Surgery for Ulcerative Colitis
Living with a chronic illness like ulcerative colitis often means several approaches to treatment. This can include medication, dietary modifications, nutritional supplementation, and even surgery.
While surgery can be a big source of stress and worry, it can help alleviate some of your ulcerative colitis symptoms. We can help you understand some of the most common surgical procedures used to treat ulcerative colitis, so that you can have informed discussions with your healthcare team and your loved ones.
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Surgery may be recommended for patients who have stopped responding to their medication or if their medication is no longer as effective as it once was. Other patients choose to undergo surgery to improve their quality of life. Some patients become dangerously ill and require emergency surgery.
Disclaimer: This information should not replace the recommendations and advice of your doctor. Surgery information is up to date at the time of publication. You should always check with your doctor for the most current information.
Complications Requiring Surgery
While ulcerative colitis can often be managed with medication, complications can develop that require emergency surgery. Seek immediate medical attention if you believe you may have one or more of these complications.
Sudden, severe ulcerative colitis
This complication is the main cause of emergency surgery in patients with ulcerative colitis. With sudden, severe ulcerative colitis, medications and intravenous steroids, are unable to control the symptoms.
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Uncontrolled bleeding can occur from deep ulcerations in the colon, though that is rare.
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Severe, sudden ulcerative colitis can lead to toxic megacolon, a potentially life-threatening complication caused by severe inflammation.
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Toxic megacolon leads to rapid enlargement of the colon. Symptoms include pain, distension or swelling of the abdomen, fever, rapid heart rate, constipation, and dehydration.
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Toxic megacolon requires immediate treatment and surgery.
Perforation of the colon
Chronic inflammation caused by ulcerative colitis can weaken the wall of the colon until a hole, or perforation, develops. Once the colon has been perforated, the contents of the intestine can spill into the abdomen and cause a serious infection called peritonitis.
This is a potentially life-threatening condition that needs immediate medical treatment.
Ulcerative Colitis Surgical Procedures
The standard surgical procedure to treat ulcerative colitis is a proctocolectomy. This surgery removes both your colon and your rectum (collectively called the large intestine).
There are two types of proctocolectomy procedures used to treat ulcerative colitis.
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Proctocolectomy with ileal pouch-anal anastomosis: Removal of the colon and rectum, and creation of an internal pouch that eliminates the need for a permanent external ostomy.
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Proctocolectomy with end ileostomy: Removal of the colon, recturm, and anus and creation of an external ostomy.
It can feel overwhelming when you are recommended for one of these surgeries. We can help you understand what’s involved with each surgery, and be prepared for life after your proctocolectomy.
Proctocolectomy with Ileal Pouch-Anal Anastomosis (IPAA)
This is the most commonly performed surgery in ulcerative colitis patients. Many healthcare providers and patients prefer this surgical option because it restores bowel function, allowing stool to pass through the anus.
This procedure is commonly referred to as j-pouch surgery.
In some cases, surgeons can perform this and other ulcerative colitis procedures with laparoscopic surgery, a minimally invasive technique. Laparoscopic surgery uses specialized instruments inserted into the body, including tiny cameras that display images on a monitor so your surgical team can see inside your body. This technique often means a shorter recovery time in the hospital.
What You Should Know About Proctocolectomy with Ileal Pouch-Anal Anastomosis (IPAA)
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This procedure can be performed in one, two, or three stages.
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A temporary ileostomy is typically created to give your newly formed pouch a chance to heal. During this time, you will need to wear an external ostomy pouch.
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A three-stage procedure may be recommended for patients who are in poor physical health, on high doses of steroids, or if they are required to undergo emergency surgery to repair bleeding or toxic megacolon.
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You may initially have up to 12 bowel movements a day. Your stool may be soft or liquid and you may have a sense of urgency or some leakage of stool.
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Your pouch will gradually increase in size and your anal sphincter muscles will strengthen, which will result in your stools being thicker and less frequent.
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Most people are down to six to eight bowel movements per day several months after surgery. The consistency of your stool will vary, but will be mostly soft, almost putty-like.
Potential J-Pouch Complications
While j-pouch surgery is often successful in treating your ulcerative colitis, there are some complications that require follow up treatment. Seek immediate medical attention if you believe you have one of these conditions.
Pouchitis
Inflammation of the pouch is most common complication of j-pouch surgery. Pouchitis is treated with antibiotics.
Symptoms of pouchitis may include:
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Diarrhea
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Crampy abdominal pain
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Increased stool frequency
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Fever
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Dehydration
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Joint pain
Total Proctocolectomy with End Ileostomy
This proctocolectomy surgical procedure removes the colon, rectum, and anus, and creates an end ileostomy so that waste can exit your body into an ostomy bag.
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This procedure is similar to the temporary ileostomy in the IPAA surgery, except the ileostomy will be permanent.
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The stoma, or small hole created in the abdomen for the ileum, is about the size of a quarter, pinkish in color, and will appear moist and shiny. The stoma will protrude slightly outside of the abdomen.
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After this surgery, you will wear an external ostomy pouch at all times to collect waste. The pouch must be emptied several times a day.
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The ileostomy is usually placed in your lower abdomen to the right of your navel, just below the belt line.
Notify your doctor or other healthcare provider immediately if you experience these symptoms:
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Infection from the surgery or at the site of the stoma
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If no waste material exits the stoma for four to six hours and is accompanied by cramps and/or nausea, which could indicate a blockage
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If your stoma is protruding more than normal outside of your abdominal wall, called prolapse, or retracting further inside your body, called retraction.
What to Expect After Your Surgery
Most people do very well after their surgery and are able to return to work and their normal daily activities after they recover.
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You should expect an adjustment period of up to one year to get used to the changes in your body after your proctocolectomy.
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You will likely be on liquid or soft food diet for the first few days after surgery. Your doctor will then have you slowly introduce bland solid foods. You should chew your food thoroughly and avoid any foods that may cause gas, diarrhea or anal irritation. It’s also important to drink plenty of water. We recommend six to eight glasses a day.
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Some patients may still feel as if they need to have a bowel movement after their surgery, just as people who have lost a limb sometimes still feel as if the limb is still there. This called phantom rectum and it completely normal. It does not require any treatment and often subsides over time.
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Your doctor may recommend a physical activity restriction for a minimum of six weeks, depending on what type of surgery you had.
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Talk to your doctor about resuming normal sexual activity after your surgery. Some people find their sex life improves some time after surgery due to improvements in pain, inflammation, and other ulcerative colitis symptoms.
Living with an Ileostomy
You can live a long, active, and productive life with an ileostomy. In many cases, ileostomy patients can participate in the same activities they did before the surgery, including sports, outdoor activities, swimming and other watersports, travel, and work.
Whether your ileostomy is permanent or temporary, it is common for patients to initially feel self-conscious about their ostomy and you may notice a change in how you feel about your body image. Some patients prefer to limit how visible the bag is to others. The ostomy bag typically lays fairly flat under your clothing.
Remember, it is just as important to take care of your mental and emotional health as it is your physical health. Speak with your doctor or a mental health professional if you feel you are experiencing symptoms of depression or anxiety.
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There are several pouching systems for you to choose from. You will learn how to use your system as well as how to care for the skin surrounding the stoma.
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Talk to your doctor about any specific dietary restrictions with an ileostomy. It is important for you to drink plenty of fluids to avoid dehydration and loss of electrolytes.
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Eating foods high in pectin, including applesauce, bananas, and peanut butter, will help thicken your stool output and control diarrhea. Discuss this with your doctor.
The United Ostomy Associations of America has additional resources as you learn to live with your ostomy.
Elective Colorectal Cancer Surgery
Patients with Crohn’s disease and ulcerative colitis have a higher risk for colorectal cancer (CRC) than the general population, so elective surgery may be recommended to eliminate that risk.
Colorectal cancer risk factors
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The risk of CRC increases after living with IBD for 8 to 10 years
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The risk increases the longer a person lives with IBD
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The greatest risk is for people with IBD affecting their colon
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Patients who have a family history of primary sclerosing cholangitis (a condition that affects the bile ducts of the liver) are also at higher risk of developing colorectal cancer
In most cases, colorectal cancer starts as a polyp, or a small lump growing from the wall of the intestine. Polyps typically start out benign but become cancerous over time. But in patients with IBD, abnormal and potentially precancerous tissue, called dysplasia, may lay flat against the wall of the intestine and can even be found in areas of the intestinal wall that appear normal during a colonoscopy.
Colorectal Cancer Screening
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If you’ve had IBD for 8 to 10 years or longer, you should have surveillance colonoscopies every one to two years depending on your other risk factors, such as a family history of colorectal cancer. Patients with PSC may need to have more frequent surveillance.
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A standard colonoscopy is usually accompanied by a series of biopsies, which are small tissue samples taken for microscopic examination.
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If dysplasia is found, even if it’s not cancerous, surgery to remove the colon and rectum is usually recommended to eliminate the risk of developing cancer.
Communicating with Your Healthcare Team
If you have been recommended for surgery, you and your doctor should consult with a surgeon who specializes in the gastrointestinal tract. Your regular gastroenterologist will continue to treat you before and after your surgery.
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Your surgeon should be board certified in general surgery or colon and rectal surgery, and should have significant experience performing the surgical procedure that has been recommended for you. Take the time to research a surgeon and a hospital that fits your needs. Ask your surgeon about his or her experience. Do not be afraid to seek a second or third opinion.
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You can ask your your gastroenterologist or other healthcare provider to recommend surgeons. You can also use our resources to help find a specialist, or check with the American Society of Colon and Rectal Surgeons or the American College of Surgeons for more information.
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Ask your surgeon for help in connecting with other people who have had the same procedure. You can also connect with other patients through the Foundation’s Power of Two program.
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Talk with your surgeon and your other healthcare providers about what preparations you may need before surgery, what to expect after surgery and any medical supplies you might need once you return home.
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Speak with your healthcare provider before your surgery about any concerns or questions you may have about sex and intimacy, including erectile dysfunction, retrograde ejaculation, or decreased fertility.
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Check to see if your state health departments publish data about the outcomes of certain procedures at specific hospitals.
Thank you to Bonnie & Andrew Stern for supporting the development of educational images and resources on surgery options. Additional support is provided through the Crohn's & Colitis Foundation's annual giving program and donors.