of advice: picklejuice. I was introduced to this as a young girl living in a town of a different minority where picklejuice was a common cure for muchle aches and pains, and a treat for children. But the sodium lost in exercise, and the sodium lost as an ileostomate--picklejuice becomes the delicious Russian accompanyment to drinking---but not just drink! It should be a little sip every day for yourself--or V8--something to give you back that sodium and other nutrients that the "normals" do not lose.

No one, during my surgury or afterward, informed me of all the shit I'd be losing with my ileiostomy. I have been over and over in the hospital for dangerously low levels of potassium, for dangerously low levels of blood sugar (almost went into a coma thte night of my wedding--that lovely incident with many pictures but I barely remember since I was already slipping into a coma. Woke up in an ambulance. Lovely. Right? Yeah. No. )

Most iliostomates have to worry about their transit being too fast. With mine being too slow... I am often near death. I wish I was being a romantic teenager obsessed with death saying that. But fuck teenagers. I dont wanna die. I have got a lot I want to do. I'm near death because my weight has plummetted this year to the rate that I no longer have muscles attatched to my bones, to that I cannot sleep, my entire body constantly shakes, I no longer have a menses, I vomit constantly and keep only a few ml down every day, I can barely walk much less have sex with my beautiful husband.

Romanitic. Yeah.

Apparently, fucking with your insides surgically can only happen so much before you get gastroparisis. It is an unfortunate side-effect of digging around through someones guts. Bad shit happens. Big suprise. I was afraid of this very thing before my surgery--but "It can't happen to me. No.... only rare people. I'll be fine."

...

And so it goes.

Fair warning.

Nutrition & Healing

As I've been struggling to remain alive, every day it becomes more apparent how important nutrition is to our health. Fucking shut up, right? Duh. But I mean, REALLY think about it. Really be mindful about what you are putting into your body.
My life has progressed from bad to worse, with neuropathic icicle-stabbing pain into the giant spreading numbness on my left thigh, the constant tremors in my hands and body, constant vomiting and muscle wasting of delightful Gastro Parisis. The actual things I can "eat" as in chew are only a few cherries, a couple of frozen blueberries, maybe a cracker or two and a bite of soft cheese. Everything else is vitamins, supplements, pills and Ensure.
Needless to say, I could be doing better. Sorry to get all earthy on you like this, but I've found Chakra meditations really assist. THIS is a kick-ass website that has nothing to do with religion whatsoever, just offering guided meditation as a way for us to harness what's already there inside. I've been practicing meditation for a while now, and on days when I've really focused quite well and been able to calmly meditate, I can harness my body's energy enough to not vomit! Sounds disgusting and like "oh wow, good job, loser" but for someone that's been barfing a few times a day for the past 7 or whatever months, this is a huge accomplishment. I was so excited I had to burst out and tell my husband and he was like "YEAH--YOU ROCK!"
Now, meditation has been known for thousands of years to promote healing. But there is numerous research now to justify making it a part of your daily life, as important as feeding yourself nutritious and delicious foods. As important as taking Bromelain to help reduce swelling after surgery, so is it important to assist your body to heal through meditation. Meditation is not unique to only one culture or religion. You don't have to renounce your deities to meditate. Meditation has been around in both Christian and Jewish practices for a very long time, but had trickled out of popularity during the 1500s.

So that's my bit on healing, and because i have such shit nutrition but don't want ot die, here's what I most sincerely recommend to anyone of any health stage:

This shit may look like nasty green powder, but I get the Acai & Mango-flavoured shit, mix with with a bit of oj and it's fucking delicious and super damn good for you. Okay--so I just spilt it all over my bed--green sweet powder everywhere. Ugh.

I wish I had this in capsules, because swallowing it is nearly impossible like gagging down whole fish--but of course unrefined omega fatty acids are beyond awesome for your body. From the website "for people who want one product that gives them all of the good fats they need, without any of the bad fats they should avoid. Every cell, tissue, gland and organ is dependent upon the presence of essential fatty acids. They are the main structural component of cell membranes and are necessary for cell growth and division."

(Wouldn't that be mitosis, then? I remember learning that in 4th grade, mitotis is the process of cell division, although the definition is swaying and changing throughout the years.) 

This lastly is some seriously delicious shit. It actually DOES taste like lemon meringue, and all you need is a swallow every day to get your Omega 3s. Damn good stuff.

Much more, but I have some research to do <3

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.

Can You Wear a Corset with an Ileostomy???

Birthdays are always hard for me. It's the time of year where everything I haven't accomplished career-wise really hits home. I try to go into the day with no expectations so I don't become disappointed, but a little part of you that expects just a tiny bit of specialness is always heartbroken when nothing good comes your way.

We just got done with our SECOND move, and Mr B is extremely busy with grad school, and we don't have any money to spend, (we barely have any at all) so I understood why I would be receiving no presents this year.
Since I can't eat cake, or hardly any food at all (not typical of ileostomates, just me as I have slow transit and possible borderline Gastro Parisis), there was no cake or candle blowing. Our tiny rented rooms are empty but for lawn-chairs we borrowed from the landlady and our big suitcases. No streamers or balloons--kid things, but they can brighten up a place.

After some really uncomfortable and unsuccessful sex, I spent the rest of the night crying in the rain, waiting for buses that showed up late, walking in the really fucking cold wind to get to an overcrowded bar that didn't have room to seat me. (And at that point, I wasn't going to spend an hour traveling to the heart of the city to nightclubs.) I think I'm also so sad because when we moved, we had to leave our cats behind, with the promise from my mother that she'd make sure we'd get them back. Well, she's grown attached to them, and only wants to relinquish one now, and hasn't spoken to me since. I kept checking me inbox every day, thinking she would at least write me for my birthday, but alas...
We just feel so lost and alone and without money and directionless in this country.

BUT

Earlier that day, I went in for my second appointment to get my corset fitted. Lace Embrace is a fabulous place here in Vancouver BC where they will fit you properly and make adjustments for your own body type and desires. Because I have scoliosis, I had to wear a TLSO back-brace for about 15 years or something, at least more than ten, and I became used to the feeling of having that nice rigidness around me. However, corsets are breathable, plastic braces are not!

Lace Embrace has shops now all over the country of USA, and is run by this surprisingly young-looking Melanie. (Seriously, she looks like she's 22, and not in a surgically enhanced way at all, but in an enviably good-genetics way.)

On my first visit, her assistant fitted me and began filling out the form for the kind of corset I wanted. On my second visit, Melanie fitted me herself with Dita Von Teese's prototype stage corset. (Yeah, did  I mention Dita flies to Vancouver JUST to see Melanie and get fitted for custom corsets by her??)

Amazing. Anyway, mine is I think called the femenette, and right here on me is Dita's prototype... an overbust--I'm getting an underbust, and it's too big for me, as she is bigger than me anyway. (My shoulders look all wonky because I have on this sweater-shrug thing that goes over my T-shirt... I don't know what it's called, but it always slips off my shoulders and makes them look like footballer shoulders.)

Yes, that's Mr B waiting patiently in the background.

With Melanie, I discussed how I have an ileostomy and how I'll need access to the bag. She took down my measurements and said no problem, she can make the corset shorter, or have a little flap that opens and buttons up again, just like the Victorian nursing-corsets, with flaps to open for boobage to come out.

I have this problem with ligaments in my body, and those holding up my organs are wear and so my liver etc has all fallen very low. With a corset, it lifts them back up where they should be. And no, it's not bad for your digestion, and no, I'm not a tight-lacer. I don't want to have to defend my reasons for liking corsets. Some feminists will say it's cages of men's tyranny or whatever bla bla. Others will say Why--you're skinny enough. It's not about being skinny, it's about being an hourglass, and I love old fashions anyway, so STFU.

I'm getting mine made in this pale pinkish sort of cotton twill--I think it's called??--that has this sort of jaquard-ish floral design. It's going to be edged in cream lace, and though we still have to knock out a few details about stitching, for the most part, I think that's it. In 4-6 weeks I return to Lace Embrace for a specific fitting of my actual corset--and I will keep you posted!!