Today is World Ostomy Day and for the first time, I am not avoiding the internet or trying my best not to use the word “ostomate.” Today, I am embracing this day and hope to use it as a time to empower, educate and increase awareness for those of us living with any kind of ostomy. I want to take the shame out of it, and share some of my experiences since I had an ileostomy for three years when I was 16-19, and now have had this last one for a year.
During those years in high school, I only told my best friend about it. I usually just told guys or friends if they happened to see it while I was changing or something that it was a bandage and luckily for me, no one thought to question it. After all, why would anyone assume I had one? And, I am pretty sure most people don’t even know what they are- which was exactly how I wanted it at that time. However, even knowing all of this, I was still very sensitive about it. Whenever I felt like someone was staring at me, my immediate thought was that they knew I had a bag. I found it disgusting and gross. At that time I could never imagine ever getting to the point that I am at today. It was just something I would never talk about for fear that no one would understand and people would look at me differently.
A number of years later (too difficult to keep track since I had other surgeries in between these times), I am “out” about my ileostomy. I am not going to take a picture and post it, I am not going to post pictures of myself in a sports bra so you all can see the bag because well, I don’t feel comfortable doing that for starters. And secondly, you all can google it and see the imagery if you like. But, what I hope to do is to reach those who are still embarrassed and ashamed to talk about it and share what their body has been through. I have been there…hiding and spending all of my energy making sure no one knew what was on my stomach. I have been there and felt all of the pain, anger and anxiety that is associated with keeping this type of a secret. I know what it is like to feel ashamed of your body…to feel like you have been given this alternate way of going to the bathroom that you never asked for or wanted. I had five kock pouch surgeries in an effort to avoid this ileostomy.
So, whatever your situation is, I UNDERSTAND AND YOU ARE NOT ALONE! Let me say this again- you are not alone! Most of us don’t come home from the hospital after surgery and immediately start telling everyone the details. Most of us don’t feel comfortable initially, and for some of us ever, to share it with those people who are out of our immediate family or friend circle. That is OKAY. For me, I had to go through the grieving stages and am still going through them. Get angry. Cry. Reflect back on how life used to be. Mourn the loss of this semblance of normalcy. Avoid talking about it or doing the bare minimum when it comes to looking at it. Do whatever you need to do for you. There is no right or wrong way towards an eventual path of acceptance which is the hope. It was my wish for so many years and I never thought I would really get there to be very honest. But somehow, I have so even if you are reading this and thinking “yeah great for her but there is no possible way I will ever be open about this”…I am here to tell you that I have said and thought that exact same thing for many years. I am living proof that with time, you might feel differently. Never say never
Reach out and talk about your feelings to a trusted family member, friend, therapist or message me! I was actually serious about that last one. Just don’t keep it all in the best you can. Write things down in a journal. Just get it out because I am telling you that while it is perfectly fine and normal to go through all of the stages of grieving while working towards adjusting to your new body, it will eat you up inside if you do not find some type of outlet.
Most of us have been given an ostomy because it was the only way for us to be healthier and live a more normal life. For whatever the reason, other options did not work for us and this is usually a last resort for people. Today, even if you hate the bag as much as I did (and still do often), embrace it. Try to look at it, just for today, as something that you have to help you become healthier, to allow you to become more stable so that someday if it is feasible, you will be a candidate for something else. Just for today, try to think of the positives that having a bag on your stomach has given you. For me, it has given me my life back. It has taken away a lot of unpredictability in my life. It has *knock on wood* taken me off of the surgical roller coaster I was on.
Just for today, let us all celebrate World Ostomy Day and share your story if you feel emotionally ready to do so. It is time for the ones who can to speak up and stand up for the silent majority to tell the world that how we go to the bathroom has nothing to do with the person we are. It has nothing to do with anything that is significant. Today, we try to educate others and take the stigma out of being an ostomate.
Just for today…