Evolution of care for ostomy patients

Approximately 1 in 500 Americans live with an ostomy, and many of those are patients who have Crohn’s disease or ulcerative colitis. In patients with inflammatory bowel disease (IBD), an ostomy may be needed temporarily or permanently for a variety of reasons, including sudden, severe ulcerative colitis, perforation of the bowel, fecal diversion due to complications like fistulas, colorectal cancer, and other reasons. 

The earliest accounts of IBD date back to the late 1800s and early 1900s, but ostomy surgery dates back even farther- in fact, there are several accounts of ostomy surgery performed in the 1700s. As you can imagine, the surgery then was not what it is now. Sponges, leaves, grass, straw, and a variety of other materials were used to absorb output.

There has been a lot of research and innovation since those early days in both risk assessment, treatment of complications, and ostomy appliances:

• Researchers developed a statistical tool to estimate the risk for total proctocolectomy in ulcerative colitis patients. The model identified several risk factors, including serum albumin (prognostic laboratory marker), corticosteroid use within the past six months, presence of bowel symptoms (measured on the 9-point partial Mayo Scoring Index Assessment for Ulcerative Colitis Activity), and Mayo endoscopic score of greater than 1. The goal of using this predictive tool is to not only understand your risk of total proctocolectomy but to also empower patients to work with their providers to make informed decisions about their treatment.
• Another study looked at the management of Crohn’s disease and complications in patients with ostomies. The study found that, while ostomy construction is an effective treatment for refractory IBD, complications may occur following ostomy surgery and ileoscopy (endoscopy through the stoma) is the most important tool for disease monitoring and management. Additionally, preventative (prophylactic) medical treatment is recommended for patients at risk for disease reoccurrence or short bowel syndrome.
• An exciting innovation in ostomy appliances was published in Diseases of the Colon & Rectum in 2020. Researchers looked at common issues that patients have following ostomy surgery – high output volume, dehydration, skin issues around the stoma to name a few – and developed the Alfred: SmartBag. This appliance consists of an ostomy pouch and wafer with sensors embedded that provide continuous monitoring of ostomy output and other potential issues.

The Crohn’s & Colitis Foundation’s Surgical Research Network is dedicated to expediting clinical studies in IBD patients undergoing surgery. The focus of this network is to address important clinical issues that can advance the surgical care of IBD patients. Through our Surgical Research Network, we hope to continue to improve outcomes and quality of life for ostomy patients.