I was in the hospital for over a month....

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ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 9/25/2008 5:35 AM (GMT -7)   
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 :)

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/25/2008 6:00 AM (GMT -7)   
Audrey, first of all I am SO sorry all of this happened. I could cry really...I went through so much of the same ridiculous garbage-and almost died as well except I actually was pregnant the first hospital stint- just this past summer and nearly DID have to drop out of school.
I agree about the nurses being angels and I cannot believe how ignorant people can be either!!! You know you look normal(excluding the fact that oh, I don't know, you weight NOTHING), but you are dying on the inside....
I'm really glad you're able to just rest right now, and I hope you get better quickly. Keep writing on here please! Just know that there are a lot of great people here and we are here for you :) Let us know how things go.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


kam#7
Regular Member


Date Joined Jun 2008
Total Posts : 125
   Posted 9/25/2008 6:42 AM (GMT -7)   
Audrey -

I am so sorry to hear about your awful experience. This disease is horrible - REALLY horrible!

In my experience, things did not get better until I saw a top doc with a specialty in crohn's disease. I am not sure where you live, but I believe with everything in me that it is well worth it for you to travel (if necessary) to see a reputable crohn's specialist. I feel soooo fortunate that I live in a big city with some of the best crohn's docs in the country.

Always remember, this is YOUR body and YOUR health...use whatever energy you can gather to get into see a good crohn's doc - I think you will find much needed relief.

Please stay in touch and keep us posted. You are in my thoughts and prayers.
35 year old female - Diagnosed w/Crohn's 2002 - Surgery 2004

Currently taking: Pentasa, Entocort, Imuran, Immodium, Zoloft, Wellbutrin, Seroquel


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/25/2008 6:45 AM (GMT -7)   
You've had a rough start with this disease! I am so sorry! It's good that you can feel the pain getting duller. Maybe the Remicade is starting to work! I really hope that something is helping and you can feel better soon.

You're right... Many people do not understand the intensity of the disease. They don't get how pooping can be so bad... But, that's just over-simplifying the problem. You are terribly sick (getting better, it sounds!) and try not to let your friends get you down. Easier said than done -- I had similar issues with a couple friends.

Good luck... may the path get easier.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 9/25/2008 9:54 AM (GMT -7)   
Wow..you guys hit it right on target! It's amazing how you actually know what I'm going through!! So many people, friends, family, even doctors, don't really know how it is, unless you've actually lived it! It makes me so happy to know that I'm not alone with all these feelings and issues i have to go through daily! totally made me cry reading these replies because you are saying exactly what i've been trying to tell people all along..wow..amazing..thank you for your kind thoughts and prayers..it makes the world of a difference and i will keep everyone updated on this..its hard when sometimes all you want to do is talk about your problem and get fixed, but then you don't want to see or talk to anyone or even mention it! it was difficult for me to come back on here and tell my story..i just didnt know how people would respond and i didn't know if i was ready to start really talking about it..its exhausting to tell the story over and over and try to get people to understand where im coming from..but on here i think everyone totally gets it...thank you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
21 year old Female
*\o/* active cheerleader/cheer coach, love working out, and a full time college student *\o/*
Diagnosed with CD August 2008
On Prednisone 40mg/day for another 2 weeks and then weaning off :(, Lialda 2/2times day, canasa, maybe starting Remicade if pred doesn't work!


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/25/2008 10:14 AM (GMT -7)   
Hi I am so glad your home and will be hoping the Rem. works you have been threw a long struggle and I hope things improve now. Keep us updated how you are doing .lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 9/25/2008 11:51 AM (GMT -7)   
Welcome back Audrey...Sorry you had to go through all that. Hope you improve from here on. Dont try to get all your sanity back too quickly. It helps to be a little wacky with this DD...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


ImAud
Regular Member


Date Joined Jul 2008
Total Posts : 113
   Posted 9/25/2008 2:07 PM (GMT -7)   
lol thank u sniper...u r funny...ive never been that sane anyway :) ive always been a little quirky haha
 

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