R
Ruth White
Guest
When Donna Bynes Googled herself a few weeks ago, she actually stole the first entry away from bubbly actress Amanda Bynes, her husband’s second cousin.
“That was a first. It was kind of crazy,” the 29-year-old Roselle resident said. “I guess I’m getting my 15 minutes of fame.”
Bynes’ name is suddenly search engine fodder because she was the first person in the country to receive an injection of Cimzia, a prescription drug for Crohn’s disease approved late last month by the Food and Drug Administration.
The chronic inflammatory bowel disease is characterized by abnormal immune reactions in the gut and often affects people between the ages of 15 and 35. People with Crohn’s typically have to do bathroom mapping — identifying bathrooms in advance before venturing outside. Symptoms include diarrhea, rectal bleeding, malnutrition, narrowing of the intestinal tract, obstructions, abscesses, cramping, abdominal pain and a host of other problems.
The disease afflicts 500,000 people in the United States.
Cimzia is the third drug in a class of medications that block an inflammatory protein called tumor necrosis factor alpha to alleviate the intestine’s hypersensitivity. Bynes had been doing well on another treatment but ecstatically enrolled in the Cimzia program because it was missing one key side effect.
“My husband and I got married two years ago, and we want kids,” Bynes said. “The other medication I was on was so toxic that it would have aborted the baby, and Cimzia doesn’t cross the placenta. So this was the perfect option for me.”
Thankfully, her body has been responding well to the drug, but the litmus test will come in the next couple of weeks when the last traces of the previous drug will disappear from her system.
It’s been a long path to recovery for Bynes. She had her first colonoscopy at age 5, and doctors kept telling her she suffered from gastritis. Bynes was diagnosed with Crohn’s when she was 12 after she had gotten down to 60 or 70 pounds because she couldn’t eat or drink.
“I spent pretty much my whole life in the bathroom,” she said. “In grammar school, I was afraid to have normal sleepovers, and I only had one friend I could really trust to not make fun of me if I had an accident.”
Hesitant to go places for fear of not being able to find a restroom facility, Bynes missed out on a lot. In high school, she had a surgery to remove part of her large intestine. And as a last resort, doctors also made an incision on the outside of her abdomen to allow stools to empty into an attached pouch, which made distasteful noises. The procedure was reversed two years later, but that didn’t make growing up any easier.
"It was terrifying as an adolescent. Thankfully, I went to an all-girl school, so I didn’t have to deal with guys,” Bynes said. “But I couldn’t play sports. I couldn’t go swimming in the summer. I couldn’t do normal teenage stuff.”
Patients often are scared to take long car rides, fly on a plane, go on vacation or attend events because of the unpredictability of flare-ups. Dr. David Rubin, co-director of the Inflammatory Bowel Disease Center at the University of Chicago Medical Center, said Crohn’s can be socially isolating.
“There are a lot of variables at play, so it’s challenging to maintain normalcy. It affects personal relationships with friends and co-workers,” said Rubin, Bynes’ physician. “Often, you’re dealing with high school or college kids. Maybe they’re living away from home for the first time experimenting with relationships and suddenly get rectal bleeding and the school nurse tells them it’s hemorrhoids.”
People with Crohn’s often jump from one therapy to another to find a treatment that works. Bynes situation was no different, and she oscillated between periods of remission and relapse for years as her body built up a tolerance to certain drugs. So when the medical field grew excited about Cimzia’s possibilities, she jumped on the bandwagon.
“This is a drug that has really liberated our patients and enabled them to lead normal lives, so administering the first dose with Donna was quite a milestone,” Rubin said. “Crohn’s is on the rise in the U.S., and we don’t know why. But fortunately, in the last few years, we’ve seen an explosion of promising new treatment options.”
“That was a first. It was kind of crazy,” the 29-year-old Roselle resident said. “I guess I’m getting my 15 minutes of fame.”
Bynes’ name is suddenly search engine fodder because she was the first person in the country to receive an injection of Cimzia, a prescription drug for Crohn’s disease approved late last month by the Food and Drug Administration.
The chronic inflammatory bowel disease is characterized by abnormal immune reactions in the gut and often affects people between the ages of 15 and 35. People with Crohn’s typically have to do bathroom mapping — identifying bathrooms in advance before venturing outside. Symptoms include diarrhea, rectal bleeding, malnutrition, narrowing of the intestinal tract, obstructions, abscesses, cramping, abdominal pain and a host of other problems.
The disease afflicts 500,000 people in the United States.
Cimzia is the third drug in a class of medications that block an inflammatory protein called tumor necrosis factor alpha to alleviate the intestine’s hypersensitivity. Bynes had been doing well on another treatment but ecstatically enrolled in the Cimzia program because it was missing one key side effect.
“My husband and I got married two years ago, and we want kids,” Bynes said. “The other medication I was on was so toxic that it would have aborted the baby, and Cimzia doesn’t cross the placenta. So this was the perfect option for me.”
Thankfully, her body has been responding well to the drug, but the litmus test will come in the next couple of weeks when the last traces of the previous drug will disappear from her system.
It’s been a long path to recovery for Bynes. She had her first colonoscopy at age 5, and doctors kept telling her she suffered from gastritis. Bynes was diagnosed with Crohn’s when she was 12 after she had gotten down to 60 or 70 pounds because she couldn’t eat or drink.
“I spent pretty much my whole life in the bathroom,” she said. “In grammar school, I was afraid to have normal sleepovers, and I only had one friend I could really trust to not make fun of me if I had an accident.”
Hesitant to go places for fear of not being able to find a restroom facility, Bynes missed out on a lot. In high school, she had a surgery to remove part of her large intestine. And as a last resort, doctors also made an incision on the outside of her abdomen to allow stools to empty into an attached pouch, which made distasteful noises. The procedure was reversed two years later, but that didn’t make growing up any easier.
"It was terrifying as an adolescent. Thankfully, I went to an all-girl school, so I didn’t have to deal with guys,” Bynes said. “But I couldn’t play sports. I couldn’t go swimming in the summer. I couldn’t do normal teenage stuff.”
Patients often are scared to take long car rides, fly on a plane, go on vacation or attend events because of the unpredictability of flare-ups. Dr. David Rubin, co-director of the Inflammatory Bowel Disease Center at the University of Chicago Medical Center, said Crohn’s can be socially isolating.
“There are a lot of variables at play, so it’s challenging to maintain normalcy. It affects personal relationships with friends and co-workers,” said Rubin, Bynes’ physician. “Often, you’re dealing with high school or college kids. Maybe they’re living away from home for the first time experimenting with relationships and suddenly get rectal bleeding and the school nurse tells them it’s hemorrhoids.”
People with Crohn’s often jump from one therapy to another to find a treatment that works. Bynes situation was no different, and she oscillated between periods of remission and relapse for years as her body built up a tolerance to certain drugs. So when the medical field grew excited about Cimzia’s possibilities, she jumped on the bandwagon.
“This is a drug that has really liberated our patients and enabled them to lead normal lives, so administering the first dose with Donna was quite a milestone,” Rubin said. “Crohn’s is on the rise in the U.S., and we don’t know why. But fortunately, in the last few years, we’ve seen an explosion of promising new treatment options.”
