Introduction
Different stages of life bring different challenges and rewards. For people living with a chronic illness, the challenges can be greater. In this article, we share the stories of 3 individuals who discuss the challenges of living with inflammatory bowel disease (IBD), and their personal coping strategies. Although their ages range from 14 to 36, Peter, Melanie, and Chris share the same goal: to live life fully, despite their IBD.
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Peter Moras, 14, Heading to High School
Peter Moras, of Libertyville, Illinois, is going off to high school this fall, looking forward to a new experience and hoping he will have the same good attendance record he had in eighth grade. He missed just over a week of school in eighth grade, after missing almost half of seventh grade due to frequent and long-lasting IBD flares.
Peter was diagnosed at age 8, near the end of second grade. He didn't feel right on a plane trip home from Oregon, where he was visiting cousins. "On the plane I needed to go to the bathroom a lot," said Peter, "and when I got home I had bad stomach aches and diarrhea."
Before long he had blood in his stool. Parasites and bacterial infection were ruled out. In Peter's case, his IBD symptoms came on "fast and furious," explained his mother, Michele. Six weeks after his initial symptoms appeared, he needed 2 blood transfusions. Many hospitalizations and medications later, Peter now has a drug regimen that works for him.
What's the hardest thing about being a kid with IBD? "Missing school," according to Peter. "I have to make up so much work when I miss school. I work with a tutor to make up the work, but when I miss school, I also miss seeing my friends."
Peter's school district provides tutoring to students after they miss 10 consecutive days of school, and Illinois also provides medical accommodations plans for students who need them. Services vary from state to state, but schools throughout the country offer IEPs, or Individualized Education Plans, for students with special needs of any kind. "I highly recommend that parents of kids with IBD find out what resources are available at their school," said Michele. She adds that it's important for the school and teachers to be made aware of a child's health situation. "Some families want to keep things private, but most teachers and schools are more than willing to help when they understand what's going on. I'm a teacher's aide, and I know how helpful it is to have the relevant information in order to best help a student."
For fun, Peter plays soccer in a recreational league that's forgiving of absences, and he's learning to ride a unicycle. He's a Boy Scout, and he is a big reader, with a preference for science fiction and adventure books.
Every August, he attends a Crohn's and Colitis Foundation of America (CCFA) camp. Aside from special times for medications, the camp focuses on the things every kid wants to do at summer camp: waterskiing, tubing, climbing, zip lining, campfires, ball games. Many of the camp counselors have Crohn's disease and ulcerative colitis, as well. It's a place where no explanations are needed, because everyone understands.
Asked how he explains his condition to kids back home, Peter said: "Mostly I don’t even bother. But if people ask why I miss school a lot, I explain that white blood cells attack my colon and small intestine. I tell them that I have a chronic disease that will go on until someone finds a cure."
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Melanie Krutzel, 21, College Student
Melanie Krutzel is a senior at Rutgers University in New Jersey, where she is majoring in social work. Melanie's symptoms, including pain and uncontrollable diarrhea, first appeared when she was 12. Her oldest sister has IBD, so her parents took Melanie to see a specialist immediately. Before long, she received the same diagnosis. "When I first learned about my condition, I cried," said Melanie. "My parents were used to dealing with a sick child and were well informed, and they've been a great support system, which has been a help to me. But it was such a difficult age for a girl to get diagnosed with this disease."
When Melanie was diagnosed, she weighed just 65 pounds and was losing weight, and people often assumed that she had an eating disorder. She also had a hard time dealing with the medical challenges, including swallowing pills, which she had to learn to do. The following year, she was put on steroids. She gained 20 pounds in a month and developed the typical “moon face” that drew unwanted attention from her peers. "I missed a lot of school and battled with managing the social life of a preteen with the medical problems of a sick individual," said Melanie. "I was embarrassed and uncomfortable with myself. Lots of middle-school kids deal with issues of self-doubt, but my situation was more complicated than most."
According to Melanie, the best thing she did for her self-esteem was to attend the CCFA summer camp that Peter Moras (see above) now attends. "Meeting other people my age with the same issues related to IBD made me more comfortable in my skin."
Melanie chose to attend college near home, which has allowed her to continue seeing her same doctors. She acknowledged that the transition to living away from home is much greater for someone with a chronic medical condition but said she began taking responsibility for her medication and doctor's appointments while she was still living at home. "It will make your adjustment to college much easier if you start doing these things for yourself before you leave home," she said. "I would also say that it’s much harder to maintain your health in a college atmosphere, where there's a lot of stress, and pizza and 'fat sandwiches' are the only food around. Reaching out to any resources on campus is a good idea. The office for disabilities can help you—you might get special housing accommodations like I did or be given latitude if you're sick and need to reschedule exams, for instance."
What are the most important things Melanie has learned at college? "Consider your health every step of the way, and use your knowledge about your body to make every decision. Understand your stress levels, tipping points, and social tendencies—and practice taking care of your body by yourself before your move-in day. It will make all the difference and prevent you from feeling overwhelmed."
According to Melanie, the best part of college life is that her peers are much more supportive than they were when she was diagnosed in adolescence. "You will be surprised at how understanding other people can be," she said. "You don’t need to go into details about your health unless someone asks. I just explain that I have an autoimmune disease that causes inflammation of my intestines. Most people don’t ask much more, but if they do, don’t be afraid to share. If they ask for more information and sharing it backfires, then you know that those people aren't worth your time. Dating and relationships were harder for me when I was younger and more insecure. Now I know that if someone really loves me they will accept my IBD and me. Fortunately, I have a very supportive boyfriend who is understanding and completely ‘there’ for me in all aspects, including my health." (For previous articles about living with IBD in your 20s, check out the stories about Olympic kayaker Carrie Johnson and political activist and aspiring writer Ally Bain.)
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Chris Vanderwerff, 36, Mother of Two
Chris Vanderwerff, of Salem, Wisconsin, is the mother of 2 children: Nathan, 8, and Natalie, 6. She was diagnosed with IBD at age 19, when she was a college student, and she has been hospitalized many times since then—both before and after her pregnancies. "Both pregnancies were the best times for me, and the healthiest 18 months of my life since 1994," said Chris. "Before my first pregnancy, I read somewhere that if your IBD is in remission at the time of conception, it is likely to stay that way for the duration of the pregnancy. I don't know if this is true or if I was just lucky, but it was a very good time for me."
Chris had no miscarriages, and both of her babies were full-term and normal weight (almost 8 pounds). She gained weight steadily during her pregnancies, so providing sufficient nutrition to her growing baby was not an issue. Four months after her son was born in 2003, she was hospitalized with a flare, which her doctors think was a reaction to the hormonal changes at the end of the pregnancy. And she was admitted to the hospital for a resection of her bowel 6 months after her daughter was born in 2006. She has not had any serious problems since then, and with the help of a new doctor, she is now doing better than ever.
Chris said the most important element to living with IBD is "to have a great support system, as this disease is so unpredictable. You never know when you’re going to have flares and will need to have help. Before Nathan was born, my husband gave up everything, including nearby family, and we moved across the country to Arizona on a whim, to see if the climate would improve my condition. He has had to be very flexible and understanding all of these years, dealing with my mood swings from medications, unpredictable sick days, and nights when I need to be driven to the hospital, where I've spent countless days and nights. We started dating before I was diagnosed in 1992, and he’s been with me every step of the way."
Chris is also adamant about the importance of having a great doctor: "Not just a good or okay doctor, but a great doctor, because that will make all the difference in your life. Find the best doctor you can, because you deserve it. I drive almost 2 hours one way to see Dr. Rubin in Chicago, and he has helped me so much. My only regret is that I didn’t start seeing him sooner."
Read more about fertility, pregnancy, and breastfeeding and inflammatory bowel disease. If you have IBD and are planning to get pregnant, remember that each person's disease is different. Be sure to involve your gastroenterologist and obstetrician in any decisions you make, so that you get the best possible support for you and your baby.
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