Happy World Ostomy Day! When I started this blog, I made a pact with myself that I would always be honest and real with all of you. Nothing made me feel more alone than listening or reading about how gung ho people were about their life, their illness, or their ostomy. I find that while some of the times, a person may truly be in love with how their life or health situation turned out, a large majority of the time the person is leaving a tremendous amount out of the story.
I find this to be especially true for those people who have undergone ostomy surgery. I wrote a post yesterday here where I talked about how I was feeling about having my second ileostomy. I am now two years into it and I thought it was important (and therapeutic) to lay some of my cards on the table yesterday, so that it wouldn’t intrude on what this day was supposed to be about.
While I am incredibly glad I did that, a fallacy I had when writing the post was that World Ostomy Day isn’t “supposed” to be about anything in particular. It is simply about raising awareness, educating the public, sharing stories, coming together to talk about experiences and allow others to know they aren’t alone and that we are stronger as one community or unit. World Ostomy Day is hopefully about reaching a wide range of people including patients who have had ostomies for years, new ostomates, people who are facing ostomy surgery, caregivers, potential caregivers of ostomates, friends, healthcare professionals, as well as people who have no personal relationship to this type of medical procedure.
Over the last year and a half of being engrossed in the IBD/ostomy community, I have met a lot of people; some that I was fortunate enough to meet in person but many that I have a close relationship with online. While most of those people who went through surgery to have an ostomy are happy they did and wish they did it sooner, I have noticed a pattern. About 99percent of those people did not wake up from surgery happy they had a bag on their stomach. Most people did not go into surgery looking forward to this new chapter of their life. Sure, there are exceptions but for the most part, any person that you meet who has an ostomy, and is living life happily, is out and about, partaking in athletic events, is in a wonderful relationship, is back at work or school, and seems to generally have accepted their new body did not get to that point overnight.
Why am I talking about this today? Because before I was so entrenched in the advocacy world and was able to connect with patients, I would have had my doubts. When I was a teenager with an ostomy, I felt so incredibly alone. I would have my doctor and parents tell me things like this all of the time that I knew were false but didn’t have anything to back my instincts up with. As far as I think other people were concerned, there was something wrong with me for not being able to “get over it” and accept that this was the life that was thrust upon me.
It was only until I started connecting with others that I realize that the people who wake up from surgery and are gung ho about having an ostomy, are the weird ones. There is nothing wrong with you if you feel angry, frustrated, depressed, anxious, hopeless, or any of the other trillion emotions that come with this type of surgery. There is a grieving period involved. Some people need to mourn the loss of who they were and what their body used to be like.
That is okay. Please, please, please know and understand that it is okay to feel these emotions. It is good, in fact.
You don’t know what goes on that led people to accept having an ostomy. I fought for three years as a teenager to get rid of mine, then another six until I eventually had no choice anymore. And it was the best thing I could have ever done for myself. But I had to come to that realization on my own.
I know married men who have gone through cancer and still couldn’t give into the idea of life as an ostomate.
Men and women, of all ages, fight against having an ostomy. There is an enormous stigma attached to it. After all, why would anyone want a bag attached to them that collects waste? That isn’t attractive. That isn’t society’s definition of normal.
But what so many of us fail to grasp is that those of us who have either chosen to have an ostomy instead of risking another failed surgery attempt, or ostomates who have one because it is their only option end up living life a lot more normally than they did pre-bag. An ostomy isn’t elective surgery so while there are definitely cases where people are brought in on an emergency basis either because of an accident or their intestines rupturing, ostomies do save so many lives. They do improve quality of life whether I really want to admit that or not.
Having an ostomy has saved my life. It isn’t ideal. It isn’t what I ever wanted for my life. I spent such a long time fighting it and if I could get rid of it and knew once and for all I would be able to be healthy, I would. Everyone has something they deal with. I happen to have this and had I not been a teenager when I had my first ostomy, maybe I would have been in a much better place today. Who knows….