Abstract

Abstract Background Ehlers Danlos Syndrome (EDS) is a group of rare connective tissue disorders. Gastrointestinal (GI) symptoms such as abdominal pain, nausea, vomiting, bloating and altered bowel habits are common in patients with EDS. Specifically, disorders of gut brain interaction (DGBI) appear to be more common in this patient population. The University Health Network (UHN) has the first and only multi-disciplinary clinic, including specialized gastroenterology services, in Canada for the management of EDS. Aims The aim of this study is to describe the GI symptoms and DGBI that are present in our cohort of EDS patients. Methods A retrospective chart review of all EDS who were seen in the gastroenterologist clinic of the GoodHope EDS clinic at UHN were reviewed from November 1, 2017 to September 26, 2019. Demographic information including age, sex and EDS subtype were collected. GI symptoms that were collected include constipation, diarrhea, fecal incontinence, nausea, vomiting, bloating, abdominal pain, early satiety, heart burn, dysphagia and regurgitation. A physician made diagnosis of irritable bowel syndrome (IBS) was recorded. Descriptive statistics were performed. Results The charts of 79 EDS patients were reviewed; 4 were excluded due to missing data. 75 patients were included in the final analysis. 93.3% of patients were female with a mean age of 36.4 +/- 12.5 years. Of these 75 patients, 43 (57.3%) had EDS-hypermobile subtype, 13 (17.3%) EDS-classic, 3 (4%) EDS-vascular, 3 (4%) unknown EDS subtype and 13 (17.3%) were categorized as having a hypermobile spectrum disorder. The most common GI symptoms observed in this patient group included abdominal pain in 85.5%, bloating in 64.4%, heartburn in 61.8%, constipation in 57.9%, nausea in 50%, diarrhea 43.4%, dysphagia in 43.4%, regurgitation in 34.2%, early satiety in 32.89%, vomiting in 30.2%,and fecal incontinence in 13.1%. It was also observed that 50.7% (n=38) had a physician made diagnosis of IBS. Of these patients with IBS, 16 (42.1%) had IBS constipation, 12 (31.5%) had IBS mixed, and 10 (26.3%) had IBS diarrhea. Conclusions Our study demonstrated that GI symptoms are common in patients with EDS. In our cohort, abdominal pain is the most commonly reported GI symptom, though other various GI symptoms are also reported in high numbers. DGBI are also common, with IBS being much more common than what has been reported in the general population. Further studies are needed to better understand the pathophysiology and impact of these GI symptoms and DGBI in patients with EDS. Funding Agencies UNH Foundation Goodhope Fund

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