Creating Change

Taking steps to get back into life

Creating change is not easy. It takes hard work and dedication. It takes a willingness to step outside of your comfort zone and do something different. It begins with recognizing you need to change something in your life because if you don’t, things will continue to stay the same.

After having dealt with the medical trauma of my ostomy not functioning, I realized mentally I was in a bad place. Throughout the trauma, I had lost myself. I was overwhelmed with grief and sadness. Now my ostomy was functioning after getting back from the Cleveland Clinic, but I didn’t feel any better mentally. I was consumed by all the worries I had when the ostomy was not functioning.

I knew I had to climb my way out of the depression and anxiety that had been consuming me for months. Shortly after we returned from Cleveland, I decided to set daily goals. I have a list of twelve goals I want to complete each day that have nothing to do with my healthcare, so I can focus on trying to live again.

At first, I didn’t notice any difference. I was still extremely anxious and depressed. I did the things because I had committed to the action. It has now been a little over a week, and I am finally noticing a difference. I still feel anxious and depressed, but not to the level I did when we first got home. Each day, I focus on taking one step forward. Any step forward is a positive step.

I then realized I needed to start focusing on the positive outcomes that came as a result of the revision of my stoma. I couldn’t see them at first. Yes, there was the obvious. I no longer had a tube in my stoma. I forgot how much having a tube in my stoma took from me—even such a simple thing as wearing pants. I couldn’t wear anything that might rub against my ostomy bag, as it would cause it to leak. One morning, I came downstairs in pants and was so excited, and my husband didn’t understand why. For so long, I wondered what I was going to do when fall came around if I couldn’t wear pants.

I also realized I needed to prioritize my health, no matter how inconvenient it was. For instance, I have been horrible about putting my vitamins in my TPN, but I need them. I also have to run IV fluids when I don’t feel like it if I have had days where I have had a big increase in my ostomy output. I have to be on top of taking my potassium pills. I also have to set up my TPN every day and ensure I am getting all my nutrients.

Finally, I realized how much I had been isolating myself. Before going out to Cleveland, Zach and I had discussed the fact that we needed more help. I realized that by being alone, I was sinking deeper and deeper into depression and anxiety. The entire time I have struggled with my chronic illness, Zach and I have never asked for help from friends and family except when I have been in Cleveland having surgery. We realized we could no longer fight this battle alone. Zach’s family was willing to come out right away, but then Cleveland came up so quickly.

Since being home, one of my daily goals is to text and call friends each day. I want to feel connected to people and know that I have support. I also want to be a support to others. I actually don’t like to talk about my chronic illness to my friends and family. I am trying not to focus on it because it upsets me. Obviously, it’s right there in my face every day, but I do try to avoid talking about it. I would rather connect with people about normal things.

Creating change is a process. It doesn’t happen overnight. It also doesn’t happen as quickly as we want it to. You have to learn to be patient with the process. I am not anywhere near where I want to be. I long to be back to the person I was before I had my surgery in April. I long for my chronic illness not to be the focus of my life. I want to be at peace.

Before I had the surgery that caused me to have a downward spiral with my health, I remember thinking how life was simple, and I loved the simplicity because I was happy. I want that back. I don’t want some type of extravagant lifestyle. I just want a simple life where I am able to do the things I enjoy and I am able to eat again. I want to be able to take a vacation or go to the movies and get a snack. I want my mind to let go of the medical trauma. I want some semblance of health.

I want to accept life with an ostomy and appreciate what it has done for me. Before surgery, it gave me my life back. I want that again. So I continue to wake up each day knowing it is one step forward, and that is all I can do.