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Background: Fecal incontinence affects over 50% of patients with systemic sclerosis and has a major impact on morbidity and mortality. Often, given the complexity of patients with SSc, patients are directed back to rheumatologists for the management of their gastrointestinal issues. As a result, it is important for rheumatologists to have guidance on how to approach the assessment and management of this debilitating issue.
Objectives: To produce ‘real-world’ recommendations for the assessment and management of fecal incontinence in patients with SSc.
Methods: An international, multidisciplinary Steering Board (SB) was assembled consisting of clinicians (rheumatology, gastroenterology and GI surgeons), and with expert methodological expertise, and patient representation. Initial recommendations were drafted/agreed by the SB based on a comprehensive literature review and expert opinion. An online voting round was conducted to decide on whether items should be accepted (≥75% SB agreement).
Results: There was a good response/completion rate for the provisional recommendations (n=12/18, 67%). The majority (21/22, 95%) of recommendations received final approval for inclusion. We currently present the approved recommendations for the assessment and management of fecal incontinence in systemic sclerosis.
Overarching principles
Consider asking patients about FI throughout the course of SSc, although SSc-FI is more likely in patients with a longer disease duration. (100%)
In patients with SSc-FI, an experienced multi-disciplinary team, including colleagues from rheumatology, gastroenterology, dieticians/nutritionists, specialist nursing, pelvic PT, and/or GI surgery, should be involved in management. (100%)
Upon assessment, the psychosocial, social, and economic impacts of SSc-FI should be considered and strategically addressed. (100%)
Clinical Assessment
A comprehensive history is essential in the initial assessment of all patients with SSc-FI. (100%)
A structured and detailed interview is required to identify and classify the type of FI: (100%)
In patients with SSc-FI, screen for and treat co-existing diarrhoea, if present. (100%)
Address the underlying cause(s) of diarrhea – scleroderma and non-scleroderma-related
Consider mechanisms that might impact treatment choice (e.g., SIBO, bile acid malabsorption)
Determine whether prolapse is present and whether there is a relationship with the onset of FI symptoms. (100%)
Gather evidence of pelvic floor weakness which may contribute to FI, such as history of vaginal deliveries and/or pelvic surgeries. (91.7%)
Assess diet, medications, and other potential environmental contributors. (100%)
Objective investigations should be tailored to the patient based on the comprehensive clinical assessment and likely mechanistic driver/s of SSc-FI. (100%)
Interventions
Identify and treat contributing factors. When diarrhea co-exists, controlling diarrheal symptoms should be the initial priority. (100%)
In patients with FI in the context of bloating and diarrhea, a trial of probiotics may be considered (66.7%)
High-impact, low-cost, non-pharmacological management strategies are important first-line interventions in all patients with SSc-FI (100%)
Consider the role of nutritional modifications where relevant. (100%)
Consider and prioritize pelvic physical therapy upfront for SSc-FI attributable to pelvic floor weakness before testing, as patients often improve and risk is minimal (if any) (100%)
If overflow diarrhea is the issue and slow colonic transit is present, consider a trial of prokinetics (e.g., prucalopride or pyridostigmine). (83.3%)
If slow colonic transit is not an issue, consider a trial of other medications (e.g., secretagogues, such as linaclotide, lubiprostone, plecanatide) to help alleviate stool burden. (75%)
Transanal irrigation may be considered in selected patients with passive SSc-FI (83.3%)
Medications that slow bowel motility are not recommended for the management of SSc-FI, including opioid-based medications, as they predispose to pseudo-obstruction and should be used sparingly in SSc. Some patients report benefits from limited as-needed use of anti-diarrheal medications (e.g., for social functions) (91.7%)
There is currently no role for the generalized use of immunosuppression for SSc-FI. (91.7%)
Percutaneous tibial nerve stimulation may be helpful in some patients with refractory SSc-FI and is generally well-tolerated. Other minimally invasive procedures for SSc-FI are not currently recommended (83.3%)
Surgery should be considered as a last resort for SSc-FI patients with severe refractory symptoms (100%)
Conclusion: We present provisional recommendations for the evaluation and management of fecal incontinence in SSc. Only minimal refinement and voting is required to finalize these practical recommendations. Our collegiate approach will provide guidance for clinical practice and also inform a future research agenda.
REFERENCES: [1] Bandini G, et al Significant gastrointestinal unmet needs in patients with systemic sclerosis: insights from a large international patient survey. Rheumatology 2024;3:e92–3.
[2] Lescoat A, Zimmermann F, Murray CD, Khanna D, Hughes M, McMahan ZH. Systemic sclerosis-related fecal incontinence: a scoping review focusing on a neglected manifestation. Rheumatology (Oxford). 2024 Dec 18:keae691.
Acknowledgements: This work was supported by the WSF Gastrointestinal ad hoc committee.
Disclosure of Interests: Zsuzsanna McMahan: None declared. Maria Cristina De Santis: None declared. Anna Lo Cricchio: None declared. Luis Alcala-Gonzalez: None declared. John Clarke: None declared. Alexander O’Connor: None declared. Silvia Bellando-Randone: None declared. Christopher Denton: None declared. Ilaria Galetti: None declared. Alain Lescoat: None declared. Marco Matucci-Cerinic: None declared. Pietro Matucci Cerinic: None declared. John Mclaughlin: None declared. Charles Murray: None declared. Elizabeth R Volkmann Boehringer Ingelheim (Unbranded, disease state), AbbVie, Boehringer Ingelheim, GSK, Astrazeneca, Atyr Pharma, Boehringer Ingelheim, GSK, Horizon, Kadmon, Prometheus, Alessia Alunno: None declared. Giulia Bandini: None declared. Michael Hughes: None declared.
© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (