Surgery for Crohn’s Disease and

Ulcerative Colitis

About Crohn’s disease and 2ulcerative colitis

When is surgery necessary? 3

Reasons for elective surgery 3

Conditions that require 5immediate surgery

Your health care team 7

Common procedures for 8ulcerative colitis

Common procedures for 17Crohn’s disease

Making the decision to have surgery 21

Preparing for surgery 23

After surgery 24

Dietary recommendations 24

Tools and resources 27

Improving quality of life 28

About CCFA Inside back cover

What’s Inside?

(Disclaimer: Surgery information is up to date atthe time of printing. Due to rapid advances andnew findings, there may be changes to this infor-mation over time. You should always check withyour doctor to get the most current information.This information should not replace the recom-mendations and advice of your doctor.)

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Crohn’s disease and ulcerativecolitis are lifelong illnesses.Treatment with medication isthe first therapeutic option.Eventually, some people living with Crohn’s disease orulcerative colitis may requiresurgery. This brochure re-views possible reasons thatmake surgery necessary, describes the various proce-dures, and helps you to learnwhat to expect.

About Crohn’s disease and ulcerative colitis Crohn’s disease and ulcerativecolitis belong to the samedisease category, inflamma-tory bowel diseases (IBD).

IBD causes chronic inflammation in the gas-trointestinal (GI) tract. Chronic inflammationimpairs the ability of the affected organs tofunction properly, leading to symptoms such asabdominal cramping, diarrhea, rectal bleeding,and fatigue.

While both diseases share many of the samesymptoms, there are some important differences.Ulcerative colitis is limited to the large intestine(colon) and the rectum. Inflammation occursonly on the surface layer of the intestinal lining.It generally starts in the rectum and expands upthe colon in a continuous manner.

Crohn’s disease most commonly affects the endof the small intestine (the ileum) and the begin-ning of the colon, but it can affect any part ofthe GI tract from the mouth to the anus. Crohn’sdisease may also appear in “patches,” affectingsome areas of the GI tract while leaving othersections in between completely untouched.(These are known as “skip” areas). In Crohn’sdisease, the inflammation may extend throughall layers of the intestine, including the areaaround the anal canal (perianal area).

The medications used to treat both ulcerativecolitis and Crohn’s disease are prescribed todecrease intestinal inflammation. While theycannot cure the diseases, they can often bring

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about a state of remission (a period where aperson is symptom free). Remissions can lastfor months or years, depending on the individ-ual. Over time, adjustments in medication doseor type may be needed to maintain remission.

Medication may not adequately control symptomsfor everyone with IBD, and some people withthese conditions develop complications thatneed more aggressive treatment. In these cases,surgery may be recommended or required.

For more information about Crohn’s diseaseand ulcerative colitis, view our brochures atwww.ccfa.org or call our Information ResourceCenter at 888.MY.GUT.PAIN (694.8872).

When is surgerynecessary?About 23 to 45 percent ofpeople with ulcerative colitisand up to 75 percent of peo-ple with Crohn’s disease willeventually require surgery.

Some people with these conditions have theoption to choose surgery, while for others, surgery is an absolute necessity due to compli-cations of their disease.

Reasons for elective surgerySome people with IBD decide to have surgerybecause they can no longer bear the symptomsof their disease or they are no longer respondingto their prescribed medication. The medicationsused to treat Crohn’s disease and ulcerative colitis are not necessarily effective for all patients all the time. Some patients do well ona particular medication for a time, and then, for

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unknown reasons, they stop responding. Somepeople experience many side effects from themedications. Surgery will be considered if a person’s quality of life has been severly impacted despite medical treatment or if sideeffects of the medications are significant.

Colorectal cancerElective surgery may also be recommended forsome people with IBD to eliminate the risk ofcolorectal cancer. Patients with ulcerative colitisand Crohn’s disease have a higher risk for colorectal cancer than the general population.Colorectal cancer rarely occurs in the first eightto ten years after initial diagnosis of IBD. Therisk increases the longer a person lives with thedisease. People whose disease affects most oftheir colon are at the greatest risk for developingcolorectal cancer.

In most cases, colorectal cancer starts as a polyp(a small lump growing from the wall of the intestine). Polyps start out benign but becomecancerous over time. Patients with IBD, however,do not always form precancerous polyps. Instead,abnormal and potentially precancerous tissue(called dysplasia) may lay flat against the wallof the intestine. In addition, abnormal, precan-cerous cells can be present in an area of the intestinal wall that appears normal at the timeof colonoscopy.

People who have had IBD for more than eight to ten years should have surveillance colono-scopies every one to two years (depending onother risk factors, such as family history of colorectal cancer). The standard colonoscopy is usually accompanied by a series of biopsies—small tissue samples taken for microscopic examination. If dysplasia is found (even if it’snot cancerous), surgery to remove the colonand rectum is usually recommended to eliminatethe risk of developing cancer.

Conditions that require immediatesurgeryUlcerative colitis

Sudden, severe ulcerative colitisThis is the main reason for emergency surgeryfor ulcerative colitis. About 15 percent of people with ulcerative colitis have an attackof the disease so severe that medications,even intravenous steroids, cannot controlthe symptoms. Surgery may be necessary ifmedications are unable to bring the attackunder control.

Sudden, severe ulcerative colitis also includesuncontrolled bleeding in the colon (which isquite rare) and toxic megacolon. Toxic mega-colon is caused by severe inflammation thatleads to rapid enlargement of the colon.Symptoms include pain, distention (swelling)of the abdomen, fever, rapid heart rate, con-stipation, and dehydration. This potentiallylife-threatening complication requires imme-diate treatment and surgery.

Perforation of the colonChronic inflammation of the colon may weakenthe wall to such an extent that a hole occurs.This is potentially life threatening becausethe contents of the intestine can spill intothe abdomen and cause a serious infectioncalled peritonitis.

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Crohn’s disease

Intestinal obstruction or blockageChronic inflammation in the intestines cancause the walls of digestive organs to thickenor form scar tissue. This can narrow a sectionof intestine (called a stricture), which maylead to an intestinal blockage. Nausea andvomiting or constipation may be signs of a stricture.

Excessive bleeding in the intestineThis is a rare complication of Crohn’s disease.Surgery is performed only if bleeding cannotbe controlled by other means.

Perforation of the bowelAs with ulcerative colitis, chronic inflammationmay weaken the wall of the intestine to suchan extent that a hole occurs. Occasionally, aportion of the bowel near a stricture can alsoexpand, causing the wall to weaken and ahole to occur.

FistulaInflammation can cause ulcers (sores) to formin the inside wall of the intestines or otherorgans. These ulcers can extend through theentire thickness of the bowel wall and form a tunnel to another part of the intestine, be-tween the intestine and another organ suchas the bladder or vagina, or to the skin sur-face. These are called fistulas. Fistulas canalso form around the anal area, and may causedrainage of mucus or stool from an area ad-jacent to the anus. Repair of this connectionrequires surgery.

AbscessAn abscess is a collection of pus, which candevelop in the abdomen, pelvis, or aroundthe anal area. It can lead to symptoms of severe pain in the abdomen, painful bowelmovements, discharge of pus from the anus,fever, or a lump at the edge of the anus thatis swollen, red, and tender. An abscess requires not only antibiotics, but also surgicaldrainage of the pus cavity to allow for healing.

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Toxic megacolonAs with ulcerative colitis, severe inflamma-tion can lead to toxic megacolon and requireimmediate treatment and surgery.

Your health careteamOnce surgery becomes neces-sary or is decided on as thecourse of treatment, a surgeonwho specializes in performingsurgery on the gastrointesti-nal tract should be consultedto perform the operation.

Your regular gastroenterologist will also play anessential role in your treatment before andafter surgery.

If surgery is elective, spend some time choosinga surgeon and a hospital. In addition to beingboard certified in general surgery, or board cer-tified in colon and rectal surgery, the surgeon

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should have a great deal of experience perform-ing the specific procedure you will undergo. Youcan ask the surgeon about his or her experienceand also ask for information on how to speakwith others who’ve had the same procedure.Some state health departments publish out-come data about certain procedures performedat specific hospitals. Your gastroenterologist or other health care provider can recommendsurgeons, or you can check with the AmericanSociety of Colon & Rectal Surgeons(www.fascrs.org), the American College of Sur-geons (www.facs.org), or CCFA (www.ccfa.org)for more information.

Common proceduresfor ulcerative colitis The standard surgical proce-dure for ulcerative colitis isremoval of the colon and rec-tum, called proctocolectomy.

Because ulcerative colitis affects only the colonand rectum, once these organs are removed,the person is cured. For many years, those whounderwent proctocolectomy were required towear a bag over a small hole in the abdomen tocollect stool. This procedure is called total proc-tocolectomy with end ileostomy. While this pro-cedure is still performed, modifications to theprocedure allow many patients to undergo vari-ations that eliminate the need to wear a perma-nent external bag.

To understand the descriptions of these proce-dures, it is helpful to know the meaning ofthese terms:

Proctocolectomy: Surgical removal of thecolon and rectum.

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Colectomy: Surgical removal of the colon.

Ileum: The lower portion of the small intestine.

Ileostomy: A surgically created hole in theabdomen for the elimination of waste.Ileostomy can be permanent or temporary.

Stoma: A hole in the abdomen created during ileostomy.

Ostomy bag: A small plastic pouch worn overthe stoma to collect stool. An ostomy bag isalso known as a pouching system, collectionpouch, or appliance.

Proctocolectomy with ileal pouch-anal anastomosisProctocolectomy with ileal pouch-anal anasto-mosis (IPAA) is the most commonly performedsurgical procedure for ulcerative colitis. It is anattractive option for many people because iteliminates the need to permanently wear an ostomy bag (pouch, appliance, etc.). The nervesand muscles necessary for continence are pre-served and stool is passed through the anus.

The procedure can be performed in one, two, orthree stages, although it usually is performedin two. In the first surgery, the colon and therectum are removed, but the anus and analsphincter muscles are preserved. The ileum isthen fashioned into a pouch and pulled downand connected to the anus. The pouch may beshaped like a J, S, or W.

Because the newly formed pouch needs time toheal, a temporary ileostomy is often performedto divert stool away from the pouch. In this pro-cedure, a loop of the small intestine is pulledthrough an opening in the abdomen to allowfor the elimination of waste. An ostomy bag isworn continuously during this time, and mustbe emptied several times a day. Issues relatedto the temporary ileostomy are similar to thoseexperienced with a permanent ileostomy (see page 12).

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About 12 weeks after the initial surgery (oncethe pouch has healed), the temporary ileostomyis closed during a second, smaller operation.The small intestine is reconnected and the continuity of the bowel is re-established. Fromthis point on, the internal pouch serves as areservoir for waste, and stool is passed throughthe anus in a bowel movement. An external ostomy bag is no longer required.

This procedure may also be performed in onestage. In this case, the colon and rectum are removed and the pouch is created and joined to the anus without a temporary ileostomy. Dueto an increased risk of infection, the procedureis performed less often than the two-stage procedure.

In some cases, IPAA may be performed in threestages. In the first surgery, the colon is removedand an ileostomy is created. In the second sur-gery, the rectum is removed and the ileum isformed into the pouch, which is connected tothe anus. As with the two-stage procedure, thisis done to allow the pouch time to heal. Abouteight to 12 weeks later, the third surgery is per-formed to close the ileostomy and reattach thesmall intestine to the pouch. The patient canthen begin using the newly created pouch and

Figure 1: Site of ostomy

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pass stool through the anus. A three-step pro-cedure may be recommended for people withulcerative colitis who are in poor physical health,on high doses of steroids, or when emergencysurgery for bleeding or toxic megacolon is necessary.

Total proctocolectomy with endileostomyIn the traditional proctocolectomy procedure,the colon, rectum, and anus are removed, andan end ileostomy is created. In this procedure,the end of the small intestine (ileum) is broughtthrough a hole in the abdominal wall in order to create the stoma, which allows drainage ofintestinal waste out of the body. The stoma,which is about the size of a quarter, will protrudeslightly. It will be pinkish in color and will bemoist and shiny.

After the procedure, an external ostomy bagmust be worn over the stoma at all times to collect waste. The bag is a component of apouching system that also includes a skin barrier. The bag is emptied several times a day.The usual site for an ileostomy is the lower abdomen just below the belt line, to the right of the navel (see Figure 1).

For more information, visit the United OstomyAssociations of America website atwww.uoaa.org.

Living with an ileostomyPeople can live long, active, and productivelives with an ileostomy. In most cases, they canengage in the same activities as before the surgery, including sports, gardening, outdooractivities, water sports, traveling, and work. Aninitial period of adjustment should be expected.Several pouching systems are available tochoose from and it will be necessary to learnhow to use the system, as well as how to carefor the skin surrounding the stoma. There are nospecific dietary restrictions for a person with anileostomy, but it is important to drink plenty of

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fluids to avoid dehydration and loss of elec-trolytes (salts and minerals). It is also helpful toeat foods high in pectin to thicken your stooloutput and control diarrhea. These foods in-clude applesauce, bananas, or peanut butter.

The psychological implications of a change inbody image may be a problem at first. Many peo-ple initially feel self-conscious about wearing anostomy bag. However, the pouch is fairly flat,under clothing, and is not visible. No one needsto know about it unless you decide to tell them.

Many people are concerned about how the sur-gery will impact their sexual activity. For mostpeople, sexual function is not impaired. Somemen may experience erectile dysfunction andsome women may have pain during intercourse,but this usually is only temporary. Body contactduring sex will not loosen the pouch, but thereare some adjustments you’ll need to make toaccommodate the presence of the pouch. Youand your partner are likely to have questionsand concerns. The United Ostomy Associationsof America, Inc. (www.uoaa.org) has informationon a range of topics, including intimacy, sexuality,diet, travel tips, support, and ostomy supplies.

Post-surgical complicationsSome complications may occur after the surgery,including infection from the surgery or at the siteof the stoma. Additionally, the small intestinemay become obstructed from food or from scartissue. If the obstruction is from food, it shouldbe temporary and ease when the food movesthrough the intestines. If no waste material exitsthe stoma for four to six hours, and is accompa-nied by symptoms of cramps and/or nausea,you may have a blockage. A physician or otherhealth care provider should be immediately notified if you experience these symptoms.

Just as people who have had a limb removedsometimes feel as if the limb is still there, somepeople who have their rectum removed still feelas if they need to have a bowel movement. This

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is called phantom rectum. It is normal to feelthis after surgery and does not require anytreatment. It often subsides over time.

Life after surgeryMost people do very well post-surgery, and afterrecovery are able to return to work and normalactivity. An adjustment period of up to one yearshould be expected after surgery. Initially, theremay be up to 12 bowel movements a day. Stoolmay be soft or liquid, and there may be urgencyand leakage of stool. As the pouch gradually increases in size and anal sphincter musclesstrengthen, stools will become thicker and lessfrequent. After several months, most peopleare down to six to eight bowel movements perday. The consistency of the stool varies but ismostly soft, almost putty-like.

While there are no specific dietary restrictions,it’s advisable to chew food thoroughly and avoidfoods that may cause gas, diarrhea, or anal irritation. (see chart on pages 14-15.) It’s alsoimportant to drink plenty of fluids—six to eightglasses a day, preferably between meals.

After the surgery, normal sexual activity can beresumed. In fact, some people find their sex lifeimproves because the pain, inflammation, andother symptoms of ulcerative colitis are gone.Prior to surgery, patients should speak withtheir health care provider about any concerns,such as erectile dysfunction, retrograde ejacu-lation, or decreased fertility.

Potential long-term complicationsThe most common complication of IPAA surgeryis pouchitis. Inflammation of the pouch occursin up to 50 percent of patients, usually withinthe first two years after surgery. Symptoms arediarrhea, crampy abdominal pain, increasedfrequency of stool, fever, dehydration, and jointpain. The condition is treated with an antibioticprescribed by a physician.

Gas Producing Odor Producing

Alcoholic beveragesBeansSoyCabbageCarbonated beveragesCauliflowerCucumbersDairy productsChewing gumMilkNuts OnionsRadishes

AsparagusBaked beansBroccoliCabbageCod liver oilEggsFishGarlicOnionsPeanut butterStrong cheese

Color Changes Odor Control

AsparagusBeetsFood coloringIron pillsLicoriceRed Jell-O®

StrawberriesTomato sauces

ButtermilkCranberry juiceOrange juiceParsleyTomato juiceYogurt

Ostomates Food Reference

Source: United Ostomy Associations of America.

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Increased Stools Stoma Obstructive

Alcoholic beveragesWhole grainsBran cerealsCooked cabbageFresh fruitsLeafy greensMilkPrunesRaisinsRaw vegetablesSpices

Apple peelsRaw cabbageCeleryChinese vegetablesWhole kernel cornCoconutsDried fruitMushroomsNutsOrangesPineapplePopcornSeeds

Constipation Relief Diarrhea Control

CoffeeCooked fruitsCooked vegetablesFresh fruitsFruit juicesWaterAny warm or hot beverage

ApplesauceBananasBoiled ricePeanut butterPectin supplement (fiber)TapiocaToast

Listed below are some general effects thatfoods may have on you after ostomy surgery.Use trial and error to determine your individualtolerance. Do not be afraid to try foods that youlike; start with small amounts.

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Small bowel obstruction is another potential,but less common, complication of IPAA surgery.It may develop due to adhesions from the sur-gery. Bowel obstruction causes crampy abdom-inal pain with nausea and vomiting. In abouttwo-thirds of people who have this complication,it can be managed with bowel rest (not eatingfor a few days) and intravenous fluids during ashort stay in the hospital. The other one-thirdof people will require surgery to remove theblockage.

Other possible complications include pelvic abscess and pouch fistulas, which may requireadditional treatment. Pouch failure, which requires removal of the pouch and conversionto a permanent ileostomy, occurs in a smallpercentage of patients.

Minimally invasive approaches tosurgeryIn recent years, surgeons have developedmethods to perform some of the above surgerieswith minimally invasive techniques. In the tra-ditional open surgical method, a long incisionis made in the abdomen allowing the surgeondirect access to the organs. With minimally invasive surgery—also called laparoscopic sur-gery—small openings are made in the abdomenthrough which specialized instruments are inserted. One of these instruments, called a laparoscope, has a tiny camera at the tip. Theimage from this camera is displayed on a moni-tor, allowing the surgical team to see inside thebody. Instruments for performing the surgeryare inserted through four or more additionalshort incisions.

Minimally invasive surgery for ulcerative colitisgenerally takes longer to perform and the out-comes and possible complications are the sameas with traditional open surgery. However, recovery time in the hospital after the surgeryoften is shorter.

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Common proceduresfor Crohn’s disease Different types of surgicalprocedures may be per-formed for Crohn’s disease,depending on the complica-tion, severity of the illness,and location of the disease in the intestines.

In many cases, surgery is performed to removea diseased portion of the gastrointestinal tract.This surgery may involve removal of a section ofan intestine, or it may mean removing an entireorgan (such as the colon and/or rectum).

Unlike ulcerative colitis, Crohn’s disease cannotbe cured with surgery, except in some instanceswhere only the colon, rectum, and anus areaffected. If the diseased portion of the intestineis removed, the inflammation can reappear adjacent to the site of the surgery, even if thatpart of the intestine was normal prior to thesurgery. The primary goals of surgery for Crohn’sdisease are to conserve as much bowel as pos-sible, alleviate complications, and to help thepatient achieve the best possible quality of life.

Small bowel diseaseWhen Crohn’s disease affects the small intestine,areas of diseased bowel may alternate with areasof normal bowel. The areas of active diseasemay narrow, forming strictures, which can blockthe passage of digested food. The sections ofnormal bowel compensate by pushing againstthis strictured area, causing severe crampy pain.There are two surgical procedures for strictures:strictureplasty and small bowel resection.

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StrictureplastyIn a strictureplasty, the narrowed area of intestineis widened without removing any portion of thesmall intestine. The surgeon makes a lengthwiseincision along the narrowed area and thensews it up crosswise. This shortens and widensthe segment of bowel. Several strictures maybe treated in one surgical procedure. Stricture-plasty is most effective in the lower sections ofthe small intestine (ileum and jejunum), and isless effective in the upper section (duodenum).

Performing strictureplasty avoids the need toremove a section of the small intestine, whichcan sometimes lead to a condition called shortbowel syndrome (described on page 19). Stric-tureplasty is generally safe and effective, butabout half of the people who have this proce-dure will require subsequent surgery.

Small bowel resectionStrictures may also be treated with a smallbowel resection. In this procedure, a segmentof the small intestine is removed and the twoends of healthy intestine are joined together(anastomosis). Small bowel resection may alsobe required if a hole develops in the wall of thesmall intestine.

A bowel resection may offer patients many yearsof symptom relief. However, about 50 percentof adult patients will have a recurrence ofsymptomatic Crohn’s disease within five yearsafter having a resection. The disease usually recurs at the site of the anastomosis. RecurrentCrohn’s disease often can be successfullytreated with medications, such as immunomod-ulators or biologics. However, about one-half of people with recurrent symptoms will need a second surgery.

Another possible complication of bowel resectionis a condition called short bowel syndrome. Thesmall intestine serves the essential function of absorbing nutrients from digested food intothe bloodstream, where they travel to nourish

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the body. If too much of the small intestine isremoved, nutritional deficiencies may occur.

Colonic diseaseSome people have severe Crohn’s disease thataffects the colon and/or rectum. Surgery maybe needed to remove the entire colon (colectomy),the colon and rectum (proctocolectomy), or aportion of the colon (resection).

Large bowel resectionIn a large bowel resection, the diseased portionof the colon is removed and the healthy intestineon either side of the removed area is sewn to-gether. This is similar to a small bowel resection(described above). As with that procedure,Crohn’s disease recurs about 50 percent of thetime, usually at the site where the intestine was connected.

Colectomy and proctocolectomyIf the colon must be removed entirely but therectum is unaffected by the disease, a colectomywill be performed. Once the colon is taken out,the ileum will be joined to the rectum. This al-lows the person to continue to pass stool throughthe anus.

If the rectum is affected and must be removedalong with the colon, the surgeon will performa proctocolectomy with end ileostomy. This procedure is the same as the one described onpage 9 for people with ulcerative colitis. Unlikeulcerative colitis patients, Crohn’s disease pa-tients generally do not undergo the variation ofthe procedure that eliminates the need to wearan external ostomy bag (proctocolectomy withileal pouch-anal anastosis). This is because thedisease frequently recurs in the internal pouch,making pouch excision more common.

Perianal disease and intestinal fistulasAbout 35 to 50 percent of adults with Crohn’sdisease will develop a fistula (see page 6) dur-ing their lifetime. A fistula usually starts as an

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infection. A collection of pus, intestinal bacteria,and fluids penetrates through the wall of an in-testinal organ, and a channel forms to anotherloop of intestine or organ (bladder, vagina, orskin). Because they contain infected material,fistulas may initially be treated with antibiotics.Surgery for a fistula may be necessary if itssymptoms do not respond to medications. Insome cases, emergency surgery is necessary to prevent the spread of infection.

An anal fistula is a tunnel that forms betweenthe inside of the anus and the skin surroundingthe anus. In a surgical procedure called fistulo-tomy, the goal is to cure the fistula withoutdamaging the anal sphincter muscles, whichare necessary for fecal continence. For thesefistulas, the recurrence rate is fairly low followingsurgery and there is little impact on continence.Complications from this procedure are rare. If afistulotomy cannot be performed, other surgicaltechniques may be required.

Women with Crohn’s disease can develop a fistula between the rectum and vagina, whichmay be difficult to treat. The procedure that is performed will depend on the individual circumstances.

Minimally invasive approaches to surgeryMany of the surgical procedures described abovecan be performed using a minimally invasivetechnique (described on page 16). The advan-tages of a minimally invasive approach forCrohn’s disease surgery include less pain afterthe operation, less chance of infection, and ashorter hospital stay. The ideal candidates forlaparoscopic surgery are nonobese patientswho have had no prior operations, are undergo-ing elective procedures, and have few, if any,other health problems. During emergency surgery for life-threatening complications, it is not always possible to perform surgery withminimally invasive techniques.

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Intestinal transplantIn a small number of people with severe Crohn’sdisease, most of the small intestine must be re-moved. Without this organ, the body is no longerable to absorb nutrients from digested food,and the person must receive nutrition throughintravenous feeding. Over the long term, intra-venous feeding can have life-threatening complications, such as infection or liver failure.

People with these complications are potentialcandidates for intestinal transplant. In this rareprocedure, the small intestine from a deceaseddonor is transplanted into a person with Crohn’sdisease. In some cases, just the small intestineis transplanted, while in other cases the liverand possibly other digestive organs are alsotransplanted.

The success rate with this procedure has beenimproving over the years, but it remains difficultand risky, and is generally a last resort. There is a high risk for death during or following thesurgery. There also is a chance that the bodywill reject the transplanted organ. People whohave organ transplants must take medication forthe rest of their lives to prevent organ rejection.

Making the decisionto have surgerySome people with IBD sufferneedlessly because they tryto avoid surgery.

If medical therapy no longer keeps the diseaseunder control, surgery should be seriously considered. Surgery is a treatment option, thegoals of which are to relieve ongoing symp-toms, reduce the risk of cancer, and improvequality of life.

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The decision to undergo surgery will be a col-laboration among yourself, your health careproviders (gastroenterologist, surgeon, nursepractitioner, and others), and close familymembers. When parents are considering surgeryfor a child with IBD, it will be important to decidehow and when to involve them in the discussion.Involving and educating children will help to reduce their concern and possible anxietyabout surgery.

When making the decision to have surgery, it’shelpful to understand why you may need surgery,to educate yourself about the different surgicaloptions, and to ask questions of your healthcare team. You also may want to speak with pa-tients who have undergone the procedure youare considering.

All surgery carries some risks. Some are commonto all surgeries and some are specific to the individual procedures. Risks with any surgeryinclude bleeding, infection, and issues associ-ated with general anesthesia. These can gener-ally be managed by the surgical team if theyoccur. Ask your surgeon to explain all of the relevant risks associated with the procedure asthey pertain to you and your individual condition.

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Preparing for surgeryIn some cases, surgery willbe an emergency procedureand there will be little time to prepare.

However, if possible, it is important to prepareyourself for the surgery.

Try to be in the best possible physical andmental shape prior to the procedure. Nutri-tion is extremely important because whenyou are well nourished, your immune systemis strong, which lessens the likelihood ofsurgical complications such as infection.

Prepare yourself mentally for surgery and recovery. If the procedure will result in an ostomy, there will be much to learn. It’s bestto start preparing in advance by consultingwith a wound-ostomy care nurse (a healthcare provider who specializes in ostomies).

Build a support team of family, friends, andothers who can assist you before and aftersurgery with transportation, meal preparation,and other daily tasks.

Try to resolve work, family, and school obliga-tions in advance. Speak with your employerabout taking time off from work or ask aboutthe company’s Family Medical Leave policy.Check into temporary disability, social security, or other appropriate programs. Forchildren, try to schedule procedures whenschool is not in session. If this is not possible,secure a tutor for your child and make otherschool accommodations.

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After surgeryYou will receive specific in-structions for postoperativecare after surgery.

You may be given drugs, such as pain medicationor antibiotics, and there will likely be specificinstructions regarding diet, physical activity,and other lifestyle issues. These may applytemporarily or permanently.

Because of the possibility for complicationsfrom surgery or recurrence of disease (forCrohn’s disease patients), it will be necessaryto continue to follow up with your gastroen-terologist and your surgeon after recoveringfrom surgery.

Several organizations, including CCFA, offersupport and advice for people undergoing surgery for IBD. You can visit CCFA’s website(www.ccfa.org), call the Information ResourceCenter at 888.MY.GUT.PAIN (888.694.8872), orjoin a support group. The American Society ofColon & Rectal Surgeons provides informationon colorectal conditions, treatment and screen-ing information, and help locating surgeons inyour area (www.fascrs.org). The United Ostomy Associations of America, Inc. (www.uoaa.org)has patient guides and support groups to help provide information to patients before andafter surgery.

Dietary recommendationsDepending on the type of surgery you have, youmay need to make some adjustments to yourdiet. These may be temporary or permanent.Each organ of the digestive tract (from the mouthto the anus) has a highly specialized function inthe breakdown and absorption of essential nu-trients from food, and the elimination of wastematerial. Many people who have undergone

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surgery for IBD have had a portion of their diges-tive tract removed. The exact nature of the sur-gery, the health of the remaining bowel, andthe overall health of the patient may have animpact on the need for dietary modificationsfollowing surgery.

In general, it is important for everyone to havea well-balanced diet that provides necessary vitamins and minerals, and includes foods fromall the major groups (grains, vegetables, fruit,milk, and meat and beans). Following ostomysurgery, a low-fiber diet may be recommendedfor the first six to eight weeks. The United OstomyAssociations of America (UOAA—www.uoaa.org)has other specific recommendations for peoplewho have undergone ostomy surgery (colostomy,ileostomy, or IPAA) (see pages 14-15).

Because some surgeries impact the ability of thebody to properly absorb nutrients from food,many people need to take nutritional supple-ments post-surgery. Your physician or dietitiancan make recommendations for specific supple-ments, or a multivitamin may be taken.

For patients who have undergone IPAA surgery,the UOAA offers the following tips:

Eat regularly—don’t skip meals. Empty bowelsproduce gas.

When adding new foods to your diet, try a little bit with other foods you know will beeasy to digest.

Small, frequent meals are best—always chew thoroughly.

Rice, potatoes, or pasta once daily may reduce bowel frequency and irritation.

High potassium foods will help offset the side effects of diarrhea.

Limit foods containing simple sugars—theyaggravate diarrhea.

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The following are potential anal irritants:

Coconut

Dried fruits (raisins, figs)

Foods with seeds or nuts

Raw fruits (oranges, apples)

Raw vegetables (celery, corn, coleslaw)

Spicy foods

In addition to eating the right foods, be sure toalso drink plenty of water, as well as beveragessuch as milk and juice. Limit your amount ofcarbonated and caffeinated liquids. Try to drinkeight to ten glasses of liquid each day, but notwith meals. Review the ostomates food refer-ence chart on pages 14-15 for more information.

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Tools and resourcesYou and your doctor shareone important goal: to getyour IBD under control andkeep it that way. To help youdo that, we have provided a surgery log.

To use the log, fill in information about yoursurgery under each category. You may want toleave blank lines under each surgery to enableyou to record “pre-” and “post-surgery” recom-mendations or instructions.

We suggest you keep it somewhere handy soyou can access it easily. The tracker also servesas a convenient reference for when you meetwith or speak to your health care providers.

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Improving quality of lifeThe Crohn’s & Colitis Founda-tion of America has estab-lished a range of educationalbrochures, fact sheets, and programs designed to increase knowledge aboutthese digestive diseases.

Living with Crohn’s or colitis can be difficult,but the right resources and support can makeday-to-day living less challenging. That’s whyCCFA has also developed a comprehensive freeonline community (www.ccfacommunity.org) to provide the support individuals need in man-aging their condition.

We recognize the importance of distributing un-biased, accurate, and authoritative informationin order to provide education of the finest quality.One avenue used to accomplish this is the Information Resource Center (IRC). Through atoll-free number (888-MY-GUT-PAIN or888.694.8872), e-mail (info@ccfa.org), or livechat on our website (www.ccfa.org), master’sdegree-level health education professionals answer questions and direct people to resourcesthat could improve their quality of life. The IRC has truly become an important lifeline forpatients, families, friends, health care profes-sionals, and the media.

About CCFAEstablished in 1967, the Crohn’s & Colitis Foun-dation of America (CCFA) is the largest nationalnonprofit organization dedicated to finding thecure for IBD. Our mission is to fund research; pro-vide educational resources for patients andtheir families, medical professionals, and thepublic; and to furnish supportive services forpeople with Crohn’s disease or ulcerative 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 ad-vancing legislation that will improve the lives of patients nationwide.

Contact CCFA to get the latest information ondisease management, research findings, tolearn more about our advocacy efforts, or tojoin us and become a member. When you be-come a member, you help support vital researchthat will one day lead to a cure.

We can help! Contact us at:

888.MY.GUT.PAIN(888.694.8872) info@ccfa.orgwww.ccfa.org

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

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

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

This brochure is supported by an unrestricted educationalgrant from ConvaTec.