I was given a second chance to live life again.
When I was first told I would undergo three major surgeries, I immediately felt a sense of loneliness and sadness. After wiping my tears away, I eagerly ran to the internet to research all about what an ileostomy and ostomy was. As someone who battled Ulcerative Colitis for almost nine years, I never heard of these terms until almost two years ago. I found a world of us out there, and to my surprise, I was not alone! I made an oath that I would become an advocate and spread awareness of this silent, invisible disease. I switched gears and dedicated my public Instagram to my journey. I have met so many ostomy/IBD warriors and quickly connected to them for support. Along my journey, I met some incredible people and learned so much from their stories which has impacted mine tremendously. I met and started following Kristen (Kristen Chronicles) on Instagram. Her story, courage, and strength were so inspirational. I started to reach out to her and one day noticed that she was part of a program called Patient Coach. I immediately googled them and saw the amazing work they do for the ostomy community. I loved everything they stood for as it aligned perfectly with what I needed and what I advocated for. Without hesitation, I followed their account and one day noticed they were looking for more PC’s. I am so excited to be part of this company and work alongside amazing people who are changing the taboos of IBD/ostomy.
Being a Patient Coach isn’t an opportunity I take for granted. I do not look at this as a job but rather a privilege to give back to my community that truly impacted my journey in so many ways. I have so much to learn from my fellow employees who I feel is now my extended family in just a short amount of time. I am excited to embark on this path and to continue to do what I love most: shedding awareness, advocating, & helping those in need. Not only am I giving back but in return I am receiving support from each person I come across. I have so much to gain from this community and 11 Health. To learn how to make a difference in the world of ostomates and to gain knowledge on how to achieve it. My goal is to remind the world, through being a PC, how incredible we are!
In January of 2010, just a year after losing my father, I faced another major obstacle in my life. I was diagnosed with Ulcerative Colitis which is inflammation in my large intestine (AKA the colon). Yet again, I saw my world crashing right in front of my eyes as I tried to wrap my head around this disease that was so foreign to me. I had so many mixed emotions. I was mainly angry, sad, confused, and depressed. A year and five doctors later, I was finally in remission. I was placed on oral medications as well as an enema daily. I never pictured my life like this but, I had to adjust as this would be my new normal. With the help of my amazing doctor and the support of my loving family, I was able to stay in remission for five solid years! UC was just another part of me, but it wasn’t all of me. In 2016 (a year into my marriage), the monster returned. I was devastated as I had to face the awful symptoms that accompanies this disease. The feeling of loneliness quickly came back into my life, and I once again felt a sense of despair. I began IV treatment, and thankfully, I responded quickly to it. A little shy of a year is when my worst nightmare came true again. I stop responding to the IV as well as all FDA approved medications that were out on the market for UC.
After exhausting all medications, I was told I needed to undergo surgery or else I could possibly get cancer. How did my life turn into shambles? Nothing made sense, and I felt as though the medical world had failed me. I never knew surgery was a possibility until late September of 2017 when I met my surgeon, Dr. Remzi, at NYU. That is when I learned I had no choice, and I needed to have this surgery ASAP. On October 3rd, 2017, I underwent my first of three surgeries. I had an ileostomy. He removed my entire colon, and I received an ostomy bag. On May 1st, 2018, I had my second surgery which was a loop ileostomy. My anus was removed, created my J-Pouch, and kept my stoma. I encountered a lot of complications and had to be admitted to the hospital twice. Due to so much weight loss, I had to get a PICC line to receive TPN (nutrients for my body). This phase of recovery really tested my strength, and I faced major depression and anxiety. I saw my body breaking down on me. I lost all hope. Finally, after three months, I had my last and final surgery on August 9th where I had my reversal (AKA take down). I am now a proud member of the J-Pouch world. I’m happy to say that I am six months in and finally have adjusted to life!