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Expert Critique

FROM THE ASCO Reading Room

Melinda Engevik, PhD Postdoctoral Fellow Baylor College of Medicine

Crohn's disease (CD) is a chronic gastrointestinal (GI) inflammatory disease that can lead to irreversible bowel damage. CD is considered to be a progressive disease with initially mild symptoms that gradually worsen. Disease progression frequently produces structural GI damage. Despite improved treatments for inflammatory bowel disease (IBD) in general, a large number of CD patients will require surgical interventions, which is frequently associated with some loss of organ function. Recent reports have estimated that 70% to 80% of CD patients will need surgery at some point. Moreover, approximately one third of CD patients will not respond to existing treatments and will require a stoma. This outcome is considered undesirable, as many patients find that stomas exacerbate IBD-related pain, anxiety, and depression. These problems highlight the need to identify not only targets of remission, but also therapeutics that promote mucosal healing to prevent structural gut wall damage. In the meantime, strategies exist for coping with the daily challenges of stoma care, including support groups and educational materials. These topics need to be openly and clearly communicated to patients in an effort to minimize the stigma of living with a stoma.

Full Critique

The past 30 years have seen a major shift toward avoiding surgery and preserving intestinal tissue in inflammatory bowel disease (IBD). But despite the ever-expanding arsenal of medications, clear indications still exist for the operative management of IBD and its complications, including at least temporary ostomies.

According to a 2011 70% to 80% of Crohn's disease patients will need surgery at some point -- versus 30% for ulcerative colitis, and more than 10% of patients with severe chronic disabling active perianal disease will require permanent stomas.

"We've finally recognized that Crohn's is a progressive disease, and about 15% of patients will have fistulas or penetrating perianal disease," James F. Marion, MD, of Mount Sinai Hospital in New York City, told 妖姬直播. "Before the era of biologics, we didn't have much control over preventing these complications, so often these patients were on a conveyor belt to some sort of diversion." While a sizable portion of contemporary patients with Crohn's disease can avoid surgery, a few decades ago many patients faced disfiguring surgery with total proctocolectomies and permanent ileostomies.

"If someone today has the [Crohn's disease] phenotype with perirectal complications, clinicians will now promptly recommend biologics to prevent progression," Marion explained. "That being said, even the best therapies simply don't work in about a third of patients, and these will require at least a temporary ileostomy or sometimes colostomy."

According to Marion, surgery rates for Crohn's disease are "still stubbornly high," and a considerable number of patients will progress to needing diversion surgery, usually because of perirectal involvement. But nowadays only 10-20% of those with fistulas will get to that point after all medical therapies have failed, and today's single-port laparoscopic surgery is far less drastic and disfiguring.

"So talking about the sum total, only about 1% to 5% of our patients need to worry about the eventuality of even a temporary diversion ostomy. If a post-resection anastomosis looks fragile or there are other fistulas, surgeons will give a 12-week temporary ostomy and reverse it after 3 months. While ostomies are relatively unusual, the problem is that on the internet ostomy is probably the first thing that comes up," he said, stressing the need to reassure patients facing IBD surgery: "There's a real dread and fear that they will require a stoma."

He finds he finds it reassuring to patients when he compares ostomies to temporary traffic detours around roads undergoing repairs.

In ulcerative colitis, surgery rates have also fallen, and restorative ileoproctocolectomy, with a 12-week ostomy as needed, has in many cases eliminated the need for permanent stomas with appliances and bags.

But despite surgical advances and better pain control, for many IBD patients even a temporary stoma intensifies the psychological suffering of bowel disease.

In a of patients with intestinal stomas, respondents reported severe stress arising from such challenges as skin irritation (76%), pouch leakage (62%), offensive odor (59%), reduction in pleasurable activities (54%), and depression/anxiety (53%). One in five patients said that they did not seek help for such postsurgical difficulties. Some patients report distress when in the company of others because of embarrassing intestinal noise, gas, and foul breath.

A of 707 Crohn's disease and 520 ulcerative colitis patients who did not have depression before undergoing bowel resection found a 16% rate of depression in the former and 11% in the latter. And those who developed depression were significantly more likely to have a stoma than those without (27% versus 15%). The risk of depression 5 years after stoma surgery was 31%, compared with 19% in those who never underwent ostomy.

In terms of daily life, post-ostomy challenges affect most aspects of living -- from travel and socializing to intimate relations, and physical activity. In addition, stoma patients whose faith systems require before religious observance have expressed reluctance about entering their places of worship.

Body image issues also trouble some patients, but has found, interestingly, that body image pre-ostomy predicts response to stoma and often improves over time.

Undergoing ostomy and coping daily with stoma care still pose challenges, but even decades ago, when drastic surgery was the gold standard, these concerns did not prevent public figures from living productive lives in the spotlight -- President Dwight Eisenhower, Vice-President Hubert Humphrey, Speaker of the House 'Tip' O'Neill, former Israeli Defense Minister Moshe Dayan, and Queen Elizabeth The Queen Mother of Great Britain, to name

Patient support groups and educational materials as supplied by the are recommended for ostomy patients, and they should also have ready access to psychological care. If the latter is important for IBD patients in general, it is especially so for those with stomas.