Rachel Levy spent her childhood struggling with ulcerative colitis, but she didn’t give in to self-pity. While learning how to manage the symptoms of the disease, she reached out to help others, earning the title of “Hero” from the Crohn’s & Colitis Foundation of America.
“My dream is to work with people to improve their lives,” says Levy, 18, who would like a career helping people, especially children, with serious illnesses. Although she had symptoms of the disease in infancy, she was not correctly diagnosed until age four. It’s rare to be diagnosed so young; most children are diagnosed between the ages of 12 and 18.
Ulcerative colitis is a form of inflammatory bowel disease in which the lining of the large intestine (colon) and rectum become inflamed. Crohn’s disease is a related condition that most often involves the lower end of the small intestine and the beginning of the large intestine. Many people are first diagnosed when they are adults. Symptoms, which can be mild or severe enough to require hospitalization or surgery, may include abdominal pain, diarrhea, vomiting, fever and joint pain. There is no cure for IBD, but the symptoms can be managed.
Dr. Fayez K. Ghishan, who ordered the test that led to Levy’s diagnosis, has played a major role in her life. Ghishan is head of the University of Arizona College of Medicine pediatrics department, a professor and a researcher specializing in gastroenterology and nutrition. He also sees patients and is physician-in-chief for Diamond Children’s Medical Center.
“Dr. Ghishan has made a very big difference,” says Nanci, Levy’s mother, who also has colitis. “We have a lot of confidence in him.” She says that Ghishan tries to encourage people to have as normal a life as possible, and uses terms that children can understand. He has become part of their lives, including attending Levy’s bat mitzvah at Temple Emanu-El.
Ghishan, who gives lectures for the public at the Crohn’s & Colitis Foundation (ccfa.org), says there is a genetic component with IBD, so if one family member has the illness, it is wise to watch for symptoms in other family members. One of the main keys to treatment is early diagnosis.
Levy says Ghishan wants her to be a doctor or a nurse, and that some of her friends who have medical conditions want to go into the medical field. “I like caring about children, but don’t necessarily want to be in the medical field,” says Levy, who has attended camps for children with serious illnesses and has volunteered at camps to help children. For her b’nai mitzvah project she volunteered at Diamond Children’s Medical Center, where she worked in the library, played games and read books with patients and sometimes their siblings. “I am interested in being a child life specialist,” she says. “These are people trained to go to hospitals and check on kids to see how they can make things better for them.”
Dealing with the disease made Levy’s childhood a lot more complicated than most kids’. She has been taking medication since she was four years old, has been hospitalized twice, but has not needed surgery. As she has gotten older her symptoms have become less frequent and severe, but she still has occasional flare-ups. “During elementary school I was more ill than I am now,” she says. “It was hard to go to social events because there are things I can’t eat like pizza or cake, and I would get tired more easily than my friends.”
Diet is a contributing factor with IBD, says Ghishan, and eliminating high fat, high sugar and highly processed foods helps patients manage symptoms. He says that curcumin, a compound in the spice turmeric, has anti-inflammatory effects and shows potential in treating IBD. Ulcerative colitis and Crohn’s are very common in certain populations, such as Ashkenazic Jews of central or eastern European descent. Ghishan also noted that excessive use of NSAIDs (nonsteroidal anti-inflammatory drugs) such as naproxen and ibuprofen may contribute to IBD.
Colitis and Crohn’s are autoimmune diseases. People normally have bacteria in their intestines that help digest food and destroy disease-causing microorganisms. But with Crohn’s and colitis, the body’s systems attack these bacteria as if they were harmful invaders, causing inflammation (a normal immune system response). The inflammation does not subside, leading to ulceration and other problems.
Several medications are used to treat IBD along with changes in diet. Levy still takes medication, and many times brings her own food when she leaves home. She has found that a gluten-free and dairy-free diet is helpful, and is glad that more stores, restaurants and bakeries are offering gluten-free and dairy-free products. “My sister Maya is a good baker and she spoils me by trying different recipes that are gluten-free,” says Levy.
“It was harder for Rachel to be spontaneous,” Nanci recalls. “Even now it can be difficult because some people don’t know about Rachel’s struggle and they don’t understand that she can be fine one day and not the next. But Rachel always puts on a good face.”
Since stress tends to trigger IBD, Levy also uses some relaxation practices to lessen symptoms. “I do yoga for overall wellness, not necessarily just to relax,” she says. “I have learned some breathing techniques that help me relax. When I have a flare-up and have waves of pain, I try to distract myself by focusing on a character in a television show or by reading. The point is to re-direct my focus away from the pain.”
Attending camps for children with serious medical conditions boosted Levy’s self-confidence and enhanced her outlook on life. She attended the Painted Turtle Camp near Lake Hughes, Calif., and Round-up River Ranch Camp near Gypsum, Colo., where the emphasis is on teaching children that they are not defined by their illness. These camps are part of the SeriousFun Children’s network of medical specialty camps founded by actor and philanthropist Paul Newman. They are free of charge for campers and their families.
At camp, it was easy for Levy to make friends with other kids who understood life with a chronic illness. She was a camper for six years and served as a volunteer for the past two years at the Painted Turtle Camp. “I volunteered last summer as a leadership camper assisting younger girls with activities such as music, arts and crafts and therapeutic horseback riding,” says Levy. “I wanted to make sure they had fun.”
“We participate in the walk held in October sponsored by the Crohn’s & Colitis Foundation of America,” says Nanci. “We gather a team to walk together.” As the CCFA Honorary Hero in 2013, one of Levy’s duties was to attend the annual walk and speak to people about her experiences.
These days Levy is looking forward to the next chapter in her life as she heads off to college at the University of Michigan at Ann Arbor. In her first semester, she is going to take classes in Hebrew, sociology and drawing, and a writing seminar. “I am really proud of her,” says Nanci, “even though I will worry about her being on her own at college.”
Korene Charnofsky Cohen is a freelance writer and editor in Tucson.