Removing the Colon: Surgical Options and Opportunities
Proctocolectomy -- surgical removal of the colon and rectum -- isn't anyone's first choice for treating inflammatory bowel disease (IBD), but sometimes it could be your best option. With the colon gone, another route is needed for passing solid waste from the body. The two main options are an ileostomy, a surgically created opening in the abdominal wall through which stool can pass, or an ileoanal pouch anal anastomosis (IPAA), the creation of an internal pouch that's connected to the anus, allowing stool to pass through the natural opening. According to the National Digestive Diseases Information Clearinghouse, about 25% to 40% of people with ulcerative colitis eventually require a proctocolectomy, and some people with extensive Crohn's disease affecting the colon need to have their entire colon removed as well.
If your doctor has suggested a proctocolectomy, or if you're just wondering whether you might need one someday, you probably have lots of questions -- both about the surgery itself and about life afterward. Below are answers to some of the most frequently asked questions. You just might be surprised by what you find out. The health benefits can be great, and the change in private life is often less drastic than expected.
"I certainly don't want to trivialize the procedure," says Janice Rafferty, M.D., chief of the Division of Colon and Rectal Surgery at the University of Cincinnati College of Medicine. "But it really boils down to a different way to have a bowel movement." Dr. Rafferty says that one of the most common remarks she hears from her patients after surgery is that they wish they'd done it sooner.
What Does Surgery Involve?
Proctocolectomy with a permanent ileostomy is an old standby surgery that's still widely used with excellent results. In this procedure, the entire colon, rectum, and anus are removed. The end of the small bowel is then brought through the abdominal wall to create an opening -- usually on the right lower abdomen just below the belt line, where it's easily accessible. Liquid stool passes through this opening into an external appliance with pouches that can be replaced or emptied as needed. The appliance is odor-free and comes in various styles to fit an individual's lifestyle and needs.
An IPAA is a popular alternative to a permanent ileostomy. In this procedure, the colon and rectum are still removed, but the anus is preserved. The lower end of the small bowel is fashioned into an internal pouch that is pulled down and attached to the anus. Stool can then be stored in the pouch and passed through the anus in the usual manner, although the bowel movements are frequent and soft.
IPAA surgery is usually performed as a two-stage procedure. In the first stage, the pouch is formed and connected to the anus. However, stool isn't stored in the pouch yet, but rather is diverted through a temporary ileostomy while the pouch heals. Six to 12 weeks later, the ileostomy is closed, the pouch begins functioning, and stool starts being passed through the anus.
Some IPAA patients are able to skip the temporary ileostomy stage, but they need to be carefully selected. To be considered, patients generally must start out in good nutritional shape and not be taking steroids or immunosuppressants. The surgery also must go smoothly, without too much blood loss or the need for excessive tension to make the pouch reach the anus. In addition, patients must understand that recovery time may be increased when they skip the ileostomy stage, due to very frequent bowel movements in the early days after surgery. Some people who initially take this route develop a leak at the site where the pouch is joined to the anus and have to undergo another surgery to get an ileostomy after all.
When Is Surgery Necessary?
People with ulcerative colitis who need a proctocolectomy may get either a permanent ileostomy or an IPAA along with it. If you have ulcerative colitis, "you need to start thinking about elective surgery if your medicines aren't working to control your symptoms, or if you have precancerous changes in your colon," says Dr. Rafferty. "You might also want to think ahead if you've had ulcerative colitis for more than 10 years, because your risk of colorectal cancer goes up significantly after that time." (Visit www.crohnscolitisfoundation.org for much more information and resources, including a Webcast, on the connection between IBD and colorectal cancer.) Additionally, emergency surgery is sometimes necessary to treat life-threatening complications of the disease, such as massive bleeding or rupture of the colon.
People with Crohn's disease often don't need a full proctocolectomy. In many cases, the surgeon can remove just a diseased section of bowel, reconnecting the parts that remain so that they function in the usual manner. But if the whole colon does need to be removed due to widespread disease there, a permanent ileostomy is the only option. An IPAA isn't appropriate for people with Crohn's disease, because they're at high risk for complications such as disease recurrences, fistulas, abscesses, and strictures, that prevent the pouch from functioning as intended.
What Are the Benefits of Surgery?
For people with ulcerative colitis, a proctocolectomy cures their disease. Of course, they still must live with an ileostomy or IPAA for the rest of their lives. But this isn't as difficult an adjustment as some people fear, and the inconvenience is usually more than offset by having their health back again.
For those with Crohn's disease, the tradeoffs are a little more complicated. Even after the whole colon is removed, it's still possible for the disease to recur, often at the end of the small bowel next to the ileostomy. However, recurrences are less likely with an ileostomy than with less extensive operations. In many cases, surgery provides long-term relief of symptoms and reduces or eliminates the need for future medication.
Which is Better: IPAA or Ileostomy?
Today, an IPAA is the procedure of choice for many ulcerative colitis patients who need a proctocolectomy. The big advantage of an IPAA is that it allows people to keep having bowel movements through the anus. Typically, they defecate about six times a day, and the stool has a soft, putty-like texture. On the downside, problems sometimes develop with the pouch. One possible complication is pouchitis, an inflammation of the pouch that can cause diarrhea and abdominal cramps as well as whole-body symptoms, such as fever, dehydration, and joint pain. The inflammation is treated with antibiotics.
Another potential complication of an IPAA is bowel obstruction, or blockage, which leads to crampy abdominal pain with nausea and vomiting. This problem can usually be treated with bowel rest and intravenous fluids. However, about one-third of people who develop a bowel obstruction need surgery to correct it. Also, in 8% to 10% of people who get an IPAA, the pouch doesn't function properly and has to be removed. When this happens, surgical conversion to an ileostomy is necessary.
An IPAA isn't right for everyone. A permanent ileostomy may be the best choice right from the outset for some people with ulcerative colitis, such as those who have low rectal cancer or an anal muscle that doesn't work. It turns out to be the only option for people with Crohn's disease who have their colon removed. In such cases, it's good to know that people can lead long, active, fulfilling lives with an ileostomy, too. "It's the difference between sitting down to have a bowel movement and standing up to have one," says Dr. Rafferty. That's no trivial distinction when you've been having bowel movements the same way all your life, but many people who have been through it say that the initial adjustment wasn't as tough as they had feared.
Are There Other Factors to Consider?
Any major surgery can lead to complications such as bleeding and infection. The risk of infection may be heightened in people who are taking immunosuppressants. Also, surgery is always riskier for people who have other health problems in addition to their colitis or Crohn's.
"Even for patients who are going into the surgery otherwise healthy, it will probably be about 4 to 6 weeks before they feel like going back to work," says Dr. Rafferty.
One important factor influencing the outcome of this type of surgery is the experience and skill of the surgeon performing it. "Don't be afraid to ask your surgeon about his or her training and background," says Dr. Rafferty, including how many such operations the surgeon performs each year.
Some surgeons now perform these procedures laparoscopically -- in other words, using small incisions through which they insert long, slender instruments and a tiny video camera for viewing inside the body. Compared to traditional surgery, laparoscopic surgery allows for the operation to be performed with less overall physical trauma. The result is often less postoperative pain and a faster recovery. Once again, though, the surgeon's experience with the procedure is one key to a good outcome.
What is Life Like with an Ileostomy?
For people who are considering an ileostomy, whether permanent or temporary, the issue is often less the surgery itself than their life afterward. "The most common concerns center on body image," says Dr. Rafferty. "Patients want to know, ÔWill I smell bad? Will I look funny? Will my family and friends still love me?'" If you're having some of these concerns, Dr. Rafferty recommends calling your local CCFA chapter or hospital and asking about patient support groups in your area. There's nothing more reassuring than talking to other ostomy patients and finding out that they're ordinary people -- not smelly, funny-looking, unlovable, or any of the other negative things you may have imagined. You'll probably find that the more you learn, the less scary the whole idea seems.
Another common worry is whether you'll be able to care for your own stoma, the opening to which the external appliance is attached. "The biggest hurdle to stoma care is usually psychological," says Dr. Rafferty. "Patients just have to tell themselves, 'Okay, I'm going to do this so I can feel better and be independent.' Most patients adapt quickly, and they're quite proficient by the time they leave the hospital."
After recovering from surgery, people are able to return to almost all their everyday activities, including work and sports. With the possible exception of activities that involve heavy lifting or hard body contact, there are few restrictions. And yes, people can and do resume satisfying sexual relations as well. Although men sometimes experience problems with sexual functioning, they're usually temporary. The most important things people need in order to reestablish intimacy are time to get comfortable with their bodies again and support from their partner.
The adjustments that are required must be weighed against the greatly improved quality of life that comes from feeling well again. For many people, says Dr. Rafferty, "a stoma is something they can live with if it means they can go about their daily life and just be a normal, healthy person."
-- Linda Wasmer Andrews
The author is an Albuquerque-based writer who has specialized in health and medical topics for more than two decades.
This is from our upcoming issue of CCFA's national magazine, Take Charge. If you're a CCFA member, you'll be seeing this in your mailbox soon. Not a member? Join now to get a full year of research information, news on medical treatments, diet tips, coping support, and other great content coming to your mailbox four times per year. Also, watch our new Webcast, "Ostomy Surgery for IBD," for more information on ostomies.
For further information, call Crohn's & Colitis Foundation's IBD Help Center: 888.MY.GUT.PAIN (888.694.8872).
The Crohn's & Colitis Foundation provides information for educational purposes only. We encourage you to review this educational material with your health care professional. The Foundation does not provide medical or other health care opinions or services. The inclusion of another organization's resources or referral to another organization does not represent an endorsement of a particular individual, group, company or product.
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Published: December 20, 2005