Nathalie Salvi, a 58-year-old from Alsace, spent decades dealing with severe gastrointestinal distress and medical dismissal before receiving a Crohn’s disease diagnosis in 2004, Le Parisien reported. Following multiple surgeries, including a total colectomy and the 2018 placement of a permanent digestive ostomy—a surgical opening created in the abdominal wall—she transformed the medical device into a tool for advocacy and active living.
In Plain English: The Clinical Takeaway
- Ostomy Management: A surgical diversion that reroutes waste through an abdominal opening, allowing compromised lower bowel tissue to rest and heal.
- Diagnostic Complexity: Crohn’s disease is a chronic inflammatory condition that can paradoxically present with severe chronic constipation rather than the more common symptom of diarrhea.
- Multidisciplinary Care: Complex gastrointestinal disorders often require coordinated interventions, including visceral physical therapy and specialized surgical management.
Two Decades of Diagnostic Odysseys and Surgical Interventions
Nathalie Salvi’s health challenges began in childhood with persistent abdominal pain and sluggish bowel transit. For years, medical professionals attributed her symptoms to lifestyle factors or psychological stress, advising psychiatric consultation rather than investigating organic causes. In 2004, following four years of caregiving for her ailing parents, her symptoms culminated in acute abdominal pain. A biopsy performed during hospitalization for suspected colorectal cancer finally yielded a diagnosis of Crohn’s disease, a chronic inflammatory condition of the digestive tract.
From 2004 to 2012, clinicians prescribed immunosuppressive therapies, but intestinal blockages persisted. To improve fecal flow, a gastroenterologist removed a portion of her colon in 2012. When symptoms failed to resolve, she underwent a total colectomy in 2017 to remove the entire large intestine. Because the procedure failed to eliminate severe acid irritation and extreme bowel urgency, surgical teams performed a digestive ostomy in 2018. Although initially intended as a temporary measure to allow her perineum to heal, surgeons made the stoma permanent one month later when her condition did not improve.
Salvi Founds Stomapote to Create Custom Retention Belts
Initially viewing the ostomy as a devastating constraint that threatened her active lifestyle—particularly running, which she adopted in 2004 to cope with chronic pain—Salvi eventually adapted to managing the collection pouch twice daily. In 2020, her partner, Cathy, custom-designed a stabilizing belt that allowed Salvi to complete a 10-kilometer run without discomfort. This personal adaptation catalyzed a broader entrepreneurial and advocacy initiative.
Together, Salvi and her partner founded Stomapote in 2020 to manufacture custom retention belts for ostomy patients. The enterprise aims to destigmatize the medical device by reframing it as a functional and aesthetic accessory. In France, an estimated 100,000 to 120,000 individuals live with a stomized configuration. In October, Salvi participated in the Paris Fashion Week as an ambassador for Coloplast France, modeling an ostomy pouch customized by Japanese designer Kei Hirabayashi.
Salvi Suffers from CIPO and Digestive Neuromyopathy
Despite the ostomy, Salvi continued to experience recurrent intestinal obstructions. In 2023, Prof. Benoît Coffin, a gastroenterologist at the Center for Chronic Inflammatory Bowel Diseases in Neuilly, established a comprehensive diagnosis: in addition to Crohn’s disease, she suffers from Chronic Intestinal Pseudo-Obstruction (CIPO), which causes blockages in the small intestine, alongside a digestive neuromyopathy affecting her nervous system, muscles, and intestinal tract.
| Medical Milestone | Year | Clinical Context |
|---|---|---|
| Crohn’s Diagnosis | 2004 | Identified via biopsy following acute abdominal pain; presentation characterized by chronic constipation rather than diarrhea. |
| Partial Colectomy | 2012 | Surgical removal of a portion of the colon to facilitate stool passage. |
| Total Colectomy | 2017 | Ablation of the entire large intestine. |
| Permanent Ostomy | 2018 | Surgical creation of an abdominal stoma to divert waste from the rectum. |
| CIPO Diagnosis | 2023 | Identified by Prof. Benoît Coffin, adding Chronic Intestinal Pseudo-Obstruction and digestive neuromyopathy to her clinical profile. |
Her current clinical management requires daily visceral physical therapy sessions to stimulate her stomach, digestive tract, and small intestine. Due to secondary osteoporosis, she has replaced running with short cycling sessions and adheres to restricted portion sizes. Alongside her medical regimen, she earned a university diploma as a partner patient to improve communication between healthcare professionals and ostomy patients, and she co-founded the Stomi’Potes association to prevent patient isolation.
Future Horizons and Mobile Advocacy
Salvi’s ongoing care highlights the complexities of managing overlapping autoimmune and motility disorders of the gastrointestinal tract. Her transition from medical isolation to public advocacy shows how patient-led device customization and peer support networks help. Looking ahead, Salvi and her partner plan to launch “La planque à poche itinérante” in 2027, a mobile van initiative designed to travel across France and directly manufacture custom ostomy belts for patients in their homes.
References
- Le Parisien. “La renaissance de Nathalie, atteinte de la maladie de Crohn : « Cette poche m’a sauvé la vie.”
