I HAVE had crohns for ... well problems started when i was 16-17, they thought it was uc for yrs... had drs go back and forth for yrs over uc/cd... finally one test in gainsville,fla diagnosed as cd. (even tho they allmost killed me) i am now 41, was just reading ppl with problems over recall of meds (like oxy) etc.. need to tell them how to get it for free..... and if anyone with the disease has any questions/problems or just needs to chat, call me or email............. ive been thru it all... been a guinnea pig for yrs for meds that were not fda approved and are now. i was so bad i tried anything. ive had it all.. cleveland clinic pretty much *the one in ft.lauderdale) saved my life. i did have a bag, supposed to be 6 mo. but almost 14 months due to many unexpected suregeries and problems in between. like i said have been thru all/ ppl call me a walking pdr, cause i know more about rx's than the pharmacist *always made sure i knew whati was taken or given b4 i took it. and after almost 30 yrs you learn alot. if u need someone to chat with im here, no question is too small or stupid. i had someone that did that with me when i had my bag surgery and wouldnt look at it for weeks, the nurse had to do it all or actually my roomate which went thru it all. ive been from 70 pounds to 130.......... its a crazy horrible disease that makes you feel alienated from the world/ always when u are thinking about going somewhere you mentally map out every bathroom on the way etc.
when this hit, i knew where every bathroom in south fla was. in ny and new orleans they wont let u use theirs unless you buy something, you figure ways around that and they are ok about it......
almost died appx 7 times (that i know about) u have to be a aggresive patient,
if someone comes in to take blood or give meds thru ur central line, make sure they have gloves on. after one surgery, almost ready to go home in about 2 days doing great and took a hell of a turn. i had a nasty nurse that had a yeast infection and didnt wash her hands and touched my central line and it went directly to my heart. so sick next thing i knew i had about 10-15 drs and about 10 cdc ppl around my bed, pullling all meds, all my trial meds, pull central line etc they had nooooo idea.... 4 next few days cant even tell you how many, my mom had to move my legs in bed i was paralyzed from waist down, try to take me to bathroom catheter was taken out, pain pump already gone etc. when i told her i was dying, could feel myself dying, she went into the hallway and among some nasty words screamed "if they didnt put pain pump back, catheter back , more tests, find out what was wrong with me she was going to own this hospital and !@#$%^&*)_+*&^%$*)"(looked like 15 months pregnant at abt 80 lbs. kept giving liquids thruu iv but being paralyzed nothing worked, her and sis took me back forth to bathroom, then toilet by bed, nothing)
i was writhing in so much pain i just asked my mom to let me die. few days later the central line started growing the bacteria to show that it was a yeast infection in my blood. and yes i shoulda been dead. once the antibiotics were hung, pushed, piggy backed etc, i demanded a gyno to inspect myself. they didnt want to, but i demanded. i came up clean. OMG, I THINK BACK NOW AND WHY IN THE HELL DIDNT I SUE
ANYWAY, ...WAS THE ONE THAT WORKED BEST WITH NO LARGE INTESTINES BUT NONE OF THE PHARM. COULD GET IT, FIGURED SOMETHING WAS UP. OR IF U NEED ANYBODY TO CHAT WITH, HARD THING TO TALK TO WITH NORMAL PPL, EMAIL ME AND THEN MAYBE WE CAN SEE WHEN WE CAN CHAT. JUST WANT TO HELP ANYONE NOT GO THRU ALL IVE HAD TO.
HAVE A GOOD DAY, AND FORGET about THE BATHROOM FOR A LITTLE BIT. GOD BLESS YA!
Post Edited By Moderator (MMMNAVY) : 4/14/2009 5:17:53 AM (GMT-6)