More than 10 million people worldwide live with Crohn’s disease or ulcerative colitis. Known collectively as inflammatory bowel diseases (IBD), Crohn’s disease and ulcerative colitis are painful, medically incurable diseases that attack the digestive system, causing abdominal pain, persistent diarrhea, rectal bleeding, fever, weight loss, and more.
May 19 marks World IBD Day – a day in which people worldwide unite in the fight against Crohn’s and colitis and raise awareness of the debilitating nature of these chronic incurable digestive diseases.
Every patient experiences IBD differently. Location, symptoms, and severity all vary, as do the ways the disease can affect you outside of the gut. And all of this is underscored by the awareness, understanding, and care that is available where you live. Because of this, IBD is truly a disease that goes beyond borders – geographic, physical, and emotional.
Below a few patients share their experiences living with Crohn’s or colitis:
Shawn, Ulcerative Colitis
“[Since my surgery,] I now live a life I never knew was possible – a life with very little colitis symptoms. Through my experiences, my biggest lesson learned is to never give up. There were so many nights when I sat in bed and cried, on someone’s toilet crying, in the hospital crying. Wanting it all to be over, this life to be over. – But because I went through it and learned from it, I am a much stronger person.”
Mitchell, Crohn’s Disease
“During the period of diagnosis, I had gotten very sick. I had lost over 60 pounds, I was throwing up every time I ate, and I had to quit sports because I couldn’t hold my own. I was to the point where I wanted to give up. I basically cut myself off from the world around me; I didn’t attend many school events, and I only told a few people what was wrong with me.
It took me about a year to finally accept my diagnosis and move on with life. One night, I just got sick of living life in the dark and I told myself that this is the life that I was given and that I am going to try and make the biggest difference I can. My family and friends have helped me cope and have given me so much support; I will never be able to thank them enough.”
Rena, Ulcerative Colitis
“Eight years after my initial diagnosis I found myself with a permanent ostomy. Her name is Rita, and together we are learning how to regain our lives back. I am thankful that she allows me to be able to study, travel, swim and indulge in my passion for cooking. I chronicle my journey on my blog, and hope that my story can help to support and inspire other young ostomates like me. My journey with IBD has also led me on a path to pursue a degree in acupuncture, something that has brought an invigorated joy for learning and a passion to help other patients suffering from chronic diseases.”
Shaun, Indeterminate Colitis
“By the age of nine, my mom (who was a total rock star throughout the entire process I love you, mom) and doctors at Children’s Hospital in Boston decided to remove my colon. My body just couldn’t take the pain caused by my damaged, inflamed colon. At age 11 (or was it 12?), I had another surgery to remove a piece of my small intestine due to an intestinal blockage caused my scar tissue. This surgery, unfortunately, reduced my chances of having a j pouch a procedure my doctors said I was a strong candidate for at one point. Since the age of nine, I have been lucky enough to live free of any intestinal symptoms of IBD. My surgery was truly a life-saver.”
Help raise awareness on World IBD Day and tag #IBDBeyondBorders with the Crohn’s & Colitis Foundation. Visit www.crohnscolitisfoundation.org/WorldIBDDay to see all the ways you can get involved.
Rebecca Kaplan is the public affairs & social media manager for the Crohn’s & Colitis Foundation, the largest non-profit, voluntary, health organization dedicated to finding cures for inflammatory bowel diseases (IBD). The Foundation’s mission is to cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults who are affected by these diseases. The Foundation works to fulfill its mission by funding research; providing education 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.crohnscolitisfoundation.