Eva and Erin,
I can completely relate to what both of you are going through. I was diagnosed with Crohn's when I was 28 and was told that it was so bad that I was going to have to have my colon removed. Well, my response to that was, "No way!!" Since I refused surgery, I went on a 7 year roller coaster ride of feeling sick, taking meds, feeling better, taking meds, feeling sick, taking meds, feeling better, taking meds, until the meds stopped working and then all I felt was sick.
My colon kept getting worse, so I had it bypassed with a temporary ileostomy to give it a chance to rest and possibly heal. I agreed to the surgery, only because I knew it was temporary and had every intention of having it reversed after 6 months.
Well, much to my surprise, I really liked the freedom the ileostomy gave me. I'll never forget the first time I went clothes shopping and didn't have to bee-line it to the bathroom several times while I was there. I could grocery shop, too, without having the "urge" several times. I could sleep through the night, without having to get up every hour to go to the bathroom. It was wonderful!! The bag was so well hidden under my clothes that people didn't even notice it was there. I was shocked that I actually LIKED it!!
Well, 8 months into letting my colon heal, it started bleeding nonstop for several days. I cried, because I knew that it had not healed and was worse than ever. I knew that I had to make the dreaded decision that I had been avoiding, so I weighed the pros and the cons to surgery. The biggest pro was that by removing my diseased colon and rectum, there was no way that I was going to end up with cancer there. That was it for me. I made up my mind that I was going to have surgery and get on with my life.
Well, that was a year ago, and ladies, it was the best decision I've ever made. I have been disease free, pain free, and medicine free since surgery and have not felt this good since before I was diagnosed with that dreadful disease. I am blown away by how sick I was without even realizing it.
Erin, my advice to you is, if you're ready to have the surgery, please don't wait several years. You are young, and the recovery is quick. I had my colon and rectum removed and was out driving and grocery shopping 2 weeks after surgery!! The pain meds they give you are so good that you really don't feel much pain.
I just wanted to let you know that you are not alone, and there is a bright, shining light at the end of this dark tunnel, and it is your health. You are going to get good health back, and that is going to change your life in ways that you can't even imagine. I'm so glad you found us here, and we'll be there for you every step of the way encouraging you and answering any questions you may have.