After months of stomach cramping that left her crying in pain, Katie Tricarichi, saw a doctor. She had a colonoscopy on her 16th birthday. Two days later, she got the diagnosis -- Crohn's disease.
Crohn's disease is an inflammatory bowel disease (IBD) that causes diarrhea, cramping, and loss of appetite. In severe cases, it can lead to malnutrition. Crohn's can affect any part of the digestive tract, but it often affects the small intestines or colon.
Tricarichi's treatment started with a number of medications that she took for four years. "Then I developed a fistula [an abnormal connection] between my bladder and my ileum," she says. "The fistula went undiagnosed for almost six months. By the time it was found, I needed emergency surgery."
The surgery involved a small bowel resection. Surgeons removed 12 inches of her small intestine and the first inch and a half of her colon. They also took out part of her bladder and repaired a hole on the top of her uterus.
For Tricarichi, who is now the walk director of the Crohn's and Colitis Foundation of America, the surgery for Crohn's changed her life.
"It gave me six blissful, almost Crohn's-free years before I had an active flare," she says.
Eight years later, Tricarichi takes similar medications to the ones she was on when she was first diagnosed. About her surgery, she has no regrets.
"I do believe Crohn's surgery should only be used when medication fails, but it was definitely the best decision for me," she says. "The surgery saved my life."
Tricarichi's story mirrors that of many people with Crohn's disease. Many have surgery only for an emergency or when other treatments fail. Almost 3 out of 4 people with Crohn's will need some kind of surgery eventually. Most get relief from symptoms for a while, and some can go off a few or all of their medications, at least temporarily.
"Surgery gets rid of the diseased bowel," says colorectal surgeon Jon Vogel, MD, of the Cleveland Clinic. Vogel says surgery can help people eat and drink without pain. It also frequently eliminates the need for ongoing medications. "For all these reasons, surgery for Crohn's improves quality of life," he says.
At the same time, medications for IBD are also getting better, with the development of biologics and other drugs that suppress an overactive immune system. "Crohn's disease medications improve quality of life for some people," Talamini says.
People considering Crohn's surgery should be cautiously optimistic, however.
"Surgery doesn't cure Crohn's disease," says Mark Talamini, MD. Talamini is chairman of surgery at The University of California, San Diego. Half of people who have one surgery require a second procedure or more. Tricarichi is a prime example. Her Crohn's disease is no longer in remission, and she may need additional surgery down the road.
Reasons for Crohn's Surgery
For most people with Crohn's, symptoms get worse over time. In emergency situations, surgery is the only option.
The most common reason for surgery in people with Crohn's disease is a partial bowel obstruction. An obstruction can get worse gradually or happen quickly and be an emergency.
"Segments of bowel in Crohn's disease go through cycles of inflammation and repair," Talamini explains. "Over time, these pieces of bowel become hard, like a lead pipe. People with obstructions may experience vomiting, distention, and abdominal pain when they eat." When bowel obstruction sets in, surgery is in order.
Other reasons for Crohn's surgery include a fistula, bleeding, perforation, or abscess.
Types of Surgery for Crohn's
There are two main surgeries for Crohn's disease: bowel resection and stricturoplasty. Both can be done laproscopically or through an open abdominal incision.
Bowel resection: A bowel resection involves removing the diseased part of the intestines. It is the most common operation for a bowel obstruction caused by Crohn's disease. It's also done to correct a fistula that doesn't respond to medication.
Colectomy: If Crohn's disease is severe and affects the colon, some people may need to have their entire colon removed, called a colectomy. In some cases, the small intestine can be connected to the rectum, so the person can pass stool normally.
Proctocolectomy: In some cases, both the colon and rectum will need to be removed. The surgeon also performs an ileostomy, which brings the end of the small intestine through a hole in the abdomen, called a stoma. Waste is collected in a bag attached to the stoma, which is emptied several times a day. The bag is hidden under clothing, so no one will see it.
Stricturoplasty: Stricturoplasty is done to open up narrowed areas of the small intestine. It doesn't remove any part of the small intestine. However, sometimes with strictures, a bowel resection may be necessary.
With surgery for Crohn's, surgeons aim to do as little as necessary to obtain the best results. "People with Crohn's disease tend to need multiple operations; therefore, we preserve as much bowel as we can each time," Talamini says.
A Question of Benefits and Risks
In most cases, Crohn's surgery is done to improve quality of life. "In these cases, we decide to do surgery only after weighing benefits and risks," Talamini says.
If you are considering surgery, make sure your gastroenterologist and surgeon work together to come up with the right treatment combination for you.
Both operations for Crohn's disease generally involve a few weeks of recovery. Like all surgeries, they also come with risks. "Surgery on the intestines can lead to complications such as leakage from the bowel; infection in the abdomen or surgical wound; blood clots in the extremities; or a temporary bowel blockage called an ileus," Vogel says.
In addition, some people may experience "short-gut syndrome." With this condition, the intestine is too short to absorb all the nutrients a person needs.
Laproscopy for Crohn's
Crohn's surgery used to involve an open abdominal incision and six weeks of recovery. Today, surgery may be done laparoscopically. "Typical procedures take one to three hours and require three to seven days of recovery in the hospital," Vogel says.
People who have laparoscopic surgery for Crohn's can usually return to their normal activities in just a few weeks. "These new techniques are safe and effective. And they are constantly being refined to limit post-op pain and shorten hospital stays," Vogel says.
Most people with Crohn's disease are good candidates for laparoscopic procedures. "The only exceptions are those who have had many operations and are known to have significant adhesions [scar tissue] in their belly," Talamini says.
Talamini points out that many people with Crohn's are like Tricarichi: They don't fit the mold of the typical surgical patient.
"People with Crohn's disease are typically young and ramping up their careers and lives," he says. "Therefore, having the option of surgery that is less invasive (physically, socially, and professionally) is important."
Talamini adds that better tools and experience with laparoscopic techniques are on the horizon. "So more people with Crohn's disease will be able to take advantage of these approaches."