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It has been 6 long years since I made the decision that would change my life (and the anatomy of my body) forever.
Looking back on the journey I’ve been through, I am overwhelmed with emotion. As I reminisce, I sit in pure amazement. Happiness for the hope three surgeries instilled in one woman. Gratitude for proper healthcare and timing. One lesson I’ve taken from living with an autoimmune disease: everything in it’s own time. Both good and bad, everything happens exactly when it’s meant to (happen).
I feel no need to rush through life, in the same way I felt no need to rush into my decision of having 3 major surgeries.
Here’s the common misconception: People who have surgery, embrace and/or promote surgical procedures. – Wrong. My decision to give up a life I once knew for a life unknown was just that – my decision. I encourage every single person I come into contact with (considering the route I took) to think / approach it the same.
I was terrified of surgery. It wasn’t the thought of “going under the knife” either. It was the idea of placing the entire trajectory of my life into one man’s hands. The idea of going in as one and coming out different. Broken. – At least that’s how I saw it (for a very long time). It was the thought of having a man. One person, go into my body and remove parts of me, with no guarantees at all.
When I had surgery, the internet wasn’t what it is today. There weren’t a lot of first hand experiences. I couldn’t find my tribe by following a simple hashtag. What is now saturated with patient stories and experiences was once bare. Bare of first hand knowledge. It was up to me to create the idea of what my outcome would look like. That scared me. I am 28. I was 22 / 23 making this decision. No mom or dad to consult. No trust fund. No backup plan. Just me.
I didn’t take it lightly. I did my research. – For months. I was referred in early 2014 and didn’t have my first consultation until almost November! * Listen to the funny story about me pushing back my consultation here * Again, I did not take it lightly. I don’t promote surgery. I promote doing what is best for you. And that is something only you can decide.
For those of you who don’t know, I had three surgeries. One to remove my colon (+ rectum and appendix), leaving me with a temporary Ostomy. The second surgery was the creation of my Jpouch, formed using the reservoir of my small intestine (shaping it to look similar to the letter J), leaving me with a new Ostomy, using a different portion of my intestine. The last and final surgery I had my Ostomy reversed and began to use my Jpouch full time. – I know. It’s a lot to take in. Especially for someone new to the Crohn’s / ulcerative colitis world. For starters just know, I am different. My internal anatomy is different from your own and although it’s helped me to live a life I would’ve never otherwise imagined, I still am autoimmune. I still can tire easily. I still have to work to stay hydrated. I still take a very expensive medication to allow my body to function the way it does. – And I’m okay with that.
I’d imagine you’re expecting some deep, profound lesson/s. Something you never would’ve thought of on your own. Truthfully, I may not have it for you. My life is simple. So are my lessons.
- Fear is not your enemy: I thought because I was scared of taking the risk, the risk was not for me. A lot of things in life will scare the hell out of you. – Not all of them, but a lot of them are usually worth it. This applies to every aspect of life. Live scared, but do it anyway.
- The best version of you is alive: This. In so many different ways.
- Your body should be your bestie: I fought my body for so long. Too long. I shamed it. I disrespected it. At one point, I had no relationship with it at all. – Which I realize, sounds crazy to say! Your body is your ally, not your enemy. In the words of a good friend of mine, “you’re not fighting your body, you’re fighting your disease.”
- Save a little bit of yourself for someone else: I always preach about putting self first. Making yourself priority. I stand by every word. I will never tell you to put yourself on the back burner, but what I will tell you is not to forget to share. The joy in life comes from connection. I spent so many years embarrassed and ashamed of my body and my condition, I think I lost sight of that. I hid the depths of my wounds and wouldn’t allow anyone to get too close. – But that’s not how life is meant to be spent. Cherish yourself. Allow someone else to do the same.
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