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