For as long as she could, Stephanie Hughes, 29, of Raleigh, North Carolina, delayed having colon surgery. Symptoms from Crohn’s disease — an inflammatory bowel disease that causes abdominal pain, severe diarrhea, fatigue and even malnutrition — kept getting worse, but she wasn’t prepared to live with an ostomy and wear a collection bag. Even so, her medical options were dwindling. In May 2012, Hughes underwent surgery and received a permanent ostomy. And very soon — to her surprise — life got much better.
About Ostomies
Colectomy is surgery to remove the colon, either partially or completely. The colon, or large intestine, is part of the digestive system. When it’s removed, the remaining sections are reconnected, sometimes with a new route for waste to escape from the body.
An ostomy is an opening in the body, created by colon surgery. The opening is made in the abdomen. The stoma is the small end portion of the intestine that’s brought to the abdominal surface and is visible. People with stomas learn to use a pouching system — a collection bag, which attaches to a protective skin barrier and is fitted around the stoma.
More than 750,000 Americans have an ostomy, according to the United Ostomy Associations of America. Ostomies can be temporary or permanent.
Before Hughes had her procedure, she did some research and talked with others who’d already been through it, which helped clear away misconceptions. An ostomy isn’t obvious, she learned. “It’s not this big, bulky thing hanging off of you,” she says. “Many people who have one have been able to keep it a secret, because it really is very discreet with a lot of appliances they have today.”
Why Colectomy?
People have their colon removed for a variety of reasons. Emergencies such as complete bowel obstruction or uncontrolled bleeding many require colectomy. Diseases that can lead to colectomy include colon or rectal cancer, inflammatory bowel disease such as Crohn’s or ulcerative colitis, and diverticulitis, which involves inflammation of bulging sacs near the colon wall. Some patients with genetic conditions that raise their risk for colon cancer choose preventive colectomy.
Sometimes, anatomical location — like a low-rectal cancer — dictates the need for colostomy, says Dr. Neil Hyman, a professor of surgery and section chief of colon and rectal surgery with University of Chicago Medicine. Other times, he says, it’s not advisable to join the bowel back together, if patients would be left with poor bowel control or leaked stool. In many cases, he says, colostomy can preserve or restore quality of life.
Safety is a priority in the decision. For example, Hyman says, a patient with diverticulitis involving infection and a perforated colon would do better with a temporary colostomy to allow healing.
Before surgery, he suggests, ask your doctor the following: How long will I be in the hospital? How long will it take to recover? What are the common risks involved? Which technique — a laparoscopic procedure, standard open surgery or robotic surgery — is right for me? What will my bowel function be like?
“Colectomy is a very common operation — with lots of risks,” Hyman says. “There are a lot of complications associated with it, because the colon’s dirty.” Infections and leaks at the surgical site are an issue. Serious leaks may require reoperation, he says, usually with a colostomy.
A recent study of more than 13,000 U.S. colectomy patients found an overall leak rate of about 4 percent at the surgical site, with a higher risk of death among patients who experienced leaks.
However, colectomy is often a lifesaving and life-changing procedure. And patients can do anything they want afterward, Hyman notes. Colostomy appliances are clean, closed systems. People can go swimming at the pool or beach or jump in the hot tub. For extra coverage, women may opt for a one-piece swimsuit and men may decide to wear a T-shirt with their bathing suit — or not. Doctors advise avoiding situps or lifting anything heavy for several weeks after surgery. Otherwise, patients can ramp up their endurance, balance and strength by walking, jogging, yoga and other types of exercise.
New Normal
Ken Aukett, co-founder of the UOAA, has had his ostomy for 42 years. Aukett, who lives in Westmont, New Jersey, was diagnosed with ulcerative colitis since he was 11 and was operated on at 33.
“At the time I was so happy to know my ulcerative colitis was going to be a thing of the past,” he says. “All the problems with continually going to the bathroom and urgency. This was actually a lifesaving procedure that I looked forward to.”
Body image can be a major concern, Aukett admits. Self-acceptance is the first step. “People aren’t going to criticize or judge you by the way you go to the bathroom,” he says. “You haven’t changed — you’re still the person you were before.”
He’s troubled that misconceptions make people put off needed surgery. In his case, extra years of medical treatment with steroids left him with debilitating arthritis and other side effects.
For Aukett, colon surgery meant a new beginning. He met his wife while both were doing volunteer work in support of ostomates. Before her death two years ago, he says, Linda Aukett helped reform airport screening procedures for people with ostomies. Now they can pass through the same screening devices as other travelers instead of partially undressing in a backroom.
Owning Your Ostomy
Specialists called wound, ostomy and continence nurses help patients before and after surgery. That includes determining the best ostomy site, one patients can easily see and work with, says Debra Netsch, a nurse practitioner and WOC with Ridgeview Medical Center in Waconia, Minnesota.
WOC nurses educate patients and make sure they’re fitted with the right equipment, can troubleshoot problems, understand how to care for their skin and have ongoing support at home, says Netsch, who is also a co-director of webWOC. Patients can locate an ostomy specialist through the Wound, Ostomy and Continence Nurses Society.
Diet is part of the discussion. “The longer people have their stoma, the more foods they tolerate,” Netsch says. Certain foods are known to cause gas and odor. “I always kind of joke and say, “Don’t eat onions and baked beans and go to a wedding or church,” she says. “You want to have them after.”
She finds it satisfying to see patients gain confidence. “It’s fun for us when a patient comes back in and says, ‘That’s not how I do it; I do it this way,'” Netsch says. “It’s working well for them — we love that. They’re taking ownership of their ostomy, of their own body.”
Lifestyle is not limited by ostomy. People parachute and scuba dive, Netsch says. They continue working as firefighters, police officers and professional football players (maybe with some extra protection to the stoma).
Anything You Want
Hughes says for her, the learning curve for dealing with an ostomy and supplies took about three months. But surgical recovery was rapid. In the next few weeks she used newfound energy to redo her bathroom. Five months after her surgery, she competed in her first triathlon, including training in a swimming pool. Hughes is entirely open about her ostomy on her Stolen Colon blog, which includes photos of her pregnant belly — she’s due to have a baby in July.
Friends and family have been completely supportive, Hughes says. “For me, having [colon surgery] turned out to be one of the best decisions I ever made in my life,” she says. “Almost immediately, it completely turned everything around.”
More from U.S. News
8 Questions to Ask Your Doctor About Colon Cancer
10 Lessons From Empowered Patients
How to Be a Good Patient Wingman
Life After Colectomy originally appeared on usnews.com
