Remission

im not sure what Remission means. its not something im honestly all too familiar with. the last time i was in clinical Remission, was before i was diagnosed with crohns disease or ulcerative colitis. Image

i capitalize Remission for a number of reasons, but the main reason being i see it as a state, a royal majestic state. if you read much of my writing, im sure youre annoyed by my constant writing habit of writing in all under case, with very few exceptions.

as much as i hate to admit it, there is no way around “if”. “if i knew what being in Remission meant.. “if i had enough energy to finish my day as strong as i started it”.. i think every single day, i find myself finishing my “if” quandaries differently. “if” is one word i one delete from the language of chronic illness. its so limiting, so restricting.

many days, Remission to me, means reminding myself of the things im not able to do. and. this. sucks. who wants to be reminded constantly of the things they are unable to do, and even worse, condemn themselves from doing these actions? im my own worst critic. its an awful feeling having to doubt or deny yourself things you deserve to be happy in life.

my daydreams of Remission are vivid.. soft puffy clouds, cats riding unicorns, sparkly ice cream cones floating in the air, mountains of cheese flowing like lava into the streets, dancing orchestras on Fat Tuesday, huskies saying “i love you”, playing dizzybats with old coworkers and havings drinks at the bar winning dart tournaments at Wolskis….. living freely without hesitation.

Remission to me means being able to wake up in the morning and jump out of bed & having the ability of walking out the door with no medications. instead, i pick up my heavy sack off the floor before i leave, knowing i will need at least 3 of the 8 bottles of medication in it before noon.

Remission means no puking, or spending 60% of my days in pain. Remission means food. Remission means being able to be in public and not be disgusted by the smell of other peoples that i cant eat. Remission means no lung issues, chronic rotten infections, days spent hurdled up in bed, or nights spent crying on the bathroom floor. Remission means allowing myself grumpy days that are completely unrelated to my health – & really happy days celebrating my ability to breathe freely. Remission is a sigh a relief. Remission is family, friends & never cancelling plans. Remission is Hope, a Future. Remission is smiles. Remission means normal.

an ode to my commode (a poem about shitty diseases)

an ode to the commode (& other shitty diseases):

its a shitty disease, this thing called “Crohns”
put to a movie title, it would be “king of thrones”

theres a few secrets that some like to keep hidden,
but since im a rebel, i like doing the forbidden
there are too many puns,
besides “it gives me the runs”

“what CAN you eat?” its simply really..
no popcorn, no butter, no spicy chili,
no milk, no red meat, no seeds and no nuts
no broccoli, no beans or id have no guts.

“how do you poop?”
the snake poop, the crippler, the incredible hulk,
the splash back, houdini, the second wave bulk.
theres the spinal tap, the drunk poop & lincoln log turds,
then the one you rethink having cheese curds.
greasin’ the bowl, growin’ a tail,
the times you cant wait to get out & inhale.
its too hot in this room, get me out now,
sixteen times a day, i scream & shout OWWWW.
i grunt, i groan, i scream & i yell
if theres one thing im good at it’s IBD hell.
the bloop, clank however you put it,
a dump is a dump, a shit is a shit.

with the amount that i spend on soft toilet paper,
WELL…….there is no rhyme to this one. im just an expert.

at the age of 26, i cant trust a fart
bring a spare set of panties, cause ive mastered the art.

im an old soul, trapped in an old body,
thanks to medical debt, retirement wont include a Maserati.

creaky joints, spare clothes & osteoporosis,
the joys of annual tests for Tuberculosis!

laxatives have become a part of my norm,
sometimes if im lucky, my poop has great form!

you may have left me with medical debt,
and sometimes depressed, since theres no cure. yet.

“what do you eat?!”.. a familiar phrase..
the others? oh, i could go on for days.

misconceptions of “invisible illness”, ive heard them all.
“youre to fat, youre too skinny”, too many to recall.

the most annoying one?
“i’ve got your cure-all”
“stand upside down, eat tree bark, take these supplements, youll be fine”
while i roll my eyes, envisioning bottomless wine.

should my poop be this color? am  i sicker than i think?
all of these strange symptoms just make me want to drink.

porcelain throne, john, loo.. i see you too often, in my humble conclusion.
look beyond my smile, often its illusion.
im exhausted, im tired, i want to throw in the towel.
some days i do.. because fuck my small bowel!

my buttholes itchy
im feeling bitchy.
in many ways, IBD deserves no praise..
but its strangely blessed me in unexpected ways…

new demons to battle

WOOF. what do you say when youre angry, sad, confused & have absolutely zero energy to hold any of the above emotions at all?

im glad i waited a few days to update, because there have definitely been some angry moments of reflection. superman juic

its no secret i havent been feeling well at all lately. i wake up in the middle of the night & start to blow chunks all over. im uncomfortable in any sleeping position. the pain in my body combined with the wounds i have going up in to my colon have put a huge dent in my sleep. im talking maybe an hr or 2 a night. it literally feels like my butt has teeth & it is chewing shards of glass.

after an exam on tuesday, the doctor got me going on 2 forms of chemotherapy that will hopefully aid in the healing of the significant issues ive been having with a fistula & a fissure. after hearing several sighs an “oh my gosh” and a “we need to repair that right now” i felt less than thrilled about what i may hear. he did tell me i need to have it repaired, but how much depended on how my body decides to respond to the remicade. in order to avoid complicated surgery, i need to start them both immediately to avoid further damage & hopefully stop it from spreading to the greater part of my colon. we will know within 6 weeks if they are working. i have a good feeling about this doctor; he was kind, he did his research about my case & expressed genuine concern to meeting my needs. i truly feel as if my journey to remission is so close.

in an effort to save the part above my rectum that has not been damaged yet, i started Remicade (today) again in addition to mercaptopurine (6-mp). i will know within 6 weeks if this fixes my fissure & fistula.

he did say we are taking a chance by starting remicade (infliximab) over again, since it has failed me once. but in the 3-4 years i was on it, it was probably the closest to remission i had experienced since i was diagnosed. to spare me some costs, were trying to avoid more genetic blood tests, since they are NOT covered by insurance & usually run upwards of $1000 each. i also risk the chance of having a severe reaction, after stopping it for so many years & developing anti-bodies to it.. but if i dont start NOW, i will lose part or most of my rectum and colon. (now you see why i advocate?) by the time we would receive the general genetic markers & anti-body tests, the damage may already progress, so.. were risking it. i need the medications & i need them now. i started the oral pill immediately on wednesday & had my first loading dose of the infusion today and will have another in 2 weeks.

for now, im on a liquid diet in an effort to try and not have any output, as to no irritate the area more than it is already. i am hungry, and weak and im tired. i came home from my infusion and i slept like a rock for a solid half hour.

im not sure i have more to say than that.. now its a waiting game.  im angry, i have no energy, i dont sleep; even sitting down it feels like im getting a rectal exam, but with a cactus instead fingers. i cant run – while my team has just begun practice last week, i can barely even move without losing an alarming amount of blood. ive been puking on & off for weeks & have at least 8 or 9 mouth ulcers. knowing i have 6 more weeks of waiting and feeling like this makes me mentally drained. i found myself at my desk on wednesday welling up in tears and i had not even been thinking about it. by the time i made it to the bathroom, i was sobbing. it hit me like a ton of bricks that i may lose part or all of my rectum for something that seemed so minute not long ago.

on a mission for remission!