1. Peterson, Kristin D. BSN, RN

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Stephanie was diagnosed with Crohn disease after starting the seventh grade. Her course was complicated by appendicitis and subsequent development of a fistula draining to her skin. She also had to be treated with high-dose prednisone in addition to mesalamine and budesonide. Her prednisone caused her appearance to become cushingoid, and her draining fistula made summer at the pool with her friends unappealing to her. Like Stephanie, most children with inflammatory bowel disease (IBD) are diagnosed during adolescence, a tender time in life when both the stigma of a chronic illness and the impact of disease on body image are magnified. Not surprisingly, there is an increased risk of depression in teens with IBD (Szigethy et al., 2004). The developmental and psychosocial implications of IBD in this vulnerable age group have been discussed in this column.


An emerging concern in older children and teenagers with IBD is school attendance; moderate-to-severe IBD is related to frequent absence from school, with 38% of children in one series reporting 20 to 40 missed days of school over 1 year (Moody, Eaden, & Mayberry, 1999). The resulting distress in terms of "making up" absences, poor grades, and the social isolation compound with the debilitating effects of the illness. It is important for the gastroenterology nurse to liaise with teaching staff in the school to provide education regarding the child's limitations and special needs. In terms of advocacy, it is important to weigh in on school policies that impact IBD patients' functionality and privacy, such as accessibility to bathrooms and the availability of special diets through the cafeteria.


Adolescence is often seen as a period of rebelliousness, and the teen burdened with a chronic illness poses similar, if not accentuated, challenges in this respect. This may impact medication nonadherence, which is heightened in younger patients with IBD and impacts the disease course (Mackner & Crandall, 2005). In treating adolescents with IBD, it is important to stress that the responsibility of medication adherence needs to be shared between the adolescent and the caregiver. Teens need to have their independence promoted; however, parents should have a system for follow-up on adherence to the medication regimen. As the gastroenterology nurse, it may be helpful to discuss who will do what during clinic visits. Questions to discuss may include whose job is it to reorder medications, how the patient will remember to take his or her medication, and how the parent will know the child took the medication. Pill sorters and setting alarms on the youngster's cell phone or wristwatch can often prevent tension between the adolescent and the parents.


Irritable bowel syndrome (IBS) symptoms also tend to emerge in the second decade of life in many patients. These symptoms add an additional burden to patients with IBD (Quigley, 2005). These symptoms may provoke considerable anxiety and expense from unnecessary medical testing. Careful history and examination as well as the judicious use of inflammatory activity indices, including erythrocyte sedimentation rate, C-reactive protein, platelet count, fecal calprotectin, and lactoferrin, help distinguish patients with inflammatory disease from others exhibiting functional or IBS-type symptoms. The latter are significantly at higher risk of psychological complications and may benefit from referral and counseling (Saps & Di Lorenzo, 2004).


Finally, adolescent patients with IBD are more likely to have delayed puberty related to their marginal nutritional status and the effect of chronic illness. The responsibility is on the gastroenterology team to optimize nutrition to support the increased growth requirements in adolescents. It is also very important to tactfully initiate a discussion on reproductive issues with these patients. Patients and their parents may have concerns on fertility, pregnancy outcomes, and the hereditability of IBD. Bearing in mind that sexual activity often starts around 15 years of age, this is also an age where the potential teratogenic effects of medications need to be discussed, emphasizing appropriate birth control. This is also the time, however, to stress the greater likelihood of successful pregnancy outcomes with optimized medical management (Mottet et al., 2005).


These challenges in adolescents with IBD can be managed by frequent follow-up with families and identifying support networks for the family. Screening for depression and appropriate referral to psychotherapist are imperative.


Stephanie is now a senior in high school. Her disease is in remission and she demonstrates a mature attitude toward her disease. She is active in the Crohn's and Colitis Foundation of America (CCFA) and mentors younger girls having trouble with medication adherence, body image, and peer relationships. Stephanie's growth and maturation helped her understand consequences related to noncompliance with medication administration. Stephanie's father also suffers from Crohn disease; together, they participate in the yearly walk to raise awareness and money for research. The chair for our local CCFA has asked for Stephanie's help when parents approach him with concerns for their teenagers.


The feeling of success and satisfaction when children reach remission of disease activity is one of the greatest rewards of being a gastroenterology nurse.




Mackner, L. M., & Crandall, W. V. (2005). Oral medication adherence in pediatric inflammatory bowel disease. Inflammatory Bowel Disease, 11(11), 1006-1012. [Context Link]


Moody, G., Eaden, J. A., & Mayberry, J. F. (1999). Social implications of childhood Crohn's disease. Journal of Pediatric Gastroenterology & Nutrition, 28(4), S43-S45. [Context Link]


Mottet, C., Juillerat, P., Gonvers, J. J., Froehlich, F., Burnand, B., Vader, J. P., et al. (2005). Pregnancy and Crohn's disease. Digestion, 71(1), 54-61. [Context Link]


Quigley, E. M. (2005). Irritable bowel syndrome and inflammatory bowel disease: Interrelated diseases? Chinese Journal of Digestive Disease, 6(3), 122-132. [Context Link]


Saps, M., & Di Lorenzo, C. (2004). Diagnosing and managing functional symptoms in the child with inflammatory bowel disease. Journal of Pediatric Gastroenterology & Nutrition, 39(Suppl. 3), S760-S762. [Context Link]


Szigethy, E., Levy-Warren, A., Whitton, S., Bousvaros, A., Gauvreau, K., Leichtner, A., et al. (2004). Depressive symptoms and inflammatory bowel disease in children and adolescents: A cross-sectional study. Journal of Pediatric Gastroenterology & Nutrition, 39, 395-403. [Context Link]