Two weeks from this very evening I will be lying in a hospital bed. I will be heavily medicated, probably incoherent and colonless. Two weeks from tonight, I will have a temporary ostomy. Two weeks from tonight, my life will be changed forever.
This disease has quite literally kicked my butt. I have tried medications. I have tried diet changes. I have tried alternative treatments. I have prayed, cried, screamed, felt like giving up and found myself wishing I had a different life.
Today I went in for my “pre-testing” for surgery. It was not as bad as I thought it would be. Just a few blood samples and a cup of urine after speaking with a nurse about my medical history. I thought this step might make it more real. It didn’t.
I’ve been on a roller coaster of Prednisone since April of last year. Taking 40mg and slowly tapering down to 10mg only to have my flare come back with a vengeance. I no longer know what healthy feels like. I have had my good days. But I have not felt truly “healthy” in years.
I have talked with a few people who have had the Ileal Pouch Anal Anastomosis surgery. All of them have said it was the best decision they had ever made. There are risks that come with it all, but I think that those risks are worth taking at this point just for a chance at something that resembles a “normal” life.
Just last month I had an idea. If this disease was going to put me through all this garbage, I have to make it worthwhile. I had to make a difference. I started brainstorming and finally came up with the idea for Colitis Ninja (a mix between my hatred for this stupid disease and my passion for karate!). My husband encouraged me, one thing led to another and now here I am.
I hope that I can reach at least ONE person out there who is hurting. Someone struggling. I hope that I am able to be there for someone and let them know that it is going to be ok. You are not alone. I want you to know that you are in my prayers daily and I totally get how you feel. Don’t give up. Hold on to hope. FIGHT.
So there you go. My ramblings for the evening. I have so many ideas in mind for this blog. I will be posting some new stuff in a matter of days. Until then, try to remain positive and remember that you are in my prayers.
