Ulcerative Colitis Surgery: Everything You Need to Know

Ulcerative colitis is a chronic condition that causes inflammation in the digestive system and, sometimes, other parts of the body. It is one form of inflammatory bowel disease (IBD), which also includes Crohn’s disease and indeterminate colitis.

Most cases of ulcerative colitis are not severe. However, when the disease significantly lowers your quality of life, becomes untreatable with medication, or is life-threatening, surgery might be needed as a treatment.

The two most common surgeries to treat ulcerative colitis are ileostomy surgery and ileal pouch-anal anastomosis (IPAA), which is commonly called a j-pouch.

What Is Surgery for Ulcerative Colitis?

Surgery for ulcerative colitis means removing the large intestine, or colon (which is called a colectomy). After the large intestine is gone, there needs to be another way for stool to leave the body. The two most common ways of achieving this are either by placing an ileostomy or creating a j-pouch. 

In an ileostomy, a part of the small intestine is brought through the abdomen. This is called a stoma. Stool leaves the small intestine through the stoma and collects in an appliance (often called a pouch or a bag). The ileostomy appliance is emptied into the toilet several times a day.

In an IPAA, or a j-pouch, the end of the small intestine is attached to the rectum. This is usually achieved through a series of two or three surgeries, although some surgeons will do it in a single operation. When done in more than one surgery, the first surgery is always a colectomy with placement of a temporary ileostomy.

Sometimes a j-pouch is created at the same time, but in some people, it is performed during a second surgery. The subsequent surgery is to reverse the ileostomy and hook up the j-pouch. After the completion of j-pouch surgery, the person is able to pass stool through their anus.

These surgeries can be done through an open incision, or, as is more often the case now, laparoscopically (performed through small incisions with the help of a camera and small tools). Ideally, the surgery is scheduled but is sometimes an emergency operation.

Contraindications

For patients who are ill and/or malnourished because of ulcerative colitis, surgery may be delayed for a short time to allow the patient's condition to stabilize before having surgery. For those who are ill, the j-pouch surgeries may be done in three steps rather than two steps to give the body time to heal.

These surgeries usually are reserved for adults, but they may be needed in children. When surgery is needed for serious illness, it will be used, but this surgery is not the preferred treatment for children unless clearly needed.

Potential Risks

One study on ileostomy surgery for ulcerative colitis showed that complications requiring more surgery are rare. The complications tend to be the same for both open or laparoscopic surgery. 

Some of the complications include:

• Bleeding
• Ileus (the motion of the intestine is slowed or stopped)
• Pelvic abscess (a walled-off area of infection)
• Rectal stump leakage
• Small bowel injury/fistula (an abnormal connection between two body cavities)
• Small intestine paralysis

In a study performed at one center following 58 patients having j-pouch surgery, about 40% of the patients experienced a complication after surgery. Some of these potential complications included:

• Abscess
• Bleeding in the pouch
• Fistula
• Infection
• Intestinal obstruction
• Leaks in the pouch
• Sepsis (a serious whole-body reaction to an infection)

Purpose of Ileostomy or J-Pouch Surgery

Surgery is used to treat ulcerative colitis for a few different reasons.

The first reason to have a colectomy for ulcerative colitis is that the condition is no longer treatable with medications. There are many different drugs that are used to treat the condition. However,the available drugs may not significantly reduce inflammation.

Some of the medications used to treat ulcerative colitis may need time to work to get the disease under control. It can also occur that the disease becomes severe enough that there’s not enough time for the drugs to work.

While not common, ulcerative colitis is also associated with colon cancer. The risk of colon cancer increases after having the disease for about eight to 10 years. If there are changes in the colon that might lead to colon cancer, surgery to remove the colon might be the best option.

Surgery might also be done to treat complications. Two of those include toxic megacolon (the colon becomes severely inflated) and a perforation (hole) in the intestine. These are rare emergencies, but they would be a reason for a colectomy surgery.

Another reason to have surgery for ulcerative colitis is to improve quality of life. A patient might decide that the symptoms of the disease are keeping them from living a full, happy life, and surgery offers an opportunity for improvement.

How to Prepare

Preparing for colectomy surgery may be different for each person. There will be several steps that might be taken before having surgery. Check with a physician about how to prepare to have this surgery.

Meet Your UC Surgeons and Team

Most people who have surgery for ulcerative colitis are referred from their gastroenterologist. The surgeon that will complete the surgery is most often a colorectal surgeon, who specializes in surgery of the digestive system.

An enterostomal therapy nurse (ET nurse) will be helpful before and after surgery to place an ileostomy. An ET nurse will help decide where the stoma will be placed and will make suggestions on which type of appliance will work best.

Location

Surgeries for ulcerative colitis are performed in a hospital. There will be a hospital stay of several days after the surgery (and for each step if a j-pouch is being created).

What to Wear

Comfortable clothes should be worn. Because the surgery will mean a hospital stay, patients won’t want to bring any clothes that are special or expensive. You will wear a hospital gown, but you may want to bring your own socks, slippers, and a robe or comfortable pants.

Food and Drink

Because this is surgery on the digestive system, there will be a need to fast beforehand. There might also be a prep prescribed, in which the bowel is cleaned out with special laxatives. After surgery, there may be one or more days of fasting or drinking only clear liquids. Your diet will gradually expand.

Medications

Before surgery, you may have to stop taking some medications. You may need to start other medications, such as antibiotics, prior to surgery. The surgeon will give a complete list of what to do concerning your current medications and prescribe any that are needed before surgery.

What to Bring

Because a hospital stay is involved, patients will want to bring some items, such as eyeglasses, a cellphone and charger, headphones, and a book or other activity to pass the time. You may also want your own toiletries, such as soap, shampoo, moisturizer, and anything that’s needed to sleep, such as a sleep mask.

Patients will not be able to drive, so someone will be needed to take them home after being discharged.

Pre-Op Lifestyle Changes

Patients will be encouraged to stop smoking before surgery. In some cases there may a need to make other changes, such as focusing on nutrition and weight management.

Ulcerative Colitis Surgery Cost

As surgery for ulcerative colitis requires at least one and possibly three hospital stays, it comes at a higher cost than procedures that can be done as outpatient surgery. Ileostomy surgery may cost approximately $39,000, while j-pouch surgery may cost $50,000.

Check with your insurance provider to find out how much will be covered and what co-pays may be required. Using a hospital and surgical team in your plan's network is key to preventing any unexpected charges.

What to Expect on the Day of Surgery

On the days leading up to surgery, you will be in touch with the surgical team and other healthcare professionals.

Before the Surgery

Patients will have their vital signs, such as blood pressure, heart rate, and temperature, taken and monitored before surgery and throughout the process. An intravenous (IV, through a vein) line will be started to administer fluids and any medications that are needed.

During the Surgery/Procedure

Patients will be wheeled from the presurgical area into the operating room. General anesthesia will be given. There may also be an epidural given for pain control. Each of the surgeries will take several hours. The surgery to create the j-pouch will be the longest surgery.

After the Surgery/Procedure

Patients will spend some time in a recovery area before being taken to a hospital room. 

If an ileostomy is placed, patients will wake up with a stoma. There will be an ileostomy appliance over the stoma to collect waste. The hospital staff will help in emptying the pouch and in teaching you how to change it over the course of the hospital stay.

Patients often will have pain management with a pain pump connected to their IV. The nursing staff will give instructions on how to use the pump.

After surgery to connect a j-pouch, patients will be encouraged to try to use the bathroom. Diet will be advanced from liquids to solids as recovery continues.

Recovery

The surgeries to treat ulcerative colitis are major abdominal operations. Recovery takes place over several weeks. It's important to talk to your medical team about getting back to driving, housework, and other activities that might engage the abdominal muscles.

Healing

For open surgery, you will have a large incision that requires care, including changing a dressing. For laparoscopic surgery, there will be several smaller incisions. The surgeon’s office will give instructions on how to manage showering with an incision. Baths might not be recommended until the incision has somewhat healed.

A new stoma will adjust over time and become smaller. You may need to try different types of appliances as the area heals and the swelling reduces.

At home, diet may be kept simple and bland at first and then advanced over time. This is to avoid the potential for intestinal blockages. With a new j-pouch, your stool may be acidic at first, and avoiding those foods that contribute to loose stools may help. The surgeon’s office will give more specific instructions on diet.

Coping with Recovery 

After stoma surgery, there will be an adjustment period. It’s natural to have complicated feelings about living with an ileostomy. Working with a mental healthcare professional as well as a stoma nurse (ET nurse) will be helpful.

Long-Term Care

In the first days of being home with a new stoma, in-home nursing care might be recommended. Caring for a stoma at home and changing the appliance will require practice, and skilled nursing care can help.

You may also need help with household tasks for several weeks due to restrictions on lifting or walking. You may be on pain medication for a time, too, and you will want to take care not to overexert or make major decisions until feeling better.

As patients recover, getting back to regular activity will be important. The surgeon’s office will help in making decisions about when a patient can resume work, go to school, do household chores, exercise, and have sex.

Possible Future Surgeries

J-pouch surgery is a series of two or three operations leading up to the last surgery that connects the j-pouch. Ileostomy surgery is one surgery, and there’s usually not a need for any others.

Patients should keep in touch with their colorectal surgeon and reach out if any complications arise. 

Lifestyle Adjustments

Having a colectomy will mean some adjustments to lifestyle but most patients feel better after recovery and get back to all their previous activities. 

The biggest adjustment may be to diet. Diet should be expanded over time in order to get back to eating as many fresh fruits and vegetables as possible. A dietitian with experience in IBD or digestive disease may be helpful in offering suggestions and adding foods back.

Intimacy

Patients are often concerned about dating and intimacy after surgery. Many people feel better after having surgery for ulcerative colitis. That helps them get back to all the aspects of their lives that they enjoyed before.

People who live with a j-pouch or an ostomy can date, get married, have sex, and have children. It's important to keep in touch with your doctor to know when it is safe to resume these activities.

Sexual activity might resume within several weeks of having surgery. An ostomy will not get in the way, although some people prefer to use an ostomy belt or wear a smaller ostomy bag that is made especially for swimming or intimacy.

For those who want to become pregnant, it's important to make a timeline with the colorectal surgeon and the gastroenterologist. There's no one answer regarding when is the best time to plan a pregnancy. It will be different for every person.

Ostomy Bag Care

People who have an ileostomy will need to care for their stoma and their peristomal skin (the skin surrounding the stoma). The ostomy appliance should be changed regularly. The schedule will be different from person to person. A skilled stoma nurse will help if any problems arise.

When traveling, it will be important to remember to bring a kit that contains the items needed to change the appliance.

Patient advocacy groups and support groups can help you understand more about the care of a stoma. Reaching out to ostomy supply companies is also helpful for advice on how to best use their products. Medical supply stores can also provide good information about what supplies are available and how to use them.

Summary

Surgery may be needed for people with ulcerative colitis if they have severe disease, a complication, or want a life without some of the symptoms of the condition. Surgery begins with a colectomy to remove the colon. Then a connection is made for stool to exit the body, by placing an ileostomy or creating a j-pouch.

If a j-pouch is created, one or two further surgeries will be needed. All of these surgeries are performed in a hospital under general anesthesia and require a hospital stay. They may be done as open surgery or laparoscopic surgery.

Recovery after surgery includes incision care and ostomy care, as well as a gradual return to a regular diet.

A Word From Verywell

Not everyone who lives with ulcerative colitis will require surgery. However, surgery is a treatment option that offers a chance to live without the signs and symptoms of the disease and to prevent complications.

While it can be difficult to learn that surgery is needed, most people go on to recover well and get back to their lives. Keeping in touch with the surgical team and getting help for any potential problems along the way is important to making a successful recovery.