Ulcerative Colitis: Should I Have Surgery?
You may want to have a say in this decision, or you may simply want to follow your doctor's recommendation. Either way, this information will help you understand what your choices are so that you can talk to your doctor about them.
Ulcerative Colitis: Should I Have Surgery?
Get the facts
- Have surgery to remove your colon. This will cure ulcerative colitis.
- Keep taking medicines to see if your symptoms improve.
Key points to remember
- Most people who have mild colitis can control their symptoms with medicine. Surgery isn't usually done for mild colitis.
- The only cure for ulcerative colitis is surgery to remove the colon and the lining of the rectum. With one type of surgery, you will need to wear an ostomy bag after surgery to remove body waste. With the more common type of surgery, most people are able to have nearly normal bowel movements.
- You are more likely to get colon cancer if you have had ulcerative colitis for 8 years or longer. But surgery removes the risk of colon cancer.
- Surgery is usually successful, but it does have risks. These include blockages in the small intestine and leaking of stool.
- Surgery may be needed if cancer cells are found during a biopsy.
Ulcerative colitis affects the colon and the rectum. Symptoms include:
- Belly pain.
- Bleeding or mucus during bowel movements.
You may also start to have symptoms in other parts of your body, such as your joints, eyes, and skin.
In many mild cases, medicines can reduce swelling and control symptoms, such as diarrhea. But sometimes medicines don't work. Surgery to remove the colon is the only cure for the disease.
Ulcerative colitis can lower your quality of life. Frequent diarrhea and belly pain may force you to limit work or social activities. Having the disease can be stressful. Some people feel alone and depressed.
Over time, colitis raises your risk of colon cancer. Most doctors advise getting tested for colon cancer if you have had ulcerative colitis for 8 years.
The risk of colon cancer is highest when ulcerative colitis affects the entire colon rather than just part of it. And the longer you have had ulcerative colitis, the greater your risk of colon cancer.1
Two surgeries are commonly done.
- Ileoanal anastomosis. This surgery is the most common. It removes the large intestine and the lining of the rectum, but you can still have nearly normal bowel movements after the surgery. This surgery is usually successful. About 7 or 8 out of 10 people have no problems after surgery. And most people say their quality of life is better.2
- Proctocolectomy and ileostomy. People who can't be under anesthesia for long periods of time because of illness or age are more likely to have this surgery. It removes the large intestine and the rectum. After this surgery, you will wear an ostomy bag that is attached to an opening in your belly to collect body waste. This surgery has a lower risk of problems after surgery compared to ileoanal anastomosis.
You doctor may recommend surgery if:
- Medicines and nutritional therapy have failed to manage severe symptoms.
- Holes develop in the large intestine (perforation).
- You have colon cancer, a significantly increased risk of cancer (detected by biopsies), or a narrowing in the intestine that cannot be distinguished from cancer, even if you do not have symptoms of active disease.
- Severe bleeding requires ongoing blood transfusions.
- Slow growth or other serious complications occur in a child.
You may choose to have surgery to improve your quality of life, cure ulcerative colitis, or prevent the possibility of colon cancer.
Compare your options
What is usually involved?
What are the benefits?
What are the risks and side effects?
- Surgery is often done in two parts, up to 2 weeks apart. After each surgery, you will stay in the hospital for several days.
- Recovery from surgery takes 1 to 2 weeks at home.
- After surgery, depending on the type, you may wear an ostomy bag to remove waste.
- Surgery cures ulcerative colitis.
- Surgery prevents colon cancer or can cure it if the cancer has not spread beyond the colon.
- Problems that can
occur during or after surgery include:
- Blockage of the small intestine.
- Swelling in the pouch created from the small intestine.
- Leakage of stool.
- An infection in the pelvis or belly.
- Trouble with bladder control (incontinence).
- All surgeries carry risks, such as bleeding, nerve damage, and anesthesia. Your age and your health can also affect your risk.
- You take medicines, including steroids, for symptoms, to control the disease, or to keep it in remission.
- You may need to try different kinds of medicines to find the right ones that work for you.
- You will keep seeing your doctor as recommended while your condition is stable and more often if you're having problems.
- Medicine can relieve symptoms and help you control the disease.
- You avoid the risks of surgery.
Personal stories about surgery to cure ulcerative colitis
These stories are based on information gathered from health professionals and consumers. They may be helpful as you make important health decisions.
I have suffered from some really bad symptoms from ulcerative colitis. The diarrhea and pain interrupt my life. I can't go anywhere without checking out where all the bathrooms are. I don't dare go on long hikes or go skiing, things I used to do all the time. It makes me depressed. I like the idea of having surgery so I don't have to deal with this illness anymore.
Toni, age 33
The symptoms of ulcerative colitis can be painful and embarrassing, but I only get them a few times a year. My medicines control them really well. I don't think my condition is bad enough for me to have surgery, and I don't like the thought of having to use an ostomy bag. I think I will wait and see if my condition gets worse.
Carolyn, age 40
I want to have surgery, because I'm scared of getting colon cancer. I had an uncle who had colon cancer. My risk is already higher than average because I have ulcerative colitis. Besides, I've had this disease for 7 years. In another year, I have to start having an annual colonoscopy to check for cancer. If I have surgery, I won't have to deal with symptoms or be tested every year and worry about colon cancer.
Bill, age 27
My medicines are working really well, and I feel pretty good about my ability to live the life I want. I've had this condition for 12 years. I get screened every year for colon cancer. So far, everything is okay.
Juan, age 30
What matters most to you?
Your personal feelings are just as important as the medical facts. Think about what matters most to you in this decision, and show how you feel about the following statements.
Reasons to choose surgery
Reasons to keep taking medicine
I can't control my symptoms with medicine.
Medicine controls my symptoms.
I accept the risks of surgery.
I'm worried about the risks of surgery.
I'll do whatever it takes to get rid of this disease.
I don't want to have surgery for any reason.
I want to remove any risk of getting colon cancer.
My risk of cancer is low right now, and I want to wait to have surgery.
My other important reasons:
My other important reasons:
Where are you leaning now?
Now that you've thought about the facts and your feelings, you may have a general idea of where you stand on this decision. Show which way you are leaning right now.
What else do you need to make your decision?
Check the facts
Can mild forms of ulcerative colitis be controlled with medicine?
- YesYou're right. Most people who have mild colitis can control their symptoms with medicine.
- NoSorry, that's not right. Most people who have mild colitis can control their symptoms with medicine.
- I'm not sureIt may help to go back and read "Get the Facts." Most people who have mild colitis can control their symptoms with medicine.
Is there a cure for ulcerative colitis?
- YesYou're right. There is a cure for ulcerative colitis. It's surgery to remove the colon and the lining of the rectum.
- NoSorry, that's not right. There is a cure for ulcerative colitis. It's surgery to remove the colon and the lining of the rectum.
- I'm not sureIt may help to go back and read "Get the Facts." There is a cure for ulcerative colitis. It's surgery to remove the colon and the lining of the rectum.
Does everyone who has surgery need to wear an ostomy bag?
- YesSorry, that's not right. With one type of surgery, you will need to wear an ostomy bag after surgery to remove body waste. But with the more common type of surgery, you will be able to have nearly normal bowel movements.
- NoYou're right. You will need to wear an ostomy bag after one kind of surgery. But with the more common type of surgery, you will be able to have nearly normal bowel movements.
- I'm not sureIt may help to go back and read "Get the Facts." You'll need to wear an ostomy bag after one type of surgery. But with the more common type of surgery, you will be able to have nearly normal bowel movements.
Decide what's next
Do you understand the options available to you?
Are you clear about which benefits and side effects matter most to you?
Do you have enough support and advice from others to make a choice?
How sure do you feel right now about your decision?
Use the following space to list questions, concerns, and next steps.
Here's a record of your answers. You can use it to talk with your doctor or loved ones about your decision.
|Primary Medical Reviewer||E. Gregory Thompson, MD - Internal Medicine|
|Specialist Medical Reviewer||Peter J. Kahrilas, MD - Gastroenterology|
- American Gastroenterological Association (2010). AGA medical position statement on the diagnosis and management of colorectal neoplasia in inflammatory bowel disease. Gastroenterology, 138(2): 738–745. Available online: http://www.gastro.org/practice/medical-position-statements.
- Cohen JL, et al. (2005). Practice parameters for the surgical treatment of ulcerative colitis. Diseases of the Colon and Rectum, 48(11): 1997–2009. Available online: http://www.fascrs.org/physicians/practice_parameters.