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.


  1. It's so good to see an update, even though I'm sad to hear things are going so poorly for you. I'm one of those too fast transit people, taking 12 pills a day (imodium and lomotil) just to get by without dehydration. I'm grateful I've not had any low level issues since cancer treatment, but my ileostomy seems to have provoked worse and more frequent migraines than I had before, endless sleepless nights, a rigorously timed food/medicine schedule that just sucks, and a fear of being in business meetings at an inopportune gassy moment.

    Please know there are people out here rooting for you and wishing you well. I'm hoping to hear that all this will pass so you can move on with your life as normally as it could possibly be.

  2. So glad to see a posting,but sorry to hear how hard it is and wish I could send help or something.Have you tried drinking coconut water? Vita Coco pineapple flavor is so good.Hope everything turns around.

  3. I've had an ileostomy for almost 5 years and can't quite find out how much sodium I need daily. I either eat too much and end up like a ballon or eat too little and constant weakness & dizziness ensues. Does anyone have any tips? I feel so lost.

  4. I am sorry about how you are feeling inside and out, BUT like everyone else has mentioned, I am so happy to see a post from you. I can only keep myself away from dehydration by constantly drinking powerade zero. It gets old fast, but dehydration makes me crazy. My ileostomy has definitely changed my life for both good and bad... but some days I can only focus on the bad!! Hope your good days are right around the corner too! :) Take care.

  5. I hope she is ok

  6. I know that apologizing for how gross you feel may not comfort you as much as I wish it could, but I'm going to do it anyways because it makes me feel better. So I am sorry, for all this shit that's been thrown your way, and for how disgusting you feel.

  7. Gonna ask you get put on the special Green Tara prayers list. Or is it the White Tara? Dang, I'm just switching from Chinese to Tibetan Buddhism and my new pantheon is still under construction. Or maybe I'll just keep them all. Can't have too many deities looking out for you. I'm sure they can get along even if they don't speak the same language. They probably all speak a little English from watching American TV. We're releasing animals next weekend. If there's a moment reserved for it, I'll dedicate the merit I've accumulated to you. Yeah. And that thimbleful ain't much, but you put a few together and you have at least a half-full glass. I need to make some more merit to benefit darling sufferers like you. I know a little bit about what your husband feels like and I am sorry for the grief and sorrow in the middle of your love affair. I hope it is beautiful in other ways. I hope my early-stage love affair is strong enough to sustain thru whatever happens. And I hope it doesn't get as bad as your current predicament. Much love.

  8. Finally - a girl after my own heart...................