Thursday, September 19, 2013

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.

Sunday, May 12, 2013

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?

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.

Tuesday, March 5, 2013


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.