Living W-crohns Brochure Final

8/11/2019 Living W-crohns Brochure Final

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Living withCrohns Disease


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Understanding your diagnosis 1

What is Crohns disease (CD)? 2

Will it ever go away? 3

A brief introduction to the 4gastrointestinal (GI) tract

Who gets Crohns disease? 5

What causes Crohns disease? 7

What are the signs and symptoms? 8

Beyond the intestine 9

Types of Crohns disease 9

Patterns of disease 10

Making the diagnosis 11

Questions to ask your doctor 12

Treatment 14Managing your symptoms 19

Other considerations 20

Surgery 20

Diet and nutrition 21

Complementary and 24alternative therapies

Stress and emotion 25

General health maintenance 26Living your life 26

Hope for the future 29

Knowledge and support are power! 30

Glossary of terms 33

About CCFA Inside back cover

Whats Inside?


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Understanding yourdiagnosis

Your doctor has just told

you that you have Crohnsdisease. Now what?

Quite possibly, you have never even heardofthis disease before. In fact, most people areunfamiliar with Crohns disease, and now youare coping with your diagnosis.

You probably have lots of questions. Someof the most commonly asked questions are:

What is Crohns disease?

Is there a cure for Crohns disease, and whatis the outlook (prognosis)?

How did I get it?

Will I be able to work, travel, or exercise?

Should I be on a special diet?

What are my treatment options?

Will I need surgery?

How will Crohns disease change my life,

both now and in the future?

The purpose of this brochure is to provide helpfulanswers to these questions, and to walk youthrough the key points about Crohns disease

and what you may expect in the future. You wontbecome an expert overnight, but youll learnmore as time goes on. The more informed youare, the better you can manage your diseaseand become an active member of your ownhealthcare team.


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What is Crohnsdisease?

The disease is named after

Dr. Burrill B. Crohn, who pub-lished a landmark paper with

colleagues Oppenheimer and

Ginzburg in 1932 that de-scribed what is known today

as Crohns disease.

Crohns disease (CD) belongs to a group of con-ditions known as inflammatory bowel diseases(IBD). Crohns disease is a chronic inflammatorycondition of the gastrointestinal tract. Symptomsinclude diarrhea (sometimes bloody), as well ascrampy abdominal pain, nausea, fever, loss of

appetite, weight loss and fatigue, and, at times,rectal bleeding. When you have Crohns disease,you will not have the same symptoms all of thetime. In fact, sometimes you may have no symp-toms at all. When you have no symptoms, thisis called remission.

When reading about inflammatory bowel dis-eases, you need to know that Crohns disease isnot the same thing as ulcerative colitis, anothertype of IBD. The symptoms of these two illnesses

are quite similar, but the areas affected in yourbody are different. Crohns disease may affectany part of the gastrointestinal (GI) tract, fromthe mouth to the anus, but ulcerative colitis islimited to the colonalso called the large intes-tine. CD most commonly affects the end of thesmall bowel (the ileum) and the beginning ofthe colon. Crohns disease can also affect theentire thickness of the bowel wall, while ulcera-tive colitis only involves the innermost lining ofthe colon. Finally, in Crohns disease, the in-

flammation of the intestine can skipleaving

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normal areas in between patches of diseasedintestine. In ulcerative colitis this does not occur.

In only 10 percent of cases are there overlappingfeatures of both ulcerative colitis and Crohnsdisease, a condition called indeterminate colitis.

Will it ever go away?

No one knows exactly what causes Crohnsdisease. Also, no one can predict how the dis-easeonce it is diagnosedwill affect a partic-ular person. Some people go for years withouthaving any symptoms, while others have morefrequent flare-ups, or attacks. However, one

thing is certain: Crohns disease is a chroniccondition.

Chronic conditions are ongoing situations. Theycan be controlled with treatment, but not cured.

This means that the disease is a long-termcondition. In fact, many medical illnesses suchas diabetes, high blood pressure, and heartdisease are successfully treated but not cured.Occasionally, people may develop severe com-plications that can be serioussuch as colorectal

cancerbut this occurs in a very small numberof people afflicted with IBD. Studies show thatpeople with IBD usually have the same life ex-pectancy as people without IBD. It is importantto remember that most people who have Crohns

disease lead full, happy, and productive lives.


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A brief introductionto the gastrointesti-nal (GI) tract

Most of us arent very familiarwith the GI tract, even though

it occupies a lot of real

estate in our bodies.Heres a quick overview: The GI tract (see figure1) actually starts at the mouth. It follows atwisting and turning course and ends, many

yards later, at the rectum. In between are anumber of organs that all play a part in process-ing and transporting food through the body.

The first is the esophagus, a narrow tube thatconnects the mouth to the stomach. Food

ORAL CAVITY

TRACHEA ESOPHAGUS

LIVER

GALLBLADDER

DUODENUM

LARGE

INTESTINE

TERMINAL

ILEUM

CECUM

APPENDIX

SPLEEN

STOMACH

PANCREAS

TRANSVERSE

COLON

SMALL

INTESTINE

RECTUM

ANUS

Figure 1


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passes through the stomach and enters thesmall intestine. This is the section where most

of our nutrients are absorbed. The small intes-tine leads to the colon, or large intestine, whichconnects to the rectum.

The principal function of the colon is to absorbexcess water and salts from waste material

(whats left after food has been digested). Italso stores solid waste, converting it to stool,and excretes it through the anus.

When inflammation occurs, the primary functions

are affected, including the absorption of water.As a result, diarrhea can be a very commonsymptom during flares of Crohns disease.

Who gets Crohns disease?

Approximately 1.4 million Americans haveeither Crohns disease or ulcerative colitis.

That number is almost evenly split betweenthe two conditions. Here are some quick factsand figures:

About 30,000 new cases of Crohns diseaseand ulcerative colitis are diagnosed each year.

On average, people are more frequently

diagnosed with Crohns disease between theages of 15 and 25, although the disease canoccur at any age.

CD can occur in people who are 70 or olderand in young children as well. An estimated

10 percent of those affected are under theage of 18.

Males and females appear to be affectedequally.

While CD can affect those from any ethnicbackground, Caucasians develop it more thanother groups. It is especially prevalent amongthe Eastern European Jewish population.

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Both Crohns disease and ulcerative colitisare diseases found mainly in developed

countries, more commonly in urban areasrather than rural ones, and more often innorthern climates than southern ones. How-ever, some of these disease patterns aregradually shifting. For example, the numberof cases of IBD is increasing in developing

parts of the world, including China, India,and South America.

The genetic connectionResearchers have discovered that Crohns dis-

ease tends to run in families. In fact, the riskfor developing IBD is between 5.2 percent and22.5 percent for first-degree relatives of anaffected person. It is also dependent on whichfamily member has IBD, ethnicity, and the type

of IBDeither Crohns disease or ulcerativecolitis. Your genes clearly play a role, althoughno specific pattern of inheritance has yet beenidentified. That means that right now there isno way to predict which, if any, family memberswill develop Crohns disease.


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What causesCrohns disease?

No one knows the exact

cause(s) of the disease.One thing is certain: Nothing that you did madeyou get Crohns disease. You didnt catch it fromanyone. It wasnt something that you ate or

drank that brought the symptoms on. Leadinga stressful lifestyle didnt cause it. So, above all,dont blame yourself!

What are some of the likely causes? Most expertsthink there is a multifactorial explanation. This

means that it takes a number of factors workingin combination to bring about Crohns disease.The three leading factors suspected of contribut-ing to it are:

1) Environmental

2) Genetic

3) An inappropriate reaction by the bodysimmune system

Its likely that a person inherits one or moregenes that make him or her susceptible toCrohns disease. Then, something in the environ-ment triggers an abnormal immune response.

(Scientists have not yet identified this environ-mental trigger or triggers.) Whatever thetrigger is, it prompts the persons immune sys-tem to turn on and launch an attack in the GIsystem. Thats when the inflammation begins.Unfortunately, the immune system doesnt

turn off, so the inflammation continues, dam-aging the digestive organs and causing thesymptoms of Crohns disease.


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What are the signs and symptoms?As the intestinal lining becomes more inflamed

and ulcerated, it loses its ability to absorb waterfrom the waste material that passes throughthe colon.

That, in turn, leads to a progressive loosening

of the stoolin other words, diarrhea. Thedamaged intestinal lining may begin producingexcess mucus in the stool. Moreover, ulcerationin the lining can also cause bleeding, leading tobloody stool. Eventually, that blood loss maylead to a low red blood cell count, called anemia.

Most people with Crohns disease experienceurgent bowel movements as well as crampyabdominal pain. These symptoms vary fromperson to person and may change over time.

Together, these may result in loss of appetiteand subsequent weight loss. These symptoms,along with anemia, can also lead to fatigue.Children with Crohns disease may fail todevelop or grow properly.

Symptoms may range from mild to severe. Be-cause Crohns is a chronic disease, patients willgo through periods in which the diseaseflaresup (is active) and causes symptoms. In betweenflares, people may experience no distress at all.

These disease-free periods (known as remis-sion) can span months or even years, althoughsymptoms typically do return at some point.

Inflammation may also cause afistula to develop.A fistula is a tunnel that leads from one loop of

intestine to another, or that connects the intes-tine to the bladder, vagina, or skin. Fistulas occurmost commonly around the anal area. If thiscomplication arises, you may notice drainageof mucus, pus, or stool from this opening.

Other conditions that may occur in some patientsincludestrictures, narrowing of the intestines;fissures, tears in the lining of the anus; andabscesses. An abscess is a tender mass filledwith pus from an infection.


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Beyond the intestineIn addition to having symptoms in the GI tract,

some people also may experience a variety ofsymptoms in other parts of the body associatedwith Crohns disease. Signs and symptoms ofthe disease may be evident in:

eyes (redness, pain, and itchiness)

mouth (sores)

joints (swelling and pain)

skin (tender bumps, painful ulcerations,and other sores/rashes)

bones (osteoporosis)

kidney (stones)

liver (primary sclerosing cholangitis, hepatitis,and cirrhosis)a rare development

All of these are known as extraintestinal mani-

festations of Crohns disease because theyoccur outside of the digestive system. In somepeople, these actually may be the first signs ofCrohns disease, appearing even years beforethe bowel symptoms. In others, they may coin-cide with a flare-up of intestinal symptoms.

Types of Crohns diseaseThe symptoms and potential complications ofCrohns disease differ, depending on what partof the GI tract is affected. The following are fivetypes of Crohns disease:

Crohns (granulomatous) colitis: Affects thecolon only.

Gastroduodenal Crohns disease: Affects thestomach and duodenum (the first part of thesmall intestine).

Ileitis: Affects the ileum.


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Ileocolitis: The most common form ofCrohns affecting the colon and ileum

(the last section of small intestine).

Jejunoileitis: Produces patchy areas ofinflammation in thejejunum (upper halfof the small intestine).

Patterns of diseaseLuminal-fibrostenosing Crohns diseaseThis disease course in Crohns disease variesfrom person to person and from year to year.It generally follows a pattern offlares (when

symptoms occur and the condition worsens)and remissions. This pattern is the chronic,relapsing course of Crohns diseasealsoknown as luminal-fibrostenosing Crohnsdisease. Fibrostenosing Crohns disease is

characterized bystrictures, or narrowing ofthe intestine.

Luminal Crohns diseaseLuminal Crohns disease refers to Crohnsdisease causing inflammatory changes in the

lumen, or tube of the intestine. Approximately55 percent of patients with luminal Crohnsdisease are symptom-free or in remission inany given year. Another 15 percent have lowactivity of disease, while about 30 percent

experience high activity. A patient whoremains in remission for one year has an 80percent chance of staying in remission foran additional year, while those experiencingactive disease in the past year have a 70percent chance of recurrent symptomatic flare

during the next year.

Fistulizing Crohns diseaseAnother pattern of Crohns disease is knownas fistulizing Crohns disease. Fistulas areabnormal channels between two loops of in-testine, or between the intestine and anotherstructure (such as the vagina, bladder, orskin). The lifetime risk of people with Crohnsdisease developing a fistula ranges from 20percent to 40 percent. The prognosis or out-


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look for this type of Crohns disease dependson the location and complexity of the fistulas.

However, most tend to recur following medicalor surgical treatment.

For more information about the management ofsymptoms and complications related to Crohnsdisease, visit CCFAs Web site at www.ccfa.org.

Making the diagnosis

The path toward diagnosisbegins by taking a complete

patient and family medical

history, including full detailsregarding symptoms. A

physical examination is also

performed.

Since a number of other conditions can producethe same symptoms as Crohns disease, yourdoctor relies on various medical tests to ruleout other potential causes for your symptoms,

such as infection.

Tests may include:

Stool tests: Used to rule out infectionor to reveal blood.

Blood tests: May detect the presence ofinflammation, antibodies, or anemia.

Colonoscopy and upper endoscopy: Used

to look at the lining of your gastrointestinaltract with a scope or a tube with a cameraand a light at the end. Biopsies can be ob-tained through these scopes. There is alsoa special miniaturized camera that can beswallowed by the patient and specifically


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used to evaluate the nine feet of small bowelthat is not accessed easily by the endoscopes.

CT Scan (computerized tomography) or MRI(magnetic resonance imaging) proceduresmay be used to look at either the thicknessof the bowel wall and/or evaluate for fistulasand collections of infected fluid in the

abdomen known as abscesses.

Computed tomographic (CT) colography (vir-tual colonoscopy) is a relatively new techniquefor imaging polyps. The use of this technique

in Crohns disease is not supported by re-search and is controversial as of this writing.

For further information about diagnosing Crohnsdisease, please see our fact sheet, DiagnosingIBD, available at www.ccfa.org.

Questions to ask

your doctorIt is important to establish

good communications with

your doctor.

Patients will need to establish a teamwork rela-tionship with all their healthcare providers,especially their gastroenterologist, for the best

long-term results.

It is common to forget to ask some critical ques-tions during your office visit. Here is a list ofquestions that may be helpful for your next visit:

Could any condition other than my diseasebe causing my symptoms?

What tests do I need to have to get to theroot of my symptoms?


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Should I have these tests during the timeof a flare-up or on a routine basis?

What parts of my GI tract are affected?

How will I know if my medication needsto be adjusted?

What happens if I miss taking a dose or ifI stop taking my medication?

Approximately how long should it take to seesome results, or to find out that this may not

be the right medication for me?

What are the side effects of the medication?What should I do if I notice them?

What should I do if the symptoms return?

What symptoms are considered an emergency?

If I cannot schedule a visit right away, arethere any over-the-counter medicationoptions that can assist with my prescribed

medication? If so, which ones?

Should I change my diet or take nutritionalsupplements? If so, can you recommend a di-etitian or any specific nutritional supplements?


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Do I need to make any other lifestyle changes?

When should I come back for a follow-upappointment?

What are my options if I cant afford mymedications?

Treatment

There are very effective treat-

ments available that may con-

trol your Crohns disease and

even place it into remission.

These treatments work by decreasing theabnormal inflammation in the GI system. Thispermits the system to heal. It also relievesthe symptoms of diarrhea, rectal bleeding,and abdominal pain.

The two basic goals of treatment are to achieveremission and, once that is accomplished, tomaintain remission. If remission cannot beestablished, then the next goal is to decrease

the severity of disease in order to improve thepatients quality of life. Some of the samemedications may be used to accomplish this,but they are given in different dosages and fordifferent lengths of time.

There is no one size fits all treatment foreveryone with CD. The approach must be tailoredto the individual, because each persons diseaseis different.

Medical treatment can bring about remission,which can last for months to years. But the dis-ease will flare up at times from the reappearanceof inflammation or from a particular trigger. Adisease flare may also be triggered from a com-plication such as a fissure, fistula, stricture, or


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abscess. Flares of Crohns disease may indicatethat a change in medication dose, frequency,

or type is needed.

Physicians have been using some medicationsfor the treatment of Crohns disease for manyyears. Others are recent breakthroughs. Themost commonly prescribed fall into five basic

categories:

Aminosalicylates: These include medicationsthat contain 5-aminosalicylate acid (5-ASA).Examples are sulfasalazine, mesalamine,

olsalazine, and balsalazide.These drugs arenot specially approved by the Food and DrugAdministration (FDA) for use in Crohns. How-ever, they can work at the level of the liningof the GI tract to decrease inflammation.They are thought to be effective in treating

mild-to-moderate episodes of Crohns dis-ease and useful as a maintenance treatmentin preventing relapses of the disease. Theywork best in the colon and are not particu-larly effective if the disease is limited to the

small intestine.

Corticosteroids: These medications affectthe bodys ability to launch and maintain aninflammatory process. In addition, they workto keep the immune system in check.


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Corticosteroids are used for people withmoderate-to-severe Crohns disease. They

are effective for short-term control of flareups;however, they are not recommended forlong-term or maintenance use because oftheir side effects. If you cannot come offsteroids without suffering a relapse of yoursymptoms, your doctor may need to add

some other medications to help manage yourdisease. With steroids it is very importantnot to stop abruptly.

Immunomodulators: This class of medications

modulates or suppresses the bodys immunesystem response so it cannot cause ongoinginflammation. Immunomodulators generallyare used in people for whom aminosalicylatesand corticosteroids havent been effective orhave been only partially effective. They may

be useful in reducing or eliminating the needfor corticosteroids. They also may be effec-tive in maintaining remission in people whohavent responded to other medicationsgiven for this purpose. Immunomodulators

may take several months to begin working.

Biologic therapies: Also known as anti-TNFagents, these represent the latest class oftherapy used for people suffering from mod-erate-to-severe Crohns disease. Tumor

necrosis factor (TNF) is a chemical producedby our bodies to cause inflammation. Anti-bodies are proteins produced to attach tothese chemicals and allow the body to destroythe chemical and reduce the inflammation.

Antibiotics: Antibiotics may be used wheninfectionssuch as abscessesoccur inCrohns disease. They can also be helpfulwith fistulas around the anal canal and vagina.

For further detailed information about treat-ment options, view our Understanding IBDMedications and Side Effects brochure atwww.ccfa.org.


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Managing yoursymptoms

The best way to control

Crohns disease is by takingmedications as prescribed

by your doctor or other

healthcare professional.However, medications may not immediately getrid of all the symptoms that you are experiencing.You may continue to have occasional diarrhea,cramping, nausea, and fever.

Even when there are no side effects, or justminimal ones, it may still seem like a nuisanceto be on a steady regimen of medication. Seeksupport from your healthcare provider. Remem-

ber, though, that taking maintenance medicationcan significantly reduce the risk of flares inCrohns disease. In between flares, most peoplefeel quite well and free of symptoms.


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Class of Drugs Generic Name (Trade Name) Indi

Aminosalicylates(5-ASA)

sulfasalazine (Azulfadine)

mesalamine (Apriso, Asacol,Asacol HD Lialda, Pentasa,Rowasa)

olsalazine (Dipentum)

balsalazide (Colazal)

Alth

tionmodusef

Corticosteroids

budesonide (EntocortEC)

prednisone (Deltasone)

prednisolone (Pediapred OralLiquid, Medrol)

For

Budsterdisecont

Immunomodulators

azathioprine (Imuran,

Azasan

) 6-Mercaptopurine (6-MP)

(Purinethol)

cyclosporine (Neoral,Gengraf, Sandimmune)

methotrexate

Indispoandpento th

Biologic therapies

infliximab (Remicade)

adalimumab (Humira)

certolizumab pegol (Cimzia)

natalizumab (Tysabri)

Fordiseand

Antibiotics

metronidazole (Flagyl)

ciprofloxacin (Cipro,Proquin)

For iabsc

Medications for Crohns Disease

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ations (Use) Route of Delivery

ugh not FDA-approved, these medica-

are thought to be effective for mild-to-rate episodes of Crohns disease andl in preventing relapses of disease.

Oral or rectal

ild-to-moderate Crohns disease.

sonide is a newer type of non-systemicid also for mild-to-moderate Crohnsse. Also effective for short-termol of flares.

Oral, rectal, or intra-venous (by vein)

ated for use in people who have not re-ded adequately to aminosalicylatesorticosteroids. Useful for reducing de-ency on corticosteroids. May take upree months to work.

Oral

Methotrexate is rarelyused subcutaneously(injection given justunder the skin).

eople with moderate-to-severe Crohnsse. Effective for maintaining remissionor tapering people off steroids.

Intravenous infusionor subcutaneousinjection

fections of Crohns disease, such asesses.

Oral or injection

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Talk to your doctor about which over-the-counter(OTC) medications you can take to help relieve

those symptoms. These may include Lomotil

or loperamide (Imodium) taken as needed tocontrol diarrhea. Most anti-gas products anddigestive aids may also be safe to use, but youshould ask your doctor about these first. To re-duce fever or ease joint pain, speak with your

healthcare provider about taking acetamino-phen (Tylenol) rather than non-steroidal anti-inflammatory drugs (NSAIDs) such as aspirin,ibuprofen (Advil, Motrin), and naproxen(Aleve). NSAIDs may irritate your digestive sys-

tem. Many over-the-counter medications canhave adverse effects on the Crohns diseaseitself or interact with some of the medicationsprescribed to treat your Crohns disease. Thesafest way to handle over-the-counter medica-tions is to follow the guidelines and instructions

of your doctor and pharmacist.

For further information about managing thesymptoms of Crohns disease, please read ourbrochure, Managing Flares and Other IBD

Symptoms.

Other considerationsSurgeryMany individuals with Crohns disease respondwell to medical treatment and never need toundergo surgery. However, between 66 and 75percent of people will require surgery at some

point during their lives.

Surgery may become necessary when medicaltherapies no longer control the disease well. Italso may be performed to repair a fistula or fis-sure. Another reason for surgery is the presenceof an intestinal obstruction from astricture(narrowed segment of bowel), or another com-plication such as an abdominal abscess. Inmost cases, the diseased segment of boweland any associated abscess are removed. This


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is called a resection. Usually, the two ends ofhealthy bowel are then joined together in a pro-

cedure called an anastomosis. While resectionand anastomosis may allow many symptom-free years, this surgery is not considereda cure for Crohns disease because the diseasefrequently recurs at or near the site of repair.

Astoma also may be required when surgery isperformed for Crohns disease. After surgeonsremove the segment of bowel, they re-route thesmall bowel to the skin so that waste productsmay be emptied into an external pouch at-

tached to the abdomen. This procedure may beneeded if the rectum is diseased and requiresremoval. Without a rectum present, an anasta-mosis cannot be performed. In this situation,the stoma is permanent. A stoma may also beformed if the amount of infection or inflamma-

tion is severe and immediate anastamosis isnot safe. Under these circumstances, the stomais usually temporary and may be closed in sev-eral months once the severe inflammation orinfection is controlled.

The overall goal of surgery in Crohns diseaseis to conserve bowel and return the individualto the best possible quality of life. However,unlike surgery for ulcerative colitis, surgery forCrohns disease does not offer a cure.

For more information on surgery in Crohnsdisease, see CCFAs website at www.ccfa.org.

Diet and Nutrition

You may wonder if eating any particular foodscaused or contributed to your CD. The answeris no. However, once the disease has devel-oped, paying attention to your diet may helpyou reduce symptoms, replace lost nutrients,and promote healing.

There is no single diet or eating plan that willwork for everyone with Crohns disease. Dietaryrecommendations must be tailored specificallyfor youdepending on what part of your intestine


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is affected and what symptoms you have. Crohnsdisease varies from person to person and evenchanges within the same person over time.What worked for your friend may not work foryou, and even what worked for you last year

may not work for you now.

There may be times when modifying your dietcan be helpful, particularly during a flare. Somediets may be recommended at different timesby your physician, including:

Low-salt diet Used during corticosteroidtherapy to reduce water retention.

Low-fiber diet Used to avoid blockages in

Crohns patients with strictures and to avoidstimulating bowel movements in CD.

Low-fat diet Typically recommended duringa flare in Crohns when fat absorption maybecome an issue.

Lactose-free diet For those who have anintolerance to dairy products.

High-calorie diet For those who experience

weight loss or growth delay.


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Some patients with IBD may become deficientin certain vitamins and minerals (including vita-

min B-12, folic acid, vitamin C, iron, calcium,zinc, and magnesium) or have trouble ingestingenough food to meet their caloric needs. Yourhealthcare provider can identify and correctthese deficiencies through vitamin and nutri-tional supplements.

Keeping a food diary can be a big help. It allowsyou to see the connection between what youeat and the symptoms that may follow. If certainfoods are causing digestive problems, then try

to avoid them. Although no specific foodsworsen the underlying inflammation of Crohnsdisease, certain ones may tend to aggravatethe symptoms. Here are some helpful tips:

Reduce the amount of greasy or fried foods in

your diet, which may cause diarrhea and gas.

Eat smaller meals at more frequent intervals.

If you are lactose intolerant, limit the amount

of dairy products in your diet. If you are notlactose intolerant, dairy products do not needto be limited.

Avoid carbonated beverages if excessive gasis a problem.

Restrict caffeine when severe diarrhea occurs,as caffeine can act as a laxative.

Bland, soft foods may be easier to tolerate

than spicy foods, although not always.

Restricting your intake of certain high-fiberfoods such as nuts, seeds, and raw vegetablesmay decrease your symptoms, especiallyif you have a narrowed segment of bowel.

Maintaining proper nutrition is important in themanagement of Crohns disease. Good nutritionis essential in any chronic disease, but especiallyfor Crohns. Abdominal pain and fever can causeloss of appetite and weight loss. Diarrhea and


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rectal bleeding can rob the body of fluids, min-erals, and electrolytes. These are nutrients in

the body that must remain in proper balance forthe body to function properly.

That doesnt mean that you must eat certainfoods or avoid others. Most doctors recommenda well-balanced diet to prevent nutritional defi-

ciency. A healthy diet should contain a varietyof foods from all food groups. Meat, fish, poul-try, and dairy products (if tolerated) are sourcesof protein; bread, cereal, starches, fruits, andvegetables are sources of carbohydrates; mar-

garine and oils are sources of fat. A dietary sup-plement, like a multivitamin, can help fill thegaps. For more information, you may want totalk with a dietitian and read our Diet andNutrition brochure, available at www.ccfa.org.

Complementary and alternativetherapiesSome people living with Crohns disease looktoward complementary and alternative medicines


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(CAM) to use together with conventional thera-pies to help ease their symptoms. CAM therapies

may work in a variety of ways. They may help tocontrol symptoms and ease pain, enhance feel-ings of well-being and quality of life, and possi-bly boost the immune system. Speak with yourdoctor about the best therapies for your situation.

For further information about complementaryand alternative therapies, view our Comple-mentary and Alternative Medicine fact sheetat www.ccfa.org.

Stress and emotional factorsCrohns disease affects virtually every aspectof a persons life. If you have Crohns disease,youre bound to have questions about the rela-tionship between stress and emotional factors

and this disease.

Although flares are sometimes associated withstressful events or periods, there is no proofthat stress causes Crohns disease. It is muchmore likely that the emotional distress people

sometimes feel is a reaction to the symptomsof the disease itself. Individuals should seekunderstanding and emotional support from theirfamilies and caregivers. As depression can beassociated with chronic illness, a doctor may

recommend medication and/or a referral to amental health professional. Although formalpsychotherapy usually isnt necessary, somepeople are helped considerably by speakingwith a therapist who is knowledgeable about IBDor about chronic illness in general. In addition,

CCFA offers local support groups to assist pa-tients and their families in coping with Crohnsdisease and ulcerative colitis.

Please review the list of other resources CCFAoffers in the Knowledge and Support arePower section at the end of this brochure.


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General health maintenanceIt is important to continue general health main-

tenance. While working with your gastroen-terologist, also remember to speak with yourprimary care provider about other importantissues including vaccinations, oral health,vision, heart, breast and prostate screening,

and periodic blood testing.

For detailed information about general health-care maintenance in Crohns disease and ahelpful chart for your records, view our Gen-eral Healthcare Maintenance fact sheet at

www.ccfa.org.

Living your lifeLearning you have Crohns disease may be diffi-cult and stressful. As time goes on, this will not

always occupy the top spot in your mind. In themeantime, try not to hide your condition frompeople in your life. Discuss it with them and helpthem understand what kind of support you need.

Youll learn that there are numerous strategiesthat can make living with Crohns disease easier.

Coping techniques for dealing with the diseasemay take many forms. For example, attacks ofdiarrhea or abdominal pain may make people

fearful of being in public places. But thatisnt necessary. All it takes is some practicaladvanced planning.

You may want to incorporate some of the follow-ing steps into your plans:

Find out where the restrooms are in restau-rants, shopping areas, theaters, and onpublic transportation.

Carry extra underclothing, toilet paper,or moist wipes when traveling as needed.

When venturing farther away or for longerperiods of time, speak with your doctor first.Travel plans should include a long-term supply


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Kids and teens with IBD have their very ownWeb site where they can find specialized

information on camps, coping in school,and other helpful tips. Check it out athttp://www.ucandcrohns.org.

Develop a support network of family andfriends to help you manage your disease.

Follow your doctors instructions about tak-ing medication (even when you are feelingperfectly well).

Bring a family member or friend to yourdoctors appointment for support.

Maintain a positive outlook. Thats thebasicand bestprescription!

While Crohns is a serious chronic disease, it isnot a fatal illness. Theres no doubt that livingwith this illness is challengingyou have totake medication and, occasionally, make otheradjustments. Its important to remember that

most people with Crohns disease are able tolead rich and productive lives.

Remember, too, that taking maintenance med-ication can significantly decrease flare-upsof Crohns disease. In between disease flares,

most people are free of symptoms and feel well.


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Hope for the future

Investigators all over the world

are devoted to research for

patients with Crohns disease.Thats good news when it comes to the devel-opment of new treatments for this disease. It isa very exciting time in the development of newtherapies. With many experimental treatments

for IBD in clinical trials, experts predict thata wave of new therapies for Crohns disease ison the way.

With an ever-increasing number of clinical trials

of potential new IBD therapies, there is an evengreater need for patient participation to see ifthese experimental therapies work. To locateclinical trials for Crohns disease therapies inyour area, go to the CCFA web site atwww.ccfa.org/trials/ or call 888.MY.GUT.PAIN

(888-694-8872).

Genetic studies also are expected to yield im-portant insights that will drive the search for newtherapies. The hope is that new therapies maybe capable of reversing the damage caused byintestinal inflammation, and even prevent thedisease process from starting in the first place.

It is becoming increasingly clear that a personsimmune response to normal intestinal bacteria

plays an important role in CD and UC. A greatdeal of research is currently directed at under-standing the composition, behavior, and preciserole of intestinal bacteria in the symptoms of IBD.Hopefully this new knowledge will uncover newtreatments to control or prevent the disease.

CCFA-sponsored research has led to huge stridesin the fields of immunology, the study of thebodys immune defense system; microbiology,the study of microscopic organisms with the


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power to cause disease; and genetics. ThroughCCFAs continuing research efforts, much

more will be learned and eventually a cure willbe found.

For more brochures and fact sheets aboutCrohns disease and ulcerative colitis, pleasecall CCFA at 888.MY.GUT.PAIN (888-694-8872),

or visit us on the Internet at www.ccfa.org.

Knowledge andsupport are power!

Find the answers you need

to help control your Crohnsdisease by joining CCFA.

Discover great ways to manage your diseaseand work for a cure!

Support groupsSupport groups can be especially helpful.The best help, advice, and understandingwill come from interacting with people whoknow what you are going through frompersonal experience. Peers with IBD alsocan be a great source of information.

Local chaptersLocal programs are provided through 12

regional divisions that serve all 50 states andthe District of Columbia. To find programs,support groups, and events in your area,visit our Web site at www.ccfa.org/chapters,or call CCFAs Information Resource Centerat 888.MY.GUT.PAIN (888-694-8872).

Power of TwoYou can find support and comfort throughtalking to someone by phone or e-mail whoknows the challenges of living with ulcerative


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colitis. You can also provide a helping handto those in need of help. Our Power of Two

connection program will match you up basedon your needs or your request to help othersby answering questions, or just being thereto listen.

Information Resource Center (IRC)

Information Specialists at CCFAs InformationResource Center offer help through answerchat, phone, and e-mail. The IRC is here tohelp you understand IBD from diagnosis totreatment and living with IBD. Call us at

888.MY.GUT.PAIN (888-694-8872) Mondaythrough Friday, 9 a.m. to 5 p.m. EasternTime, or email us at [email protected].

CCFA Online CommunityCCFA hosts a free Web site where you can

get the support you need in managing yourcondition. Participate in discussion boards,share personal stories, and much more.The Crohns & Colitis Community is waitingfor people just like you. Join today at

www.ccfacommunity.org.


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Kids and Teens Web SiteKids and teens with IBD have their very own

Web site where they can find specializedinformation on camps, coping in school,and other helpful tips. Check it out atwww.ucandcrohns.org.

Camp Oasis

CCFA Camp Oasis is a co-ed residential campprogram. Its mission is to enrich the lives ofchildren with IBD by providing a safe andsupportive camp community. For more infor-mation, or to find the camp nearest to you,

visit www.ccfa.org/kidsteens/about_camp orcall the Information Resource Center at CCFA.

MembershipBy joining CCFA, youll receive:

Take Charge, our national magazine.

Under the Microscope, our newsletterwith research updates.News, educational programs, and sup-portive services from your local CCFAchapter.

Discounts on select programs andmerchandise.An I cant wait card (provides help withrestroom access).

Members are also able to contribute toresearch to find a cure for these challenging

diseases. Join today!

CCFA sponsors specific major events to increaseawareness and raise funds to find a cure forCrohns disease and ulcerative colitis. Below

are just some of these events. Contact yourlocal CCFA chapter or visit www.ccfa.org to findan event near you.

Take Steps for Crohns & Colitis is CCFAs na-tional walk and celebration. Take Steps enables

patients and families to raise money for cru-cial research and to build awareness aboutCrohns disease and ulcerative colitis. Visitwww.cctakesteps.org for more information.

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You can change lives, help find cures, andrun or walk 13.1 miles with Team Challenge,

the Crohns & Colitis Foundations halfmarathon training program. When you joinTeam Challenge, youll train for an excitingendurance event while raising vital fundsfor research. Call 866-931-2611 or visitwww.ccteamchallenge.org to learn how you

can bring hope by registering for a halfmarathon today.

Glossary of termsAbscess: A collection of pus from infection.

Aminosalicylates: Medications that includecompounds containing 5-aminosalicylic

acid (5-ASA). Examples are sulfasalazine,mesalamine, olsalazine, and balsalazide.

Anastomosis: The surgical connection ofnormally separate parts or spaces.

Antibody: An immunoglobulin (a specializedimmune protein) produced because of theintroduction of an antigen into the body.

Antibiotics: Drugs, such as metronidazole

and ciprofloxacin, that may be used wheninfections occur.

Antigen: Any substance that prompts animmune response in the body.

Anus: Opening at the end of the rectum thatallows solid waste to be eliminated.

Biologic therapies: Drugs made from antibodiesthat bind with molecules to block inflammation.

Bowel: Another name for the intestine. Thesmall bowel and the large bowel are the smallintestine and large intestine, respectively.


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CAM: Complementary and alternative medi-cinea group of diverse medical and health-

care systems, practices, and products that arenot generally considered part of conventionalmedicine.

Chronic: Long-lasting or long-term.

Colitis: Inflammation of the large intestine(the colon).

Colon: The large intestine.

Corticosteroids: These medications affect thebodys ability to begin and maintain an inflam-matory process.

Crohns disease: A chronic inflammatory diseasethat primarily involves the small and large in-

testine, but can affect other parts of the digestivesystem as well. Named for Dr. Burrill Crohn, theAmerican gastroenterologist who first describedthe disease in 1932.

Diarrhea: Passage of excessively frequentor excessively liquid stools.

Extraintestinal manifestations: Complicationsthat occur outside of the intestine.

Fissure: A crack in the skin, usually in the areaof the anus in Crohns disease.

Fistula: An abnormal channel occurring betweentwo loops of intestine or between the intestine

and another nearby structure (such as thebladder, vagina, or skin).

Flare or flare-up: Bouts or attacks of inflamma-tion with associated symptoms.

Gastroenterologist: A doctor who specializesin problems of the gastrointestinal tract.

Gastrointestinal (GI) system: Referring collec-tively to the esophagus, stomach, and smalland large intestines.


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Genes: Microscopic building blocks of life thattransfer specific characteristics from one gener-

ation to the next.

GI tract: Short for gastrointestinal tract.

Immune system: The bodys natural defensesystem that fights against disease.

Immunomodulators: These include azathioprine,6-mercaptopurine (6-MP), and cyclosporine.This class of medications basically overridesthe bodys immune system so that it cannot

cause ongoing inflammation.

Inflammation: A response to tissue injury thatcauses redness, swelling, and pain.

Inflammatory bowel diseases (IBD): A term

referring to a group of disordersincludingCrohns disease (inflammation in the gastroin-testinal tract) and ulcerative colitis (inflammationin 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.

Large intestine: Also known as the colon. Itsprimary function is to absorb water and get rid

of solid waste.

NSAIDs: Nonsteroidal anti-inflammatory drugssuch as aspirin, ibuprofen, ketoprofen, andnaproxen.

Oral: By mouth.

Osteoporosis: A disease in which the bonesbecome porous and prone to fracture.

Rectal: Having to do with the rectum.

Rectum: Lowest portion of the colon.

Remission: Periods in which symptoms disap-pear or decrease and good health returns.


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Resection: Surgical removal of a diseasedportion of intestine. Reattachment of the two

ends of healthy bowel is called anastomosis.

Small intestine: Connects to the stomach andlarge intestine; absorbs nutrients.

Stoma: A surgical opening into the body from

the outside.

Stricture: A narrowing of a section of intestinecaused by scarring.

Tenesmus: A painful but unproductive urgeto move the bowels.

Ulcer: A sore on the skin or in the lining of theGI tract.

Ulceration: The process of ulcer formation.

Ulcerative colitis: A disease that causes inflam-mation of the large intestine (the colon).


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About CCFAEstablished in 1967, the Crohns & Colitis Foun-dation of America, Inc. (CCFA) is the only privatenational nonprofit organization dedicated tofinding the cure for IBD. Our mission is to fundresearch; provide educational resources for pa-

tients and their families, medical profession-als, and the public; and to furnish supportiveservices for people with Crohns or colitis.

Advocacy is also a major component of CCFAsmission. CCFA has played a crucial role in

obtaining increased funding for IBD researchat the National Institutes of Health, and in ad-vancing legislation that will improve the livesof patients nationwide.

Contact CCFA to get the latest informationabout disease management, research findings,to learn more about our advocacy efforts, orto join us and become a member. When youbecome a member, you help support vital re-search that will one day lead to a cure.

We can help! Contact us at:

888.MY.GUT.PAIN

(888.694.8872)[email protected]

Crohns & Colitis Foundation of America

Attn: Membership386 Park Avenue South17th FloorNew York, NY 10016-8804


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The Crohns & Colitis Foundation of America is a non-profitorganization that relies on the generosity of private contri-

bution to advance its mission to find a cure for Crohns dis-

ease and ulcerative colitis.

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Attn: Membership386 Park Avenue South

17th FloorNew York, NY 10016-8804212.685.3440www.ccfa.org

This brochure is supported by an unrestricted educational

grant from Abbott.

Documents

Living W-crohns Brochure Final