How is Ostomy diagnosed?

An ostomy is not a disease itself, but a surgically created opening (stoma) in the body that allows for the passage of waste; therefore, it is "diagnosed" by identifying the underlying chronic condition—such as Crohn’s disease, ulcerative colitis, or colorectal cancer—that necessitates the procedure. The diagnostic process involves clinical evaluation, imaging, and biopsy to confirm the primary pathology, followed by a surgical consultation to determine if an ostomy is the medically appropriate treatment.

How is the need for an ostomy determined?

The decision to perform an ostomy is reached after a comprehensive diagnostic workup for the underlying disease. Specialists, typically gastroenterologists or oncologists, identify conditions where the bowel or bladder can no longer function normally or safely. In the DiseaseMaps community, 286 people living with an ostomy have shared how their journey often began with years of symptoms before a definitive diagnosis of an underlying condition, such as inflammatory bowel disease, was finally reached.

What diagnostic steps lead to an ostomy procedure?

Because an ostomy is a surgical intervention rather than a primary diagnosis, the medical team must perform rigorous testing to confirm the necessity of the surgery. Common diagnostic steps include:

• Endoscopy/Colonoscopy: Direct visualization of the digestive tract to identify inflammation, strictures, or tumors.


• Imaging Studies: CT scans or MRIs to assess the extent of disease or structural blockages.


• Biopsy: Histological examination of tissue to confirm specific diseases like cancer or severe ulcerative colitis.


• Surgical Consultation: A colorectal surgeon evaluates the patient to determine if an ostomy is the best path for long-term health and quality of life.

Why is the diagnostic journey often difficult?

Many patients face a "diagnostic odyssey" where symptoms are initially dismissed or misdiagnosed as minor gastrointestinal issues. For those who eventually require an ostomy, this delay can be physically and emotionally taxing. It is vital to seek out a board-certified colorectal surgeon or a specialized gastroenterologist who understands the complexities of the disease necessitating the ostomy. If your current provider is unfamiliar with your specific condition, do not hesitate to seek a second opinion at a major research center.

Next steps

• Consult with a board-certified colorectal surgeon to discuss if an ostomy is appropriate for your diagnosis.


• Connect with the 286 members of the DiseaseMaps community to share experiences and peer support.


• Review resources from the United Ostomy Associations of America (UOAA) for pre- and post-operative guidance.

Medical disclaimer: This content is for informational purposes only and does not substitute professional medical advice, diagnosis, or treatment.

References

• NIH National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)


• United Ostomy Associations of America (UOAA)


• Crohn’s & Colitis Foundation


• American Society of Colon and Rectal Surgeons (ASCRS)