I have had Crohn's Colitis since I was about 10- I was dx at 18 in 2002. I very quickly went from Asacol being enough to having to try Remicade. The remi helped a lot until I developed an allergy on my third infusion. I tried Humira but it had no effect and finally, I was on Cimzia for the last few months before surgery. I thought it was helping some, but I ended up with multiple fistulae and setons and a major stricture. It got to the point with the stricture that I was taking triple+ doses of Miralax daily just to be able to go. As a result of the stricture, I was having new fistulae all the time and also had severe edema in places you really don’t want edema.
This was when I cried and begged the surgeon to help me out, there had to be something she could do…I had went to a CCFA conference on Women w/ IBD literally only weeks after being diagnosed and they had three women who had had the ostomies installed (seems like the best word to describe it to me!) and all of those women were so happy they did it. Their lives were 1020202393949% better. When I relayed this story to the surgeon she knew that I was serious and we scheduled my operation that day. On March 9, 2010 I had a total proctectomy with end colostomy.
The surgery was very difficult, the surgeon told me that the disease was just horrible; it would have started to invade my other systems soon. She said we did the surgery just it time because the inflammation from my intestines was just everywhere and spreading. Now, she says my insides are "pristine" I couldn't believe it- of course there's always the chance the Crohn's could show up elsewhere and I'll have to have an ileo or something but NOTHING will ever be as bad as the perianal manifestations of the CD I had before.
Now? My life is so much better. After having been in a flare for the past 3 years, I forgot what it was like to feel good. I get up in the morning and I'm awake, not exhausted. I only need to sleep for 6-7 hours a night, not 10 like before. It has changed my life- all for the better. Surgery is always a scary prospect, but this is something you should truly think about- it could change your life too!
Please feel free to ask me any questions!