Up until nine months ago I would have been an unlikely Ostomy Advocate. Don’t get me wrong, I am happy, funny, and outgoing. I am not shy and I genuinely like people. However, when it comes to my health I was a very private person. And sadly, I had it all wrong. I lead my life in a way to minimize the effect of my disease. I would go to my treatments, surgeries and checkups then get back to life as soon as possible. I was under the impression that the less I thought about Crohn’s Disease and the harder I pushed forward to be ‘normal’ the better. Past co workers would notice my occasional absence and ask about it. I always shrugged it off or made an excuse. Everyone knew I had special dietary needs and I let that be an umbrella answer for everything. I never told them what I was going through. I have friends that I have known for years and see several times a week who had no idea of the health issues I was living with. Some of my closest family members did not even know.
Why? Because to me, it was just my business. Everyone has something to deal with. No ones life is perfect. So I accepted that Crohn’s Disease must be my thing. There is a saying that goes: Everyone gets the short end of the stick sometimes. It’s not that you get the short end of the stick; it’s what you do with it. With my short end of the stick I strove to overcome and be normal. I also did not want to be labeled; ‘Too fragile, Debbie Downer, hypochondriac.’ I did not want the judging that comes along with having a sickness that can knock you out without warning. ‘She can’t be a good mother.’ ‘She is unreliable.’ ‘She is lazy, needs to eat better, take XYZ supplements, and exercise more.’ Peanut gallery information from people who have no idea what it is like to have Crohn’s Disease. Only when things got very bad (I was headed in for permanent Ileostomy surgery in a few days) did I let two friends in on what was up. ~It is fair to say they were quite surprised.~ Looking back I can see that up until I told my friends; I was protecting myself. Telling them was my first try at letting others know the truth and really showing what was going on. Thank God they were good about it and have never judged. It boosted my confidence that everything would be okay.
So why would someone so private decide to share? And not just share but create a blog, videos, and a face book page that anyone could read.I had a conversation with my surgeon.
When it came time for me to have my permanent Ileostomy, I knew I was in good hands. The surgery went smoothly, and I was able to be discharged early. I was pleased with my surgery result and went in for the usual post op check up. I was entirely thrilled to walk in feeling like a new woman. I was in incredible pain before the surgery and had already improved beyond all my expectations. I had a smile on my face and a spring in my step. Life was beautiful and I was living it up. My guts got a clean bill of health and I got the okay to resume regular life. All in all a very good check up. My surgeon and her resident looked at me and proclaimed that no one would ever guess that I had an Ostomy. How healthy I looked, and so full of life.
Then it was mentioned that some people choose not to have this surgery and end up with fatal results.
*record scratching in my brain*
Here I am walking on rainbows and beaming sunshine out my smile and could not imagine a better outcome, yet someone would choose NOT to feel this good? After a moment of talking about Ostomy Pride and how there is a movement against Ostomy shame that I was learning about, I left for my hour long car ride home.
In the hour it took to drive home I had made up my mind that my life had to change. And here’s why ~ My silence was hurting others.
My gut instinct was: I am not okay with people dying because they do not want a bag. This is the mantra that goes through my head and the reason for my openness. I missed so many opportunities to share, encourage, and help. Not anymore. Nope, not for me. I was going to share my head off and find every way to show how cool it is to be an Ostomate. Suddenly everything was so clear and much easier. The weight of hiding who I am and what I was going through dropped off.
Now, I get it. Surgeons don’t just take out colons and rectums for funzies. I had a long history of being very sick and had exhausted all viable efforts to be better. After all that effort and pain, why wouldn’t I take a stand for health and happiness? What would cause someone to say ‘no’ to an Ostomy? Is it Fear? Isolation? Vanity? I can’t do anything about vanity. But I can help with the fear and isolation. If I was willing to be a little uncomfortable and share my experience, perhaps others would not feel so alone. They could envision a bright future and dispel their fear. They could see that there is health and happiness on the other side of an Ostomy surgery. They could see that care of an Ostomy is easy. The world would know that Ostomates don’t stink or look funny. They would perhaps begin to see the humor in it, and the advantages of having an Ostomy. Maybe they would even look forward to activities they have been too sick to enjoy like swimming and camping. If I shared my experiences, others would see that ostomates are sexy, vibrant, and lovely. Just maybe I could start the world thinking……It was wrong of me to keep my struggle to myself. It was hard on my husband and on me. I did feel very alone and forced myself to be strong when I truly did not feel that way. I am the girl who can smile through the fire and I know if I can do that then I am also strong enough to help others through it. I have been through the maze of IBD Crohn’s tests, drugs, surgeries, success, failures, and self doubt. I have paid the price with pain. I know where the pit falls are and have inched my way through them. I know I can help others.
So this is why I advocate. I had it wrong for so long and know there is a better way. Pride and showing yourself for who you are in the brilliance that is YOU is far better than hiding and pretending to belong to another person’s normal. You don’t have to strive to be some unattainable ‘normal’ set for those without a chronic disease. Just be you ~ but spiced up with a little Ostomy Pride on the side.