Understanding Learning is the first step to getting help.

Transcription

1 Understanding Inflammatory Bowel Disease (IBD) Learning is the first step to getting help. This booklet has been created through an educational grant provided by Fulford India Ltd., A subsidiary of Schering-Plough Corporation. Issued in the public interest by: I can work from 9 to 5 again Colitis and Crohn s Foundation, 6-E, Tagore Nagar, Ludhiana , Punjab, India. ccfi2007@gmail.com Inflammatory Bowel Disease (IBD) Ulcerative colitis (UC) Crohn s disease (CD) Back Cover

2 INFLAMMATORY BOWEL DISEASE (IBD) is a group of inflammatory conditions of the large intestine and, in some cases, the small intestine. It should not be confused with irritable bowel syndrome. The main forms of IBD are Crohn's disease (CD) and ulcerative colitis (UC). Inside Cover 1

3 ULCERATIVE COLITIS ULCERATIVE COLITIS Learning about UC gave me the head start I needed in my recovery. Know the facts Ulcerative Colitis (UC), an inflammatory bowel disease, can have serious effects on every aspect of your life. The first step to controlling your disease is gaining knowledge. Take the time to read this brochure so that you can have an informed discussion with your doctor. By educating yourself about UC, you can work with your doctor to make sure you're doing all you can to help manage your disease, and live the life you want. WHAT IS ULCERATIVE COLITIS? Ulcerative colitis (UC) is a disease that causes inflammation and sores, called ulcers, in the top layer of the lining of the large intestine. The inflammation usually occurs in the rectum and the lower part of the colon, but it may affect the entire colon. Ulcerative colitis does not affect the small intestine except for the lower section, called ileum. WHAT CAUSES ULCERATIVE COLITIS? The development of ulcerative colitis appears to be influenced by two factors: genetic susceptibility and environmental triggers. These two factors eventually cause the immune system to damage the lining of the colon. Genetics Ulcerative colitis tends to run in families, suggesting that genetics have a role in the disease. About 10 to 25 percent of affected people have a first-degree relative (either a sibling or parent) with either ulcerative colitis or Crohn's disease. Environment Several environmental factors, such as infections, are suspected of triggering UC in people who have a genetic susceptibility. It is not caused by emotional distress or sensitivity to certain foods or food products but these factors may trigger symptoms in some people. However, no single factor has been consistently proven to be the main trigger. COMMON VOCABULARY Doctors often use specific terms to reflect the extent of the colonic involvement. The extent of involvement is often related to the severity of symptoms and the course of the disease over time. Furthermore, treatments vary depending upon which parts of the colon are involved. Ulcerative proctitis refers to disease limited to the rectum. Distal colitis or proctosigmoiditis is used when the inflammatory process extends up to the sigmoid colon. Left sided colitis refers to the disease extending to but not beyond the splenic flexure (the sharp bend in the large intestine where the transverse colon joins the descending colon, located under the spleen). Pancolitis is used when the inflammatory process extends beyond the transverse colon. The symptoms of ulcerative colitis can be mild, moderate or severe and can fluctuate over time. Doctors use the term flare to describe the periods in which the disease becomes more active.the term remission is used to describe periods of quiescence or inactivity. 2 3

4 Everyone has different symptoms; it's vital to identify yours. I always talk to my doctor, since he understands my needs and condition. Colonic Pseudopolyps WHAT ARE THE SYMPTOMS OF ULCERATIVE COLITIS? Ulcerative colitis occurs most often in people aged between 15 and 40 years, although children and older people can also develop the disease. Ulcerative colitis affects men and women equally. The most common symptoms of ulcerative colitis are abdominal pain and bloody diarrhoea. Patients also may experience any of the following: Fatigue Weight loss Loss of appetite Rectal bleeding Loss of body fluids and nutrients About half the patients have mild symptoms. Others suffer from frequent fever, bloody diarrhoea, nausea, and severe abdominal cramps. Ulcerative colitis may also cause problems such as arthritis, inflammation of the eye, liver disease (fatty liver, hepatitis, cirrhosis, and primary sclerosing cholangitis), osteoporosis, skin rashes, anemia, and kidney stones. No one knows for sure why problems occur outside the colon. Scientists think that these complications may occur when the immune system triggers inflammation in other part of the body. These problems are usually mild and go away when the colitis is treated. HOW IS THE DIAGNOSIS OF UC MADE? Ulcerative colitis is usually diagnosed based on signs and symptoms noted during a thorough medical history and physical examination, along with the results of certain diagnostic tests, including blood and stool tests, a sigmoidoscopy (where the doctor passes a flexible instrument into the rectum and lower colon) or colonoscopy (a similar procedure, which gives the doctor a visualization of the entire colon) and histology. These steps are also helpful for ruling out other causes of colitis, including Crohn's disease, and certain infections. Blood tests are performed to check for anaemia (a low haemoglobin level) and to give an idea of your overall profile. Stool tests are used to eliminate infectious causes of diarrhoea. WHEN SHOULD I TALK TO MY DOCTOR? Whether or not you have been diagnosed with UC, you should consult a doctor if you experience any of its symptoms, including those listed below: Severe abdominal pain Blood in your bowel movements Ongoing diarrhoea Endoscopy image Unexplained fever that lasts longer than a couple of days 4 5

5 Severe haemorrhage Perforation Extensive inflammation can lead to a tear in the intestinal wall, resulting in leakage of bowel contents outside the intestine. Categorized by sudden, severe abdominal pain, shock, and excessive abdominal tenderness, this condition usually requires emergency surgery. superficial ulceration and loss of mucosal architecture Toxic megacolon This serious complication may occur when inflammation spreads from the lining of the colon to involve the entire intestinal wall. Because this involvement temporarily stops the normal contractile movements of the intestine, the large intestine may greatly expand. The person is usually severely ill with fever, abdominal pain and distension. Immediate and aggressive measures are required to minimize the risk of death. IS COLON CANCER A COMMON CONCERN? HOW IMPORTANT IS AN EARLY DIAGNOSIS? An early diagnosis is the first step in beginning treatment. This is particularly important with chronic conditions like UC, which can progress over time. Dealing with any health problem can be emotionally and physically stressful, but the sooner you receive a proper diagnosis, the better chance you will have to control your symptoms and minimize your discomfort. In the meantime, be patient. An accurate diagnosis may take some time. You should also take the time to educate yourself. Even though your doctor has the clinical expertise needed to make a diagnosis, your involvement is important in understanding what may be happening in your body and what you can do to promote your own good health. WHAT ARE THE COMPLICATIONS OF UC? Complications are less likely to occur in appropriately treated patients. Longstanding and/or severe ulcerative colitis can be associated with serious and sometimes life-threatening complications. T h e s e i n c l u d e s e v e r e h a e m o r r h a g e, t o x i c megacolon, perforation and colorectal cancer. Radiography images Colorectal cancer usually arises from premalignant changes (dysplasia) of the colonic lining which can be detected by regular screening. Although some of these changes do not progress to cancer, there is currently no way of knowing which changes will take a more serious course. Because of the risk of developing cancer, surveillance for cancer is recommended. Surveillance entails a colonoscopy at specified time intervals. This procedure can often detect premalignant changes and early colorectal cancer, and studies suggest that those detected early during surveillance should undergo a colectomy. WHAT ARE THE EXTRAINTESTINAL MANIFESTATIONS OF UC? UC may be associated with a number of complications outside the intestine. These include: Inflammation of the eye, which can cause redness and pain and, rarely, lead to vision loss. Skin disorders, where painful nodules or deep ulcers may develop on the skin. Arthritis, which may involve the large joints (e.g., knee), or the spine. Spinal involvement may include a disease called ankylosing spondylitis, which is an important cause of disability. Increased risk for certain liver disorders, such as scarring of the bile ducts, which can lead to liver failure and liver transplantation. 6 7

6 Choosing the right therapy for you is essential WHAT IS THE TREATMENT FOR ULCERATIVE COLITIS? Treatment of UC is tailored to the region of the colon that is involved, the severity of the inflammation and symptoms, and individual factors. For most patients, ulcerative colitis is characterized by a frustrating pattern of flares and remissions. As a result, the two main goals of treatment are to achieve and maintain remission. This usually requires long term medications. The most common drugs used to treat UC include aminosalicylates and immunosuppressive drugs. All drugs can cause side-effects; however, it is important to remember that many people take these drugs without developing serious sideeffects, and that these drugs are used only when their benefit outweighs the potential risks. Steroids are used in acute cases and should be tapered off gradually. Continuous use of steroids is associated with many side effects. Although drugs and medical therapy are central in the treatment of ulcerative colitis, surgery also has an important role in relieving symptoms, addressing serious complications, and improving quality of life. It can even be lifesaving. Specific circumstances that may require surgery include: the persistence of symptoms despite high doses of steroids; dependency upon steroids to maintain remission; worsening or new complications despite maximal drug therapy; the occurrence of serious side effects of drugs; and occurrence of premalignant or malignant changes in the colon. The most common surgery is a proctocolectomy with ileostomy i.e. removal of the colon along with the rectum, which is followed by ileal pouch anal anastamosis (IPAA). WHAT ARE THE VARIOUS DRUGS USED IN UC? Aminosalicylates (5-ASA agents). Drugs such as sulfasalazine, mesalamine and balsalazide are used to reduce the inflammation of UC and to prevent flare-ups. These drugs are usually taken orally, although they may also be given rectally as enemas. They are usually well-tolerated, but possible side effects of mesalamine preparations include nausea, vomiting, heartburn, diarrhoea, and headache. These drugs are effective in treating mild to moderate UC, and are also useful in preventing disease relapse. Immunomodulators. Drugs such as azathioprine and 6-MP have been used to maintain remission and decrease the need for steroids. However, this class of drugs may take up to 2-4 months to produce their maximal effect. You may experience side effects such as nausea, vomiting, and diarrhoea, as well as low white blood count, liver problems, pancreatitis and reduced resistance to infection. If you take these drugs you may need to have your blood count monitored on a regular basis. Cyclosporine has been given to some people who are suffering from severe flare-ups and have not responded to corticosteroid therapy. Steroids. Corticosteroids are usually given to patients with moderate to severe disease. Prednisolone is often used to control the inflammation of UC, followed by sulfasalazine or mesalamine to maintain remission. Because of the many side effects that may occur with steroid treatment, your doctor will try to wean you off this therapy as quickly as possible. Antidiarrhoeal medications. Antidiarrhoeal agents may be prescribed by your doctor. In severe cases, your doctor will closely monitor you if you are taking these drugs to avoid triggering toxic megacolon. If you are dehydrated because of diarrhoea, you will be treated with fluids and electrolytes. Biologicals. Biologicals are the latest form of therapy being used to treat ulcerative colitis. These treatments work by targeting an underlying cause of inflammation that leads to the painful and unpredictable symptoms characteristic of ulcerative colitis. 8 9

7 intestine, called the ileum, to it. The stoma is about the size of a coin and is covered by a pouch. Waste travels through the small intestine and exits the body through the stoma and into the pouch. The patient empties the pouch as needed. Ileoanal anastomosis This is a fairly new procedure that allows the patient to have bowel movements via the normal route because the small intestine is connected to the anus. The colon is still removed but the doctor creates an internal pouch from the small bowel and attaches it to the anus. Waste is stored in the pouch and passed through the anus in the usual manner. Complications of surgery As with any surgical procedure, complications may arise. Common long-term complications include: Small bowel obstruction A blockage in the small bowel can cause nausea, vomiting, cramps and abdominal pain. Approximately one-third of those who experience this complication require surgery to release the bowel from the source of obstruction. The obstruction is usually caused by scar tissue that forms in the abdominal cavity after surgery, called an adhesion. WHAT IS THE ROLE OF SURGERY? Surgery may be required to provide relief for patients who have not responded to medical treatment or whose health has been threatened by bleeding, severe illness, rupture of the colon or other complications of treatment. In addition, surgery is required when colon cancer or dysplasia, a condition that precedes it, develops. Removing the colon is called a colectomy and may be performed in 25-40% of patients. Pouchitis At least 30% of people who have received the ileoanal pouch develop inflammation, called pouchitis. The symptoms of pouchitis include frequent bowel movements and/or diarrhoea. These symptoms can be mild or severe, acute or chronic. Some patients require long-term antibiotics to manage this condition. Pouch failure Approximately 8-10% of patients develop pouch failure. Unlike pouchitis, failure requires that the pouch be removed and necessitates a switch to a permanent ileostomy. Two common surgical procedures are. Ileostomy During this procedure, the surgeon creates a small opening in the abdomen, called a stoma, and attaches the end of the small 10 11

8 You may want to consider creating a file on your computer with all this information. You can print it out and give it to your doctor on the first visit and then update it for future visits. Subsequent visits In addition to the information listed above, you can help your doctor assess how well your treatment is working by letting him or her know the following: How your symptoms have changed or improved How you feel after taking your medication What concerns you may have about the medications you are taking How your symptoms are affecting your quality of life. Remember, communication is the key to getting the best possible treatment. TALKING ABOUT UC WITH YOUR DOCTOR Let's face it, there are some aspects of UC that are embarrassing to talk about. But it is important for you to be able to discuss your illness. UC is a chronic disease and the people around you need to know what is happening to you and how they can help. It is important that you take an active role in the treatment of your UC. You must be able to talk to your doctor about your symptoms and how they are affecting your life. The first visit If you are visiting a doctor for the first time, you may want to make sure that all your medical records have been transferred. Also, you may want to consider writing down some points to discuss and questions to ask. Include the following: A description of your symptoms Foods that you think aggravate your symptoms Any other medical conditions you may have A list of all medications, vitamins, and herbal remedies you may be taking Any concerns you have about the medications you are taking Any drug allergies Any questions or concerns you may have 12 13

9 Having the support of my friends and family really helps TALKING ABOUT UC WITH FAMILY AND FRIENDS People living with a chronic illness need the support of family and friends. That's why it is important that you talk to them about UC, and how it's affecting your life. Many people don't know what UC is, and may have misconceptions about what causes it or how it is treated. Sometimes, it's hard to remember that UC can affect the people around you. For instance, a flare-up may interrupt travel or holiday plans. Encouraging those close to you to express their feelings can help alleviate misunderstandings or feelings of disappointment. Talk openly Educating your family and friends allows them to be active members of your support team. By being honest about your feelings and what you are going through, you can help family members and friends know that their support is needed and appreciated. Consider therapy UC can cause stress for the entire family. Individual or family counselling may help you talk through issues your family is facing and help you get through a particularly rough period. Discuss financial issues If you are unable to work or can't work full time, discuss financial issues together as a family and come to a mutually agreeable solution. By addressing these issues early, you and your family will be prepared if a problem arises. TALKING ABOUT UC WITH YOUR CO-WORKERS UC may make work challenging. Many people try to conceal their illness from their employer and co-workers. You know your work environment best. If you are comfortable speaking to your supervisor about your disease, initiate a conversation. Chances are, your supervisor will be glad you did. Be honest. It may be embarrassing to discuss your symptoms with your employer. But if your employer understands what you are experiencing, he or she may be able to accommodate you so you can continue to perform well at your job. Ask for what you need. Sometimes it may be something minor, such as sitting closer to the bathroom. Or you may want to avoid lunch meetings or travelling. Or maybe you want to telecommute when you are experiencing a flare-up. Don't be afraid to ask for what you need. Discuss flare-ups. You may need to leave work early or take time off during a flareup. Talk to your employer ahead of time about how your work will be handled, and if the time off will be paid or unpaid. Know your rights. Discrimination against any employee on the basis of illness is illegal. But unfortunately it does happen so you should familiarize yourself with your rights. WHERE TO GET MORE INFORMATION Your doctor is the best resource for finding out important information related to your particular case. Not all patients with ulcerative colitis are alike, and it is important that your situation is evaluated by someone who knows you as a whole person

10 CROHN'S DISEASE Crohn's disease WHAT IS CROHN S DISEASE? Crohn s disease is an ongoing disorder that causes inflammation of the digestive tract, also referred to as the gastrointestinal (GI) tract. Crohn s disease can affect any area of the GI tract, from the mouth to the anus, but it most commonly affects the lower part of the small intestine, called the ileum. The swelling extends deep into the lining of the affected organ. The swelling can cause pain and can make the intestines empty frequently, resulting in diarrhea. While ulcerative colitis causes inflammation Esophagus Small Intestine Ileum (Lower part of small intestine) Appendix Stomach Large Intestine (Cloon) Rectum and ulcers in the top layer of the large intestine lining, in Crohn s disease, all layers of the intestine may be involved, and normal healthy bowel can be found between sections of diseased bowel. What causes Crohn s disease? The cause of Crohn's is unknown. However, research suggests that Crohn's may result from an interaction among genetics, the immune system, and something in the environment. Crohn's disease most often appears when people are between the ages of 15 and 35, although children and the elderly may also be affected. Anus Who is at risk? Crohn s disease affects men and women equally and seems to run in some families. About 20 percent of people with Crohn s disease have a blood relative with some form of inflammatory bowel disease, most often a brother or sister and sometimes a parent or child. Crohn s disease can occur in people of all age groups, but it is more often diagnosed in people between the ages of 20 and 30. What are the symptoms of Crohn s disease? The most common initial symptoms of Crohn's disease include abdominal pain, cramping, and diarrhea. These symptoms show up primarily after meals, and pain is usually centered at or below the navel, often in the lower right part of the abdomen. Other symptoms of Crohn s include Loss of appetite Rectal bleeding Weight loss Conditions with similar symptoms Fever Joint pain Fatigue Sores around the anal area Some people may also develop fistulizing Crohn's, in which the intestinal wall develops fistulas or tunnels that connect the intestine to adjacent areas, including the skin, bladder, vagina, intestine, and perianal areas. Sometimes other conditions can cause abdominal symptoms that appear to be similar to those of Crohn s. These conditions include: Intestinal tuberculosis Ulcerative colitis Irritable bowel syndrome Appendicitis Diverticulitis Peptic ulcer disease

11 HOW IS CROHN S DISEASE DIAGNOSED? An accurate professional diagnosis is the first step in treating Crohn s. Proper diagnosis is particularly important with a condition like Crohn's, because its symptoms may mimic those of other conditions and its effects are chronic, progressing over time. Diagnostic tests To confirm his or her diagnosis and to rule out other conditions that can cause similar symptoms, such as other inflammatory bowel diseases, colitis, celiac disease, or irritable bowel syndrome your physician will probably perform a complete physical examination and order medical tests. These diagnostic tests may include: Blood tests Although a complete blood count cannot provide a positive diagnosis of Crohn's, physicians usually order the test in suspected cases because it may reveal intestinal bleeding, an infection, or an inflammatory condition. Radiologic examinations These exams help your physician see inside your body to determine whether you have Crohn s. Different types of tests include: Barium enema This test helps physicians visualize the colon and rectum. Upper GI and small bowel follow-through In this test, x-rays help examine the esophagus, stomach, duodenum, and small intestine after a patient drinks a barium-based liquid. Enteroclysis In this test, a tube is inserted into the nose and guided through the stomach to the duodenum, which is where the small intestine begins. A bariumbased liquid is then infused through the tube, and x- rays are used to reveal abnormalities within the small intestine. Computerized tomography (CT) scan: This extremely precise x-ray is used to detect abnormalities in the liver, kidneys, and intestines after a dye is ingested, administered intravenously, or inserted through the rectum. Ultrasound By using sound waves, this test examines organs of the pelvis and abdomen without exposure to radiation. Magnetic resonance imaging (MRI) By using radio waves and superconducting magnets, this test can help detect fistulas and abscesses within a person s body without exposure to radiation. Stool tests These noninvasive tests examine stool samples to determine whether a patient has Crohn s disease, ulcerative colitis, or a bacterial infection. Urine tests Also called urinalysis, these tests are used to detect the presence of bacteria, red blood cells, and white blood cells in your urine. When bacteria and white blood cell levels are raised, it may indicate a urinary tract infection, which can be a complication of Crohn s. Endoscopic examinations These tests use a tool called an endoscope a thin, flexible, lighted tube that is linked to a computer and video monitor. In an endoscopic exam, the endoscope is inserted into the rectum, mouth, or small abdominal incision to give gastroenterologists a detailed view of the intestinal tract. Different endoscopic exams may include Sigmoidoscopy This test is the most commonly performed endoscopic exam used to confirm a diagnosis of Crohn s. By using either a flexible or rigid instrument, a physician can evaluate the rectum and lower end of the colon for signs of inflammation

12 Colonoscopy This test examines the full length of the colon, as well as the lower part of the small intestine. Upper endoscopy In this exam, an endoscope is placed into a patient s mouth and guided through the stomach to the upper intestine. Although there is no cure for Crohn's, the sooner Crohn s is diagnosed, the better chance you have of managing its symptoms and avoiding potentially serious complications of the disease. HOW IS CROHN S DISEASE DIAGNOSED? In most cases, people with Crohn's disease are treated by a gastroenterologist. Sometimes your gastroenterologist may be an internist or family practitioner. WHAT ARE THE COMPLICATIONS OF CROHN S DISEASE? The complications that Crohn s patients experience depend on the location and severity of the disease. Some complications can be life threatening, while others are manageable with the help of treatment plans prescribed by a gastroenterologist. SERIOUS COMPLICATIONS CROHN S MAY CAUSE SERIOUS COMPLICATIONS, WHICH CAN HAPPEN OVER THE COURSE OF THE ILLNESS: Obstruction Obstructions can occur when the intestinal wall swells inward, reducing the capacity for fluids to flow through the intestine. A patient may experience painful cramps or vomiting due to food that is not able to bypass the obstruction. Patients who experience an obstructive episode are usually hospitalized and given intravenous fluids and salts to compensate for fluid losses. Fistula Sometimes ulcers caused by Crohn's will channel through the gut wall to adjacent areas, including the skin, bladder, vagina, intestine, and perianal areas. These occurrences are known as fistulas and may require medical or surgical therapy. Abscess An abscess is a localized collection of bacteria that eventually accumulates pus and places painful pressure on adjacent tissues. A fistula that tracks into the abdominal cavity may produce infection and form an abscess. Abscesses may also occur in the pelvic tissues or the perineum, if a fistula fails to drain. Abscesses can be difficult for gastroenterologists to diagnose; however, after they are located, they should be drained. This may require surgery. Patients are usually given a course of antibiotics to reduce the risk of further infection. Free perforation A free perforation is the formation of a hole in the bowel wall that allows intestinal contents to enter the abdominal cavity. Signs of free perforation include sudden, severe abdominal pain, shock, and excessive abdominal tenderness. The infection that results is called peritonitis and requires emergency surgery in which the leak is sealed and the abdominal cavity is cleansed to stop infection. Hemorrhage In rare cases, a bleeding ulcer may burrow through the gut wall and shear an artery. This produces a life-threatening hemorrhage that may require blood transfusions and special measures to promote blood clotting. Sometimes emergency surgery is required. People with Crohn s may experience chronic or long-lasting complications that require ongoing management: Anemia Anemia is a condition that results from lack of red blood cells. Anemia in Crohn's may be the result of chronic blood loss; bone marrow depression; or failure to absorb iron and folic acid, which are important in stimulating the production of red blood cells. Certain medications, such as sulfasalazine, may also exacerbate anemia. To combat most cases of anemia, gastroenterologists often prescribe supplements, and recommend a diet rich in iron

13 Malnutrition Malnutrition occurs when the body does not receive enough nutrients to grow and develop properly. Loss of protein, tissue breakdown due to steroid use, poor diet and, in some cases, failure to absorb nutrients result in weight loss and nutritional deficiencies. Gastroenterologists often prescribe nutritional supplements to avoid the complications that result from deficiencies in vitamins A, D, E, and K. WHAT ARE THE CURRENT TREATMENT OPTIONS? Currently, there is no cure for Crohn s. In the meantime, the goals of treating Crohn s are to suppress inflammation, enable healing of the intestinal lining, and relieve the symptoms of fever, diarrhea, and abdominal pain. Currently available treatments for Crohn s include: Anti-inflammatory medication Most people who have Crohn s receive one or more different types of drugs designed to control inflammation. These may include sulfasalazine, other medications containing mesalamine (known as 5-ASA agents), and corticosteroids. Immunosuppressive medication These drugs block the body s immune response, which leads to inflammation. Immunosuppressive medications used to treat Crohn s include azathioprine, 6-mercaptopurine, methotrexate, and cyclosporine. Biologics Infliximab is the first agent approved for moderate to severe Crohn's disease in adults and children who haven't responded well to other therapies. This is useful for both inducing remission as well as maintenance of remission. Antibiotics Antibiotics, such as metronidazole and ciprofloxacin, may help heal abscesses and fistulas. Other antibiotics may be prescribed to treat bacterial growth in the intestine caused by obstruction or abscesses. Antidiarrheal medication Antidiarrheal medication offers some relief for the diarrhea that many people with Crohn s experience. Loperamide, codeine, and even fiber powders can help alleviate symptoms. Nutritional supplements: Nutritional supplements are helpful for people who lose calories and nutrients from diarrhea or decreased appetite. Supplements can help fuel the body and replenish iron, calcium, other minerals, and vitamins. Surgery: If other treatments do not effectively control symptoms, your doctor may recommend surgery to close fistulas or remove the part of the intestine where the inflammation is most severe. Unfortunately, this procedure usually leads to only temporary remission of symptoms. The inflammation often returns near the area where the tissue was removed. Some people may experience long periods of remission when they are free of symptoms. However, symptoms usually recur at various times over a person's lifetime. It is not possible to predict when a remission may occur or when symptoms will return. Because of the unpredictability of Crohn's, you may need medical care for some time

14 The sooner you understand your condition, the better. FREQUENTLY ASKED QUESTIONS How does IBD affect daily life? IBD affects every patient differently, depending on the severity of each individual case. IBD is often cyclical in nature. You may experience periods of remission from your symptoms between flare-up periods. Although IBD is a serious, chronic disease, many patients respond well to treatment and live productive, active lives. What if my symptoms seem to be in remission? Some people may experience long periods of remission when they are free of symptoms. These periods can last for years. However, the symptoms usually recur at various times over a person's lifetime. It is not possible to predict when a remission may occur, or when symptoms will return. Because of the unpredictability of UC, your doctor may recommend ongoing medical treatment and regular office visits to monitor your condition. The treatment plan that's right for you may include drugs, nutritional supplements, surgery, or a combination of these options. What if I choose to postpone treatment? Not dealing with IBD properly can lead to more serious problems, including bowel obstructions or strictures (narrowing of the intestine). And if problems remain untreated, invasive surgery may be your only option. To avoid these potential problems, it's best to seek out a proper diagnosis as early as possible. Why me? While the true cause of IBD is unknown, it is believed that a number of factors play a role. For instance, genetics and heredity play a role - individuals whose family members have UC are more likely to develop it themselves. Environmental factors may play a role, but specific factors have not been identified. It's important to remember that you did not do anything to cause your illness, and that you are not alone. What is the role of diet in IBD? Major dietary considerations are not required. Milk products are to be avoided in those with symptoms of lactose intolerance. During active disease, low roughage diet is generally advised. When disease is in remission, a normal diet is advised but very spicy, greasy foods should be avoided. In addition, any particular food known to precipitate symptoms should be brought to the knowledge of the treating doctor. How does stress relate to IBD? Stress does not cause IBD. However, some people who already have UC report that stressful events precede a flare-up. Although living with IBD is not easy, it is important to try to control your stress whenever possible and maintain a positive outlook. There are many ways to manage stress - while some people seek support or meditate, others like vigorous activity. Still others like to talk about their feelings. Find the way that works best for you. Does IBD affect a woman's ability to conceive? Generally speaking, a woman with IBD whose disease is inactive has the same ability to conceive as women who are unaffected. She can experience a normal, full-term delivery. Flare-ups during pregnancy can usually be effectively treated with medical therapy. On the other hand, women with active disease may be more likely to have a miscarriage or premature delivery. Can it lead to cancer? Yes, IBD patients can develop cancer though the risk is very low in patients with well controlled disease. However, after years of disease regular follow-ups is recommended. What about alternative therapies? I am told indigenous medicines can cure the disease? As yet there is no scientific evidence that any of the available alternative therapies are effective for IBD 24 Inside back 25