Abstract Introduction It is intuitive to expect youth with IBD will have higher rates of depression and anxiety than their otherwise healthy peers, and most research bears this notion. However, existing literature of emotional distress has not consistently addressed the differentiation between general depression and anxiety and normative emotional experiences of IBD. Assessment measures often used for youth with IBD align with the DSM criteria; based on symptoms, without considering etiology or context (e.g., chronic disease). The IBD Distress Scale (IDS) was designed to identify distress/worry in response to extraordinary circumstances of having IBD. Methods The IDS is a 27-item measure of distress related to IBD symptoms, treatment, and disease burden. The youth self-report was completed by 108 patients ages 12–19, and 101 parents. The IDS measure was administered with general measures of depression (Patient Health Questionnaire, PHQ8) and anxiety (General Anxiety Disorder, GAD7) to youth with IBD attending their routine gastroenterology appointment. Item responses were classified as “not a problem,” “moderate problem,” or “serious problem.” For some analyses, “not a problem” and “moderate problem” were collapsed. Correlations and frequencies were conducted to compare youth and parent responses. Results Results identified top “serious problems” rated by youth and parents, separately. The highest rated problem for youth was worries about not being able to eat what others are eating, with 18% reporting this as a serious problem. The second most highly rated “serious problem” by youth was fear of not having bathroom access (15%). For parents, the highest rated “serious problem” was fear of surgery (24%). Parents also rated worrying about next flare, and feeling there’s no way to avoid a flare, as “serious problems,” both with 16% frequency. Pearson correlations for the top problems identified as “serious” by youth and parents revealed significant agreement for socially-oriented worries; e.g., anxiety about patient not being able to eat what others are eating (r=.33). Conclusion The CCF states IBD treatment goals are five-fold: achieve remission; control inflammation; maintain remission; prevent and manage complications; maximize quality of life. Based on research with other diseases, integrating the IDS into current IBD treatment protocols is a logical step for identifying target areas for treatment. Thematically, results revealed youth and parents worry about future-oriented (e.g., worrying about next flare) and socially-oriented issues (e.g., possibility of not having access to a bathroom). The identified themes enlighten current treatment and provide guidance for improved interventions. Future directions should include development and implementation of appropriate interventions specific to the identified serious problems for IBD distress.