new to Crohn's Forum.
hey Crohn's Forum!
this is my first thread.. my partner found this place and suggested i have a peek and post my stories.
here is my story
i have Crohn's Disease, im 19, i was diagnosed when i was 7, i have apparently had Crohn's since i was born and i was misdiagnosed when i was 18 months old with some weird disease i can not pronounce. no one in my family has ever had crohns. or any disease for that matter. throughout my child hood, i had always had problems going to the toilet, and my family and i never really thought anything of it. when i was 7 i went through a series of tests for about 2 weeks, and they finally came to the conclusion that it was Crohns. i was given a few drugs to take. i dont really remmeber which ones. but phlagyl and salfasalazine were the main ones. i have been on so much mediaction including (i so cant spell haha): Phlagyl, imuran, ciprofloxin, salfasalazine etc etc. i am currently in remission (WOOOO!!!) and am taking 100mg of imuran a day, and on infliximab (1 dose every 2 months)
i have been on infliximab for about 2 years now, and its amazing! out of the 2 years or so, i have had about 2 doses that never really worked, and i was left lathargic, and lazy for 2 months.
i have had 2 major flare ups. one at christmas holidays 2008/2009 and 2009/2010.. the first one was really scary, i didnt know what was happening to me because my crohns was pretty calm and didnt cause me much distress. i spent 2 months in hospital, i lost 15kgs, got a gastric nasal tube stuck down my nose (they are the worst things imagiable!!!!!) i was really sick, and going through canulas like i did toilet paper. in my 2 month stay i counted how many, and i had a total of 47 canulas. 47!!!! i nearly went through one a day second time was the worst. i was so sick that i was offered to have a colostomy bag for 2 years to give my bum and bowels a rest. i balled my eyes out and so did my aprents, we were so scared that it had got this bad. i declinded the offer, and thats when i was put onto infliximab.
there are a few differnt stories and a lot more drama that i have lived through. but i thought i might start off with the basics
here is a few more things:
i am currently in remission
every 6-8 weeks i have an anal dilatiation (otherwise i cant poop hehe)
i have an anal fistula (with a seton tube in place)
i have had 3 absesses on my labias
i have 1 large skin tag on the edge of my anus
i have had no surgerys. and id like to keep it that way!
so any stories and feedback? id love to read.
thanks all :Karl:
hey Crohn's Forum!
this is my first thread.. my partner found this place and suggested i have a peek and post my stories.
here is my story
i have Crohn's Disease, im 19, i was diagnosed when i was 7, i have apparently had Crohn's since i was born and i was misdiagnosed when i was 18 months old with some weird disease i can not pronounce. no one in my family has ever had crohns. or any disease for that matter. throughout my child hood, i had always had problems going to the toilet, and my family and i never really thought anything of it. when i was 7 i went through a series of tests for about 2 weeks, and they finally came to the conclusion that it was Crohns. i was given a few drugs to take. i dont really remmeber which ones. but phlagyl and salfasalazine were the main ones. i have been on so much mediaction including (i so cant spell haha): Phlagyl, imuran, ciprofloxin, salfasalazine etc etc. i am currently in remission (WOOOO!!!
) and am taking 100mg of imuran a day, and on infliximab (1 dose every 2 months)i have been on infliximab for about 2 years now, and its amazing! out of the 2 years or so, i have had about 2 doses that never really worked, and i was left lathargic, and lazy for 2 months.
i have had 2 major flare ups. one at christmas holidays 2008/2009 and 2009/2010.. the first one was really scary, i didnt know what was happening to me because my crohns was pretty calm and didnt cause me much distress. i spent 2 months in hospital, i lost 15kgs, got a gastric nasal tube stuck down my nose (they are the worst things imagiable!!!!!) i was really sick, and going through canulas like i did toilet paper. in my 2 month stay i counted how many, and i had a total of 47 canulas. 47!!!! i nearly went through one a day
second time was the worst. i was so sick that i was offered to have a colostomy bag for 2 years to give my bum and bowels a rest. i balled my eyes out and so did my aprents, we were so scared that it had got this bad. i declinded the offer, and thats when i was put onto infliximab. there are a few differnt stories and a lot more drama that i have lived through. but i thought i might start off with the basics
here is a few more things:
i am currently in remission
every 6-8 weeks i have an anal dilatiation (otherwise i cant poop hehe)
i have an anal fistula (with a seton tube in place)
i have had 3 absesses on my labias
i have 1 large skin tag on the edge of my anus
i have had no surgerys. and id like to keep it that way!
so any stories and feedback? id love to read.
thanks all
:Karl:
