patient story

patient name: Jamal Ginyard

age: 10 years

condition: Crohn's disease

seen in: gastroenterology

provider: Kelly Sandberg, MD, MSc

Two years ago, when Jamal was just 8 years old, he suddenly stopped eating and began losing weight rapidly. His growth halted for an entire year, and he started passing blood in his stool. Despite these alarming symptoms, when Jamal went to the emergency department, he was diagnosed with a virus, given fluids and sent home to recover. 

As Thanksgiving approached, Jamal’s condition worsened. This time, after being admitted to the hospital, his care team performed a full scope of his digestive tract, from the top and bottom. The diagnosis came back as Crohn’s disease, one of the inflammatory bowel diseases (IBD), with severe inflammation throughout his digestive system, from his esophagus to his rectum. He had ulcers and lesions that caused him tremendous pain. 

a difficult diagnosis and new challenges 

After his diagnosis of IBD, Jamal began treatment with, a biologic medication that worked well for about three months before his body rejected it. His health spiraled further as he contracted a severe C. diff infection, landing him in the hospital for a month. 

Dr. Kelly Sandberg, Jamal’s gastroenterologist, and the rest of his IBD team presented Jamal and his family with three treatment options: 

1. Start a new medication 
2. Continue using steroids, though Jamal had previously experienced harsh side effects. 
3. Choose to have a surgical procedure called an ileostomy, which meant getting an ostomy bag to help manage his symptoms (see graphic for an image of an ostomy).

In an incredible display of maturity, Jamal – at just 9 years old – chose the ileostomy. His parents, Jessica and Anthony, supported his decision because it was his body, and he understood what his care team explained to him. 

surgery and life with “Jerry” 

Two weeks after deciding on surgery, Jamal had most of his colon (large intestine) as well as his appendix removed. The surgery made a huge difference, once the colon was removed, the inflammation in the rest of the body calmed down.  

Along with surgery, Jamal received an ostomy bag, which he affectionately named “Jerry,” making it part of his everyday routine. An ostomy bag is a medical device worn on the outside of the body used to collect waste when a person is unable to pass stool through the rectum. The bag is attached to a stoma, which is an opening created during surgery in the abdomen, allowing waste from the intestines to exit the body.  

Recovery after surgery was tough. Jamal missed eight weeks of school and faced challenges as he adapted to life with Jerry. Though he still needs help changing the ostomy bag, he’s gradually learning to manage it himself. 

challenges and resilience 

Since his ileostomy surgery, Jamal has experienced two prolapses, where his intestine pushed out through the stoma, into his ostomy bag. This can happen for a number of reasons but for children it is typically caused by increased abdominal pressure and weak muscle tone. Jamal’s prolapses caused him and his family to take a step back and reevaluate what his body could handle. 

With his ostomy, Jamal has learned that he can no longer participate in activities like contact sports, jumping or swimming for long periods. Outside of activities, his body has been affected in other ways too; he’s often tired, feels aches and pains and has to follow a strict diet - no pork, no dairy and he has to chew his food extra long to help with digestion. 

To date, he has had two surgeries and will soon have his fifth scope. Still, Jamal remains positive, and he has never regretted his choice to have surgery. 

looking forward 

This October, Jamal is scheduled for another scope to see if the ostomy can be reversed. If the inflammation in his remaining colon is reduced, his care team might be able to reconnect his colon to his small intestine. If the inflammation isn’t under control, they will need to wait to ensure Jamal’s condition is stable before any more major procedures. 

Despite everything, Jamal and his family remain hopeful. His mom, Jessica, who has been his biggest advocate throughout this journey, was initially heartbroken. She was worried about the quality of life her son might have. But Jamal has shown incredible strength and courage. He’ll tell anyone that the ostomy bag saved his life and significantly improved his quality of life. 

“Sometimes, when I feel like giving up, I just look at Jamal. He never gave up – because he couldn’t.” - Jessica, Jamal’s mom 

Jamal’s future 

Jamal’s journey has been one of courage, resilience and growth. Though he’s missed out on some normal childhood activities like summer camp, riding his bike and playing outside without worry, he hasn’t let it break his spirit. He remains full of personality and a friend to everyone. His love of music and dancing keeps him going, and if you ask him, he wouldn’t change a thing about his decision to have surgery. For Jamal, the ostomy bag was lifesaving, allowing him to enjoy life without constant pain. 

As Jamal and his family look toward the future, they know there may be more challenges ahead. But with the love and support of his care team, his friends and his family, they face it with hope. 

inflammatory bowel disease care at Dayton Children’s 

The Inflammatory Bowel Disease Center at Dayton Children’s provides comprehensive care for children of all ages diagnosed with Crohn’s disease, ulcerative colitis, and other complex forms of IBD, like those that require surgery. Our team of pediatric specialists is experienced in managing even the most challenging cases, using the latest diagnostic tools and treatments to deliver personalized care plans. We tailor every treatment to meet the unique needs of each patient, ensuring the best possible outcomes. With a focus on both medical and emotional support, we empower families to navigate life with IBD and help children thrive. 

If your child is showing signs of IBD, like Jamal, talk to your pediatrician or schedule an appointment with one of our specialists.