Hey Everyone..i haven't been on here in a long time! I was diagnosed with chrons August 6 this year and got worse from there after. For 2 weeks I was on 40mg/day of prednisone and 3 pills/3 times a day of asacol. I was in pain every day, couldn't eat, kept bleeding, and was getting weaker. I had to force myself to get up every morning and go to work. I stopped doing anything because of the constant pain I was in. I would go about
5 times in the middle of the night (all blood) and would lay on the couch in pain for hours not being able to fall back asleep. I would b lucky to get about
3 hours of sleep in a night. Then on August 21st my body had enough. I couldnt get off the toilet that morning, was throwing up, and could not move. My GI told set me up to go to my dr's office to get admitted immediately...i had 103 degree fever and was dehydrated...the next 3 weeks are a blurr to me. I got my first session of remicade, put on antibiotics, and upped prednisone..at one point i was on 120mg a day..My diet was upped and downed..no food..clear liquids..full liquids..food..clear liquids.food.i was told to be patient and that i needed bowel rest.this whole time i was never given any pain killers! only tylenol or zofran for nauseau..i tried to leave the hospital after being there a week..i left and was back 6 hours later..weaker..thank god when i got back they gave me something that took the pain away, dauladid...omg did it help me get thru the day and night! So the next few weeks i was only on clear liquids..then it got worse..i got a pulmonary embolism. yes a blood clot in my lung..and i was having tachachardia everytime i got up to do anything..i was rushed immediately to another hospital an hour away because it was a friday night and they were the only people who could do my clot stuff on the weekend..i got there and it was hell..my chart said i was a 16 year old pregnant girl with chrons (IM 21 AND NOT PREGNANT!) they were calling me Aubrey Kessinger...close, but not my name! and they asked me if i wanted depends, a commode, and a sandwhich!!! i was on clear liquids! every time i put food into my body i would go backwards! i was so scared..thank god for my parents tho..they were with me this whole time..i was so scared that weekend..they even told us we wouldnt get anything done til monday!!! they didnt have dauladid there either..i was given so many pain killers that did nothing..and they were handing them out like candy..it was so scary..finally we did get something done that morning..they dopplered my legs and arms, no sign of clots..but i got a filter put in either way because the clot came from somewhere! they also gave me a unit of blood there..i also had a pic line put in the week before when i was on no food..i was getting those food bags for a couple days..thank god for pic lines..it made my life a little easier. after i left the bigger hospital (which was old, falling apart, i had an old lady next to me preping for a colonoscopy in her bed! and my chrons was not an issue to these pple because i was in the cardiac unit on monitor) i had to go to the cardiac unit in the hospital back at home. The dr.s there said i just have a weird ekg (my heart rate would go up triple the normal person and the next second triple below a normal person, i could totally feel it!), and there are many reasons why my heart was doing what it was doing. plus if they wanted to go in and shock the parts that were messing up, they couldn't! my filter is in the way! so finally they let me go back to what i call home..PEDIATRICS! yes i have been lucky enough to be in peds for the past few weeks..i started with a shared room..then that night i left and came back i got my own room with my own bathroom..and the night i came back from the cardiac unit i got my own room with my own bathroom and shower!! they loved me there and i loved them! those nurses and care attendents were my mothers and i owe them my life! it was one of the nurses who even brought up to look for a clot in my lung, not a doctor. So those next couple weeks was just clear liquids, pain killers, and trying to stay positive. I got 2 more units of blood along the way too..i was always confused about
what day it was and the time..i still am trying to figure that all out haha..i of course had to drop out of school this semester..which now puts me a year behind for grad school..but i look at it as a way to get more clinical experience before i apply..and im going to apply to more schools and shoot higher...what pisses me off the most is the friends of mine who dont understand the seriousness of the situation..some r like "o u will b better in a week, y did u drop out of school? u can do work from the hospital, u look healthy!" I COULD NOT EAT FOOD FOR WEEKS! I HATED PEOPLE WHO COULD EAT! I WAS STARVING BUT NOT STARVING. I WAS MAD AT PEOPLE WHO TOOK FOR GRANTED THAT THEY COULD EAT. ITS HUMAN NATURE TO EAT AND I COULD NOT! AND U THINK I NEED TO WORRY about
GOING TO SCHOOL?? sorry im still mad at the ignorant people who say o i have a friend with chrons and they just have diarreah sometimes and they're okay..yeah well i am a severe case u idiot..i wouldnt say that, but i wanted to!..then the whole pain killer thing came into the picture..my general practioner dr. is an ******..telling me that the pain is all in my head and that he doesnt want me to be a druggie. yes i get it! i dont use it that much! i dont want to be on it! i only needed it occasionally! well he changed the orders to every 4 hours i could take it (i never took it that much) to every 6..that night i was in screaming pain for 3 hours waiting for a shot of it because of he changed it..i wished he was in the bed and me telilng him it was all in my head...anyway they let me have it again every 4 if needed (i would got 7 hours without it, im not a druggie!) i quit it cold turkey the other night, they finally put me on duragesic, that pain patch, which i plan on stopping in a week or 2, i can tell when the pain is over..its getting duller...so that dr. came in the other day and just started saying that i have anxiety disorder and that i need to be on xanax XR (which i was for a few days there, and well lets just say i dont remember a darn thing! a weekend went by and i thought it was thursday! it knocked me out, i slept thru the pain, woke up in pain, and cried all the time. my mom said i was a different person on it) so this dr. tells me that its a baby dose and that i need to be on it and get used to it and that i take the dilaudid 10 times a day (no how about
maybe 3 u jerk..i was keeping track of when i went to the bathroom and when i took pain killers on my cell..he was exaggerating!!) he said that i needed counseling and that i have a disease that will never b cured and i will b in pain and that sorry someone had to tell you..I KNEW ALL OF THIS BUT THE PAIN IS NOT IN MY HEAD..he said "u say it feels like you are pooping shards of glass (yes thats what it felt like duh) and then im okay sometimes during the day..he made me so upset..he said that im wired and i shouldnt refuse the xanax XR because im on the smallest dose and babies take it and its just all in my head..i now only take the regular xanax at the smallest dose that you take as needed..i take it at bed time only now..so anyway..i packed up that day pissed..by this time i was on solids FINALLY..low residue, small portions, lactose free..dont get me started about
the dieticians either..they tried to give me oatmeal a few times, blueberries, and well just about
anything that would send me backwards..i talked to so many dieticians and they said they honsetly didn't know anything about
chrons and what special things to do for me..whatever done and over with, they just messed up constantly lets just say and i would freek out at every meal not knowing what i should eat or could. I came home Tuesday..so im home now...i lost 22 pounds and all my muscle..so im trying to gain weight and get stronger..im also of course not out of this flare up yet..strict diet at strict times and waiting for the poops if thats what you call them lol..so now i just stay at home until january 22nd when school starts again! haha..i will be stronger and healthier im sure in about
2 weeks, so that whole time i get to just relax, go shopping, and have fun! im so looking forward to it! i wanna go on some mini vacations! i deserve it..my whole life has now changed from this..i know i now have a chronic disease that has no cure, but can be controled and put into remission..ive had my other 2 courses of the initial dose of remicade..we dont really know if they worked..we were told that the first dose would make me a new person..yeah it didnt..the second didnt either..who knows about
the third..but we were told im not a failure until we see what happens b/w now and my fourth dose..well for all of you who have read this whole thing..thank you..i was in the hospital for 34 days..im trying to get back to life, slowly, and cant wait to live again..i am so greatful for everything..i was before but i am even more now! things happen for a reason..and this happened to me for a reason..i just have to find out why! BY THE WAY IM STILL CONFUSED about
THE DAY OF THE WEEK AND HOW MUCH TIME HAS GONE BY AND about
ALL THE DETAILS THAT HAPPENED TO ME..SO THIS WAS A STRUGGLE TYPING..ITS CHRONILOGICALLY OUT OF ORDER FOR SURE AND ALL OVER THE PLACE! I CANT WAIT TO FEEL SANE AGAIN hahaha....
Audrey :)