Crohn’s Disease and the Need for Continued Research

Categories: Gastroenterology, Success Stories

Signs and symptoms of Crohn’s disease, a type of Inflammatory Bowel Disease (IBD), can range from mild to severe. Symptoms usually develop gradually, but can come on suddenly without warning. While Crohn’s sufferers may experience periods of remission, when it’s active, they know it. Symptoms can run the gamut from diarrhea, fever and fatigue to abdominal pain and cramping, blood in the stool, mouth sores and other conditions. Powerful medications are required for disease control and the need for surgery is common. There is currently no cure. Click here to learn more about the Division of Gastroenterology at Connecticut Children’s Medical Center.

FINDING HOPE AND RELIEF FROM CROHN’S DISEASE

Having battled Crohn’s disease for the past seven years, Miriam Holtzberg, 14, sees brighter days ahead, now that she is undergoing treatment at Connecticut Children’s Medical Center. (2016)

Miriam Holtzberg was just seven years old and in the second grade when she was diagnosed with Crohn’s disease, a type of inflammatory bowel disease that left her in constant pain. Dairy products and fried foods were among the first foods to disagree with her. Popcorn, nuts and other foods soon followed. “My stomach was hurting constantly and I was missing a lot of school,” said Miriam who, today at 14, has lived with Crohn’s disease for half of her life.

After her diagnosis, Miriam – the oldest of five children and the daughter of Meir and Chaya Holtzberg of New Haven – began spending most of her time in doctors’ offices and resting at home on the living room couch. Crohn’s disease not only affected her ability to eat and enjoy food, but affected her social life as well.

“I could no longer do simple stuff, like go bowling or go to the mall with friends,” said Miriam, who is in the 9th grade this year. “After awhile, they would stop inviting me. To get my mind off the pain, I would read books or watch TV,” she said.

Miriam tried a lot of different medications over the years, but nothing seemed to help, her mother, Chaya, said. “Miriam got to a point where she wasn’t getting better; she was going downhill. Everything she ate caused her pain – even chicken soup.”

PAIN AND DESPAIR GIVE WAY TO HOPE

Miriam with her father, Meir Holtzberg. (2016)

In February of 2016, when Miriam’s spirits were at their lowest, her father, Meir, attended an evening leadership program where he ran into a family friend from West Hartford. During their conversation, “I told my friend that my daughter was suffering at home on the couch with Crohn’s disease,” he said.

The friend recommended a pediatric gastroenterologist in Hartford — one with a reputation as being the leader in the field – as someone who might be able to help. That person was Jeffrey Hyams, MD, director of Digestive Diseases, Hepatology and Nutrition at Connecticut Children’s Medical Center. Dr. Hyams and his team have treated several thousand children with IBD over the past 30 years.

“I reached out to Dr. Hyams and we are so glad we did,” Meir said.

Dr. Hyams met with the family right away, and put a plan of action into place immediately.

“We are so grateful,” Meir said. “I wish we would have known about Connecticut Children’s seven years ago when she was diagnosed.”

MIRIAM’S CARE JOURNEY AT CONNECTICUT CHILDREN’S

Miriam and her parents, Meir and Chaya Holtzberg. Miriam is big sister to her brother David, 12, and sisters Bella, 8, Bassie, 5, and Sara, 3. (2016)

“Miriam was quite ill when we first saw her,” Dr. Hyams said. “Having suffered from Crohn’s disease for almost seven years, she had already received many of the standard therapies. Despite that, her small intestine had developed critical narrowing from chronic inflammation, which resulted in constant pain, diminished appetite and fatigue.”

“Her growth had been significantly delayed by many years of inflammation and poor nutrition,” Dr. Hyams explained. “It became quite clear fairly quickly that we were going to need a more aggressive approach with surgery, followed by dramatic dietary changes and newer medications.”

“Despite being so ill, Miriam displayed a great inner strength that was captivating,” Dr. Hyams noted. “This little girl had suffered so much, yet she still had courage, had certainly not been defeated and wanted to look to better days. It was easy to become a fan of hers right away.”

Following surgery on March 2nd, Miriam was hospitalized for a week and placed on a special diet called exclusive enteral nutrition, in which she eats no regular food and receives all of her nutrition by a special formula through a tube that has been surgically placed in her stomach.

“We have good evidence that this type of nutritional therapy is associated with intestinal healing and promotes growth,” Dr. Hyams said. “While not great for quality of life, we felt strongly we needed to give her intestine every chance to heal after surgery.”

Miriam, who will be on the feeding tube until June, said she feels better already.

NEW LEASE ON LIFE

Although there is currently no cure for Crohn’s disease, Miriam, who would one day like to be an author or editor because she loves reading and writing, has something she didn’t have before — relief from her pain and hope for the future.

“I feel happy now,” Miriam said. “There’s a 70 percent chance I will go into remission, and I will lead a carefree and normal life.”

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