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.