I think one of the most important ways to live a happy and full life as an ostomate, or as a human in general, is to fully accept yourself. What I mean by this is to be able to look at yourself in the mirror and love the person looking back at you. I’d like to say I am a positive, open-minded individual, but I honestly can tell you that I have not fully accepted having a bag on my stomach permanently. I have come far in my four and a half years and by just writing and sharing this with you I have taken a step up from where I was before. I look at myself differently and have felt a sense of support and love for myself that I never thought I could have. This bag on my body is permanent, but I will not let it define who I am as a person nor let it hold me back from what I want to do with the rest of my life.
So, two weeks ago after coming home from the prolapse surgery, I was in pain and feeling discouraged once again, but the feeling didn’t last long since I had school to keep my mind off things. I did go home often to see my mom, but I also was continuing to stay active in my sorority. I kept in contact with my doctor, Dr. Dubinsky, and we began discussing the process of starting Remicade, an IV medication I would go to the hospital to get once a month. I started seeing Dr. Dubinsky at the beginning of June 2014. She laid out my plan of action for the upcoming months. Looking back on what has happened to me and how things were handled when I first moved to Southern California with my health, I can’t help but smile and be thankful. When I first saw Dr. Dubinsky she knew right away what had to be done, and she acted quickly. I say with upmost confidence that she saved my life that day. Dr. Marla Dubinsky saved my life and I have nothing but respect and full gratitude towards her. She helped me become the person I was meant to be, and I want you as a patient, a parent, or a supporter to see that in your physician. No matter what, they are there to help you and if you’re lucky enough to have such a caring doctor like I have then you’ll remember and be grateful for them for the rest of your life.
We discussed starting Remicade and Imuran at the end of the month and that came to be the most successful drug for me. I went in to the infusion room once a month and within days I would feel great! It was my own personal miracle drug that kept me healthy and living a normal life.
Then what I thought would never happen again, did. My stoma had prolapsed. Pain had struck, and I found myself in the car on my way to Cedars with my mom by my side. It was now September 29th. I had been admitted into the hospital and Dr. Fleshner did an ileostomy revision and small bowel resection. The surgery was successful with no complications and I was out in four days.
Looking back on it all, most of these surgeries are a blur, but I do remember something that changed my stay in the hospital. When I found out I was having this surgery I called my Dad. The same night he jumped in his car and drove 8 hours to get to me and I remember waking up with him in the room holding my hand. I will never forget what my parents sacrificed to be there with me and how much they showed me I wasn’t alone or was never going to be alone. I wouldn’t let any of the nurses help me out of my bed. It’s kind of funny to think about it now. My dad had a system of getting me out of bed and it was the only way to keep me from being in pain. He was the one to walk me up and down the halls holding my IV pole and my hand. I would be nowhere without the support from my parents and my brother.
Now I always tell you to think about things as you read my blog. This is to help you relate and find things we may have in common with our care that will hopefully give you help or hope in the future. If you are a parent, friend, caregiver, supporter, or someone looking to be educated, you too can find things to help others just like me. Think about how the support you have from your doctor, or parent, or child helps you and maybe thank them and smile knowing you have them in your life. I know I do every day!