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!

 

before i got sick

the following is a collaborative piece that would simply not exist without the knowledge you have all given to me. i dedicate these words to all of the generous souls who have let me inside of their personal worlds. on the good days.. and on the worst days of their lives. this is my love letter to all of the people who have made an impact on my personal journey.  xoxo, kelly

before i got sick:

  • i didnt understand what health was. i had no idea what crohns disease or ulcerative colitis was. i took what i had for granted – i never knew any difference. “health is never valued until sickness comes”; its true. until you get an eye-opening experience or diagnosis, you tend to take things for granted.
  • i didnt know what the word “remission” meant. other than remission of Cancer. but Remission is real. i capitalize Remission because it is just as more important as any disease. but remission is REAL, and people experience it – i will, too.
  • i could spend the night at someone elses house without worrying i would wake up in a panic, sick to my stomach.
  • i never had to worry about pulling over on the highway puking my guts out or keep an empty grocery bag handy in case i cant stop going 70mph on the highway, but such is life living with GI diseases.
  • i didnt feel guilty about cancelling plans.
  • what the hell is moonface?
  • i could run competitively, but chose not to. looking back, im upset with myself i was not more health-conscious.  im aware i didnt do this to myself, but after i put my health (or lack of) into perspective, it was clear what i wasnt doing that i was capable of doing.
  • i had no excuse not to eat my vegetables. now that i have IBD, its not even a choice.
  • i didnt have to depend on people. my doctors, my parents, my support system. helplessness sucks. i depend on doctors offices, medications and visits to the ER to keep me out of surgeries. to keep me alive.
  • i didnt know i would have such shitty luck with incontinence at a young age.
  • i had no idea my future would be in the care of others. on my journey to wellness, i discovered my heart was in helping others.
  • i didnt know how much fight i had in me.
  • i never asked for help. luckily, and thank god, i have parents that know when i do need help and go out of their way to help me with daily tasks im not always able to do myself. 
  • i didnt know what friends were. anyone with a chronic illness has a certain “you learn who your friends are” opinion.
  • i didnt know that i would like take a form of chemotherapy the rest of my life. before i got sick, i didnt know that chemo was used for anything else other than cancer.

a little help from my friends…

  • i never failed a class, my house was clean, i actually had sex and had never had an IV. before UC, my marriage was strong, but not colitis strong! – katie w.
  • i was a work-a-holic who never stood still, never enjoyed or had time to enjoy the simple beauty of life. never took medication not even for a cough/cold and was happy traveling, holidaying and exploring the world. i have had time to evaluate life and realize who I am. – victoria
  • i was a bit of a self-absorbed jerk.  Crohn’s Disease has imposed limits on the amount of energy i have and has made me think about where – and with whom – i choose to spend that energy.  it has allowed me to connect with some truly amazing people, otherwise known as my “IBD Family”, and has given me an opportunity to slow my life down and realize that the most important things in life aren’t things.  basically speaking, having Crohn’s Disease has made me a better person in every way that counts.- stephen dempster
  • i don’t find much holds me back. i try to make light of it. in work meetings when my stomach makes huge noise like normal i say “my Crohnie doesn’t agree”. raises a smile and diverts attention from the noise and people stop noticing. much better than when i sat my exams and used to hold me stomach tight so it wouldn’t groan and moan.- crohnies in need
  • before i got sick i was really blind to those that were. i would always help those in need but sometimes my mind would tell me they are faking, because i couldn’t see it! this is the reason now folks hear me using the line “But you don’t look sick” because i don’t but am. – joshua robinson
  • i never imagined i would ever know this much about about medicine and medical procedures! i never imagined i would have had to learn how to insert N.G. tubes on a nightly basis. i never imagined i would have to learn how to give sub-q injections on a weekly basis. i never imagined that i would become a health activist. i also never imagined i would have meet so many great and wonderful people, that i not only consider my friends, but my family too! – the Crohn’s Colitis Effect
BUT..

because i have crohns disease / ulcerative colitis:

  • i have a backbone. i have a say in my treatment. i have learned what it means to be an advocate for myself and give others the tools required to become their own as well.
  • i am educated. i loved learning about epidemiology in college, looking at the intestinal lining underneath a microscope, memorizing all of the medical terminology. it something i could relate to in a time i didnt relate to much around me. it too all of me to get through 5 years of college, but 2 degrees later, here i am. despite all of the setbacks, IVs, injections, hospitalizations & a surgery my sophomore year.
  • i treat my good days like gold. and max them out when they happen. because i have IBD, i know what a bad day can be.
  • i am a virtual road map to the nearest restroom at all times.
  • i have learned to treasure [uninterrupted] sleep. as a kid, i never slept. as an adult, i envy others who are able to sleep “regularly” in an unhealthy way.
  • i believe in healing power of pet therapy.
  • im motivated by the smallest challenges in my everyday life.
  • i smile more. generally, im 300% happier after accepting struggles and claiming small victories that may just be getting making it up a set of stairs successfully with no injuries!
  • i laugh. whats not funny about a fart? maybe a wet one..
  • setbacks can be a slingshot forward.
  • i have the ability to help others struggling with IBD around the world.
  • i hold family tighter.
  • i matured faster than those around me in certain aspects of my life.  i will likely be a child for the rest of my life in many ways, as sometimes it helps to cope living freely, lightly and with child-like humor. sometimes, its fun to be a kid and feel disease-free again.
  • i love my body more today than i did yesterday. i see scars and stretch marks and reflect on the milestones that have made up my life.
  • i have to be selfish at times, because i know no one else will do that for me. i have to advocate for myself to ensure my voice is heard whether it has to do with my course of treatment or educating others when they ask me about IBD.
  • i have twice the amount of determination and perseverance to  juggle my daily workload, to complete a half-marathon, to beat my disease.
truth be told, before i was diagnosed with anything, i didnt have much perspective on life. ive been through some unfortunate setbacks living with autoimmune disease, but none that have killed me! i do believe that i will overcome this disease entirely one day. and im not sure i would whole-heartedly believe that without the people who have helped me get here. it is a heavy load those who live with autoimmune diseases carry, but i dont believe i cant handle it. there are certainly days i wish i didnt have to, but in perspective, no matter how many bad days you have, the good ones still outweigh them all. before i had crohns or colitis, i had a wonderful life but i wasnt living it, not fully anyway.
dont let my positivity fool you. i have had hardships and struggles in my life with disease. i will not lie; there are days i quit, knowing i can start over fresh the next day. but the things that have been taken away from me due to my disease, have in turn provided me in opportunity; ten fold. friends, networks of support, communities filled with IBD & autoimmune patients just. like. me. who knew?