Inflammatory Bowel Disease Your Illness and Its Treatment
What Is Inflammatory Bowel Disease? Inflammatory bowel disease (IBD) is inflammation (irritation and swelling) of the digestive tract. Your digestive tract is anywhere that food travels within your body. The symptoms you have depend on your type of IBD: ulcerative colitis or Crohn s disease. Symptoms may include abdominal pain or cramping and diarrhea. No one knows the exact causes of IBD. But it can be treated. Work with your doctor. As a team, you can help prevent IBD from intruding on your life. Ulcerative Colitis Ulcerative colitis is a type of IBD that occurs in the rectum. It also can occur in the colon (large intestine) at the same time. Ulcerative colitis often starts with inflammation and small sores. It affects just the lining (innermost layer) of the rectum and colon. Crohn s Disease Crohn s disease is a type of IBD that occurs anywhere from the mouth to the anus. In most cases, it affects the last part of the small intestine. Crohn s disease can cause inflammation, sores, infections, and other problems. It can affect all layers of the digestive tract. This booklet is not intended as a substitute for professional medical care. Only your doctor can diagnose and treat a medical problem. 1998, 2011, 2014 Krames StayWell, LLC. www.kramesstaywell.com 800-333-3032 All rights reserved. Made in the USA. 2
Your Treatment Options Your doctor can treat IBD in many ways. Treatment helps you stay as active as you want to be. Keep in mind that IBD is considered chronic. That means it usually can t be cured. But treatment may ease symptoms. And even though you have a chronic illness, you can still live a full life. Treatment may include: Medication. Medication can help control the disease and reduce symptoms. Lifestyle changes. Certain foods can worsen symptoms. You may need to change what you eat. To a lesser degree, stress also can worsen symptoms. Reducing stress may help. Surgery. Surgery can help control IBD, relieving digestive tract symptoms. It is often considered a cure for ulcerative colitis. In This Booklet The Digestive Tract at Work...4 How IBD Affects the Digestive Tract...5 Diagnosing and Monitoring IBD...6 Treating IBD with Medication...8 Managing Daily Life...10 Managing Nutrition....11 If You Have Surgery...12 Your Surgical Experience...14 3
The Digestive Tract at Work The digestive tract starts at the mouth and ends at the anus. After you chew and swallow food, the stomach turns it into a liquid. The liquid then moves through the small intestine. This is where nutrients are absorbed. Next, the large intestine removes water and salts from the liquid. This helps form a solid stool. Stool is then stored in the rectum. Finally, stool leaves the body through the anus. A Healthy Digestive System The esophagus carries food from the mouth to the stomach. The stomach breaks down food into a liquid mixture. The small intestine absorbs nutrients after foods have been turned into a liquid by the stomach. The ileum is the last part of the small intestine. Digested food passes from the ileum to the colon as liquid waste. The large intestine (colon) absorbs water and minerals such as salt, forming a solid stool. The rectum stores stool until a bowel movement occurs. The anus is the opening where stool leaves the body. 4 Normal layers of the colon A healthy intestine has smooth inner and outer layers.
How IBD Affects the Digestive Tract IBD can cause many problems within the digestive tract. The inflammation may lead to cramps, diarrhea, and blood in the stool. Symptoms may vary from person to person. Symptoms also depend on whether you have ulcerative colitis or Crohn s disease. Ulcerative Colitis Symptoms Most symptoms of ulcerative colitis relate to bowel movements. Often, the first symptom is increasingly loose stools over time. Here are some other symptoms: to have a bowel movement right away) Inflamed inner layer of the colon Crohn s Disease Symptoms Crohn s disease can affect any part of the digestive tract. Some of the signs and symptoms of Crohn s disease can include: weight loss the digestive tract that may drain into other parts of the body) small or large intestine) Sores within the colon Inflamed layers of the colon Ulcerative colitis affects the innermost layer of the rectum and colon. Crohn s disease can affect all the layers of the digestive tract. 5
Diagnosing and Monitoring IBD A medical history, physical exam, and tests may be done to diagnose and monitor IBD. By watching over your health, your doctor can help keep problems from worsening. For example, some IBD patients may be at higher risk of rectal or colon cancer. Early cancer screening can help show if such a problem exists. Plan your care closely with your doctor. As a team, you can find the best ways to treat your IBD. Working with Your Doctor You and your doctor can pinpoint your IBD symptoms. When do they bother questions can help you learn factors that may worsen a flare-up. A flare-up is when your symptoms suddenly become severe. In some cases, IBD affects more than just the digestive tract. Your doctor may do a complete physical exam. You may have one or more of the following: or sores) Questions to Ask Your Doctor IBD may seem overwhelming. Ask your doctor anything that concerns you about your IBD. Here are some questions you might be wondering about: 6
Lab Tests Blood or stool tests can help your doctor learn details about your IBD. These tests can t diagnose IBD. But they can monitor changes in your health. Lab tests also can show if something other than IBD is causing your symptoms. Endoscopy and Biopsy Imaging Tests An upper GI series and a barium enema are x-ray tests. A CT scan uses computers and is another type of imaging test. The images can help your doctor learn more about your IBD. Each of these tests uses contrast dye to enhance the image. You may drink the dye, be injected with it, or have an enema before the image is taken. An x-ray image from a barium enema Endoscopy (also called sigmoidoscopy and colonoscopy) allows the doctor to look directly into the rectum or colon. A thin, flexible tube is inserted through the anus. The tube is then moved to the rectum and possibly the colon. A small amount of air may be pumped into the rectum or colon. This expands the rectum or colon to help provide the best image. During endoscopy, the doctor may remove a small tissue sample. This is called a biopsy. It can show if IBD is causing your symptoms. It also can track changes in your digestive tract. Biopsies can be used in cancer screening. 7
Treating IBD with Medication Your doctor may prescribe medication to control your symptoms and improve your quality of life. Medication won t cure IBD. But it can help keep the disease from slowing you down. As always, work closely with your doctor. Your medication or dosage may need to be changed if you have certain side effects or if your symptoms change. Anti-Inflammatories Special anti-inflammatories treat the lining of the intestine. These medications can reduce inflammation and discomfort. But they re not like aspirin or other over-the-counter medications. They must be prescribed by a doctor. The most common anti-inflammatories for IBD are called 5-aminosalicylic acid (5-ASA) compounds. They can help control symptoms over long periods of time. 5-ASA compounds may be taken as pills. But they also can be taken as an enema or suppository (the medicine is put directly into the rectum). The 5-ASA compound prescribed most often is in the sulfa family. Your doctor will explain its side effects to you. Some of them include: Less common but more severe side effects may include fever and heart or liver problems. Severe side effects can be a sign of a sulfa allergy. If you have a sulfa allergy, your medication may need to be changed. Your doctor will explain the side effects and other details of any new medications you may need to take. Call your doctor if your side effects become severe. 8
Corticosteroids Your doctor may prescribe corticosteroids to reduce inflammation. Unlike 5-ASA compounds, corticosteroids are usually taken for short periods only. They shouldn t be taken in remission (a long period without severe symptoms). Taken over time, they can cause severe side effects. They also may put you at risk for diabetes (a blood sugar problem). Your doctor will watch you for: Short-Term Side Effects Other Medications Long-Term Side Effects Immunomodulators treat the part of your body that fights disease (the immune system). By treating the immune system, inflammation may be reduced. Immunomodulators can be taken for long periods. But you may need to see your doctor more often than usual for monitoring. Antibiotics fight the bacteria that can lead to infections in some cases of Crohn s disease. Some patients may get sores in the digestive tract. These sores then drain into other parts of the body. This can lead to an infection. In some cases, antibiotics also help reduce inflammation. Handling Side Effects You and your doctor will discuss side effects. In most cases, side effects are easy to manage. But sometimes they can become severe enough that you need to change medication. Call your doctor if you re having trouble managing. Also call if you re having any side effects that are unexpected. 9
Managing Daily Life You can lead a full life even if you have IBD. Focus on keeping your symptoms under control. And don t let this disease isolate you. By planning ahead and working with support groups, you can find ways to cope. And you may even help others who have IBD. Have a Plan Make this your goal: IBD won t keep me from the activities I enjoy. You may need to do some planning to reach that goal. But by staying positive, you can help make sure you re in control not IBD. Here are some other tips: on the road or when you don t have easy access to bathrooms. your symptoms. Keep those foods on hand, both at home and at work. can teach you what to do if you have a flare-up while on the road. Find a Support Group IBD support groups can help you with many concerns you may have. Other people have felt much of what you may you re not alone can be a great comfort. Or someone in a support group may offer a travel tip or a coping skill that s perfect for you. And don t forget how satisfying it can feel to help another IBD patient who s in need. 10
Managing Nutrition You may be able to eat most foods until you have a flare-up. But like anyone else, you need to make healthy eating choices. Some of the healthiest foods can make symptoms worse, though. Keeping track of your problem foods may be helpful. Ask your doctor any questions you have about healthy eating. Avoid Your Problem Foods There s no rule for which foods can be a problem. How you feel after eating them is the best guide. You may need to avoid high-fiber foods and foods that are hard to digest. These can include fresh fruits and vegetables. High-fat foods, such as whole-milk dairy products and red meat, also can worsen symptoms in a flare-up. Write down what you eat and how it affects you. If one kind of food often gives you trouble, stay away from it. Also note the foods that work well for you. Your doctor may have you see a nutritionist to come up with the best food choices for you. A nutritionist can help ensure that you eat foods that are safe while getting proper nourishment. If You Need Special Nourishment Foods That Are Often Safe No two people respond the same to all foods. But these choices are often safe to eat during a flare-up: water (don t eat the skin) or pears In rare cases, the small intestine can t absorb nutrients. Total parenteral nutrition (TPN) is a treatment that provides nourishment through an IV (intravenous) tube. This lets you get nutrition without eating, giving your digestive tract time to rest. TPN also may be used to help prepare for surgery, if needed. TPN can be done either in the hospital or at home with the aid of a home health nurse. 11
If You Have Surgery Surgery can ease ulcerative colitis and Crohn s disease symptoms. For ulcerative colitis, surgery may rid you of all symptoms related to the digestive tract. Whether to have surgery is a choice for you to make with your doctor. Many patients decide on it when other treatments no longer work. Portion of intestine removed Ends of intestine sewn together Limited Bowel Resection This surgery is done more for Crohn s disease than for ulcerative colitis. It s also done to treat an internal fistula (an abnormal opening in the intestine that leads to another part of the body). is removed (resected). abscess (infected area), the abscess is drained or removed. together. This connection is called an anastomosis. When healed: Bowel movements still occur through the anus. Colon and rectum removed Pouch for collecting waste Ileoanal Pouch This surgery cures ulcerative colitis. Removing the rectum and colon gets rid of all digestive tract symptoms. are left in place. to form a pouch within the body. The pouch works like a rectum. It stores waste until a bowel movement occurs. temporary ileostomy may be needed as the intestine heals. This is a procedure that lets waste pass into a pouch outside the body. When healed: Bowel movements still occur through the anus. 12
Colon, rectum, and anus removed Stoma for passing waste Proctocolectomy with Permanent Ileostomy This surgery cures ulcerative colitis by removing the parts of the digestive tract affected by the disease. removed. The anus is also removed. stoma (the small intestine is sewn to an opening in the abdominal wall to let waste leave the body). When healed: Waste passes from the small intestine, through the stoma, and into a pouch outside the body. Other Surgeries Colon, rectum, and anus removed Stoma for draining through a catheter Continent Ileostomy This surgery is done for people who do not wish to have an external pouch. It may be done after a permanent ileostomy. reshaped to form a pouch that holds waste inside the body. an opening in the abdominal wall to let waste leave the body. When healed: Waste collects within the pouch. It is then drained from the stoma through a thin tube (catheter). A bandage covers the stoma when it s not in use. Strictureplasty. This surgery widens a stricture (narrowed portion of intestine). Crohn s disease can sometimes lead to strictures. Anal fistula surgery. This surgery helps heal an anal fistula (an abnormal opening near the anus). It may be done on an outpatient basis. nearby tissue and skin heal. suture (stitch) may be temporarily placed in the fistula. This allows an abscess to drain. Internal pouch for collecting waste 13
Your Surgical Experience You need to know what to expect before, during, and after surgery. Take some time to prepare. This can help limit complications. You may be in the hospital for a week or longer. Once out of the hospital, recovery may take up to 6 months, depending on the type of surgery you had. Preparing for Surgery Preparation may begin a few weeks before surgery. You will receive instructions for bowel prep. This helps ensure that your digestive tract is ready. Preparation can include the following: may need to stop taking some of them before surgery. care provider called an ostomy nurse will meet with you. The two of you will decide on the stoma s placement. surgery. Switch to a diet of clear liquids such as broth. surgery. This includes water, gum, and breath mints. of surgery, swallow it with only small sips of water. Risks and Complications Surgery for IBD has certain risks and complications. Your doctor will discuss them with you. They may include: 14
Recovering from Surgery After surgery, you ll be moved to a recovery area. A doctor or nurse will give you medication to ease any discomfort. While in recovery, you ll be closely monitored. Soon you ll be moved to another room. Try to get up and walk around as soon as you ment can improve digestive function. Walking also helps your heart and lungs. And it can keep clots from forming in your legs. During the first few days, you ll get nutrition nasogastric tube at first to keep your stomach empty. It can help your digestive tract heal. You also may meet with an ET nurse. He or she will teach you how to care for yourself as you heal. Getting Back to Normal Stay positive. That s a great way to help your recovery. Depending on your surgery, even mild activity can make you tired in the first few weeks or months. heavy lifting in the first month. bathe soon after surgery. But don t drive until your doctor says you can. After a few months, you may be feeling back to normal. For many people, it s well worth the wait. They often have more energy and confidence than they ve felt in years. When to Call Your Doctor Call your doctor right away if you notice any of these symptoms: 15
Enjoying an Active Life IBD doesn t need to get in the way of your life. Work closely with your doctor. If you have flare-ups or other problems, your doctor can help control your symptoms. Then you can get out and enjoy yourself again. Consultants: Mark Lane Welton, MD, Colon and Rectal Surgery With contributions by: Susan C. Briley, MD, FACS, Colon and Rectal Surgery William Timmerman, MD, Colon and Rectal Surgery National Resources The following resources can offer valuable help. Crohn s & Colitis Foundation of America 800-932-2423 www.ccfa.org United Ostomy Associations of America 800-826-0826 www.ostomy.org Local Resources Your doctor may suggest you call these resources: www.kramesstaywell.com 800.333.3032 11003 1403