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Pediatric Inflammatory Bowel Disease Center
The MassGeneral Hospital for Children Inflammatory Bowel Disease Center provides care for children and adolescents with inflammatory bowel diseases (ulcerative colitis, indeterminate colitis, and Crohn’s disease).
The Pediatric Surgery service at MassGeneral Hospital for Children is an international referral center for the complete spectrum of general and thoracic pediatric and neonatal surgical services.
What is ulcerative colitis?
Ulcerative colitis is part of a group of diseases called inflammatory bowel disease (IBD).
It is when the lining of your large intestine (the colon or large bowel) and your rectum become red and swollen (inflamed). In most cases the inflammation begins in your rectum and lower intestine and moves up to the whole colon.
Ulcerative colitis does not normally affect the small intestine. But it can affect the lower section of your small intestine called the ileum.
The inflammation causes diarrhea, making your colon empty itself often. As the cells on the lining of the colon die and come off, open sores (ulcers) form. These ulcers may cause pus, mucus, and bleeding.
In most cases, ulcerative colitis starts between the ages of 15 and 30. Sometimes children and older people get it. It affects both men and women and seems to run in some families (hereditary).
Ulcerative colitis is a long-term (chronic) disease. There may be times when your symptoms go away and you are in remission for months or even years. But the symptoms will come back.
If only your rectum is affected, your risk of colon cancer is not higher than normal. Your risk is higher than normal if the disease affects part of your colon, and greatest if it affects your whole colon.
In rare cases, when severe problems happen, ulcerative colitis can lead to death.
What causes ulcerative colitis?
Experts don?t know what causes ulcerative colitis.
It may be that a virus or bacteria affect the body's infection-fighting system (immune system). The immune system may create abnormal redness and swelling (inflammation) in the intestinal wall that does not go away.
Many people with ulcerative colitis have abnormal immune systems. But experts don?t know if immune problems cause the disease. They also don?t know if ulcerative colitis may cause immune problems.
Having stress or being sensitive to some foods does not seem to cause ulcerative colitis.
Right now there is no cure except for surgery to remove the colon.
Who is at risk for ulcerative colitis?
Some things may make you at higher risk for ulcerative colitis. These include your:
Age.?The disease most often starts when you are between the ages of 15 and 30 years old.
Family history.?Having a family member or close blood relative with ulcerative colitis raises your risk of the disease.
Race and ethnicity.?It happens more often in white people and people of Jewish descent.
What are the symptoms of ulcerative colitis?
Each person?s symptoms may vary. The most common symptoms include:
Extreme tiredness (fatigue)
Loss of appetite
Loss of body fluids and nutrients
Loss of blood (anemia) caused by severe bleeding
In some cases, symptoms may also include:
Redness and swelling (inflammation) of the eyes
Weak and brittle bones (osteoporosis)
The symptoms of ulcerative colitis may look like other health problems. Always see your healthcare provider to be sure.
How is ulcerative colitis diagnosed?
Your healthcare provider will give you a physical exam. You will have some blood tests. The blood tests will check the amounts of your red blood cells and white blood cells. If your red blood cell count is low, this is a sign of anemia. If your white blood cell count is high, this is a sign of redness and swelling (inflammation).
Other tests for ulcerative colitis include:
Stool sample test.This test checks for any abnormal bacteria in your digestive tract that may cause diarrhea and other problems. To do this, a small stool sample is taken and sent to a lab. In 2 or 3 days, the test will show if there is any abnormal bacteria, bleeding, or an infection.
Upper endoscopy. This is also called esophagogastroduodenoscopy (EGD). This test looks at the inside or lining of your food pipe (esophagus), stomach, and the top part of your small intestine (duodenum). This test uses a thin, lighted tube, called an endoscope. The tube has a camera at 1 end. The tube is put into your mouth and throat. Then it goes into your esophagus, stomach, and duodenum. Your healthcare provider can see the inside of these organs. He or she can also take a small tissue sample (biopsy) if needed.
Colonoscopy.This test looks at the full length of your large intestine. It can help check for any abnormal growths, tissue that is red or swollen, sores (ulcers), or bleeding. A long, flexible, lighted tube called a colonoscope is put into your rectum up into the colon. This tube lets your healthcare provider see your colon lining and take out a tissue sample (biopsy) to test it. He or she may also be able to treat some problems that may be found.
Biopsy.Your healthcare provider will take out a tissue sample or cells from the lining of your colon. This will be checked under a microscope.
Lower GI (gastrointestinal) series.This is also called a barium enema. This is an X-ray exam of your rectum, the large intestine, and the lower part of your small intestine (the ileum). You will be given a metallic fluid called barium. Barium coats the organs so they can be seen on an X-ray. The barium is put into a tube and inserted into your rectum as an enema. An X-ray of your belly will show if you have any narrowed areas (strictures), blockages, or other problems.
Blood tests. No blood test can diagnose or rule out ulcerative colitis. But some blood tests can help to monitor the disease.
How is ulcerative colitis treated?
Your healthcare provider will create a care plan for you based on:
Your age, overall health, and past health
How serious your case is
How well you handle certain medicines, treatments, or therapies
If your condition is expected to get worse
Your intended family plans, such as getting pregnant
What you would like to do
There is no special diet for ulcerative colitis. But you may be able to manage mild symptoms by not eating foods that seem to upset your intestines.
Medical treatment may include:
Medicines.Medicines that reduce redness and swelling (inflammation) in your colon may help to ease your belly cramps. More serious cases may need steroids, medicines that fight bacteria (antibiotics), or medicines that affect your infection-fighting system (immune system). Steroids are not a good choice for long-term treatment. Your healthcare provider will talk with you about medicines for long-term control. This may include pills, injections, or both. In addition, placing a medicine into the rectum (foam, enema, or suppository) can be very helpful in controlling your symptoms.
Time in the hospital.This may be needed if you have severe symptoms. The goal will be to give you the nutrients you need, stop diarrhea, and replace lost blood, fluids, and electrolytes (minerals). You may need a special diet, IV (intravenous) feedings, medicines, or sometimes surgery.
Surgery.Most people don?t need surgery. But some people do need surgery to remove their colon. That might happen if you have heavy bleeding, are very weak after being ill for a long time, have a hole (perforation) in your colon, or are at risk for cancer. You may also need surgery if other treatment fails or if the side effects of steroids and other medicines become harmful.
There are several types of surgery, including:
Proctocolectomy with ileostomy.This is the most common surgery. It is done when other treatment does not help. Your entire colon and your rectum are removed. A small opening (stoma) is made in your belly wall. The bottom part of your small intestine (the ileum) is attached to the new opening. Your stool will come out of this opening. It will collect in a drainage bag that will be attached to you.
Ileoanal anastomosis.Your whole colon and the diseased lining of your rectum are removed. The outer muscles of your rectum stay in place. The bottom part of your small intestine (the ileum) is attached to the opening of your anus. A pouch is made out of the ileum. The pouch holds stool. This lets you pass stool through your anus in the normal way. You will still have fairly normal bowel movements. But your bowel movements may happen more often. They may also be more watery than normal.
If your colon remains inside, you will need a colonoscopy from time to time. This is because of your increased risk of colon cancer.
What are possible complications of ulcerative colitis?
Ulcerative colitis is a long-term condition. It can lead to problems over time, including:
Loss of appetite, leading to weight loss
Lack of energy (fatigue)
Severe bleeding (hemorrhage)
Hole or tear (perforation) in the colon
Infection of the colon
Severe fluid loss (dehydration)
Weak, brittle bones (osteoporosis)
Colon cancer, if ulcerative colitis affects much of or the whole colon over a long period of time
In rare cases, when severe problems occur, ulcerative colitis can lead to death.
What can I do to prevent ulcerative colitis?
Experts don?t know what causes ulcerative colitis. They also don?t know how to prevent the disease.
But good nutrition can play an important role in managing the disease. Changes in diet can help reduce symptoms. Some of the dietary changes that may be advised include:
Not drinking carbonated drinks
Not eating high-fiber foods such as popcorn, vegetable skins, and nuts while you have symptoms
Drinking more liquids
Eating more frequent, smaller meals
Keeping a food diary that identifies foods that cause symptoms
Nutritional supplements and vitamins may be advised if nutrients are not being absorbed. If you use complementary or alternative therapies, including dietary supplements and probiotics, it is important to let your healthcare provider know. This is important for ensuring safe care.
Ulcerative colitis requires long-term management. It can cause great physical, financial, and emotional stress to both the person and his or her family. If you or your family members are having trouble coping with this disease, ask your provider for resources. Resources can include mental health counselors or local and online support groups.
When should I call my healthcare provider?
Call your healthcare provider right away if:
Your symptoms come back after they have gone away
Your symptoms get worse
You have new symptoms
Key points about ulcerative colitis
Ulcerative colitis is when the lining of your large intestine and your rectum become red and swollen (inflamed).
It is part of a group of diseases called inflammatory bowel disease (IBD).
It affects men and women equally and seems to run in some families (hereditary).
It is a long-term disease.
Experts don?t know what causes it or how to prevent it.
It can cause emotional, physical, and financial stress to both you and your family
While medicines can't cure it, they can control symptoms in most cases.
Lifestyle changes may be advised to help manage symptoms.
Tips to help you get the most from a visit to your healthcare provider:
Know the reason for your visit and what you want to happen.
Before your visit, write down questions you want answered.
Bring someone with you to help you ask questions and remember what your provider tells you.
At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.
Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.
Ask if your condition can be treated in other ways.
Know why a test or procedure is recommended and what the results could mean.
Know what to expect if you do not take the medicine or have the test or procedure.
If you have a follow-up appointment, write down the date, time, and purpose for that visit.
Know how you can contact your provider if you have questions.
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