Many different types of surgery are used to treat inflammatory bowel disease (IBD). One type of surgery that is sometimes used is the removal of the rectum (which is called a proctectomy) and the anus. When both of those structures are removed, another way will be needed for stool to leave the body. If all of the colon has also been removed (called a colectomy), either at the same time as the proctectomy or before, an ileostomy will be needed.
For people with Crohn’s disease and ulcerative colitis, a type of ileostomy called an end ileostomy is what is typically done. This is when a part of the small intestine is brought through the abdomen, outside the body, to create what is called a stoma. An ostomy pouch is worn over the stoma to collect stool and is emptied several times a day when needed.
Proctectomy Surgery Can Vastly Improve Quality of Life
Proctectomy surgery may also be used to treat rectal cancer. The rectum, or most of the rectum, is also removed during j-pouch surgery (ileoanal pouch anastomosis, or IPAA), which is typically done only in patients who have ulcerative colitis. For these patients, the anus is left in place and the last section of the small intestine is fashioned into a structure (in the shape of a “J”) that holds stool like the rectum did.
When the anus is also removed, that area of the body is then closed up surgically. Some people in the IBD community refer to this as having a “Barbie butt”—so-called because to some people it reminds them of a doll’s bottom, which (obviously) doesn’t have a structure to let out stool.
A proctectomy is a big surgery, and not just because it’s done under general anesthetic and all that goes with it. After a proctectomy and anus removal for IBD, an ileostomy is permanent. That can be a difficult topic to cope with, for many reasons, which will be different from patient to patient.
However, it’s important to note that this can be a lifesaving surgery for some people with IBD and will vastly improve the quality of life for many others. People with IBD who have the disease in the area of their rectum and anus (the perianal area) may cope with pain and have many medical interventions and doctor’s appointments to manage complications like abscesses and fistulas. After proctectomy surgery, people with IBD who have these complications often feel better and find their quality of life improved.
Why the Rectum and Anus Would Need to Be Removed
Current estimates put the percentage of patients with Crohn’s disease who need proctectomy surgery as being between 12 percent and 20 percent. People with Crohn’s disease symptoms may need to have this surgery because the Crohn’s disease is affecting the area around the anus, which is called the perianal area.
Crohn’s disease can sometimes cause complications such as fistulas or abscesses near the anus. These problems can be difficult to manage and heal and can cause not only pain but also a decrease in quality of life. In some cases, using an ileostomy for a period of time to avoid having stool in the area or putting in drains may help, but when these things don’t work, a proctectomy may be recommended.
For patients with ulcerative colitis who either don’t want to undergo j-pouch surgery or aren’t able to have that surgery because of problems in the perianal area, a proctocolectomy with permanent ileostomy is also an option. For a minority of people with ulcerative colitis, the rectum still has inflammation, and removing it would give the best chance of improving quality of life.
In other patients, and this is also rare, the risk of rectal cancer is such that removing the rectum is considered to be the best option for lowering that risk.
Proctectomy surgery is a major surgery and there are various techniques that might be used. The colorectal surgeon who is completing the surgery will decide on how the surgery will be done, and patients will want to talk over the particulars at the pre-surgical appointments. Every surgical team and hospital will have a preferred way of completing the surgery and deciding how long patients will stay in the hospital afterward and the management of aftercare.
In all cases, this surgery is done under general anesthesia and will require a hospital stay of at least a few days. Pain management will be an important part of recovery both in the hospital and at home. As with most surgeries, getting up and out of bed and walking as soon as hospital staff recommends is vital to healing.
After proctectomy surgery, patients will go home with a new ileostomy, if one was not in place before the surgery. An enterostomal therapy nurse will help with understanding how to care for a new stoma and how to change an ostomy appliance.
There will also be stitches in place in the bottom where the anus was closed up, and that area may need special care and cleaning for a time until it is fully healed. The surgical team will give instructions on any other concerns before a patient is released from the hospital.
Changes in Diet
Patients may be on bowel rest (not eating foods) until the small intestine “wakes up” from surgery and starts making noise that a healthcare professional can hear through a stethoscope on the abdomen. The next step is usually eating clear liquids such as gelatin and broth, and gradually adding more types of foods until you’re eating a diet of solid food again.
Patients often go home on a modified diet for several weeks until the colorectal surgeon says a normal diet can be resumed. After that, there may be a few foods that the surgeon and the gastroenterologist recommend be avoided (things like popcorn or nuts) because any type of abdominal surgery carries a risk of later having a bowel obstruction. This risk of obstructions will vary greatly from person to person, so diet is best discussed with the surgeon and other members of the healthcare team.
Potential Complications of a Proctectomy
- Perianal Wounds: The most common complication of proctectomy surgery for Crohn’s disease is that of having an unhealed wound in the perianal area. In some cases, people with Crohn’s disease who need a proctectomy have gotten pretty sick and may be in poorer physical shape than they and their physicians would want prior to surgery.
- Having abscesses or fistulas in the perianal area is also a risk factor for having complications in that area after surgery. Poor nutrition or vitamin deficiencies, being a smoker and having obesity can also contribute to having wounds heal poorly after surgery. In the majority of cases, a nonhealing wound is treated conservatively with wound care techniques but in a minority of cases, another surgery might be needed.
- Sexual Function: Concerns about sexual function are also common with this type of surgery. Fortunately, erectile dysfunction in men after proctectomy is low and estimated to be at between two and four percent. The even better news is that one long-term follow-up study showed that 90 percent of people who had proctectomy surgery are satisfied with their sexual health.
Some patients do report that sexual function is worse, and the rate is estimated to be between 25 and 30 percent. Patients who find that sexual function is not what they would like it to be will want to address this topic with the surgeon and/or a gastroenterologist. Help is available for the issues related to sexual health and the most vital piece to getting the concerns addressed is in bringing it to the attention of your healthcare team.
- Medications: Some patients may be concerned about how the current medications they’re taking can affect recovery. One study showed that people with Crohn’s disease who are receiving biologic therapy don’t have any higher risk of having problems with wound healing than those that aren’t taking a biologic therapy at the time.
A Word From Get Meds Info
Proctectomy surgery is a difficult prospect for many people with IBD to face. Having this surgery means a permanent ostomy, and even though most patients feel better and enjoy life more after ostomy surgery, it’s natural to have concerns.
Talking about the surgery with a colorectal surgeon and a gastroenterologist often helps in putting many risk factors in perspective. The good news is that the majority of people with IBD who have proctectomy surgery heal up well and go on to feel better and to enjoy their lives more.