Crohn's disease

Josh's story

While on vacation in Washington, DC, my 12-year-old son Joshua complained about a sore near his buttocks. As anyone with a preteen son would expect, he was embarrassed to have me look at his buttocks but there appeared to be an open sore. The following day we traveled home to Boston. We assumed he just didn’t wipe well and caused an abrasion near his buttocks, so we went to see a pediatrician who prescribed antibiotics. Within three days the sore seemed to be getting worse, so I called his regular pediatrician and he reevaluated Joshua. He knew right away that this was not just an abrasion but an anal fistula (an abnormal passage that connects the rectum to a part of the urinary or reproductive system), and he informed us that he believed Josh might have inflammatory bowel disease (IBD). He called Children’s Hospital Boston and we were referred to the Gastroenterology (GI) clinic.

We met with Dr. Sue Rhee a resident at the time, and Dr. Menno Verhave. They evaluated Joshua and scheduled him for a battery of tests. The colonoscopy confirmed that Joshua had Crohn’s disease, an inflammatory bowel disease that usually involves the small intestine but can affect the whole digestive tract. The biopsies showed involvement in the stomach, small intestine and rectum. At this point we were all a bit surprised since Josh went to the bathroom a few times a day but never really had any pain. Joshua took everything in stride and continued with his normal activities. He even attended sleepaway camp over the summer.

The anal fistula was persistent and it took well over a year to heal. After a while Joshua’s liver enzymes started to rise. Dr. Verhave was very concerned that Joshua might have a rare liver disease that could require a liver transplant. He consulted with his team and they felt it would be best if Joshua had a liver biopsy. We were all so anxious at this point. Janice Arnold, the GI social worker, came into our lives and helped support us through this difficult time. The nurses and the doctor who performed the liver biopsy were wonderful. They updated us every step of the way. Even Dr. Verhave, who was seeing patients, came to check up on Joshua and us.

A few days later the phone call came. Joshua did not have this rare disease. The liver biopsy showed no fibrosis of the liver. I cried on the phone when Dr. Verhave called with the news. Dr. Verhave changed Joshua’s medication and we monitored his blood levels. After several months, his liver enzymes returned to normal.

During this time we realized that Joshua was not really growing. Dr. Verhave had Joshua see a nutritionist who encouraged him to increase his calorie intake to 2,200 per day. At first this seemed very exciting. He could eat whatever he wanted, but certain foods started to disagree with his stomach. This evolved over time so some foods that he was able to tolerate before he wasn’t able to now. It was constant trial and error.

The nutritionist had Joshua try all these supplemental milk shakes. He was going to Dunkin Donuts and getting two glazed donuts as a mid-afternoon snack most days. Over the next few months, he did gain some weight but the he still did not grow taller. He was well behind in stature compared to the other kids at school, and although he had great self-esteem, it bothered him. He also started to get abdominal pain and diarrhea. It was harder for him to continue with the level of food intake that was necessary for him to gain weight. His nutritionist felt it would be a good idea to meet with an endocrinologist just to make sure we weren’t missing anything.

We met with Dr. David Breault in the endocrine department at Children’s in Waltham. He was extremely thorough and made us feel at ease. Joshua underwent more blood work, a bone age, and after a few months, a growth hormone stimulation test. The tests revealed that Joshua’s short stature was probably due to the Crohn’s, but no one could say for sure.

Joshua is currently in remission with his Crohn’s. He has slowly grown over time and is doing well. He continues to see Dr. Verhave and Janice Arnold who has supported him throughout his illness. He is an honor student; he wrestles for his high school and also plays volleyball. Joshua has volunteered and participated in many research studies for Children’s Hospital Boston. He has participated in a DVD about Crohn’s and colitis for Children’s to help other families learn about the disease and its treatment.

We are so grateful to all the staff at Children’s who have always been so wonderful.