The young and the resolute: Two 20-somethings cope with IBD

Patient X was accustomed to his daily stomachaches. They had been "just a part of his life" for as long as he could remember. But when he began to see blood in his stool and lost a good deal of weight, he knew something was seriously wrong. Patient X underwent a colonoscopy and a few weeks later learned that he had ulcerative colitis. For patient X at age 25, it was somewhat of a shock. He had stomach problems from the time he was a child, but wasn’t officially diagnosed with ulcerative colitis until he was 22. It definitely came as a surprise, especially when he heard about the increased risk of colon cancer associated with the disease. Over one million Americans have ulcerative colitis or Crohn’s disease, two of the most widespread types of inflammatory bowel disease (IBD). Both conditions inflame the lining of the digestive tract and cause chronic diarrhea and abdominal pain. But while Crohn’s disease and ulcerative colitis can occur at any age, most people are diagnosed at a young age, typically between 15 and 35. The causes of IBD are not known; however, nutrition and stress management are factors frequently considered when discussing how to minimize symptoms. Patient X was able to keep his ulcerative colitis in remission until last summer when he began to experience acute pain and frequent bouts of diarrhea throughout the day, most always tinged with blood. He scheduled another colonoscopy and hoped for the best. But when he landed in the hospital the week of Thanksgiving, he was floored. He knew he would need advanced treatment, but he didn’t expect a weeklong hospital stay.

While in the hospital patient X was prescribed a liquid-only diet and given intravenous steroids to help heal his colon. During his stay, patient realized just how much ulcerative colitis had affected his life.

He had given up so many of the activities he enjoyed to avoid becoming sick in public. Saturday night movie and dinner out had become phrases synonymous with inevitable stomachache. We understand how this kind of diagnosis can impact a young person’s life. As an adult gastroenterologist, I see patients with IBD who are in their late teens. The support for a young patient with IBD is holistic. One talks about general healthy lifestyle, a sensible diet, avoiding fast food, getting adequate rest and exercise. There is emotional support reinforcement and validation of concerns regarding body image. Finally, much time is spent educating the patient and parents regarding the natural history of the disease as well as the medications being used. Due to advancements in technology and research, medications for IBD have vastly improved over the past decades. Drugs like sulfasalazine, which reduce inflammation, but can have considerable side effects (nausea, heartburn, headache and anemia), are prescribed less than 5-ASA agents, a fairly new treatment that works by neutralizing a protein that contributes to the inflammation in Crohn’s disease, sometimes is prescribed for ulcerative colitis patients who have had little success with standard treatments. We always consider the possible side effects IBD medication can have on young people when prescribing treatment. We tend to be conservative in the use of more potent modifications because of side effects. The dilemma is weighing future drug side effects versus the current symptoms and disruption of life due to active disease.

After patient X was released from the hospital, he realized he would have to make some lifestyle changes to prevent future flare-ups. He began modifying his diet, watching his intake of roughage, like leafy greens and vegetables, and supplementing his meals with a nutritional energy drink. Patient X also learned how to effectively manage stress. When he experience pain or anticipate an episode, he practice controlled breathing: taking slow, deep breaths and imagining a peaceful scene.

Another patient Y aged 22, knows the importance of stress management. Four years ago, she was diagnosed with Crohn’s disease. Through college she had a couple of flare-ups while she learned to control her anxiety better. For her, it’s all about stress management; not letting things build up. Similar to ulcerative colitis, Crohn’s disease is typically diagnosed at a young age. But Crohn’s disease can occur anywhere in the digestive tract, often spreading through the layers of affected tissues. Her healthy attitude has allowed her to enjoy the lifestyle of a typical 22-year-old. Mostly, she lives life just like anybody else. She doesn’t see herself as a diseased person. But, she also thinks she’s one of the lucky one without a restricted diet, and medication works for her. She just has to keep a positive attitude and not let Crohn’s stop her. When patient Y anticipates an episode, she takes a logical approach to preventing a full blown flare-up. Her flare-ups are related to stress, so she feel one coming on, she just have to mentally assess the situation and figure out what is stressing her, rationale it and reduce the fear of it. Once she’d calmed herself, the problems go away.

As a young person, coping with IBD can be very difficult. While patient X stresses the importance of preventive care, keep your doctor informed of any changes in the way you feel, patient Y knows no better way to manage than simply living her life. Her coping mechanisms are reducing stress, medication and just living life.