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Crohn’s Disease and Ulcerative Colitis:
The Crohn’s & ColitisFoundation of America is anon-profit, volunteer-driven
We hope that this brochure willhelp you to better understand theseillnesses, and to become an activemember of your healthcare team.
The printing of this brochure was made possible by a grant from
are given to maintain their healthin a disease-free, or limited-disease, state. If you have Crohn’sdisease or ulcerative colitis, theinitial
purpose of treatment isfor you to get better (referredto as getting into “remission”).
you in remission.
The therapies used for thissecond step are referred toas “maintenance therapies.”
This brochure explains the rolethat maintenance therapies playin Crohn’s disease and ulcerativecolitis. For a broad discussionof the therapies used to treatthese inflammator y boweldiseases (IBD), please requestCCFA’s “Medications” brochure.
WHY DO WE NEED MAINTENANCETHERAPY IN IBD?
Both Crohn’s disease and ulcerative colitis arechronic
inflammatory diseases — they tend torecur over time. Many people with IBDrespond very well to medications when theyhave a flare-up. Unfortunately, they are atrisk for future attacks unless they stay oncertain medications.These experiences haveled to the search for therapies that keep patientsin remission. Because these medications willbe needed on a chronic basis, it is imperativethat maintenance therapies be both effectiveand
To gain control of the inflammation duringthe acute phase (the initial, active phase ofthe illness), physicians may prescribe morepotent therapies, despite potential side effects,if those therapies are necessary to get the patientbetter. However, side effects or toxicity fromtreatment during the maintenance phase arefar less acceptable, since IBD can require alifetime of these medications.
WHAT MAINTENANCE THERAPIESARE USED IN IBD?
Sulfasalazine (Azulfidine®) and the newer gener-ation of sulfa-free agents (Asacol,® Canasa,®Colazal,® Dipentum,® Pentasa,® and Rowasa®) arecommonly used to prevent flare-ups of IBD.Thebenefits of these drugs usually depend on theamount of the dose: The larger the dose, themore likely that patients will improve during theacute phase, and the more likely that they willremain in remission. Sulfasalazine’s side effects,however, usually worsen as the dose increases.
Although higher doses are more effective, morepeople have “intolerable” side effects—such asheadaches, nausea, or fatigue—at these higherdoses. In men, abnormal sperm numbers andfunction are other common problems withlong-term sulfasalazine treatment, leaving somecouples unable to conceive.The effects on spermare reversible after sulfasalazine is stopped.
Patients taking sulfasalazine should also take adaily 1mg dose of folic acid.
Far fewer side effects are seen with the sulfa-freeagents, which contain mesalamine (5-ASA), thesame active ingredient as sulfasalazine. Sideeffects are uncommon (headaches, abdominalcramps, nausea), and generally are not related tothe dose of the medication. However, if you feelthat you are having side effects, you and yourdoctor may be able to find a slightly lower doseat which you experience no side effects, whilethe drug still is effective in maintaining
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remission.These agents are much more expensivethan generic sulfasalazine, and may requireupwards of 12 to 16 pills a day to maintainremission. All of these agents may be continuedin pregnancy and nursing.
Doses of these agents often must be higherin Crohn’s than in ulcerative colitis.Whilemost of these drugs are capsules or pills, thesulfa-free agents also are available as enemas(Rowasa®) and suppositories (Canasa®) for use inpatients with inflammation in the rectum or thebottom parts (left side) of the colon.The usualdose is one enema nightly, or two suppositoriesdaily. Maintaining a remission by using an enemaor suppository often requires continued use ofthese agents, either alone or in combinationwith pills, although some patients may find theyonly need to use the enema a few times eachweek.
Antibiotics are effective as chronic (long-term)therapy in some people with IBD, particularlyCrohn’s disease patients who have suchproblems as fistulas (abnormal channels thatconnect loops of intestine to the skin) orrecurrent abscesses (pockets of pus) near theiranus.The most common antibiotics used aremetronidazole (Flagyl®) and ciprofloxacin(Cipro®), although there are many others thatmay be effective in certain individuals.
Patients whose active disease is successfullytreated with antibiotics may be kept on thesemedications as maintenance therapy if the agentsremain effective. Side effects can be particularlytroublesome with metronidazole, includingtingling of the hands and feet that may persistafter the drug is stopped. Alcohol intake andexposure to the sun is discouraged, and in mostcases these agents are not continued in pregnancy.
Steroids (e.g., prednisone, hydrocortisone,Medrol,® budesonide or Entocort™EC) often areused in the acute treatment phase when the 5-ASA drugs are not working. Steroids workquickly and effectively in most cases. However,despite their benefit in treating acute illness,steroids are not effective in preventing flare-upsand thus are rarely used as a maintenance med-ication in either Crohn’s disease or ulcerativecolitis. Steroids also have many potentially seri-ous side effects, such as elevated blood sugar,high blood pressure, cataracts, osteoporosis (evenleading to bone fractures), among others.Therisk of adverse effects increases with the durationof the treatment.Thus, steroids should only beused to control the disease, and then should beeliminated gradually, while another agent is usedto maintain remission.
Strategies to eliminate steroids include increasingthe dose of the 5-ASA agents, adding a 5-ASAenema or suppository if the IBD is located in therectum or distal (lower) colon, or introducingan antibiotic or some of the newer medicationsdescribed below. Some patients require surgeryif they still cannot effectively reduce oreliminate steroids from their medical regimen.
6-mercaptopurine (6-MP, Purinethol®) andazathioprine (Imuran®) have been increasinglyused to get IBD patients off steroids, and to keepthem off.They also are beneficial in somepatients with Crohn’s disease who have fistulas.
Both of these drugs are effective in treatingactive IBD and in maintaining remission, andare relatively safe. Physicians must carefullymonitor these patients. In particular, these drugsmay cause an unintended decrease in thenumbers of blood cells, or inflammation of theliver or pancreas. Although it was initially fearedthat patients treated with these drugs could beat increased risk for infections or certain types
M A I N T E N A N C E
of cancers, this has not been conclusively shownin the various studies on these drugs.
These medications can be expensive, but usuallyonly require one or a few pills daily. Patientsneeding these medications to achieve remissionwill often suffer a relapse of disease when themedications are stopped; thus, many physiciansare advocating their chronic use as maintenancetherapy, in some cases even during pregnancy.
Patients are encouraged to fully discuss theseissues with their doctors.
Methotrexate is used in Crohn’s disease patientswho cannot stop steroids without a flare oftheir disease, or in whom the other medicationshave failed to prove effective. It also may behelpful in improving Crohn’s fistulas.This drughas the benefit of being dosed only once aweek, but probably must be given as an injection(usually by the patient himself or a familymember) to be most effective. Methotrexate isinexpensive, but patients also need to take adaily folic acid pill (1 mg).
Methotrexate should be continued chronicallyif effective. Many patients have side effects, mostcommonly nausea, headache, and fatigue. Manyof these may improve with a lowering of thedose.There are particular liver and lung problemsthat are very rarely caused by methotrexate.
Careful monitoring by a physician, includingperiodic blood tests, is essential. Unlike mostof the other agents used in IBD, methotrexateis known to cause birth defects. It absolutelymust not be taken during pregnancy, or by menor women planning conception.
Infliximab (Remicade®) is a new biologicaltherapy that is used in Crohn’s disease, includingCrohn’s fistulas. Infliximab is given as a single-dose intravenous infusion, and many patientsmay be able to wait a few months (or longer)
before needing another dose. Patients withfistulas often get three doses over an initial six-week period.The drug works very quickly,usually within one or two weeks, and manypatients also experience relief from the fatigue,fevers, and joint pains that may accompanytheir disease
Infliximab is effective in treating active Crohn’sdisease and fistulas, and studies have suggesteda role as a maintenance therapy as well. Mostpatients on steroids can lower the dose andeventually stop them altogether. Patients areusually encouraged to continue or start drugssuch as 6-mercaptopurine, azathioprine, ormethotrexate, with the hope that a remissionmay be maintained on these agents. Manypatients, but not all, require additional dosesof infliximab.
Infliximab is very expensive, and long-termsafety data won’t be available for many years.
Its safety in pregnancy is not known. Mostpatients do not experience any side effects.
During the infusion, some patients experiencefevers, chills, or rashes.The most common sideeffects seen in the days to weeks after theinfusion include headaches, nausea, and upperrespiratory infection (i.e., cough and sorethroat). Fistula patients may form abscessesnear the fistula site, so many are kept onantibiotic therapy. Serious side effects arevery rare, but the drug must be administeredby trained medical personnel in case such anevent occurs.
IS MAINTENANCE THERAPY NEEDEDAFTER SURGERY?
Surgery for ulcerative colitis nearly always resultsin the complete removal of the entire colon andrectum. Patients typically undergo one of twoprocedures. In the ileal-anal anastomosis, aninternal pouch is constructed out of the end ofthe small bowel (the ileum), which is attachedto the anus. In an ileostomy, the surgeon createsan opening from the ileum to the skin.Through
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this opening, wastes are emptied into a plasticpouch that is attached to the abdomen withadhesive. Ulcerative colitis cannot recur withouta colon or rectum; thus, there is no need formaintenance medications.These patients,however, may need medication to control diar-rhea. In addition, people with an ileal–anal anas-tomosis may develop inflammation of the inter-nal pouch (“pouchitis”) that requires medicationto control.
Surgery for Crohn’s disease varies, dependingupon the location of the inflammation. Patientswhose Crohn’s is limited to the large intestine(colon and rectum) often do not redevelop theillness (and don’t require maintenance medica-tions) if their entire colon and rectum areremoved, and they are left with an ileostomy.
However, if only part of the colon is removedin these patients, the Crohn’s has a very highlikelihood of returning. At some point, the dis-ease also may recur in patients with Crohn’s ofthe small intestine, because complete removal ofthe small intestine is not possible. Patientswith Crohn’s fistulas often suffer recurrencesafter surgery, as well.
Until recently, many Crohn’s patients werenot placed on maintenance medications aftersurgery. Drugs such as 6-mercaptopurine,azathioprine, and high doses of the 5-ASAmedications and metronidazole have beenshown to delay recurrence of Crohn’s diseasein some of these patients. Physicians mayrecommend such therapies to patients,especially those who are at high risk forrecurrent disease, and/or who have alreadyhad previous bowel surgeries for Crohn’s.
WHAT CAN I DO TO MAXIMIZEMY CHANCES OF MAINTAININGREMISSION?
Some general guidelines applicable to mostpatients on maintenance therapies for IBD are:
1. The medications won’t work if they sit in
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2. If you have Crohn’s disease, you should stop
smoking. Smoking can prevent remissions inCrohn’s disease and make it more active.
After Crohn’s surgery, the illness comes backsooner, and often more severely, in smokersthan in non-smokers.
prescription pain relievers have beenshown to cause ulcerations in the intestinaltract, and may cause a relapse. Unless youneed these products for a serious healthreason (such as heart disease or strokes),you should avoid taking them. Alwaysquestion your doctor if these agents areprescribed: Aspirin, including enteric coatedpreparations (Ecotrin®); and non-steroidalanti-inflammatory drugs (NSAIDs), such asibuprofen (Advil,® Motrin,® Aleve,® Anaprox,®Naprosyn,® Daypro® etc.).The new “COX-2”inhibitors (Celebrex,® Vioxx®) may also be“off-limits” for IBD patients.
4. Some patients experience flares of their
disease after the use of various antibiotics.
Unless an infection is documented by aphysician, avoid using antibiotics. It is a goodidea to contact your IBD physician beforetaking any new medications to determineif an alternative should be considered.
Remember, it is often easier to keep
IBD undercontrol than to get
it under control! Complyingwith a demanding treatment schedule isn’talways easy, but the reward—better health—isdefinitely worth the effort. New medicationscontinue to be developed for active disease andfor maintaining remission.We also are movingforward in our understanding of the cause andthe genetics of Crohn’s disease and ulcerativecolitis. It is hoped that this will ensure betterhealth for all people with IBD.
C R O H N ’ S & C O L I T I S F O U N DAT I O N
O F A M E R I C A
e - m a i l :
i n f o @ c c f a . o r g
About Crohn’s Disease • About Ulcerative Colitis
Diet and Nutrition • Emotional Factors • Complications
Understanding Colorectal Cancer • Surgery
Women's Issues • A Parent’s Guide • A Teacher’s Guide
FOR INFORMATION ABOUT BECOMING A MEMBER
OF CCFA, PLEASE CALL
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