WEGO Health would like to introduce you to our new monthly blogger, Sharon Coyle-Saeed. Sharon is an IBD health activist. Keep reading to learn more about Sharon and to learn more about what is to come from her. Thank you Sharon!
I just wanted to introduce myself. First off, I would like to thank the WEGO Health community for giving this opportunity to reach out to all of you! My name is Sharon Coyle-Saeed, and I am the CEO/Founder of ibdjourneys. ibdjourneys (yes all small caps), is a support group for those inflicted with Inflammatory Bowel Disease and a place for caregivers. IBD (the two major ones are Crohn’s Disease and ulcerative colitis) is an autoimmune disease that attacks the digestive tract and may also cause extra intestinal manifestations.
I was diagnosed with ulcerative colitis in September of 1990. As I packed my bag with resumes, headshots, tapping shoes and sheet music, I headed into New York City to try my luck at making it as a working singer, actor and dancer. It was my dream, since the tender age of 7 to grace the Broadway stages. I exhausted my rounds on the New Jersey stages and was ready for Times Square. All of those dreams were dashed in an instant. As I headed out the door, I was struck with an “intestinal virus”, which never quite left. A month later, I was dehydrated and 20 pounds thinner. I was put through the ringer of tests and in walked the same Gastroenterologist I use today, who announced, “You have a form of Inflammatory Bowel Disease called ulcerative colitis.” These words that would become part of my everyday vocabulary, were so foreign to me then.
From that day in 1990 up until 1992, I was placed on every medical treatment known for IBD in those days. Nothing worked. I was rushed up to Mount Sinai Medical Center in NYC for an operation which was not an option. As my large intestine was ready to burst from perforation, I was wheeled into a surgical procedure called a total proctocolectomy(removal of my entire colon), with J-Pouch formation(bringing down the small intestine as an anastomosis) and a temporary loop ileostomy. After that surgery, I was in a medical coma for about a week’s time and when I came out, my view on the world was somehow changed, but I was not ready to receive the message completely. By the end of that year, my stoma was reversed and since my mother worked at a local college, and I was convalescing, I decided to take some courses before heading back out to be a Broadway star.
On the first day of school, I met the man I would eventually marry and have two children with. My career path took a turn from actress to human resource/store manager of high end retail stores. After having my children through C-section and one was a very challenging birth which was a delivery with placenta abruption, my peritoneum was now a belly filled with concrete adhesions. In 2009, I was diagnosed with peritoneal inclusion cysts. Two environments have to be present in order for these cysts to form—active ovaries and adhesions. I had them both. These cysts(2 in total) grew to grapefruit size and in 2011, more specifically June 6, 2011, was my “doomsday”. I headed into a surgery which was supposed to be a ‘simple’ surgery….. it was anything but that.
After that surgery, I was rushed back into the operating room a month later, to alleviate strictures that had formed. From 2011 till this very year of 2015, I have been an inpatient for 50-60% of the year. In fact, I am an inpatient right now while writing this blogpost.
In these past 4 years, I have met many wonderful warriors of not only IBD fighters, but many challenging diseases. I have been asked on many an occasion, “How do you do it? How do you get through long hospital stays? How do you maintain relations with friends, family, your spouse and your kids? How do you remain so positive? “
This blogspot is not only going to be about my journey. I would like to highlight how everyone else gets through their day! As a featured blog writer, I am going to explore, “How to cope and live purposefully with a chronic (and sometimes serious) disease.” I will share some of my favorite tips and coping mechanisms and can’t wait to read and hear yours!
Next month, I will focus on pampering! Pampering is indulging in our comfort and needs and YES! This is a necessity when we are dealing with a chronic disease! Get rid of the guilt! You are worth it! I will share some of my favorite pampering indulgences and highlight others that are combatting an illness as well. Just in time for the holidays when we need to take some extra TLC out for ourselves!
Sharon Coyle- Saeed: Health Activist, CEO/Founder of ibdjourneys:
Sharon Coyle-Saeed was diagnosed with ulcerative colitis in 1990. She has three Associate degrees in Psychology, World Language, and Theater. Sharon’s Bachelors is in Journalism & Mass Media with a Middle Eastern Studies minor from Rutgers University. She is currently a graduate student of Clinical Social Work at Rutgers University with a focus on Aging and Health. Sharon just completed an internship at Robert Wood Johnson/The Steeplechase Cancer Center. She is a Reiki Master Practitioner, a freelance reporter for Gannett NJ, an IET Intermediate practitioner and holds certifications in EFT (Level One), Angel Card Reading, Angel Realm Reader and Aromatherapy (Stress Management, Essentials and First Aid). To help others is her sole and soul’s desire.