Tuesday, February 7, 2017

Happy 4th Ostoversary to Me!

"Absolutely not going to happen" - that was my response just over 4 years ago when an ostomy nurse told me that most kids who end up having a surgery to create an ostomy end up not even thinking about the fact that they have a bag attached to them for collecting waste. There was just no way I could ever wrap my mind around the idea of what it would be like to have an ostomy bag, so thinking that I would come to not even think about it at all one day... it seemed impossible.

I have severe Crohn's Disease, a form of Inflammatory Bowel Disease (IBD) for which there is no current cure. At the time I needed to have ostomy surgery, I was only 6 months into my diagnosis and nothing the doctors threw at me was working. I was taking handfuls of pills all with the hope of achieving remission, but I would still be at the hospital weekly due to the heavy bleeding. The doctors thought that I had Ulcerative Colitis at first, another form of IBD, and since the inflammation was limited to my colon and rectum, they felt that having a total colectomy (removal of the colon) with an ileostomy (creation of an opening on the outside of the body using the ileum for waste disposal), would be my best chance for regaining my life outside the hospital. I was ready for the surgery but was it true that I would one day come to accept having an ostomy so completely that I would forget about it aside from times of emptying the contents or changing the bag?

I thought that I would be aware of my ostomy every second of every day. Aware of this bag of poop hanging off of me constantly. Aware of being different and at times looking different. Aware of other people's reactions. When people asked me about it, would they get grossed out and treat me different? Would people not want to be near me in case it suddenly exploded, or because they think I might smell (which I can tell you, other than when I have a "code brown accident" there is no smell)? I'm pretty sure that anyone my age who has had this surgery has had similar questions as well. Most kids would have had no idea what an ostomy was, and what it would mean for their day to day life. And not knowing creates fear and anxiety.

Today marks my 4 year "ostoversary". 4 years ago today, I had my colon removed and donated to research, and started pooping into a bag. I was scared being wheeled in to the operating room, my life was about to forever change. I wanted to feel better, to be back to doing the things I enjoyed, but I was nervous about what it would look and feel like afterwards.

The first time I saw my "stoma", the part of my insides now sewn to my outside, I was grossed out. Those first days and weeks, I worried a lot about the bag suddenly falling off, or stuff getting trapped in my new exit and causing new problems. I worried about it being touched in the cleaning process (it doesn't hurt), and dreaded having to do changes every few days for it.

I don't know if it happened over night, or if it were something in the making, but one day I realized that I wasn't actually thinking about it. When I think about how much time I would spend these days thinking about my ostomy, other than emptying it or changing the bag, I would say that I don't think about it. At all. My ostomy has become my normal, it's something that I will live with for the rest of my life, or until Crohn's is cured, which is ok with me. Yeah, it sucks to sometimes have these giant ostomy fails, like when my bag starts to leak and I have no place to go to change it, but I don't find that I'm worrying about those accidents that much anymore, because they just don't happen as often as you imagine when you first start thinking about it. In fact, most of my fears have been completely for nothing.

My ostomy is my bag of honor, it's a symbol of having gone through a very challenging time and having come out on the other side. It's a symbol of strength, of having overcome some of the hugest hurdles life can throw your way. My bag saved my life and taught me that sometimes you just need to believe that it's all going to turn out ok. Yes, it takes time to adjust, but that's true to most things in life. But life does go on, that I can promise you. My name is Jacob and I am an ostomate.