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Home , Colitis, Ulcerative colitis

Living with Ulcerative

a What’s Inside Understanding the

Understanding the diagnosis...... 1 diagnosis

What is ?...... 2 Your doctor has just told you that you have ulcerative colitis (UC). Now what? To start, How is ulcerative colitis different from you probably have lots of questions. Some Crohn’s disease?...... 2 of the most commonly asked ones are: Will it ever go away?...... 2 A brief introduction to the gastrointestinal • What is ulcerative colitis? (GI) tract...... 3 • How did I get it? Who gets ulcerative colitis?...... 4 • Will I be able to work, travel, or exercise? The genetic connection...... 5 • Should I be on a special diet? What causes ulcerative colitis?...... 5 • What are my treatment options? No one knows the exact cause(s) • Will I need surgery? of the disease ...... 5 What are the ?...... 6 • How will ulcerative colitis change my life, both now and in the future? Beyond the intestine...... 7 The range of symptoms...... 7 • Can ulcerative colitis be cured, and what is Types of ulcerative colitis and their the outlook (prognosis)? associated symptoms...... 8 The purpose of this brochure is to answer Making the diagnosis...... 8 those questions and to walk you through some Some questions to ask your doctor...... 9 key points about ulcerative colitis and what you may experience in the future. You won’t Treatment...... 11 become an expert overnight, but you’ll learn ...... 11 more and more as time goes by. The more Managing your symptoms...... 14 informed you are, the better you can manage your disease and become an active member of Other considerations...... 15 your own healthcare team. Surgery...... 15 Possible complications...... 16 Please note: All glossary terms are highlighted Diet and nutrition...... 17 in bold font. Complementary and alternative therapies...... 19 General health maintenance...... 19 The Crohn’s & Colitis Foundation provides information for Stress, emotional factors, educational purposes only, which is current as of the print and support...... 20 date. We encourage you to review this educational mate- Support...... 21 rial with your health care professional, as this information should not replace the recommendations and advice of Hope for the future...... 22 your doctor. The Foundation does not provide medical or other health care opinions or services. The inclusion of Knowledge and support are power!...... 23 another organization’s resources or referral to another organization does not represent an endorsement of a Glossary of terms...... 27 particular individual, group, company, or product.

1 Chronic illnesses are ongoing and long-term. What is ulcerative colitis? They can often be controlled with treatment. Ulcerative colitis (UC) belongs to a group In the case of ulcerative colitis, medications are of conditions known as inflammatory bowel available that can control disease symptoms. diseases (IBD). UC is a chronic inflammatory While the medications do not actually cure the condition of the (colon and rec- disease, many people can go for long periods tum) that can occur at any age. The symptoms of time without symptoms (called remission). can include , bowel urgency, Use of medications also can lower the chances , and in the stool. The inflamma- of developing complications later on. Even tion begins in the and extends up the during times of remission, it is important to colon in a continuous manner. continue taking medications and seeing your How is ulcerative colitis different doctor regularly. from Crohn’s disease? Studies show that people with UC usually have When reading about IBD, you need to know the same life expectancy as people without that ulcerative colitis is not the same thing UC. It is important to remember that most as Crohn’s disease, another type of IBD. The people who have ulcerative colitis lead full, illnesses have similar symptoms, but the areas happy, and productive lives. affected in your body are different. Crohn’s dis- ease may affect any part of thegastrointesti - nal (GI) tract, but ulcerative colitis is limited to the colon and rectum. Crohn’s disease can also A brief introduction to the affect the entire thickness of thebowel wall, gastrointestinal (GI) tract while ulcerative colitis only involves the inner- most lining of the colon (mucosa/submucosa). Most of us aren’t very familiar with the GI tract, Finally, in Crohn’s disease, the of but it’s time you get acquainted. the intestine can “skip”—leaving normal areas in between patches of diseased intestine. In Here’s a quick overview: The GI tract (see fig- ulcerative colitis, this does not occur. In only 10 ure 1) starts at the mouth. It follows a twisting percent of cases are there overlapping features and turning course and ends, many feet later, of both ulcerative colitis and Crohn’s disease, a at the rectum. In between are a number of condition called indeterminate colitis. organs that all play a part in processing and transporting food through the body. Will it ever go away? No one knows exactly what causes - First is the oral cavity (mouth), followed by the ative colitis. Also, no one can predict how the , a narrow tube that connects the disease—once it is diagnosed—will affect a mouth to the stomach. Food passes through the particular person. Some people go for years stomach and enters the . This without having any symptoms, while others is the section where most of our nutrients are have more frequent flare-ups. However, one absorbed. The small intestine leads to the colon, thing is certain: ulcerative colitis is a chronic, or large intestine, which connects to the rectum. incurable condition.

2 3 THE GASTRO-INTESTINAL • Both ulcerative colitis and Crohn’s disease are (GI) TRACT more commonly found in developed coun­ tries, urban areas, and northern climates. 1 1 Oral Cavity (mouth) However, some of these disease patterns are 2 Esophagus (throat) gradually shifting. For example, the number 2 3 Liver of cases of UC is increasing in developing 4 Stomach parts of the world, including China, India, and South America.6 3 5 Large Intestine/Colon 4 6 Small Intestine The genetic connection 5 7 Rectum Researchers have discovered that ulcerative 6 8 Anus colitis tends to run in families. In fact, the risk for developing IBD is between 1.5 percent and 7 28 percent for first-degree relatives of an 8 7 Figure 1 affected person. While genetic background plays a clear role, environmental factors, such as diet, , lifestyle, pollutants, and oth- The principal function of the colon is to absorb ers, may impact onset, progression, and relapse excess water and salts from the waste material of the disease. As such, while family history has (what’s left after food has been digested). It a strong association with increased risk of IBD, also stores solid waste, converting it to stool, it is currently not possible to confidently pre- and excretes it through the anus. dict which, if any, family members will develop ulcerative colitis.8,9

Who gets ulcerative Family members of people diagnosed with ulcerative colitis do not need to automatically colitis? be tested. If they develop symptoms, they should be evaluated by a gastroenterologist. Here are some quick facts and figures: Several conditions have symptoms that are • Over the last 50 years, the number of people similar to IBD, so it is important to get an diagnosed with UC has been increasing.1,2 accurate diagnosis. • According to CDC, the incidence of UC (the number of new cases per year) ranges from 2.2 to 14.3 cases per 100,000 people.3,4 What causes ulcerative • On average, people are diagnosed with colitis? ulcerative colitis in their mid-30s, although the disease can occur at any age.5 No one knows the exact cause(s) of the disease • Men are more likely than women to be Nothing that you did made you get ulcerative diagnosed with ulcerative colitis in their 50s colitis. You didn’t catch it from anyone. It and 60s.5 wasn’t something that you ate or drank that • Ulcerative colitis is more common among brought the symptoms on. So, above all, don’t Caucasians, but it can affect people of any blame yourself! racial or ethnic group.6

4 5 What are some of the likely causes? Most ex- Most people with ulcerative colitis experience perts think there is a multifactorial explanation. urgent bowel movements as well as crampy This means that it takes a number of factors abdominal pain. The pain may be stronger on working in combination to bring about ulcer- the left side, but it can occur anywhere in the ative colitis. abdomen.

More than 200 genes have now been associat­ Together, these may result in loss of appetite ed with IBD, though their exact role is still under and subsequent . These symptoms, investigation. It’s likely that a person inherits along with , can lead to . Children one or more genes that make him or her more with ulcerative colitis may fail to develop or susceptible to ulcerative colitis. These genes grow properly. then lead to an abnormal immune response to some environmental triggers. Scientists have Beyond the intestine not yet unequivocally identified specific trig­ In addition to having symptoms in the GI tract, gers, but the bacteria in the intestine, part of some people also may experience a variety of our microbiome, are a leading candidate. Other symptoms in other parts of the body associat- environmental factors likely play a role as well. ed with ulcerative colitis known as extraintes- In a genetical­ly susceptible individual, whatever tinal manifestations. Signs and symptoms of the trigger is, it prompts the person’s immune the disease may be evident in the: system to “turn on” and launch an attack in the GI system. That is when the inflammation • eyes (redness, pain, and/or changes in vision) begins. Unfor­tunately, the immune system • mouth (sores) doesn’t “turn off,” so the inflammation contin- ues, damaging the digestive organs and causing • joints (swelling and pain) the symptoms of ulcerative colitis. • skin (tender bumps, painful ulcerations, and other sores/rashes) • liver (primary sclerosing cholangitis and What are the signs and )—a rare development symptoms? In some people, extraintestinal manifestations As the intestinal lining becomes more inflamed actually may be the first signs of ulcerative and ulcerated (small and large sores), it loses colitis, appearing even years before the bow- its ability to absorb water from the waste el symptoms. In others, they may occur right material that passes through the colon. That, before a flare-up of the disease. in turn, leads to a progressive loosening of the stool—in other words, diarrhea. The damaged The range of symptoms intestinal lining may begin producing a lot of Approximately half of all patients with ulcerative mucus in the stool. Moreover, ulceration in the colitis have relatively mild symptoms. However, lining can also result in , causing the others may suffer from severe abdominal stool to become bloody in substance. Eventually, cramping, bloody diarrhea, , and . that blood loss may lead to a low The symptoms of ulcerative colitis tend to count, called anemia. come and go.

6 7 In between flares, people may experience no Since a number of other conditions can pro- distress at all. These periods of remission can duce the same symptoms as UC, your doctor span months or even years, although symp- relies on various medical tests to rule out toms typically do return eventually. The unpre- other potential causes for your symptoms, dictable course of ulcerative colitis may make such as . it difficult for doctors to evaluate whether a particular treatment program has been effec- Tests may include: tive or whether remission occurred on its own. • Stool tests: Used to exclude infection or Types of ulcerative colitis and their to detect inflammation (fecal ). associated symptoms • Blood tests: May detect the presence of The symptoms of ulcerative colitis will vary de- inflammation, abnormal antibodies, anemia, pending on the extent of inflammation and the or nutritional/vitamin deficiencies. location of the disease within the large intes- • : Examines the rectum and tine. Accordingly, it is very important for you to lower third of the colon. know which part of your intestine is affected. Listed below are some of the most common • : Examines the entire colon types of ulcerative colitis: and end of the small intestine.

• Ulcerative : Bowel inflammation is For further information about diagnosing limited to the rectum (usually less than six ulcerative colitis, please read our Diagnosing inches of the rectum) and is not associated and Monitoring IBD brochure available at with an increased risk of . Symptoms in- www.crohnscolitisfoundation.org/brochures. clude rectal bleeding, urgency, and rectal pain. • Left-sided colitis: Continuous inflammation that begins at the rectum and extends as far Some questions to ask as the splenic flexure (a bend in the colon near the spleen in the upper left abdomen). your doctor Proctosigmoiditis is a form of left-sided coli- tis as well. Symptoms include loss of appetite, It is important to establish good communica- weight loss, bloody diarrhea, and pain on the tions with your doctor. Patients will need to left side of the abdomen. establish a collaborative relationship with all their healthcare providers, especially their • Extensive Colitis: Affects the entire colon— gastroenterologist, to achieve the best long- continuous inflammation that begins at the term results. rectum and extends beyond the splenic flex- ure. Symptoms include loss of appetite, bloody It is common to forget to ask some critical diarrhea, abdominal pain, and weight loss. questions. Here is a list of questions that may be helpful for your next office visit: Making the diagnosis • Could any condition other than my UC be causing my symptoms? The path toward diagnosis begins by taking • What tests do I need to have to get to the a complete patient and family medical history, root of my symptoms? including full details regarding symptoms. A physical examination is also performed.

8 9 • Should I have these tests during the time of a flare-up or on a routine basis? Treatment • How will I know if my needs The two basic goals of treatment are to achieve to be adjusted? remission and, once that is accomplished, to maintain remission. If remission cannot be • Approximately how long should it take to see established, then the next goal is to decrease some results, or to find out that this may not the severity of disease in order to improve the be the right medication for me? patient’s quality of life. • What are the potential side effects of the medication? Treatments for ulcerative colitis work by decreasing the abnormal inflammation in the • What should I do if I notice them? lining of the colon. This permits the colon and • What should I do if my symptoms return? rectum to heal. It also relieves the symptoms of diarrhea, rectal bleeding, and abdominal pain. • What symptoms are considered an emergency? However, there is no one-size-fits-all treat- • If I cannot schedule a visit right away, are ment for everyone with ulcerative colitis. The there any over-the-counter medications that approach must be tailored to the individual can assist with my prescribed medication? If because each person’s disease is different. so, which ones? It is important to note that even if a patient is • Should I change my diet or take nutritional in remission, ulcerative colitis may flare up at supplements? If so, can you recommend a di- times from the reappearance of inflammation. etitian or any specific nutritional supplements? Flares may indicate that a change in medication • Do I need to make any other lifestyle changes? dose, frequency, or type is needed.

• When should I come back for a follow-up Medications appointment? Some medications for the treatment of ulcer- • What are my options if I can’t afford my ative colitis have been available for many years. medications? Others are recent breakthroughs. Medications are given in different dosages and formulations and for different lengths of time.

Some medications are taken as pills that are swallowed, while others are administered intra- venously (through a vein) or injected under the skin. Topical therapies (applied to body surfac- es) are given rectally, as suppositories, , creams, foams, and ointments. Taking your ulcerative colitis medication(s) as prescribed reduces the risk of a flare-up.

10 11 The most commonly prescribed medications fall into the following categories: • : These include medications that contain 5-aminosalicylic acid (5-ASA). These medications work by inhibiting certain pathways that produce substances that cause inflammation. They can work in the lining of the GI tract to decrease inflammation. Aminosalicylates work best in the colon and • Biologic therapies: These are protein-based are often given orally in the form of delayed- therapies made from living organisms, either release tablets, or rectally as enemas or human or animal. These medications are anti- suppositories. bodies that stop certain proteins in the body • : These medications affect from causing inflammation. They are currently the body’s ability to launch and maintain an offered in an injectable form, or through intra- inflammatory process. In addition, they work venous infusion (through veins). There are also to keep the immune system in check. Corti- biologic medications knowns as biosimilars. costeroids are effective for short-term con- Biosimilars are designed to be similar, near- trol of disease activity; however, they are not identical copies of another, already approved recommended for long-term or maintenance biologic therapy, known as an originator drug use because of their potential side effects. If or reference product. They have the same you cannot come off steroids without a re- safety and effectiveness and are taken in the lapse of symptoms, your doctor may need to same way as the originator drugs. add some other medications to help manage your disease. Because of their effect on the • inhibitors (JAK Inhibitors): adrenal glands, steroids cannot be stopped These medications, currently available as tab- abruptly. lets, are broken down in the after ingestion and are directly absorbed • Immunomodulators: This class of medica- into the bloodstream via the intestinal wall. tions controls or suppresses the body’s im- Due to the small size of these chemically mune response, therefore decreasing inflam- active substances, they can be transported to matory activity. Immunomodulators generally nearly any site in the body through the blood- are used in people for whom aminosalicylates stream, including the immune system. Unlike and corticosteroids haven’t been effective some of the other tablet-based agents, these or have only been partially effective. Some agents work more quickly and can induce immunomodulators are added to treatment and maintain remission. They are currently regimens to make other medications, such as approved to treat ulcerative colitis. biologics, work better by preventing the for- mation of antibodies to biologic medications. • Future Therapies: Recent advances have They may be useful in reducing or eliminating contributed to breakthroughs in the develop- the need for corticosteroids. They may also ment of newer medical options for the treat- be effective in maintaining remission in peo- ment of IBD. Further developments may lead ple who haven’t responded to other medica- to expanding how currently approved medi- tions and may take several weeks or months cations are used in other diseases, including to begin to working. ulcerative colitis.

12 13 There are many therapies currently under safest way to handle OTC medications is to investigation. For a current, up-to-date list of follow the guidelines and instructions of your all FDA-approved medications for ulcerative doctor and pharmacist. colitis, please visit the Foundation’s online Medication guide at www.ibdmedicationguide. For further information on managing symp- org. Additional information is available in our toms, please read our Managing Flares and Understanding IBD Medications and Side Effects Other IBD Symptoms brochure available at brochure at www.crohnscolitisfoundation.org/ www.crohnscolitisfoundation.org/brochures. brochures. Managing your symptoms Other considerations The best way to control ulcerative colitis is by taking medications as prescribed by your doc- Surgery tor or other healthcare professional. However, Many individuals with ulcerative colitis respond medications may not immediately get rid of well to medical treatment and may never need all the symptoms that you are experiencing. to undergo surgery. However, after 30 years of You may continue to have occasional diarrhea, disease, up to a third of people with ulcerative cramping, nausea, and fever. colitis may require surgery at some point.

Even when there are no symptoms or just min- Sometimes, surgery is indicated to take care imal ones, it may still seem like a nuisance to be of various complications. These include severe on a steady regimen of medication. Remember, bleeding from deep ulcerations, perforation though, that taking maintenance medication (rupture) of the bowel, and toxic . can significantly reduce the risk of flares in ulcerative colitis. In between flares, more people Surgery may also be considered to remove the feel quite well and are free of symptoms. entire colon and rectum (a proctocolectomy) when medical therapies no longer control the Talk to your doctor about which over-the- disease well or when precancerous changes counter (OTC) medications you can take. OTC are found in the colon. products that may help include (Imodium®) to control diarrhea, anti-gas prod- Because ulcerative colitis is a disease that af- ucts, and digestive aids. Most anti-gas products fects the immune system, extraintestinal symp- and digestive aids may also be safe to use, but toms that occurred prior to surgery—such as you should ask your doctor about these first. joint pain or skin conditions—may recur even To reduce fever or ease joint pain, speak with after the colon is removed. your doctor about taking acetaminophen (Ty- lenol®) rather than non-steroidal anti-inflam- Depending on a number of factors, including matory medications (NSAIDs), such as aspirin, the extent of disease and the person’s age and ibuprofen (Advil®, Motrin®), and naproxen overall health, one of two surgical approaches (Aleve®), since NSAIDs may irritate your diges- may be recommended. The first involves an tive system. Many OTC medications may have , an opening on the abdomen through some adverse effects on the ulcerative colitis which waste is emptied into a pouch attached itself or interact with some of the medications to the abdomen. The second is an internal prescribed to treat your ulcerative colitis. The pouch, called an ileal pouch-anal anastomosis

14 15 (IPAA), or j-pouch, which is created by attaching Diet and nutrition the small intestine to the rectal cuff, eliminating Once the disease has developed, paying the need for an external pouch. attention to your diet may help you reduce symptoms, replace lost nutrients, and promote For further information on surgery and healing. There is no one single diet or eating ulcerative colitis, please read our Surgery for plan that will work for everyone with ulcerative Crohn’s Disease and Ulcerative Colitis brochure colitis. Dietary recommendations must be tai- at . www.crohnscolitisfoundation.org/brochures lored just for you—ulcerative colitis varies from person to person and even changes within the Possible complications same person over time. Complications are by no means inevitable or even frequent—especially in appropriately There may be times when modifying your diet treated patients. But they are common enough, can be helpful, particularly during a flare. Some and cover such a wide range, that it is import- diets may be recommended at different times ant to be acquainted with them. by your physician, including:

Early recognition of complications often means • Low-salt diet—Used during more effective treatment. Complications can therapy to reduce water retention. include profuse intestinal bleeding (including • Low-fiber diet—Used to avoid stimulating clots of blood in the stool), and toxic mega- bowel movements in ulcerative colitis. colon (a rare development where the colon becomes dangerously dilated and surgical • Lactose-free diet—For those who have an removal is required). intolerance to dairy products. • High-calorie diet—For those who experience Infection is also a concern. There is a rise of weight loss or growth delay. Clostridium difficile (C.diff) infection, particular- ly in hospitalized patients. The symptoms of this • Other diets—There are many other diet bacterial infection, including diarrhea and colon plans that have been tried or suggested for inflammation, mimic those of IBD flares. Peo- management of IBD. These include glu- ple with ulcerative colitis are at greater risk for ten-free diet, low FODMAP diet, Specific ™ the infection than those with Crohn’s disease, Carbohydrate Diet , and the Mediterranean and all IBD patients treated with immunosup- diet. While an individual may benefit from pressive drugs or antibiotics are at increased risk. Early testing and rapid start of appropriate medical therapy can improve individual out- comes and avoid the risk of complications.

Occasionally, people with ulcerative colitis may develop , but this occurs in a very small number of people afflicted with IBD.

For further information on complications, please read our Managing Flares and Other IBD Symptoms brochure available at www.crohnscolitisfoundation.org/brochures.

16 17 such diets, there is no strong evidence to correct these deficiencies through vitamin and support recommending these for broad use nutritional supplements. at this time. That doesn’t mean that you must eat certain Although no specific foods worsen the under- foods or avoid others. Most doctors recommend lying inflammation of ulcerative colitis, certain a well-balanced diet to prevent nutritional defi- ones may tend to aggravate the symptoms. ciency. A healthy diet should contain a variety of Keeping a food diary can be a big help. foods from all food groups. Meat, fish, poultry, It allows you to see the connection between and dairy products (if tolerated) are sources what you eat and the symptoms that may of protein; bread, cereal, starches, fruits, and follow. If certain foods are causing digestive vegetables (if tolerated) are sources of carbo- problems, then try to avoid them. Here are hydrates; and margarine and oils are sources of some additional helpful tips: . A dietary supplement, like a multivitamin, can help fill the gaps. • Reduce the amount of greasy or fried foods in your diet, which may cause diarrhea and gas. For more information, you may want to talk • Eat smaller meals at more frequent intervals. with a dietitian and read our Diet, Nutrition and Inflammatory Bowel Disease brochure at • If you are lactose intolerant, limit the amount www.crohnscolitisfoundation.org/brochures. of dairy products in your diet. • Avoid carbonated beverages if excessive gas Complementary and alternative is a problem. therapies • Restrict caffeine when severe diarrhea Some people living with ulcerative colitis look occurs, as caffeine can act as a laxative. to complementary and alternative medicines (CAM) to use together with conventional • Bland, soft foods may be easier to tolerate therapies to help ease their symptoms. CAM than spicy foods. therapies may work in a variety of ways. They • Restricting your intake of certain high-fiber may help to control symptoms and ease pain, foods, such as nuts, seeds, and raw vegetables enhance feelings of well-being and quality of may decrease your symptoms. life, and possibly boost the immune system.

Maintaining proper nutrition is important in For more information about complementary the management of ulcerative colitis. Abdom- and alternative therapies, view our Comple- inal pain and fever can cause loss of appetite mentary and Alternative Medicine fact sheet at and weight loss. Diarrhea can rob the body of www.crohnscolitisfoundation.org/brochures. fluids, minerals, and . These are nu- trients in the body that must remain in proper General health maintenance balance for the body to function properly. It is important for ulcerative colitis patients to continue general health maintenance. While Some patients with IBD may become deficient working with your gastroenterologist, also in certain vitamins and minerals (including vi- remember to speak with your primary health tamin B-12, folic acid, vitamin C, , iron, provider about other important issues, in- calcium, zinc, and magnesium) or have trouble cluding vaccinations, oral health, vision, heart, ingesting enough food to meet their caloric breast and prostrate screening, and periodic needs. Your healthcare provider can identify and blood testing.

18 19 For detailed information about general health- Support care maintenance in ulcerative colitis, view our As time goes on, this fact will not always occupy General Healthcare Maintenance fact sheet at the top spot in your mind. In the meantime, www.crohnscolitisfoundation.org/brochures. don’t hide your condition from family, friends, and coworkers. Discuss it with them in order to Stress, emotional factors, help them understand what support you need. and support If you have ulcerative colitis, you’re bound to You’ll learn that there are numerous strategies have questions about the relationship between that can make living with ulcerative colitis easier. stress and emotional factors and this disease. Coping techniques for dealing with the disease Although flares are sometimes associated may take many forms. For example, attacks of with stressful events, there is no evidence that diarrhea or abdominal pain may make people stress causes ulcerative colitis. It is much more fearful of being in public places. But that likely that the emotional distress that people isn’t necessary. All it takes is some practical sometimes feel is a reaction to the symptoms advanced planning. of the disease itself. You may want to incorporate some of the As depression can be associated with chronic following steps into your plans: illness, a doctor may recommend medication and/or a referral to a mental health profes- • Find out where the restrooms are in restau- sional. Although formal psychotherapy usu- rants, shopping areas, theaters, and on public ally isn’t necessary, some people are helped transportation. Smart phone apps are avail- considerably by speaking with a therapist who able to help with locating restrooms. is knowledgeable about IBD or about chronic • Carry extra underclothing, toilet paper, illness in general. or moist wipes when traveling, as needed. • Before venturing further away or for longer periods of time, speak with your doctor. Travel plans should include a long-term supply of your medication, its generic or non-brand name in case you run out or lose it, and the names of doctors in the area you will be visiting.

Try to go about your daily life as normally as possible, pursuing activities as you did before your diagnosis. There’s no reason for you to sit out on things that you have always enjoyed or have dreamed of doing one day. • Learn coping strategies from others. Your local Crohn’s & Colitis Foundation chapter offers support groups.

20 21 • Join the Foundation’s free online community Foundation’s continuing research efforts, much at www.crohnscolitiscommunity.org to get more will be learned, and eventually cures will the support you need through discussion fo- be found. rums, personal stories, online support groups, and much more. With the ever-increasing number of clinical trials of potential new IBD therapies, there is • Develop a support network of family and an even greater need for patient participation friends to help you manage your disease. to see if these experimental therapies work. • Follow your doctor’s instructions about tak­ing To locate clinical trials for ulcerative colitis in medication (even when you are feeling well). your area, visit the Foundation’s Clinical Trials Community at www.crohnscolitisfoundation. • Bring a family member or friend to your org/clinical-trials-community or call 888-MY- doctor’s appointment for support. GUT-PAIN (888-694-8872). • Maintain a positive outlook. That’s the basic— and best—prescription! Knowledge and support There’s no doubt that living with this disease is challenging—you have to take medication are power! and, occasionally, make other adjustments. It’s important to remember that most people Find the answers you need to help control your with ulcerative colitis are able to lead rich and ulcerative colitis by joining the Crohn’s & Colitis productive lives. Foundation. • Local Education and Support Programs To find programs, support groups, and events Hope for the future in your area, visit www.crohnscolitisfounda- tion.org to find your local chapter. With many new treatments for IBD in clinical trials, experts predict that a wave of new ther- • Power of Two apies is on the way. It is becoming increasingly The Foundation’s Power of Two program clear that a person’s immune response to in- allows patients seeking guidance on a specific testinal bacteria plays an important role in IBD. issue to speak with another peer within the A great deal of research is currently directed at IBD community who can share their experience understanding the composition, behavior, and and provide support. To find out more, contact precise role of the microbiome in the symp- [email protected]. toms of IBD. Hopefully, this new knowledge will • Irwin M. and Suzanne R. Rosenthal uncover new treatments to control or prevent Resource Center (IBD Help Center) the disease. The IBD Help Center is a free service designed to provide you with disease-specific informa- Crohn’s & Colitis Foundation-sponsored tion, guidance, and support. Our information research has led to huge strides in the fields of specialists can be reached by calling 888-MY- immunology (the study of the body’s immune GUT-PAIN (888-694-8872) Monday through defense system), microbiology (the study of Friday, 9 a.m. to 5 p.m. EST, or by emailing microscopic organisms with the power to [email protected]. cause disease), and . Through the

22 23 • Crohn’s & Colitis Foundation • News, educational programs, and support- Online Community ive services from your local chapter. The Foundation hosts a free website where pa- • An “I can’t wait” card (provides help with tients can get the support they need in manag- public restroom access). ing their condition. They’ll participate in discus- sion boards, share or read personal stories, and • To contribute to research to find a cure for much more. The Crohn’s & Colitis Community these challenging diseases. is waiting for people just like you. Join today at The Crohn’s & Colitis Foundation sponsors www.crohnscolitiscommunity.org. specific major events to increase awareness • I’ll Be Determined and raise funds to find a cure for Crohn’s dis- I’ll Be Determined is here to help patients and ease and ulcerative colitis. Contact your local caregivers learn more about Crohn’s disease chapter or visit www.crohnscolitisfoundation. and ulcerative colitis and the choices available org to find an event nearest you. for managing them. The site offer tools and resources, the perspectives of IBD patients and experts, and a chance to connect with others. www.ibdetermined.org.

• spin4 crohn’s & colitis cures Use your #power2cure in an exciting new • Camp Oasis way to connect with the IBD community— The Crohn’s & Colitis Foundation’s Camp Oasis participate in a high-energy spin4 crohn’s & is a co-ed residential summer camp program. colitis cures event near you! With inspiration­ Its mission is to enrich the lives of children al instructors and fun playlists to keep you with IBD by providing a safe and supportive motivated, these indoor cycling relays are camp community. For more information, visit truly a #partyonabike. Teams of up to four www.crohnscolitisfoundation.org/camps people each ride for a 30-minute session, and or call the IBD Help Center. every teammate receives plenty of swag! The events generate awareness of Crohn’s disease

• Membership and ulcerative colitis and raise funds to sup- By joining the Crohn’s & Colitis Foundation, port groundbreaking IBD research and patient you’ll get: services. Learn more at www.spin4.org. • Under the Microscope, our newsletter with research updates.

24 25 Glossary of terms

Aminosalicylates: Medications that include compounds that contain 5-aminosalicylic acid (5-ASA). Examples are , mesalamine, , and .

Antibiotics: Drugs such as and ciprofloxacin that may be used when occur. • Take Steps is the Crohn’s & Colitis Founda- Anus: Opening at the end of the rectum that tions’s national walk program. Take Steps en- allows solid waste to be eliminated. ables patients and families to raise money for crucial research and to build awareness about Biologic therapies: Antibodies that bind with Crohn’s disease and ulcerative colitis. Visit specific proteins to block inflammation. www.cctakesteps.org for more information. Bowel: Another name for the intestine. The small bowel and the large bowel are the small intestine and large intestine, respectively.

CAM: Complementary and Alternative Medi- cine—a group of diverse medical and health- care systems, practices, and products that are not generally considered part of conventional medicine. • Team Challenge Team Challenge is the Foundation’s endur- Chronic: Long-lasting or long-term. ance training and fundraising program. With options including running, walking, triathlon, Colon: The large intestine. cycling, and hiking, there are unlimited ways to challenge yourself while raising vital funds Corticosteroids: These medications affect the to cure these diseases. Each of our training body’s ability to begin and maintain an inflam- programs is created by expert coaches to suit matory process. In addition, they work to keep all experience levels, and you’ll be joined by the immune system in check. a supportive community of teammates who share the common goal of ending Crohn’s and Crohn’s disease: A chronic inflammatory dis- colitis. For more information on our desti- ease that primarily involves the small and large nation events, or to participate in your own intestine, but can affect other parts of the event through our Race In Orange program, digestive system as well. Named for Dr. Burrill visit www.ccteamchallenge.org. Crohn, the American gastroenterologist who first described the disease in 1932.

26 27 Diarrhea: Passage of excessively frequent Large intestine: Also known as the colon and and/or excessively liquid stools. rectum. Its primary function is to absorb water and get rid of solid waste. Extraintestinal complications: Complications that occur outside of the intestine. NSAIDs: Nonsteroidal anti-inflammatory drugs such as aspirin, ibuprofen, ketoprofen, Flare or flare-up: Bouts or attacks of inflam- and naproxen. mation with associated symptoms. Oral: By mouth. Gastrointestinal: Referring collectively to the esophagus, stomach, and small and large Rectal: Having to do with the rectum. intestines. Rectum: Lowest portion of the colon. Genes: Microscopic building blocks of life that transfer specific characteristics from one Remission: Periods in which symptoms disap- generation to the next. pear or decrease and good health returns.

GI tract: Short for gastrointestinal tract. Small intestine: Connects to the stomach and large intestine; absorbs nutrients. Immune system: The body’s natural defense system that fights against disease. : A serious and rare complica- tion in which the colon widens, losing its ability Immunomodulators: These include to contract properly and move intestinal gas , 6- (6-MP), and along. This can lead to perforation (rupture) cyclosporine. This class of medications and the need for immediate surgery. basically overrides the body’s immune system so that it cannot cause ongoing inflammation. Ulceration: The process of ulcer formation. Inflamed: A response to tissue injury that is marked by redness, swelling, and pain. Ulcerative colitis: A disease that causes inflammation of the large intestine (the colon). Inflammatory bowel diseases (IBD): A term used to refer to a group of illnesses—including Crohn’s disease (inflammation in the gastroin- testinal tract) and ulcerative colitis (inflamma- tion in the colon).

Intestine: The long, tube-like organ in the ab- domen that completes the process of digestion. It consists of the small and large intestines.

28 29 References: Notes:

1. Nguyen GC, Chong CA, Chong RY. National estimates of the burden of inflammatory bowel disease among racial and ethnic groups in the . J Crohns Colitis. 2014;8(4):288-295. https://academic.oup.com/ecco-jcc/ article/8/4/288/386357. Published April 1, 2014.

2. Ghione S, Sarter H, Fumery M, et al; Epimad Group. Dramatic Increase in Incidence of Ulcerative Colitis and Crohn’s Disease (1998-2011): A Population-Based Study of French Adolescents. Am J Gastroenterol. 2018;113(2):265-272.

3. Loftus EV Jr. Clinical epidemiology of inflammatory bowel disease: Incidence, prevalence, and environmental influences. . 2004;126(6):1504-1517.

4. Loftus EV Jr, Shivashankar R, Tremaine WJ, Harmsen WS, Zinsmeiseter AR. Updated Incidence and Prevalence of Crohn’s Disease and Ulcerative Colitis in Olmsted County, Minnesota (1970-2011). ACG 2014 Annual Scientific Meeting; October 2014.

5. Shivashankar R, Tremaine WJ, Harmsen WS, Loftus EV Jr. Incidence and Prevalence of Crohn’s Disease and Ulcerative Colitis in Olmsted County, Minnesota From 1970 Through 2010. Clin Gastroenterol Hepatol. 2017;15(6):857-863.

6. Molodecky NA, Soon IS, Rabi DM et al. Increasing Incidence and Prevalence of the Inflammatory Bowel Diseases With Time, Based on Systematic Review. Gastroenterology. 2012;142(1):46-54.

7. Santos MPC, Gomes C, Torres J. Familial and ethnic risk in inflammatory bowel disease. Ann Gastroenterol. 2018;(1):14-23.

8. Shouval DS, Rufo PA. The Role of Environmental Factors in the Pathogenesis of Inflammatory Bowel Diseases. JAMA Pediatr. 2017;171(10):999-1005.

9. Ye BD, McGovern PB. Genetic variation in IBD: Progress, clues to pathogenesis and possible clinical utility. Expert Rev Clin Immunol. 2016;12(10):1091-1107.

30 31 Notes: About the Crohn’s & Colitis Foundation

Established in 1967, the Crohn’s & Colitis Foundation is a non-profit, volunteer-driven organization dedicated to finding the cures for Crohn’s disease and ulcerative colitis and improving the quality of life of children and adults affected by these diseases.

Since our founding, the Foundation has re- mained at the forefront of research in Crohn’s disease and ulcerative colitis. Today, we fund cutting-edge studies at major medical institu- tions, nurture investigators at the early stages of their careers, and finance underdeveloped areas of research.

In addition, the Crohn’s & Colitis Foundation provides a comprehensive series of education programs, printed and online resources, support services, and advocacy programs to members of the IBD community, including patients and caregivers.

We can help! Contact us at: 888-MY-GUT-PAIN (888-694-8872) [email protected] www.crohnscolitisfoundation.org

Credits: Reviewers: Richard Rood, MD Ryan W. Stidham, MD Sharmeel Wasan, MD Contributors: Lynne Christensen Design & Layout: Rubicon Design Associates

32 733 Third Avenue Suite 510 New York, NY 10017 800-932-2423 www.crohnscolitisfoundation.org

The Crohn’s & Colitis Foundation is a nonprofit organization that relies on the generosity of private contributions to advance its mission to cure Crohn’s disease and ulcerative colitis and to improve the quality of life of children and adults affected by these diseases.

12/2018