ellen J. Scherl, md
Rosenthal Humanitarian Award
William K. Lanier
Patient Advocate of the Year
Will, a fitness trainer, doesn’t look the part of a “sick” person. Hidden underneath his fit exterior lies the effects of a disease that plagued his body for more than a decade. In 2005, Will was diagnosed with ulcerative colitis, a debilitating digestive disease that causes abdominal pain, persistent diarrhea, rectal bleeding, fever, weight loss, and much more.
Will spent a decade battling his disease. Doctor visits, in-office exams, sigmoidoscopies, colonoscopies, medications, and more were part of his regular routine. In 2014, his disease flares began to get worse. He sought the opinion of a new doctor who performed another colonoscopy. Will expected to hear that his disease was active and his treatment regiment would need to be changed; what he didn’t expect to hear was that he had colon cancer at 28 years old.
His doctor found a colonic adenocarcinoma, a type of cancer that develops in the intestinal epithelial cells that line the inside of the colon and/or rectum. Patients living with Crohn’s disease and ulcerative colitis may experience serious complications, including colorectal cancer (CRC). CRC can occur anywhere in the large intestine, and is the second-leading cause of cancer-related deaths in the United States. Although this statistic is scary, it’s important to know that CRC is preventable and highly treatable in the early stages.
Will was lucky that they found the tumor when they did- it was early enough that he was able to have the tumor surgically removed, and did not require chemotherapy. He ended up having three surgeries – one to remove his colon and create an ileostomy, a second one to create an ileal pouch-anal anastomosis (also known as a j-pouch), and a third takedown surgery to reverse the ileostomy.
Disease duration and the extent of the colon involved are two key risk factors that play into the development of CRC among IBD patients. The risk for CRC does not start increasing until 8 to 10 years after you develop ulcerative colitis or Crohn’s disease involving the colon. People whose entire colon is involved have the greatest risk, and those with inflammation only in the rectum have the least risk.
Almost two years after his last surgery, Will’s cancer-free. His advice to patients experiencing any complications of IBD? Allow yourself to feel emotions.
“This has got to be the biggest lesson I learned. You cannot bury your emotions or bottle them up. Feel them. Embrace them. If you’re sad…be sad. If you’re mad…holler about it. In the end, you’ll come to realize that negative feelings and emotions are a waste of your time and you will begin to see the good in all things that happen to you.”
I was diagnosed with Crohn’s disease at nine years-old. When I was first told, I had a preliminary idea of what this meant, but I did not anticipate the extent to which this disease has affected me. When I was in elementary school I remember being the only kid who had to refrain from after-school activities and being the only one leaving school early because I needed a reprieve from the pain.
Fortunately, once I started receiving the right treatment and support from the Crohn’s & Colitis Foundation, I have been able to overcome the challenges of my illness and lead a normal teenage life. I am now a rising senior at Columbia Grammar and Preparatory school, where I am an active member of the school’s academic clubs and athletic teams — without the disease precluding me. The support I have received from the Crohn’s & Colitis Foundation has been immense, for without it, my activities would have been severely curtailed. It is my mission to help those just like me so that they too do not have to be hindered by the disease. As this disease has no cure, I strongly advocate for the Crohn’s & Colitis Foundation.