don't worry about
being nosey! this site has been such a help to me that i just want to be as much of a help to someone else. I had my surgery (ileostomy) on January 29th. I've been out of work since, and am preparing to go back next week. I will try to keep my story short, and if u have any other questions that I dont cover feel free to ask.
When i was diagnosed with crohns it was only in my small intestine, right where it connected to the large. I was pretty far gone and near death by the time i was diagnosed b/c of the bleeding. I was young and embarrassed and was hiding the bleeding from my mother ( I was only 14). So from that point i'd started prednisone (which made me crazy! and it was really hard going to highschool and dealing with its side effects). After that my crohns spread to my bottom. I started having perianal issues, fistulas, fissures, hemmorhoids (sp) and absesses. I used just about
all of the medications in my signature. By college I started remicade which worked well at first. Then i got a staph infection and ended up in the hospital for 2-3 weeks. So they took me off of it.
Recently id been having tons of perianal pain with the absesses. My GI finally referred me to a surgeon when i obtained an rv fistula. He said that the surgeon mayb able to plug it, or i may have to get an ileostomy. When i went to the surgeon he said plugging my fistulas (it turned out i had several "watering pot fistulas") was not an option b/c they kept recurring meaning there was constant active infection and he suggested an ileostomy. I put it off for an entire year, fighting it. I was put back on remicade in hopes that it would close my fistulas, but it was ineffective. I'd gotten several absesses lanced, my closet became a pharmacy as far as pain pills were concerned, and i was afraid of addiction so i often didnt take them and bared the pain. I'd even dropped to 101 lbs. I was hospitalized about
5-6 times within this period. Twice for pain management alone. I just stayed in the hospital on the morphine pump. My doc knew that i couldnt go on like this and said if i put it off much longer i was in danger of loosing my rectum.
Around Christmas time it got really really bad, as by this point i now have 5 seatons and still active draining. and was unable to control my rv fistula and had to wear depends! that was the worse. I spent 3 hours of my Christmas morning on the bathroom floor crying. Thats when i decided to go ahead and have the surgery. The main purpose of the surgery according to my surgeon is to give my bowels a rest. So that stool no longer passes thru my intestines, and therefore doesnt go thru my fistulas, and hopefully they can dry out and hopefully heal on theyr own, or at least b able to be plugged. Unfortunately, I was not put on humira until after the surgery, but i'm praying that it works. The doc is hoping theyll be a significant change within six months and so am i.
Having the bag, was a major adjustment, but i was out of pain almost immediately. the doc told me that the crohns was now in my colon. So I had none of my intestines removed., and i have a temp ileostomy. Since having it, i've been able to eat virtually whatever i want! So i've gained the weight rather quickly, and i'm happy about
it. i'm sure our situations rather different, but if there's n e thing else you want to know please be sure to shout me out! i'm more than happy to help. Also..sorry if i gave too much info lol. i just wanted you to know what brought me to my situation.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Worst year ever!
"For God has not given us the spirit of fear....."
Where does mine come from?!
Temp Ileostomy performed 1/29/08
Healingwell.com has been my Godsend...Thank you