Ulcerative Colitis: When Surgery Must Be Considered

"Medical Journeys" is a set of clinical resources reviewed by physicians, meant for the medical team as well as the patients they serve. Each episode of this 12-part journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.

For a minority of patients with ulcerative colitis (UC), a time will come when the treatments described thus far in this series no longer keep the symptoms under adequate control. All is not lost, however: surgery to remove the affected portions of the colon is an effective therapy, albeit with risks and tradeoffs.

In fact, nowadays only a small minority of UC patients eventually require surgery. Swiss registry data covering all patients with inflammatory bowel disease diagnosed from 2006 onward, analyzed in 2018, indicated that only 9.2% of UC patients underwent colectomy. A 2015 study of U.S. Medicare and Medicaid records from 2000 to 2011 pointed to an even lower percentage: of some 33,000 patients with advanced UC, just 830 (2.5%) chose to have colectomies.

That's in contrast to previous eras. Until about 30 years ago, something like one-quarter of UC patients ended up on the operating table within 10 years of diagnosis. The advent of effective drugs, including the newer biologic agents, has allowed most patients to get along with medical therapy alone.

But there is still that small minority of patients who lose symptom control or never attain it after trying different drug regimens. These patients now face the choice of surgery or living with their symptoms. (Indeed, some patients may actually prefer the knife early on, and its promise of a permanent solution, to indefinite drug therapy for which outcomes can't be fully predicted.)

Who Are Candidates for Surgery?

In 2014, the American Society of Colon and Rectal Surgeons issued a practice parameter on surgical treatment for UC, which included guidance on patient selection. The most obvious candidates are those in whom colonic perforation has occurred or is believed to be imminent (as in toxic megacolon, in which the colon becomes enormously bloated to the point of rupture). Since perforation often leads to sepsis, it is an emergency situation that requires immediate surgery. Development of strictures in the colon is another indication for surgery.

Less urgent are those UC patients who are unable to achieve remission despite drug therapy and diet management. The guideline also noted that some patients may get their symptoms under control but find the drugs' side effects intolerable -- this is another group for whom surgery may be an option.

Because colorectal cancer is more common in UC patients than in the general population, it's recommended that UC patients with disease involving more than the rectum be a part of a colonoscopy surveillance program. Prior guidelines recommended that any patients with dysplasia be referred for colectomy; however, more improvements in high-resolution endoscopy, chromoendoscopy, and endoscopic mucosal resection/endoscopic submucosal dissection have shifted the practice where patients with endoscopically resectable dysplasia may be candidates for endoscopic removal rather than total colectomy.

In the American College of Gastroenterology's most recent guideline on UC management, the group stressed that delaying surgery when it's clearly called for carries its own risks: complications are more common and more severe (for example, if toxic megacolon proceeds to rupture because surgery was postponed).

What Does Surgery Entail?

A hundred years ago, various types of "ostomies" were performed, including cecostomy, appendicostomy, and ileostomy. In many of these cases, the colon was left in place in hopes that, with "rest," it would heal itself when it didn't have to cope with the digestive stream; if that appeared to happen, the ostomy was closed and regular bowel flow could resume.

In most cases where colectomy is indicated, a total proctocolectomy will be recommended as recurrence of colitis or cancer risk will remain if any residual colonic mucosa is left in place. Rather than a permanent ileostomy, most UC patients will be candidates for the J-pouch procedure.

More formally known as proctocolectomy with ileal pouch-anal anastomosis, it involves removing the colon and rectum while forming a pouch resembling the letter J at the end of the small intestine. The pouch is then connected to the anus. An ileostomy is placed temporarily, with the digestive stream passing into an external bag, while the pouch heals. After 2-3 months, the ileostomy is closed and waste then passes directly from the pouch to the anus.

However, not all UC patients are suitable for the J-pouch. The main alternative is a total proctocolectomy in which the entire colon including the anus is removed and a permanent ileostomy is performed.

Both types of procedure can now be performed laparoscopically, minimizing scarring as well as infection risk.

Patients will need education about what to expect from surgery. With the J-pouch procedure, most patients produce six to eight bowel movements per day, usually with at least one at night, according to the Crohn's & Colitis Foundation. Of course, an ileostomy bag must be emptied numerous times daily.

Both procedures carry risks of complications including infections associated with the surgery itself and with the ileostomy. Sometimes the pouch becomes inflamed ("pouchitis"); if it doesn't resolve either on its own or with treatment (typically with antibiotics), it may be necessary to revert to a permanent ileostomy. Also, because of the proximity to nerves serving the pelvic region and legs, nerve damage may occur during the procedures, leading to sexual dysfunction and urinary incontinence or retention.

How Effective Is Surgery?

According to the Mayo Clinic, about 90% of patients undergoing the J-pouch procedure say they are satisfied with the results. As well, multinational survey data from 2015 indicated that 84% of patients reported improved quality of life. Yet the same survey also found that nearly as many complained of problems related to work, dietary restrictions, sexual function, body image, and mental health following surgery.

Earlier, we mentioned a study of Medicare-Medicaid data on elective procedures. That study's main goal was to compare long-term mortality from surgery versus medical therapy for advanced UC. The researchers found considerably improved survival with surgery, with a hazard ratio of 0.67 relative to patients choosing drug therapy (95% CI 0.52-0.87). Of course, the study came with limitations, chief among them that it only examined elective colectomy, not those performed on an emergency basis, and nearly two-thirds of patients were 65 or older. Other studies indicate that the average surgical patient is in his/her 40s.

The authors of the study suggested that, given the apparent survival advantage for surgery, discussions of this treatment option should perhaps begin earlier than is common in standard practice. "Traditionally, providers have assumed that patients with UC desire to avoid colectomy given resulting changes in quality of life," the team wrote. "Discussions of surgical options for UC are therefore often not initiated or are initiated only when all other medical therapies have failed."

Instead, the investigators called for "earlier and more informed discussions about surgical options for UC to improve shared decision making."

Next up: Long-Term Complications of UC

Read previous installments in this Medical Journeys series:

Part 1: UC: Understanding the Epidemiology and Pathophysiology

Part 2: UC: Symptoms, Exams, Diagnosis

Part 3: UC: How and Why Does It Arise?

Part 4: Case Study: Why Is This Teen's Ulcerative Colitis So Severe, So Resistant?

Part 5: UC: Initial Treatments and Response Monitoring

Part 6: UC: Dietary and Lifestyle Interventions

Part 7: Ulcerative Colitis: Second-Line Treatments

Part 8: Case Study: Painful Distended Abdomen and Weight Loss -- What Is the Cause?

Part 9: Ulcerative Colitis: Helping Patients Live With Chronic Disease