diagnosing and managing ibd - crohnscolitisfoundation.org · your symptoms and when they occur. it...

Diagnosing and Managing IBD

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Finding out if you have IBD 2

The diagnostic process 5

Blood and stool tests 5

Monitoring with lab tests 9

The standard: endoscopy & biopsy 10

Radiology scans or diagnostic 14imaging

How tests work together 15to tell your story

When the patient is under 18 22

Surveillance colonoscopy 24

Scheduling tests 25

Questions to ask 26

Health insurance 26

Support and resources 27

The future of diagnostics 28

Glossary of terms 29

About CCFA Inside back cover

What’s Inside?

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When you or a family member experience severe gastrointestinal symptoms that do notrespond to over-the-counter treatments or re-solve on their own, you know that you need toget help quickly. While patients will often seetheir primary care provider first, sometimes it isnecessary to see a specialist in gastrointestinaldisease (a gastroenterologist ) to aid in makinga diagnosis and initiating proper treatment. Ifthere is a reasonable suspicion of inflammatorybowel diseases (IBD), such as Crohn’s disease or ulcerative colitis, it is best to seek out a gas-troenterologist who specializes in treating IBD.CCFA can help you identify such a physician inyour local area through our website,www.ccfa.org.

If your health plan does not provide access to agastroenterologist, find a primary care providerwith the most experience in diagnosing gas-trointestinal (GI) illness. These health careproviders can refer you for the tests and proce-dures discussed in this brochure, which will bethe basis for making your diagnosis, finding thebest therapies, and managing your condition.

Finding out if you have IBD may require manytests, including blood work, colonoscopy withbiopsies, and radiology (X-ray) tests. Thisbrochure explains which tests you may need toundergo to make a clear diagnosis, as well asto monitor the ongoing status of your Crohn’sdisease or ulcerative colitis. Although it is notpossible to cover every diagnostic test in abrochure, the most common tests have been included. If you have a question about a testnot mentioned here, contact CCFA for more information at www.ccfa.org or 1.888.694.8872(MY. GUT.PAIN).

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Finding out if youhave IBDCrohn’s disease (CD) and ul-cerative colitis (UC) belong toa group of conditions knownas inflammatory bowel dis-eases (IBD).

IBD also includes indeterminate colitis (IC), a term used when it is not clear if inflammationis due to Crohn’s or colitis, constituting about15% of all cases. It is unclear why people getIBD, however, research shows that a combina-tion of genes, an overactive immune system,and environmental factors all play a role.

Many new treatments have made IBD moremanageable today than it was only ten yearsago. It is important to bear in mind that IBD is a chronic illness and requires proactive care.Successful disease management begins withan accurate diagnosis and assessment of disease activity, including its precise locationin the gastrointestinal tract. Choices for bothmedical and surgical treatment options will beguided by ongoing clinical and diagnostic mon-itoring. As you learn about the diagnostic testsand procedures, you will also become familiarwith the tools that will help manage IBD for thelong term.

Crohn’s disease or ulcerative colitis? Crohn’s disease may involve inflammation inany part of the gastrointestinal tract (from mouthto anus) while ulcerative colitis is confined tothe large intestine (the colon and rectum). Someof the medications available for treatment canbe used for either ulcerative colitis or Crohn’sdisease, however, some medications are used

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for only Crohn’s disease or only ulcerative colitis.Also, some medications are used for cases involving specific areas of the intestinal tract.Your physician will need to locate the sites ofactive disease and complications to help selectthe most effective therapies for your IBD.

Could it be something else?Typical symptoms of IBD include abdominalpain, cramping, diarrhea, rectal bleeding, andextreme fatigue. These are the result of inflam-mation of the intestine and may be similar inboth Crohn’s disease and ulcerative colitis.

In 25-40% of patients, the classic signs andsymptoms of IBD may be accompanied bysymptoms in the eyes, joints, skin, bones, kidneys, and liver. These non-bowel symptomsare called extraintestinal manifestations orEIMs. Children who develop IBD often experi-ence growth problems, without outward signsof an inflamed bowel.

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tions. These include: infectious gastroenteritis,traveler’s diarrhea, celiac sprue, gallbladderdisease, pancreatitis, stomach ulcers, irritablebowel syndrome (IBS), and colorectal cancer.Ruling out other possible diseases is part of the diagnostic process, starting with patienthistory and physical examination.

Patient history and physical examThe first diagnostic step will be taken duringyour initial doctor’s office visit. A gastroenterol-ogist (or pediatric gastroenterologist, if the pa-tient is a child) is the most qualified healthcarespecialist to diagnose IBD. You will need to provide as much information as possible aboutyour symptoms and when they occur. It helps ifyou can keep a diary listing your symptoms, in-cluding bowel movements, bleeding episodes,waking up at night from pain or diarrhea, fevers,joint aches, or other symptoms. The diaryshould include when symptoms started, howoften they occur, how long they last, and whatmakes them better or worse.

Genes and genetic testingIt also helps to investigate the family tree toidentify relatives who may have had IBD orother serious, chronic GI issues. Having an im-mediate family member with IBD is the numberone risk factor for developing Crohn’s diseaseor ulcerative colitis, although most patientswith IBD do not have a family history of IBD.

However, there is evidence that suggests genetictesting may play a role in identifying a Crohn’spatient’s likelihood of developing complicationsover time. Therefore genetic testing may aidyour physician in making appropriate treatmentdecisions.


The diagnosticprocessYour physician will take yourhistory and perform a physi-cal exam.

The physical exam will focus on the GI tract, including inspection of the anus and possibly a rectal examination. Your physician may ordervarious tests in order to make a diagnosis ofIBD and help identify whether you have Crohn’sdisease, ulcerative colitis, or indeterminate colitis (IC). These tests fall into several cate-gories. Some are invasive—performed insidethe body—while others are non-invasive and require only access to blood or stool samples or radiographic images of the suspected dis-ease site.

Although tests may seem intimidating at first,all are well tolerated by the vast majority of patients. Children will need extra support andcoaching, but remember that pediatric special-ists routinely perform these tests and can adviseyou on how to make the process easier for your child.

Blood and stool testsPhysicians commonly use blood tests as part ofyour diagnostic work-up. Blood tests involve ablood draw, called a venipuncture, from a veinin your arm, although some tests, particularlyfor pediatrics, may be done from a capillary fin-gerstick. Your physician’s office staff may per-form the blood draw, but based on the practiceand your insurance, you may sometimes be required to go to a laboratory collection site tohave your blood taken.

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There are no blood tests that can directly diag-nose IBD. However, blood analysis can deter-mine inflammation in the body. Inflammationmay be detected through a number of measure-ments involving blood cells and proteins in theblood or stool. These tests will not revealwhat’s causing the inflammation, and bestserve as an indicator that the physician needsto perform other types of tests to identify theinflammation’s source.

In addition to being markers of inflammation,blood tests are useful in several other ways. A complete blood count (CBC) can also showsigns of inflammation or infection through anincreased white blood cell count. Anemia maybe detected through red blood cell measure-ments. Blood tests may also assess liver andkidney functions, which can be affected by IBDor the medications used to treat the disease.An electrolyte panel is important to check fordehydration and side effects of medications.Your physician may also order blood tests topredict how well you may respond to a particu-lar medication moving forward.

Blood tests are part of both the initial work-upand ongoing follow-up and monitoring of yourcondition. They usually do not require any special preparation.

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The blood tests described previously are con-sidered “routine,” and will usually be orderedwhen IBD is suspected. The same tests will berequired to monitor your disease while in peri-ods of both remission and active disease, orflare-ups. See the “Routine Blood and StoolTests” table on page 18.

Markers of inflammationProteins found in blood and stool, also calledbiomarkers, may be useful tests for detectinginflammation. They can help in diagnosis andmay predict the course of IBD.

The use of some biomarkers is relatively new;they are not used by all physicians. Stool bio-markers include calprotectin and lactoferrin.Blood biomarkers include CRP & ESR. Researchhas shown that these biomarkers are useful inpredicting IBD activity, but they are also pres-ent in other GI diseases. These blood and stooltests may be more helpful for guiding invasivetesting, detecting flares, and optimizing medicaltherapies than for diagnosing IBD.

Ruling out other diseases with routine stool-based testsGastrointestinal infections with similar symp-toms may be identified by testing small stoolsamples. These tests may look for C. difficile, E. coli, Campylobacter, Yersinia, Salmonella,Shigella, and other infections.

Specialized blood testsSpecialized tests include serology tests for biomarkers that researchers have associatedwith IBD. pANCA, ASCA, CBir1, and OmpC areexamples of biomarkers that may be includedin serology tests. Approximately 80% of patients may have biomarkers associated withIBD while 15-20% of patients may not havethese markers. However, these tests will not benecessary for all IBD patients, as in most cases,the physician can make the diagnosis withoutthem. In addition, these biomarkers are not


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It is important to realize that many biomarkersare the result of more recent research and havevarying degrees of acceptance by the medicalcommunity. There are a number of tests thathelp physicians diagnose and monitor IBD;your physician may not order every one. Theperspective is changing based on research andexperience. Keep up with current informationby speaking with your doctor and checking theCCFA website.

Tests for optimizing therapyTPMT testing may be ordered when physiciansare considering the use of mercaptopurine orazathioprine for patients. Testing can help todetermine whether you would be an appropriatecandidate for these medications and what theoptimal starting dose would be for each person.

An additional specialized test is the tuberculosis(TB) skin test or PPD, required for all patientsprior to beginning a therapy called “TNFblocker.” The test looks for inactive TB whichmay become active in patients receiving TNFblocker therapy. Specialized blood tests aresummarized in the table on page 18.


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Monitoring yourhealth with labora-tory testsIf you have been diagnosedwith IBD, even if there are nodisease symptoms or extra-intestinal manifestations,you will undergo periodicblood testing for evidence of active inflammation andcomplications of your diseaseor medical therapy.

Physicians will tell you that IBD can fool you.You may feel well while inflammation is buildingin your intestine or other complications are un-derway. It is also important to understand thatthe test results will change over time, reflectingyour condition. Tests are a snapshot of whereyou are today, and not a long-term view of yourhealth. Tests that your physician may order ona regular basis will include the following:

Complete blood count—identifies anemia,infection, inflammation, and monitors certain medications

ESR (sedimentation rate)—identifies inflammation

C-reactive protein—identifies inflammation

Liver enzymes—screens for liver complications

Electrolytes—checks for dehydration andmedication side effects

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Stool markers and cultures—identifies inflammation and infectious complications

With a specific disease diagnosis like IBD,health insurance plans will generally cover thecost of monitoring tests as they can contributeto maintaining your health, reducing complica-tions, and finding the right treatments.

The standard for diagnosis of IBD: endoscopy and biopsyEndoscopy is a procedure that lets your doctorlook inside your body. It uses an instrumentcalled an endoscope, or “scope” for short.Scopes have a tiny camera attached to a long,thin, flexible tube. When you have an endoscopy,your physician will be able to see images ofyour intestine magnified on a screen during theprocedure, allowing him to evaluate differentareas of the gastrointestinal tract, to assess theintestinal lining, and to guide biopsies (see Figure 1). In the course of performing diagnosticendoscopy, your physician will take multiplebiopsy samples of the intestinal lining to evalu-ate for microscopic inflammation.

Endoscopy also allows the physician to utilizedifferent types of scopes. Colonoscopes, sigmoidoscopes, and endoscopes are all formsof scopes.

Although laboratory tests support the diagnosisof IBD, endoscopy plays the most importantrole. It helps your physician to see if inflamma-tion is present, where it is located, assess itsseverity, and obtain biopsies to confirm the di-agnosis. Endoscopy is also vital for monitoringyour therapy. Healing of the lining of the intes-tine is a sign that your medication is effective.

ColonoscopyGiven that the colon and end of the small intes-tine are the most frequently involved in IBD,colonoscopy will be the type of endoscopy mostoften performed to both diagnose and monitorIBD. A specially trained physician will guide a

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colonoscope into your rectum and through theentire length of the colon and end of the smallbowel (terminal ileum). Typically, you will receivesedation prior to the procedure to minimizediscomfort. Many patients sleep through theprocedure and do not even recall that the testtook place. You should tell your physician if youexperience discomfort during the procedure soimmediate adjustments to the sedation mightbe made.

The preparation for a colonoscopy is the great-est challenge you have to face. In order for yourphysician to see the intestinal lining, it is important to wash out fecal material prior tothe procedure. For a colonoscopy, you shouldexpect to:

Receive restricted diet instructions and follow them

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Have a friend or family member drop you offand pick you up after the procedure

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Before your test, you will typically drink apreparation fluid that purges your colon of stooland debris by causing diarrhea. Follow the di-rections from the pharmacy closely. The prepa-ration fluid may have an unpleasant taste. Thecolon preparation is time-consuming and canbe uncomfortable; however, the result will be aclean intestine, with an unobstructed view ofthe intestinal lining for a successful colonoscopy.

Colonoscopies are generally very safe proce-dures, but there is an extremely small risk ofbowel perforation during the exam. You maywant to discuss the risk with the physician performing the test.

Many patients ask about the usefulness of lessinvasive “virtual colonoscopies.” Althoughthese radiology-based tests are an exciting newdevelopment, they are not recommended forsuspected IBD, where biopsies and direct view-ing of the colon and small bowel are required.

Other endoscopic testsOther types of endoscopic tests can be orderedto evaluate patients with suspected or estab-lished IBD. These include:

Sigmoidoscopy: an endoscopic evaluation ofthe lower one-half to one-third of the colon.This is useful when your physician wants toconfirm the presence of inflammation in thissegment of the colon. In patients with ulcera-tive colitis, inflammation begins in the rectum.Therefore, a sigmoidoscopy can be a gooddiagnostic test to confirm the disease and tomonitor your response to therapy. It is usuallyperformed without sedation, because it is avery short procedure and is associated withless discomfort than colonoscopy. The prepa-ration for this procedure is less complex thancolonoscopy, usually requiring only one ortwo enemas the day of the procedure.

EGD or upper endoscopy: a common proce-dure that physicians use to evaluate a widevariety of symptoms, including, but not limited

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to, upper abdominal pain, nausea, vomiting,and difficulty swallowing. An endoscopy re-quires fasting after midnight until the test.Crohn’s disease can occasionally affect theesophagus, stomach, and upper smallbowel, which are investigated with an EGD. A longer upper endoscope, called an entero-scope, can be used to look for inflammationfurther into the small bowel. A standard enteroscopy can typically evaluate the firstone-third of the small bowel.

Capsule Endoscopy (CE): a newer procedurethat allows your physician to obtain picturesof the entire small bowel. The capsule or “pill”camera contains a light source and camerasurrounded by a protective outer shell. Italso requires fasting after the evening mealand sometimes bowel preparation prior tothe procedure. The patient is fitted with abelt recorder, swallows an endoscopy cap-sule, which is about the size of a penny, andgoes about regular activities. The capsulethen travels through the small intestine andtransmits approximately 60,000 images tothe recorder. At the end of the day, the pa-tient returns to the doctor’s office for down-loading of images. The capsule is excreted in the stool normally.

Capsule endoscopy is not recommended forpatients with strictures or bowel obstructionsas the capsule can become “stuck” or retainedin the small bowel, resulting in symptoms ofbowel obstructions and, rarely, requiring sur-gery. In addition, biopsies cannot be takenwith the capsule.

EUS or endoscopic ultrasound: a relativelynew technique that uses an ultrasound probeattached to an endoscope to obtain deep images of the gut below the surface. WithIBD, physicians use EUS most often to look at fistulas in the rectal area. Fistulas are abnormal connections from the intestine toanother part of the intestine, another organof the body, or the surface of the skin.


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The role of biopsy and the surgicalpathologistA pathologist is a physician who will examinebiopsy tissue under the microscope for specificfeatures that help make the diagnosis of IBD. Inaddition, the pathologist may identify findingsthat can determine whether the disease is ulcerative colitis or Crohn’s disease. Resultsfrom evaluation of biopsies can take as long as one week.

Radiology scans ordiagnostic imagingTraditional upper endoscopyand colonoscopy will not beable to evaluate about two-thirds of the small intestine.

In addition to capsule endoscopy, radiologicexams or diagnostic imaging are performed toevaluate these segments of intestines as wellas to evaluate areas outside the bowel.

Radiology involves taking pictures that revealthe inside of the body. There are many types of radiological tests used in IBD, including:

Barium enema

CT scan and CT enterography (CTE)

Leukocyte scintigraphy (white blood cell scans)

MRI and MR enterography (MRE)

Small bowel follow-through and small bowel enteroclysis

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How tests work together to tell your storyYour physician will order additional tests basedon your symptoms and laboratory test results.The Imaging Tests chart on page 18 discussesthe areas of interest in the intestine and the radiology and endoscopy tests that you may undergo to confirm the presence of disease atthese sites or complications.

A closer look at diagnostic imagingX-raysNo preparation required. The test exposesyou to a small amount of radiation.X-rays are the oldest way of imaging the inside of the body. X-rays are cost-effectiveand useful for detection of blockages in thesmall or large intestine. Patients with Crohn’sdisease, for example, can have inflammationand/or scarring of the small bowel that narrows the intestine and prevents the easypassage of stool and air. This is called asmall bowel obstruction. The large bowel canalso become blocked and dilated. Rarely,people with ulcerative colitis can develop awidening of the large bowel called toxicmegacolon. These are serious complicationsthat can be seen on a plain X-ray.

Small Bowel Follow-Through (SBFT)/Small Bowel Series (SBS), Enteroclysis and Barium EnemaPreparation: Expect to spend at least a half-day at the hospital, ambulatory care center,or physician’s office for the small bowel orlarge bowel evaluation. Your healthcareprovider will provide specific instructions forpreparing for the test. The test exposes youto small amounts of radiation.


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The contrast used for these tests is usuallybarium. It is a thick, chalky liquid that can be given by mouth or via the rectum. Thereare two types of contrast X-rays of the smallintestine: small bowel follow-through(SBFT)/small bowel series (SBS) and entero-clysis. The large bowel X-ray is called a barium enema.

When you arrive for the test, you will changeinto a hospital gown and the technologistwill take a plain X-ray or scout film. For a smallbowel follow-through, you will drink severalcups of barium and then have an X-ray takenevery 15-30 minutes as the barium travelsdown the small intestine and enters the largeintestine. The time required is variable butmay be as long as four to five hours.

An enteroclysis is similar, except that thebarium is placed directly into the small intes-tine through a tube in the nose or mouth.

During a barium enema, the barium is placeddirectly into the colon using a tube insertedinto the rectum. During the exam, the colonis distended with air to provide better images.

CAT Scan or CT Scan and CT Enterography (CTE)A CAT scan, also known as a CT scan, takessimultaneous X-rays from several differentangles to reconstruct a realistic image of theinternal organs (see Figure 2). It may involvea contrast material delivered orally, rectally, or

Figure 2


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intravenously to improve the quality of thetest. During the test, you will be on a specialtable that advances through the scanner totake images at each level of your abdomen.Newer scanners have an open design to min-imize claustrophobia. A CT of the abdomentakes five to 20 minutes to complete. The CTscan is used to rule out complications of IBD,such as intra-abdominal abscesses, strictures,small bowel obstructions or blockages, fistu-las, and bowel perforation.

A variation of this exam is called CT enterog-raphy (CTE). During this exam, a special oraland/or intravenous contrast agent is given tobetter outline the intestines. In addition, CTEreconstructs images in 3-D to better visualizethe small bowel in relation to other organs.The physician may perform this exam toidentify areas of inflamed bowel and moresubtle obstructions or blockages.

This test emits significant amounts of radia-tion. You may discuss with your physicianwhether imaging alternatives, such as MRI,are more appropriate for you. (See “Radia-tion Risks,” page 21, for more information.)

Be aware that some patients are allergic tothe contrast agent in intravenous form. Letthe technician know if you think you have anallergy. Patients with kidney disease, dia-betes, or dehydration are at increased riskfor kidney side effects from the intravenouscontrast material.

Magnetic Resonance Imaging (MRI)Magnetic resonance imaging (MRI) is usefulfor viewing internal organs, muscles, soft tissue, and the brain. It does not involve radiation. It converts a signal into a realisticimage of the body, giving clear images freeof interference from overlying bowel loops.MRI is also useful in seeing disease outsidethe intestine.

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Test Descriptive Name Helps to Diagnose

CRP C-reactive protein Inflammation (non-specific)

ESR Erythrocyte Sedimentation Rate Inflammation (non-specific)

CBC Complete Blood Count Anemia, infection, inflammation

Electrolytes Sodium, Potassium, Chloride, CO2 Dehydration

Liver Function Liver Enzymes Medication side effects, PSC(primary sclerosing cholangitis)

Vitamin B12 Anemia, nutritional status

Vitamin D Bone mineral status

Calprotectin Stool protein Active intestinal inflammation

Lactoferrin Stool protein Active intestinal inflammation

Routine Blood and Stool Tests*

Test Descriptive Name Potential Usefulness

pANCA perinuclear anti-neutrophil antibody Distinguishes UC from CD

ASCA anti-Saccharomyces cervisiae antibody Distinguishes CD from UC

CBir1 anti-flagellin antibody Indicative of Crohn’s disease

OmpC anti-OmpC antibody Indicative of Crohn’s disease

TPMT thiopurine methyltransferase Safety and starting dose of azathioprine or 6MP

Specialized Blood Tests*

Suspected IBD Location or Complication Possible Tests

Ileocolonic disease Colonoscopy, SBFT/enteroclysis, CTE, MRE, capsule endoscopy (CE)

Upper tract Crohn’s disease EGD-Upper GI Series (UGIS)

Perianal Crohn’s disease MRI-EUS

PSC (primary sclerosing cholangitis) ERCP

Pancreatic and bile ducts MRCP

Perforations, blockages, abscesses Plain X-ray and CT scan

Imaging Tests*

*This is not a complete list of all possible tests. Speak with your healthcare provider regarding other tests.


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During an MRI, you will lie on a table insidethe scanner while the magnet generates images. Some patients are uncomfortable with being enclosed inside the scanner; how-ever, newer machines have open scannersto address this issue. Tell your physician ifyou have concerns about enclosed spaces.

Evolving technology has increased the powerof MRIs to investigate IBD, making it a morefrequent choice for high quality images ofthe small intestine. MR enterography (MRE)has emerged as an alternative to small bowelfollow through and CT enterography (CTE) forsmall bowel evaluation. In addition, MRI ofthe pelvis can be very useful in documentingthe extent of disease and presence of ab-scess or infection in patients with perianalCrohn’s disease.

Inform your physician if you have a pacemakeror any metal implants in order to avoid acomplication from the MRI.

White Blood Cell Scan or LeukocyteScintigraphyA tagged white blood cell scan called leukocytescintigraphy is occasionally used to detectthe white blood cells that have migrated tothe intestinal tissue and caused inflamma-tion. A tagged white cell scan can be usefulto determine the presence of active inflam-mation and the site of inflammation.

UltrasoundUltrasound technology is used to study manyorgans in the abdomen, typically the liver,gallbladder, and those in the pelvic area.Currently, endoscopic ultrasound and MRIare both used to diagnose perianal Crohn’sdisease. Physicians in the US do not typicallyuse ultrasound to evaluate the small bowel;however, in Europe, they use ultrasoundmore often to assess for blockages in thesmall bowel. Ultrasound emits no radiation,and relies on the shadows cast by inaudiblesound waves. Although ultrasounds do not


21

usually require preparation other than noteating for a few hours before the test, youshould check with your physician.

The multiple roles of diagnostic imagingAs is the case with laboratory tests, diagnosticimaging may also play multiple roles in treatingand managing IBD. Not only will the radiologyscans help to determine if you have Crohn’sdisease, but they will also reveal the extent andseverity of the inflammatory process and assess complications of disease such as an ob-struction, fistula, or abscess. This informationwill allow your physician to recommend thebest course of therapy. For more information onmedication options, review CCFA’s brochure,“Understanding IBD Medications and Side Ef-fects.” Even after diagnosis, imaging studiesmay be used to determine how well you are responding to therapy and confirming that yourdisease is in remission. This is what is called“monitoring” your IBD and it is a critical part of getting and staying well.

Radiation risksThere is research that indicates radiation as arisk factor for cancer. It is clear that health-re-lated radiological scans contribute the most toradiation exposure for the majority of patients.CT scans currently generate the largest amountof radiation among the types of scans discussedin this brochure. Despite the radiation exposureassociated with CT, it is a still a very useful testfor diagnosing IBD and its complications. How-ever, other exams such as MRI and ultrasoundare being used increasingly to decrease radia-tion exposure for patients.

You and your physician will discuss the risksand benefits of all your decisions, diagnosticand therapeutic. There are no risk-free options;however, the absolute risk associated with radiation from imaging is much lower than therisk of having poorly controlled IBD because ofinadequate monitoring of your disease.

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22

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If you think you may be pregnant, inform yourphysician, as it is important to avoid all teststhat can expose your fetus to radiation.

When the patient isunder 18Although IBD most typicallyappears in young adulthood,there are increasing numbersof cases in patients under 18years of age.

Children are not miniature adults and theprocess of diagnosing and treating IBD or anyother illness must be tailored to their biologyand anatomy.

You will need the advice of a pediatric gastroenterologist, a subspecialist in the field who treats IBD in kids. Symptoms of concern in children include:

Abdominal pain

Diarrhea

Failure to gain weight or grow

Fatigue

Fever

Rectal bleeding

Relapsing gastrointestinal illness over several months

Weight loss


23

A pediatric gastroenterologist will order the diagnostic tests and procedures that are thesafest and most appropriate for your child anddiscuss all treatment goals with you. Clearly,you want your child to be free from his or hersymptoms as soon as possible. This would indi-cate good response to the treatment. However,your child may require ongoing use of labora-tory tests, endoscopy, and diagnostic imagingto assess for complete healing and for compli-cations of medical therapy. Your physician maymake changes in medications as a result ofthese tests.

Your child’s doctor may also direct you to coun-seling and support to help your child throughwhat could be a challenging time. CCFA haschild-specific literature available to help youteach your child about diagnosing and livingwith IBD. Available reading material for kidsmay even help them get over the fears of bloodtesting and procedures. Contact our InformationResource Center at www.ccfa.org or1.888.694.8872 (MY.GUT.PAIN) for free copiesof this literature.

Concerns specific to childrenRecurrent diagnostic imaging should be mini-mized to reduce lifetime exposure to radiation.MRIs are becoming a more common choice, because they do not involve radiation, but thistechnology is evolving and may not be available

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24

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in every location. Also, an MRI is more costly.Stool tests for lactoferrin and calprotectin mayhelp identify patients that need additional diagnostic testing. Blood tests require onlyabout two teaspoons of blood from a child andmost children do well with blood draws. If achild is anxious, formal relaxation techniquescan be taught and anesthetic creams can numbhis or her arm.

Another concern in pediatric IBD may be the useof endoscopy. As with adults, colonoscopy playsa central role in diagnosing children. Childrenreceive general anesthesia rather than con-scious sedation, as in adults. Complications areextremely rare, especially when performed in aspecialized setting like a pediatric IBD center.

Keep in mind that your physician will only orderdiagnostic tests if the clinical picture leads himor her to believe that IBD is a possibility—whichis one you cannot afford to overlook. In addition,the risk of not knowing that your child has IBDor inadequate monitoring of IBD is far greaterthan the risk from diagnostic testing.

SurveillancecolonoscopyUlcerative colitis and Crohn’sdisease are risk factors fordevelopment of colon cancer.

About 5% of patients with ulcerative colitis de-velop colon cancer. The risk increases with theduration of the disease and the extent of coloninvolved.

Colorectal surveillance through colonoscopy, a process of looking for signs of cancer as apreventive measure, is generally recommended


25

8 to 10 years after the diagnosis of ulcerativecolitis or Crohn’s disease. Your physician may recommend routine surveillance colonoscopyto obtain biopsies throughout the colon. Thesebiopsies will help to identify dysplasia, or pre-cancer in the colon. Guidelines for surveillancechange over time, so you should ask your doctorabout what is new in detection of colon cancer.With proper treatment and monitoring of yourIBD, you should be able to maximize yourchances for good health over the long term andnot miss signs of additional disease.

Scheduling tests Scheduling of diagnostic testsand procedures can be chal-lenging in a busy IBD Center.

There is usually no specific order of tests, butrather a need to have all the information gener-ated in a reasonable period of time. If you are illand undergoing an initial evaluation, or experi-encing a serious flare, the timing is certainlymore pressing than for a routine, elective, mon-itoring procedure, which you may schedulemonths in advance. The physician may want theresults as soon as possible. A flexible schedulewill be helpful in making yourself available fortesting. Remember, there are lead times builtinto obtaining results of biopsies and beginningtreatment. At times, diagnostic tests may beclustered together for your convenience.

You will want to work with your employer totake advantage of available sick days to covertesting requirements. If you already have utilizedavailable sick time, you will have to considershort term disability or family leave. Rememberthat this is a serious health issue and you willwant to get your disease in remission as soon aspossible so you can return to work.

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26

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If the patient is your child, make sure to speakwith your child’s teacher or guidance counselorto discuss any necessary school accommoda-tions that may be required so that ongoing diagnostic testing may take place.

Questions for Your Doctor or Nurse:

1. What is the purpose of the test? What willhappen if we get a positive result?

2. Do I need to fast or prepare otherwise?

3. How long will it take?

4. Can I go alone or must I have a companion?

5. When will I learn the results? Who will begiving them to me? May I have a hard copyfor my records?

6. Will we be repeating this test or procedure?How often?

7. Will health insurance cover the cost of thistest, and if so, how frequently?

Health insuranceconsiderationsIn the health care reform era,things are changing quickly.

It is crucial to evaluate your coverage when youface the prospect of chronic disease. It is goodnews that health plans are now required underfederal law to cover all patients, includingthose with serious medical conditions. How-ever, levels of coverage vary and you may wellwant to make changes going forward with achronic disease diagnosis like IBD. To find outhow the new law will affect you, the US Depart-


27

ment of Health provides information atwww.healthcare.gov.

High-deductible health plans may require youto absorb much of the cost of the initial diag-nostic work-up including endoscopy, radiology,and laboratory work. It may be more cost-effec-tive to pay higher premiums and reduce out-of-pocket costs if you need ongoing tests andprocedures. Costs of procedures vary by locationand sometimes insurers require prior approvalbefore you undergo a test. This is particularlytrue when a test of the same type is repeatedwithin a specific time frame. You will need tospeak with your health insurance providerabout the provisions of your plan.

If you are uninsured and cannot cover the costof insurance premiums, you can look at resourcesavailable in your state for the uninsured andconsider enrolling in a plan that permits accessto the basic diagnostic requirements and treat-ments for IBD.

Support and resourcesIf you suspect you have IBD,consider finding a supportgroup as early as possible;other patients can be valu-able in helping you deal witha diagnostic process that isnew and unknown.

Particularly, parents of youngsters who are illmay find the experiences of other parents edu-cational and reassuring. Your gastroenterologistcan guide you to local hospital-based resourcesand CCFA chapters.

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28

Scientists combinati how they sion of IBD CCFA’s Ris atric Netw in our four type of cli

Diagnostic tists are a IBD asses called MA tion in MR flammatio non-invas

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CCFA makes available much information forsupport of the newly diagnosed patient throughour website, www.ccfa.org. Or, call our InformationResource Center directly at 1.888.MY.GUT.PAIN(888.694.8872) and speak to an InformationSpecialist who can offer helpful suggestionsand resources. One such resource is the “Diag-nostic Test Log” included in this brochure. Thelog can be used to help you keep track of testsand results. To use the log, fill in the informationabout your tests under each category.

We suggest you keep it somewhere handy soyou can access it easily. The log also serves asa convenient reference for when you meet orspeak with a health care provider.

Living your lifeOngoing monitoring of your IBD should not interfere with your daily life and activities. It issimply an additional aspect of how you live andtake care of your body. By having accurate diagnosis and adequate monitoring of Crohn’sdisease or ulcerative colitis, you have the bestchance of living your life as normally as possibleand pursuing all of your dreams and goals.

The future of diagnosticsWe look forward to a futurewhen diagnostic testing willprovide better guidance forchoosing therapies andtelling us whether a patientwill have a mild or more serious disease course.


29

Scientists are currently studying biomarkers incombination with newer genetic tests to seehow they might accurately forecast the progres-sion of IBD or development in family members.CCFA’s Risk Stratification Initiative in our Pedi-atric Network, the largest financial investmentin our four-decade history, is involved in thistype of clinical research.

Diagnostic imaging is also an area where scien-tists are attempting to improve technology forIBD assessments. For example, a moleculecalled MAdCAM-1 is currently under investiga-tion in MRI; the molecule will help target in-flammation in the intestine, and may enablenon-invasive diagnosis and monitoring of IBD.

CCFA has also committed heavily to researchingthe gut microbiome, the collective study of in-testinal bacteria and their genes. It is our planto make new scientific tools accessible to sci-entists to help figure out how the inflammationof IBD happens and how we might stop or prevent it.

In addition, CCFA has an active IBD DNA Data-bank serving the community of scientists whodepend on DNA samples from patients with active disease to study IBD.

Visit our website, www.ccfa.org, to learn moreand see how you can get involved in supportingour research initiatives.

GlossaryAnti-OmpC (outer membrane protein C): the antibody to a specific protein on the outermembrane, recently identified as a significantbiomarker. New data shows that anti-OmpC levels are high among members of families thathave a history of both Crohn’s and colitis.

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30

ERCP (end creatogra lizes X-ray primary sc

ESR (eryth tory blood

Granulom lining, vis cate the b material; s but not alw

Gut: the in

Hemoglob of red bloo in the CBC

Lactoferri tion that a

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Radiograp depends o

ASCA (anti-saccharomyces cerevesiae): a serol-ogy test useful in distinguishing Crohn’s disease from ulcerative colitis and predictingdisease course.

Biomarkers: proteins in the body that may be measured by laboratory tests to assist in diagnosis and management of disease.

Biopsy: a tissue sample provided to a patholo-gist to help diagnose and classify disease.

Calprotectin: a stool test for intestinal inflam-mation that aids in predicting active disease.

CBC (complete blood count): a laboratory bloodtest that helps to detect anemia, infection, andinflammation.

CBiR1 (Anti-Flagellin): this antibody may be amarker of Crohn’s disease complicated by fistulas, perforations, or other serious problems.

CRP (C-reactive protein): a laboratory test thatindicates non-specific inflammation in the body.

CT (computed tomography): an imaging testthat uses X-rays to make detailed pictures ofstructures with the body.

CTE (computed tomography enterography):a variation of the CT scan where the patientswallows special contrast agents to give asharp outline of the intestines in the X-rays.

DEXA (bone densitometry scan): an X-ray thatassesses the thickness of bones and risk for osteoporosis (thin bones) and fractures.

EIM (extraintestinal manifestations of IBD):signs and symptoms outside of the gastroin-testinal tract associated with IBD.

Electrolytes: laboratory test panel includingserum sodium, potassium, chloride, and car-bon dioxide that may indicate dehydration andother complications or medication side effects.


31

ERCP (endoscopic retrograde cholangeopan-creatography): a type of endoscopy that uti-lizes X-ray to diagnose a liver disease calledprimary sclerosing cholangitis (PSC).

ESR (erythrocyte sedimentation rate): a labora-tory blood test for non-specific inflammation.

Granuloma: a collection of cells in the intestinallining, visible under the microscope, that indi-cate the body’s attempt to get rid of a foreignmaterial; sometimes seen in Crohn’s disease,but not always present.

Gut: the intestine or bowel.

Hemoglobin and hematocrit: measurements of red blood cell number and volume, found in the CBC, useful in determining anemia.

Lactoferrin: a stool test for intestinal inflamma-tion that aids in predicting active IBD.

MRCP (magnetic resonance cholangiopancre-atography): a type of MRI that allows the physi-cian to see images of the bile ducts, which aresimilar to ERCP images.

MRI (magnetic resonance imaging): an imagingtest that uses a magnetic field and pulses ofradio wave energy to make pictures of organsand structures within the body.

p-ANCA (perinulclear anti-neutrophil cytoplas-mic antibodies): a serology test that may aid indiagnosing ulcerative colitis, distinguishing itfrom Crohn’s disease, and predicting diseasecourse.

PPD: (purified protein derivative): tuberculosis(TB) skin test, advised for all patients taking biologic therapies, to assess the presence oflatent and active TB disease.

Radiographic: Relating to the process that depends on X-rays.

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32

Small bowel enteroclysis: an imaging test thatevaluates the small intestine by infusing bariumand air through a tube inserted into the smallintestine via the nose.

Serology: a blood test to identify antibodies(proteins) which may have developed in re-sponse to an infection, other foreign proteins,or to one’s own proteins.

SBFT/SBS: (small bowel follow-through/smallbowel series): an imaging test that evaluatesthe small intestine, involving swallowing barium, after which serial x-rays are taken.

US (ultrasound): an imaging test in which high-frequency sound waves, not heard by thehuman ear, are transmitted through body tis-sues using a transducer, relaying informationto a computer for display.

Toxic megacolon: an acute condition where thecolon is dilated or enlarged, a complication associated with ulcerative colitis.

TPMT: (thiopurine methyl transferase): a labo-ratory blood test for the activity of an enzymethat helps in breaking down the medicationsazathioprine and 6MP, which helps to establishproper dosing of these medications.

Virtual colonoscopy: a less invasive, new ver-sion of colonoscopy, done without sedationand using X-rays and computer-based, virtual-reality technology to produce 3-D images of thelining of the colon. Virtual colonoscopy is notcurrently used to diagnose or monitor IBD.

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Type of test Names of healthcare providersDate of test

Purpose of test Outcome and follow-up

Diagnostic Test Log

Keep track of your test information by using this diagnostics log. Fill out important information under each category and leave some space to record anychanges or new information.

31

Finding out if youhave IBDCrohn’s disease (CD) and ul-cerative colitis (UC) belong toa group of conditions knownas inflammatory bowel dis-eases (IBD).

IBD also includes indeterminate colitis (IC), a term used when it is not clear if inflammationis due to Crohn’s or colitis, constituting about15% of all cases. It is unclear why people getIBD, however, research shows that a combina-tion of genes, an overactive immune system,and environmental factors all play a role.

Many new treatments have made IBD moremanageable today than it was only ten yearsago. It is important to bear in mind that IBD is a chronic illness and requires proactive care.Successful disease management begins withan accurate diagnosis and assessment of disease activity, including its precise locationin the gastrointestinal tract. Choices for bothmedical and surgical treatment options will beguided by ongoing clinical and diagnostic mon-itoring. As you learn about the diagnostic testsand procedures, you will also become familiarwith the tools that will help manage IBD for thelong term.

Crohn’s disease or ulcerative colitis? Crohn’s disease may involve inflammation inany part of the gastrointestinal tract (from mouthto anus) while ulcerative colitis is confined tothe large intestine (the colon and rectum). Someof the medications available for treatment canbe used for either ulcerative colitis or Crohn’sdisease, however, some medications are used

2

ERCP (endoscopic retrograde cholangeopan-creatography): a type of endoscopy that uti-lizes X-ray to diagnose a liver disease calledprimary sclerosing cholangitis (PSC).

ESR (erythrocyte sedimentation rate): a labora-tory blood test for non-specific inflammation.

Granuloma: a collection of cells in the intestinallining, visible under the microscope, that indi-cate the body’s attempt to get rid of a foreignmaterial; sometimes seen in Crohn’s disease,but not always present.

Gut: the intestine or bowel.

Hemoglobin and hematocrit:measurements of red blood cell number and volume, found in the CBC, useful in determining anemia.

Lactoferrin: a stool test for intestinal inflamma-tion that aids in predicting active IBD.

MRCP (magnetic resonance cholangiopancre-atography): a type of MRI that allows the physi-cian to see images of the bile ducts, which aresimilar to ERCP images.

MRI (magnetic resonance imaging): an imagingtest that uses a magnetic field and pulses ofradio wave energy to make pictures of organsand structures within the body.

p-ANCA (perinulclear anti-neutrophil cytoplas-mic antibodies): a serology test that may aid indiagnosing ulcerative colitis, distinguishing itfrom Crohn’s disease, and predicting diseasecourse.

PPD: (purified protein derivative): tuberculosis(TB) skin test, advised for all patients taking biologic therapies, to assess the presence oflatent and active TB disease.

Radiographic: Relating to the process that depends on X-rays.

211826_Workflow_pullout_Layout 1 3/22/11 8:23 AM Page 1

Diagnostic Test Log

132

When you or a family member experience severe gastrointestinal symptoms that do notrespond to over-the-counter treatments or re-solve on their own, you know that you need toget help quickly. While patients will often seetheir primary care provider first, sometimes it isnecessary to see a specialist in gastrointestinaldisease or a gastroenterologist to aid in makinga diagnosis and initiating proper treatment. Ifthere is a reasonable suspicion of inflammatorybowel diseases (IBD), such as Crohn’s disease or ulcerative colitis, it is best to seek out a gas-troenterologist who specializes in treating IBD.CCFA can help you identify such a physician inyour local area through our website,www.ccfa.org.

If your health plan does not provide access to agastroenterologist, find a primary care providerwith the most experience in diagnosing gas-trointestinal (GI) illness. These health careproviders can refer you for the tests and proce-dures discussed in this brochure, which will bethe basis for making your diagnosis, finding thebest therapies, and managing your condition.

Finding out if you have IBD may require manytests, including blood work, colonoscopy withbiopsies, and radiology (X-ray) tests. Thisbrochure explains which tests you may need toundergo to make a clear diagnosis, as well asto monitor the ongoing status of your Crohn’sdisease or ulcerative colitis. Although it is notpossible to cover every diagnostic test in abrochure, the most common tests have been included. If you have a question about a testnot mentioned here, contact CCFA for more information at www.ccfa.org or 1.888.694.8872(MY. GUT.PAIN).

Type of test Names of healthcare providersDate of test

Purpose of test Outcome and follow-up

Small bowel enteroclysis: an imaging test thatevaluates the small intestine by infusing bariumand air through a tube inserted into the smallintestine via the nose.

Serology: a blood test to identify antibodies(proteins) which may have developed in re-sponse to an infection, other foreign proteins,or to one’s own proteins.

SBFT/SBS: (small bowel follow-through/smallbowel series): an imaging test that evaluatesthe small intestine, involving swallowing barium, after which serial x-rays are taken.

US (ultrasound): an imaging test in which high-frequency sound waves, not heard by thehuman ear, are transmitted through body tis-sues using a transducer, relaying informationto a computer for display.

Toxic megacolon: an acute condition where thecolon is dilated or enlarged, a complication associated with ulcerative colitis.

TPMT: (thiopurine methyl transferase): a labo-ratory blood test for the activity of an enzymethat helps in breaking down the medicationsazathioprine and 6MP, which helps to establishproper dosing of these medications.

Virtual colonoscopy: a less invasive, new ver-sion of colonoscopy, done without sedationand using X-rays and computer-based, virtual-reality technology to produce 3-D images of thelining of the colon. Virtual colonoscopy is notcurrently used to diagnose or monitor IBD.

211826_Workflow_pullout_Layout 1 3/22/11 8:23 AM Page 2

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About CCFAEstablished in 1967, the Crohn’s & Colitis Foun-dation of America, Inc. (CCFA) is a private national nonprofit organization dedicated tofinding the cure for IBD. Our mission is to fundresearch; to provide educational resources forpatients and their families, medical profession-als, and the public; and to furnish supportiveservices for people with Crohn’s or colitis.

Advocacy is also a major component of CCFA’smission. CCFA has played a crucial role in obtaining increased funding for IBD research at the National Institutes of Health, and in advancing legislation that will improve the livesof patients nationwide.

Contact CCFA to get the latest information onsymptom management, research findings, andgovernment legislation. You can also become a member. Join CCFA today by calling888.MY.GUT.PAIN (888-694-8872) or visitingwww.ccfa.org.

We can help! Contact us at:

888.MY.GUT.PAIN(888.694.8872) [email protected]

Crohn’s & Colitis Foundation of America386 Park Avenue South17th FloorNew York, NY 10016-8804

211826_diagnostics_bro_r1 3/23/11 1:59 AM Page i

The Crohn’s & Colitis Foundation of America is a non-profitorganization that relies on the generosity of private contri-butions to advance its mission to find a cure for Crohn’sdisease and ulcerative colitis.

4/2011

386 Park Avenue South17th FloorNew York, NY 10016-8804212.685.3440www.ccfa.org

This brochure is sponsored by Prometheus Laboratories, Inc.

Prometheus and the link design, are registered trademarks of Prometheus Laboratories, Inc.

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