World Ostomy Day Celebrated on October 3 Brings Awareness to Patients Living with a Life Changing Ostomy
Crohn's disease and ulcerative colitis patients want others to understand that life-saving ostomy surgery doesn't represent an end point
NEW YORK, Oct. 5, 2015 /PRNewswire-USNewswire/ -- The lives of Crohn's disease and ulcerative colitis patients are often dotted with difficult procedures and surgeries, forever shaping their lives in ways they couldn't have imagined prior to a diagnosis. For some patients with Crohn's disease and ulcerative colitis, ostomy surgery may be performed when a patient's quality of life has been severely impacted despite medical treatment. Ostomy surgery can be life-saving for those individuals and often can course-correct patients with more severe cases of IBD.
Despite their improved quality of life, patients living with ostomies are sometimes looked down upon or treated differently within their communities. Participants in the Crohn's & Colitis Foundation of America's (CCFA) Take Steps program are using World Ostomy Day to help people understand that life with an ostomy is not an end point but rather, a new beginning.
Jennifer Sariego
At 27 years old, Jenn received her second surgery which resulted in her ostomy. "I did all the research I could possibly do but nothing could prepare me for the first time I looked down and saw my ostomy. I was upset and angry and wondered how I was going to enjoy a 'normal' life." Additional complications post-surgery made recovery difficult for her; it took months for Jenn to heal, both physically and emotionally. "Once I began to heal and adjust, I began to realize that my life was JUST beginning. As a person that LOVES to travel and go to NYC to see Broadway shows, there was no wondering 'am I going to make it to the bathroom?' 'Am I going to miss the show?' 'Will I make it on the plane?' Something I always wanted to do was go to London. Pre-ostomy, there was no way I could have managed that flight and that trip. At 30 years old, three years post-op, I went to London - BY MYSELF - and had THE BEST TIME."
Jenn's only regret is that she waited so long to have surgery. She was so moved by her new way of life, she was inspired to go back to school and become a nurse.
Jessica Jay
At age 14, Jessica was diagnosed with Crohn's disease. Her first surgery came at age 16 and then her second at age 24, a total colectomy with permanent end ileostomy. Having Crohn's disease turned Jessica into the strong, independent, caring mother she is today and life hasn't stopped just because of her surgery.
"For so long, I looked at surgery as allowing my disease to win. This was the wrong way of looking at it. I was taking control of my life and body, and was showing this terrible disease who was boss. Being diagnosed with Crohn's disease was the time to mourn; having my colon removed and living with an ileostomy was the time to celebrate. I call my stoma, Mona. I owe so much to her. She gave me my health and life back. I was able to go on and have an easy and healthy pregnancy- I gave birth to my son almost one year ago. With the state my health was in pre-ostomy, pregnancy never would have happened. My only regret is I wish I would have not been so scared to lose my colon and live with an ostomy. I wish I would have done it sooner and not missed out on so much of my life. Since I was diagnosed with Crohn's disease, Mona the stoma has been the best thing to happen to me."
Becca Foskuhl
Becca was diagnosed with Crohn's disease at age 16 and has experienced a ruptured appendix, peritonitis, a perforated colon, fistulas, abscesses, strictures, and five total hospital stays, including three abdominal surgeries on her path to an ileostomy just over a year ago.
"After receiving my ileostomy in January 2014, I was finally in remission for the first time in my life. Since then, I have been in awe of what it's like to be living with Crohn's disease as an afterthought, and not a constant burden weighing on my mind. I was able to be completely present for my beautiful wedding day in November, and was able to enjoy experiencing active adventures on my honeymoon! I am forever grateful for this new take on life that my ileostomy has given me. While I know that there is still a chance that my Crohn's disease will take over again, I am enjoying living life happily and healthfully for the first time in over a decade. Crohn's disease will not hinder my spirit, my sense of humor, or my hope for continued health. I know that there are future battles to be won until a cure is found. But for now, I am going to savor and thrive in my health and happiness."
Keagan Lynggard
Diagnosed at age 15, Keagan began having symptoms and went undiagnosed for several years, causing expansive disease. She received her first ostomy surgery just two weeks after being diagnosed, and was in recovery at the hospital for eight months. Within the first year, she underwent seven abdominal surgeries, all resulting in either a colostomy or ileostomy.
"Living with Crohn's disease and having ostomy surgery affects a person physically, emotionally, and socially. I was overwhelmed with fear and isolated by my own insecurities. I've come a very long way since the first few years after my diagnosis and surgeries, and I want to encourage others to not allow their insecurities or life circumstances hinder their ability to enjoy life and fulfill their dreams. Over the years, I reaffirmed that everything really does happen for a reason, and that what may seem like the worst-case scenario can be transformed into something pretty incredible. The reality is, although it may feel like it at times, my life is so much more than ongoing medical babble."
For more information about Take Steps, CCFA's national walk program, visit www.cctakesteps.org
About Crohn's Disease and Ulcerative Colitis
Known collectively as inflammatory bowel diseases (IBD), Crohn's disease and ulcerative colitis affects 1 in 200 people. They are painful, medically incurable diseases that attack the digestive system. Crohn's disease may attack anywhere along the digestive tract, while ulcerative colitis inflames only the large intestine (colon). Symptoms may include abdominal pain, persistent diarrhea, rectal bleeding, fever and weight loss. Many patients require numerous hospitalizations and surgery. Most people develop the diseases between the ages of 15 and 35; however the incidence is increasing in children.
About Take Steps
Take Steps is the Crohn's & Colitis Foundation of America's national walk program. These walks raise funds for critical research and increase awareness of Crohn's disease and ulcerative colitis, painful and unpredictable digestive diseases. Thousands of people will gather this year in more than 140 communities across the country. Our walks are family friendly festivals with activities for everyone including games, music, and great food. Funds raised through Take Steps will help transform the lives of those impacted by these diseases, and support CCFA's critical research, education, and patient support programs. Walk with us today: get started atwww.cctakesteps.org.
About the Crohn's & Colitis Foundation of America
The Crohn's & Colitis Foundation of America (CCFA) is the largest voluntary non-profit health organization dedicated to finding cures for Inflammatory Bowel Diseases (IBD). CCFA's mission is to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults who suffer from these diseases. The Foundation works to fulfill its mission by funding research, providing educational resources for patients and their families, medical professionals, and the public, and furnishing supportive services for those afflicted with IBD. For more information, visit www.ccfa.org, call 888-694-8872, join us on Facebook at www.facebook.com/ccfafb and www.facebook.com/ccfatakesteps, or follow CCFA and Take Steps on Twitter at www.twitter.com/ccfa.
CONTACT: Crystal Ware, 1-646-477-2740 , [email protected]
Photo - http://photos.prnewswire.com/prnh/20151005/273842
SOURCE Crohn's & Colitis Foundation of America
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