Ileostomy Guide

8/18/2019 Ileostomy Guide

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A MessageTo You...

Ileostomy surgery is a lifesavingsurgery that enables a person toenjoy a full rangeof activities, includingtraveling, sports, family lifeandwork. Thousands of peopleannually undergo ostomy surgery for various

reasons and return to a healthy, functioninglifestyle.

TheUnited Ostomy Associations of America (UOAA) is a volunteer organization dedicated to helpingthosewho haveor will haveostomy or

other diversionary surgery by providingone-on-onesupport, local support groupmeetings, conferences, and educational material through its web site,

printed material and ThePhoenix magazine.

You havemany peers in theUOAA who areready to answer your questions, providesupport and reassureyou that you can havea full,

productivelifeafter ostomy surgery.Weinviteyou to join us as wefulfill our mission in helpingothers.

FromtheUnited Ostomy Associations of America


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ILEOSTOMY GUIDE

Reviewed by:

Nancy Gutman, RN, CWOCN

2011

This guidebook is available for free, in electronic form, from the United Ostomy Associations of America(UOAA). It was originally produced, copyrighted and sold by the United Ostomy Association (UOA), thenational US ostomy organization from 1962 to 2005, which released its copyrights on this material.

UOAA may be contacted at:www.ostomy.org • [email protected] • 800-826-0826


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4

CONTENTS

INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

FACTS ABOUT ILEOSTOMIES . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

NORMAL DIGESTIVE SYSTEM. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .8S ma ll intestine. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Large intestine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

TYPES OF SMALL BOWEL DIVERSION . . . . . . . . . . . . . . . . . . . . . . . . . . . 9Ileoa nal res ervoir (J -Po uch) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

B rooke ileos tomy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Co ntinent ileos tomy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

MANAGEMENT FOR BROOKE ILEOSTOMIES . . . . . . . . . . . . . . . . . . . . 10Choos ing a pouching s ystem . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

P ouches . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11Meas uring for a p roper fit . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Belts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Cha nging the pouching s ystem . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

Fac tors tha t influence pouc hing s ystem se a l . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

Emptying the pouc h . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

Osto my s upplies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

HELPFUL HINTS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13P rotecting the s kin around the s toma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

S pots of blood on the s toma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Removing ha ir unde r the pouch . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14Flatulence (ga s) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Odor . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Medications/a bs orption . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

ILEOSTOMY COMPLICATIONS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15S evere skin prob lems . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Obs truction/B loc kage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Diarrhea. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Elec trolyte ba lanc e . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

P hantom rectum . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

S hort bow el syndrome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17Medical emergenc ies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

Hos pitaliza tion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17

LIVING WITH AN ILEOSTOMY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18Telling others . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Clothing a nd a ppearance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Eating a nd d ige stion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Returning to wo rk . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

Intima cy a nd s exuality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20


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CONTENTS Cont.

LIVING WITH AN ILEOSTOMY cont.P a rticipating in sports . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

Ba thing a nd s wimming . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

Tra vel . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

FOR PARENTS OF CHILDREN WITH ILEOSTOMIES . . . . . . . . . . . . . . . . 23P syc hosoc ial iss ues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23

Manag ement iss ues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

Everyda y living . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24

RESOURCES AVAILABLE . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26United Ostom y Ass oc ia tions of America . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

Internationa l Ostomy Ass oc ia tion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

Wound Os tomy C ontinence Nurse s S oc iety . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

Age ncies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26

Medicare, Medica id and S oc ia l Sec urity in the United S tates . . . . . . . . . . . . . . . . . 26

GLOSSARY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27


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INTRODUCTION

An ileostomy is a life-saving surgery that enables individuals to enjoy a full range

of activities including traveling, sports, family life and work, even though they have a

stoma a nd w ear a pouching sys tem.

Ileostomy surgery is performed for many different diseases and conditions. Some

of the indications for ileostomy surgery are ulcerative colitis, Crohn’s disease, familial

polyposis and complications of cancer.

There is no o ne w a y to ta ke c a re o f an ileos tomy. J ust a s ileos tomies differ, s o

does how to take ca re of them. This guide boo k gives you s ugges tions and idea s for

ma na ging your ileos tomy. Disc uss the ide a s w ith a phys ician or a Wound Os tomy

Continence Nurse (WOCN), hereinafter referred to as ostomy nurse, and adapt them

to your situation. Give new things a fair trial, but do not insist on them if they fail to

make you more comfortable. What is good for someone else may not be good for

you. The s oo ner you lea rn to ta ke c a re o f your ileos tomy, the b etter you a re likely tofeel about yourself. In time, you will gain confidence in your self-care.

There a re ma ny w a ys to g a in a greater understa nding of your life w ith a n ileos tomy.

Your physician a nd os tomy nurse a re important so urce s of informa tion a nd suppo rt. In

a ddition, muc h information is a va ila ble at va rious Web s ites (see Re sources ).

Ta king pa rt in a n os tomy s upport group a llow s you to s hare your feelings a nd a s k

questions as you make progress with your adjustment. It also allows you to share

your successful adjustment with others who may need the benefit of your experience.

Most ostomy visitor programs are sponsored by local support groups of the United

Ostomy Associations of America (UOAA). If you would like a visitor or to take part in asuppo rt g roup, a sk your physician, o sto my nurse , or other nurse s to ma ke a referra l.

You or your family may also locate your local UOAA support group by calling

800-826-0826 or vis iting w w w.os tomy.org.


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FACTS ABOUT ILEOSTOMIES

An ileos tomy is a surgica lly c rea ted ope ning in the abd ominal wa ll. The end of the

ileum (the lowest portion of the small intestine) is brought through the abdominal wall

to form a s toma , usua lly on the lowe r right s ide of the a bd omen. When you loo k a t

your stoma, you are actually looking at the lining (or mucosa) of the intestine, which is

like the lining of your cheek. Generally, the colon and rectum are removed and normalco lon a nd recta l functions a re no long er pres ent.

The s toma w ill a ppea r pink to red a nd w ill be moist a nd shiny. It w ill red uce in s ize

over a s hort period of time a fter surgery. The s ha pe w ill be round to ova l a nd ma y

protrude or be flush with the skin.

An ileostomy may be permanent or temporary depending upon the reason

for surge ry. The entire c olon, rectum, a nd a nus a re removed or bypa s se d w ith a

permanent ileostomy. With a temporary ileostomy, all or part of the colon is removed,

but part or all of the rectum is left intact.

The ma jor function of the s ma ll intes tine is to a bs orb the bod y’s nutrients a nd

w a ter. Enzymes relea s ed into the s ma ll intestine b rea k food into s ma ll pa rticles s o tha t

vitally needed proteins, carbohydrates, fats, vitamins and minerals can be absorbed.

Thes e enzyme s w ill a ls o b e pres ent in ileos tomy d isc ha rge , a nd they c a n ca use s kin

breakdow n. This is w hy the skin a round a n ileos tomy must a lw a ys be protected (s ee

S kin P rotection).

After removal of the colon and rectum, digestive contents pass out of the body

through the s toma a nd a re c ollec ted in a n individua lly fitted d ra ina ble pouch, w hich

is w orn a t a ll times . The c ons is tenc y of the ileos tomy output w ill be liq uid to pa s ty,

depending on one’s d iet, medica tions and other factors. B eca use the output isconstant, the pouch will need to be emptied 5-8 times a day.


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NORMAL DIGESTIVE SYSTEM

Although an ileostomy

crea tes an important c hange for

a patient, the body’s chemistry

a nd d ige stive function a re not

significantly altered by it. A

de sc ription o f the la rge a ndsmall intestine may help you

understand the chang es to your

body.

Small Intestine• Approxima tely 20 feet long ,

consisting of:

• Duod enum (first pa rt) 10-12

inches long beginning at

the outlet of the stomach.• J ejunum (s ec ond pa rt),

a bo ut 8-9 feet long .

• Ileum (third pa rt), a bo ut 12 feet long c onnec ting to the la rge intes tine a t the

cecum.

• Food nutrients a re d iges ted a nd a bs orbed in the sma ll intestine a s food is moved

through by peristalsis.

Large Intestine• Approxima tely 5-7 feet long , c ons isting o f:

• Ce cum – c onta ins the ileoc ec a l va lve, w hich prevents reflux into the ileum;

contents are highly acidic liquid• Asc end ing c olon – co ntents a re a cidic liq uid

• Tra nsverse co lon – co ntents a re less a cidic liq uid

• Des ce nding/sigmoid co lon – co ntents be co me more formed

• Rectum – formed s tool

• The prima ry functions of the large intestine are a bs orption o f wa ter and

electrolytes, transport of stool by peristalsis, and storage of digestive waste until

it is eliminated from the body.

8


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TYPES OF SMALL BOWEL DIVERSIONS

There a re three ma jor types of s ma ll bo w el diversions (w hen the entire c olon is

remo ved). The surgeo n and the pa tient should d etermine the mos t appropria te surgery

for the pa tient. S ome of the s elec tion c riteria for the type of d iversion a re the d ise a s e

process, age, general health and the preference of the patient.

1. Ileoanal Reservoir (J-Pouch)

Indications: Discharge: Management:

• Ulcerative Co litis • S oft, formed stool • Na tura l evac uation;

• Familia l P olypos is • 6-8 per da y • P eri-ana l skin protec tion

• Ca ncer co mplica tions

The mo st co mmon surg ica l va ria tion is the ileoa na l

reservoir (pelvic pouch) which is an internal pouch made

of the ileum and pla ced in the pelvis. Other nam es for

pelvic pouc hes include J -pouch a nd S -pouch depend ing

on the s urg ica l proc ed ure. The s phinc ter musc lesurrounding the a nal opening mus t be intac t to keep the

pouc h from leaking . The cons is tenc y of the output of

the pelvic po uch depends on diet and ma y be a ided by

medications. For additional information on the ileoanal

reservoir or j-pouch, please see the Ileoanal Resvervoir

Guidebook.

2. Brooke Ileostomy

Indications: Discharge: Management:• Ulce ra tive Co litis • Liq uid or pa ste • S kin protec tion;

• Crohn’s Disea se co nsistency • Open-end, drainab le pouch

• Familia l P olyposis • Unpredictable drainag e

• C anc er complica tions • C ontains residual diges tive enzymes

The Brooke ileos tomy is the sec ond mo st co mmon

type of ileo s tom y s urgery. The terminal ileum is pulled

through the abdominal wall and a segment is turned

back and sutured to the skin, leaving a smooth, rounded,

everted ileum a s the end of the ileos tomy.

The s toma is usua lly plac ed in the righ t low er

q uad rant w henever poss ible a nd loca ted on a fla t surface

suffic iently free from irreg ula rities. The feca l output is not

controlled and will require wearing a collection pouch.

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Ileoanal reservoir(Pull-through)

Ileoanal Reservoiror Pelvic Pouch

Intestine

Standard or Brooke Ileostomy


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3. Continent Ileostomy (Abdominal Pouch)

Indications: Discharge: Management:

• Ulce ra tive Co litis • Liq uid or pa ste • Dra in period ica lly

• Familia l P olypos is co nsistenc y w ith intubation tube

• Ca ncer complica tions • Stoma covering

A continent ileostomy is a surgical variation of the

sta nda rd ileos tomy. P atients do not need to wea r a n

externa l pouch. Created w hen a portion o f the ileum

is loo ped ba ck on itself so tha t a res ervoir is formed

inside the a bd omen. A nipple va lve is co nstructed

w ith pa rt of the ileum. The o sto ma te inse rts a ca theter

a few times e ac h da y to drain contents from the

reservoir. For additional information, please see the

Ileoanal Reservoir Guidebook.

MANAGEMENT FOR BROOKE ILEOSTOMIES

Lea rning to ca re for your ileos tomy ma y s eem ha rd a t first, b ut with pra ctice a nd

your ow n a da ptations, the e ntire proces s w ill bec ome s ec ond na ture, just like s ha ving

or ba thing.

A suc ce s sful pouching s ystem sho uld provide the follow ing:

• S ec urity with a g oo d leakproof s ea l (la sting for 3-7 da ys )

• Odor resistant pouch

• S kin protec tion• B e incons picuous a nd unnoticea ble

• Easy to a pply and to remove

Choosing a pouching system

Many fa cto rs ca n influence se lec tion. The length of the s toma , a bd omina l firmnes s

and contours, the loc ation of the stoma , sc ars a nd folds in the abd ominal area and

your height a nd w eight a ll must b e c ons ide red in de termining w ha t is bes t for you.

Special adaptations may have to be made for stomas located near the hipbone,

waistline, groin, scars, etc. Custom-made products to fit unusual situations can beobta ined from s ome c ompa nies.

The be s t pouc hing s ys tem for you is a very persona l ma tter. It is important that

you are properly fitted, just as for eyeglasses. When you are selecting your first

pouching s ystem, it is bes t to co nsult with a n os tomy nurse or someone w ho ha s

experience in this area.

Continent Ileostomyor Abdominal Pouch

Stoma


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MANAGEMENT FOR BROOKE ILEOSTOMIES cont.

Pouches

A pouching sy stem is used to c ollec t ileos tomy o utput. There a re tw o m a in types

of systems available: one-piece pouches with attached skin barrier and two-piece

sys tems c ompo se d o f a s kin ba rrier a nd d eta cha ble pouch. The ba rrier or bas e of thepouch may require a hole to be cut for the stoma or may be sized and pre-cut.

Pouches for one- and two-piece systems are drained through an opening in the

bottom. P ouches a re ma de from od or resistant materials a nd va ry in cos t. Po uches

a re either tra nspa rent or opa q ue a nd c ome in different lengths .

Measuring for a proper fit

Pouching systems come with either a pre-cut opening or can be cut to fit the

stoma size and shape. Immediately after surgery the stoma may be swollen fora pproxima tely 6 to 8 w eeks. During this pos t operative period the s toma sho uld

be mea sured a bout once a we ek. A mea suring c ard ma y be included in boxes of

pouches or you may c rea te your ow n templa te w hich ma tches your stoma sha pe. The

ope ning on the skin ba rrier or fla nge s hould be no more than 1/8 inch la rger than the

stoma size.

Belts

Wea ring a be lt is a very individua l ma tter. S ome perso ns w ho

have ileostomies wear a belt because it makes them feel morese cure or it gives s upport to the po uching s yste m. Others find

a belt cumberso me. If you choos e to w ea r a belt, a djust it so

that you ca n get tw o finger widths betw een the belt a nd your waist in order to avoid a

de ep g roo ve or cut in the s kin a round the sto ma . This co uld res ult in s erious da ma ge

to the stoma and cause pressure ulcers on the surrounding skin. Belts should be worn

so they do not ride above or below the level of the belt tabs on the pouching system.

People who are in a wheelchair may need a special belt. Manufacturers carry special

belts or you can make one yourself.

One-piece drainablepouch w/skin barrier

Two-piecedrainable pouch

Flange for two-

piece system

Adjustable belt

Drainablepouch clip


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Changing the pouching system

There ma y b e a de creas e in bow el ac tivity a t ce rta in times in the d a y. During

these times w ill be the ea siest to c ha nge the po uching s yste m. You ma y find tha t

ea rly morning before you ea t or drink is bes t. Or allow a t lea st one ho ur a fter a mea l

w hen peris talsis is slowe d. After surge ry ileos tomy o utput ma y b e thin a nd w a tery. As

the discharge thickens, you will be in a better position to determine the best time forcha nging your system.

Factors that influence pouching system seal

There a re s everal fac tors tha t ca n influence ho w long the pouch w ill s tay se a led .

Thes e include w ea ther, s kin c ond ition, s ca rs , w eight c hang es , d iet, a ctivity, b od y

shape near the stoma and the nature of the ileostomy output.

• P erspira tion d uring the s ummer months in w a rm humid clima tes w ill sho rten the

number of days you ca n wea r the pouching s ystem. B ody hea t, in ad dition to

outside temperature, will cause skin barriers to loosen more quickly than usual.• Moist, o ily s kin ma y reduce w ea ring time.

• Weight cha nge s w ill also a ffec t your we a ring time. Weight ga ined a fter ileos tomy

s urge ry cha nges a bd omina l co ntours. You ma y need a n entirely different s yste m.

Weight los s ma y a ls o ha ve the sa me effect.

• Diet ma y influence your sea l. Foods that ca use w atery disc harge may prevent a

long lasting seal.

• P hysica l a ctivities ma y have s ome influence o n we a ring time. S w imming, very

strenuous sports or work that causes perspiration may shorten wearing time.

Emptying the Pouch

Emptying the pouch w hen it is 1/3 full will prevent bulging a nd poss ibility o f a lea k.

Also co nsider your co mfort a nd c onvenience .

To empty, follow thes e s teps :

1. S it on the toilet

2. P la ce a sma ll s trip of toilet pa per in the toilet to minimize s pla s hing

3. Hold the bottom of the pouch up and o pen the pouch at the ta il

4. S low ly unroll the ta il into the to ilet

5. G ently empty co ntents

6. Clean the outside a nd inside of the pouch ta il w ith toilet pa per7. Close the pouch at the ta il

8. S ome pouc hing s yste ms ha ve an integrated closure (follow ma nufa cturer’s

suggestions)

Ostomy Supplies

For the s a ke o f co nvenience , keep a ll your eq uipment tog ether on a she lf, in a

drawer or in a small box away from hot or cold temperatures.


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MANAGEMENT FOR BROOKE ILEOSTOMIES cont.

It is a good idea to order supplies several weeks before you expect to run out,

thus allowing enough time for delivery. It is best to avoid stockpiling of supplies

bec aus e they may be influenced b y cha nges in temperatures. S upplies do not need to

be s terile. The s toma a nd s urround ing s kin a re no t ste rile a nd req uire only cleanlines s .

To o rde r a dd itiona l pouches , w a fers a nd o ther os tomy products , you w ill needthe manufacturer’s name and product numbers. Supplies may be ordered from

a ma il order compa ny or from a med ica l supply or pha rma cy in your tow n. For

informa tion a nd help in ordering, yo u may co ntac t a loc a l os tomy nurse , the prod uct

ma nufa cturer, telephone direc tory busines s pa ge s or the internet (s ea rch w ords:

ostomy supplies).

HELPFUL HINTS

Protecting the skin around the stoma

Ileos tomy output ca n be irrita ting to the s kin a round the s toma . This s kin a rea

should a ppear the sa me a s a nywhere else on the ab domen. Us e the follow ing

techniques to help keep your skin healthy.

• Us e the right s ize a nd type o f pouch a nd s kin ba rrier opening. An opening tha t

is too sma ll ca n cut or injure the s toma a nd ma y ca use it to sw ell. An opening

that is too large exposes the skin to possible irritation. In both cases, change the

pouch or skin ba rrier and repla ce w ith one that is properly fitted. S ee the s ec tion

in this booklet on measuring for a proper fit.

• Itching or burning a re s igns that the pouching s ystem s hould be c hang ed.Cha nge the pouc h reg ula rly to a void lea ka ge a nd s kin irritation. It ma y a lso

indica te tha t you w ould bene fit from a co nvex ba rrier to prevent stoo l from

lea king underneath

• Remove the pouc h or skin ba rrier by g ently pushing your skin from the pouch or

ba rrier ra ther than pulling it a w a y from the skin.

• Clean the skin surfac e a round the stoma with wa ter. A mild soa p ma y be used,

but rinse tho roug hly. Dry w ell be fore a pplying the s kin ba rrier or pouc h.

• Wa tch for s ens itivities a nd a llergies to a dhes ive, s kin ba rrier, pa ste, tap e o rpouch ma teria l. They c a n develop w eeks, months or even years a fter use o f a

prod uct since the bod y ca n bec ome g ra dua lly se nsitized . You ca n test d ifferent

products to see if your skin will react to them.

Spots of blood on the stoma

S pots of blood are no ca use for alarm. Cleaning a round the stoma a s you cha nge

the pouc h or skin ba rrier may ca use slight b leed ing. The b loo d vess els in the tiss ues


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of the sto ma a re very delica te a t the surfa ce a nd a re ea sily disturbed . The bleeding

w ill usua lly s top a s ea sily a s it sta rted.

Removing hair under the pouch

Exces s ive ha ir around the s toma a rea ca n interfere w ith the skin ba rrier and ma ybe pa inful w hen remo ving . Trimming ha ir with sc iss ors is helpful. A straight ra zor

should not be used to shave this area, if you must use a razor an electric is the best

choice.

Flatulence (Gas)

Immediately after surgery, it may seem that you have excessive gas almost all

the time. Most a bd omina l surge ry is follow ed by this uncomfortab le, emb a rra s sing,

yet harmless symptom. As the tissue swelling goes down, gas will occur less often.

Certain foods may cause intestinal gas: eggs, cabbage, onions, fish, baked beans,milk, che es e a nd a lco hol.

Eating reg ula rly w ill help prevent exces sive ga s. S kipping mea ls to a void ga s or

discharge is unwise because your small intestine will be more active and more gas

and watery discharge might result. Some people find it best to eat a lesser amount of

food 4-5 times a day.

Odor

Many things , s uch a s food s, normal ba cteria l a ction in your intestine, illnes s,different medicines and vitamins can cause odor. Some people with ileostomies have

more trouble with odors than others. Individual experimentation is the only solution

to this prob lem. The od or of ilea l co ntents is not the s a me a s that o f a no rma l s tool

bec a use the ba cteria that c a use food brea kdow n (a nd o dor) in the co lon a re not

present in the small intestine. Here are some hints for odor control:

• Use a n odor resistant pouch.

• Chec k to s ee tha t the skin ba rrier is se curely se a led to the s kin.

• Empty the pouch freq uently.

• P la ce s pec ia l de od orant liq uids a nd/or ta blets in the pouch.

• Ora l prepa ra tions a re a vaila ble. Chec k w ith your physicia n or ostom y nurse

ab out the s uitab ility of these products a nd recommended dos a ge. Amongthos e tha t ma ny ha ve found e ffec tive a re c hlorophyll ta blets, Devrom® (bismuth

subg a llate), a nd bismuth s ubca rbona te.

• Air deod orizers a re a vaila ble that effectively c ontrol odo r when emptying the

pouch.

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15

HELPFUL HINTS cont.

Medications/Absorption

Medication in the form of coated tablets or time release capsules may come out

w hole in the pouc h a nd b e of no bene fit a t a ll. Disc uss this w ith your hea lthca re

provider or pha rmac is t if this o ccurs. There may b e a lterna tive med ica tions tha t youca n use to a void this prob lem. Liq uid or liq uid ge l med ica tions provide fas ter and

more effective a bs orption.

ILEOSTOMY COMPLICATIONS

Severe Skin Problems

La rge a rea s of s kin that a re redde ned, s ore a nd w eeping (a lw a ys w et) w ill prevent

a go od se a l around the s toma . It is therefore importa nt to treat minor irritations w henthey first oc cur. If you ha ve a la rge irrita ted a rea , c onta ct your physician o r ostomy

nurs e. They ma y pres cribe topica l med ica tion s uch a s Mycos ta tin® pow der or

Kenalog ® s pra y.

For de ep press ure ulce rs ca used by a very tight b elt, loo se n or remove the belt

a nd ca ll your physician o r ostomy nurs e immedia tely, trea tment is need ed .

Obstruction/Blockage

There a re o cc a sions w hen the ileos tomy d oes not function for short period sof time. This is norma l. How ever, if the s toma is not a ctive for 4 to 6 hours a nd

is a cc ompa nied b y cramps a nd/or nausea , the intestine could b e ob structed. An

ob struction (or bloc ka ge ) ma y b e pa rtia l; tha t is, so me liq uid ma y pa ss through. Ca ll

your doctor or ostomy nurse in either case to discuss the situation.

Wa tch for sw elling o f the stoma a nd a djust the opening of the pouch a cc ordingly

until the prob lem ha s pa ss ed . Ta ke a w a rm ba th to rela x the ab do mina l musc les .

S ometimes a cha nge in bod y pos ition, such a s a ss uming a knee to ches t position,

may encourage movement of the bolus of food. Do not take a laxative. If unable to

pas s a food b olus, go to the nearest emergenc y room.

Obstruction ca n be c a used b y high-residue food s s uch as Chinese veg etab les,

pineapple, nuts, co conut and c orn and by internal cha nges such a s a dhes ions.

DiarrheaWhen d ia rrhea oc curs, the intestina l co ntents p a s s through the s ma ll intestine

too quickly for the absorption of fluids and electrolytes to take place and may cause

exces sive los s of fluids a nd elec trolytes . You mus t q uickly repla ce these elec trolytes

to avoid becoming ill from dehydration and mineral deficiency.


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16

However, loose stool can come from eating certain foods and is usually temporary.

Raw fruits and vegetables, milk, fruit juice, prune juice or contaminated drinking water

are examples. Loos e stoo l may a lso be c ause d b y emotiona l stress . So me people

w ith ileos tomies ma y a lw a ys have “ w a tery disc ha rge ” a nd this is normal for them. The

only w a y to be sure yo u ha ve d ia rrhea is to me a sure yo ur output. 800-1,000 cc /da y is

normal for an ileostomy.

Diarrhea has these characteristics:• The intestine disc ha rge s g rea t q uantities of wa tery sto ol.• It comes on s uddenly and ma y be ac companied by c ramps.

Diarrhea can be caused by:• Intestinal flu which ma y be a cc ompa nied b y fever a nd vomiting.

• Antibiotics , penicillin a nd o ther pres cription me dica tions .

• P a rtia l ob struction charac terized by od orous d is cha rge , cramps , force ful liq uid

output and excess ive noises from the stoma . It ca n be c a used b y food o r other

fac tors. You s hould s eek medica l a ttention if this oc curs.

If diarrhea persists , c ons ult your physicia n or os tomy nurse. Ta ke me dica tions a spres cribed . Then repla ce fluids by ta king o ne cup o f sw eetened , clear tea o r one g la ss

of orang e juice follow ed the next hour by one cup o f sa lty broth. Co ntinue a lternating

the drinks until diarrhea subsides.

Electrolyte Balance

Electrolyte balance (especially potassium and sodium) is important. When the

colon (large intestine) is removed, a greater risk for electrolyte imbalance can occur.

Diarrhea, excessive perspiration and vomiting can increase this risk. Your diet should

include fluids a nd foo ds rich in sod ium and pota s sium.

Dehydration is a common concern with symptoms of increased thirst, dry mouth,

decreased urine output and fatigue. Increase any type of fluids such as Pedialyte ®

w hich is high in potas s ium and so dium. Avoid high-sug a r drinks w hich c a n ca use

osmotic diarrhea. Daily intake of fluids should be 8-10 (8 oz.) glasses. Any liquid

containing water (soda, milk, juice, etc.) helps to meet your daily requirement. Loss

of appetite, drowsiness and leg cramping may indicate sodium depletion. Fatigue,

muscle w ea kness a nd s hortness of brea th may indica te potas sium de pletion.

Additional dietary guidelines may be found in the Diet and Nutrition Guide

publishe d by the United Osto my Ass oc ia tions of America .


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17

ILEOSTOMY COMPLICATIONS cont.

Phantom Rectum

P hanto m rec tum is simila r to the “ pha ntom limb” of a mputees w ho feel as if their

remo ved limb is s till there. It is norma l for you to feel as if you need to e va cua te. This

can occur for years after surgery. If the rectum has not been removed, one may also

have this feeling a nd ma y pa ss mucus w hen sitting o n the toilet. So me w ho have ha dtheir rectum removed say that the feeling is relieved somewhat by sitting on the toilet

and ac ting a s if an eva cuation is taking plac e.

Short Bowel Syndrome

This co ndition ha ppens in Crohn’s disea se or dise a se s of the s ma ll intestine when

surgery is req uired to remove a subs ta ntia l a mount of the s ma ll bo w el. This c ond ition

merits spe cial attention b ec a use of the loss of the intestine’s vital ab so rptive function.

P eople w ith this c ond ition mus t rema in under a phys ician’s s upervis ion. Theyca n live a normal life but must be ca reful to ma intain ad eq uate nourishme nt, a void

diarrhea a nd to b e w ithin rea ch of med ica l ca re. The s horter the s ma ll intes tine, the

more liq uid the d isc ha rge w ill be. This ma y reduce the time a pouch ca n be w orn

bec a use of mo re rapid undermining of the s kin ba rrier. S pec ia l pouching s ystem s a re

available for high, liquid ileostomy output.

Medical Emergencies

You should call the doctor or ostomy nurse when you have:

• Cramps la sting mo re than 2-3 hours• Co ntinuous na usea a nd vomiting

• The ileos tomy do es no t have a ny output for 4-6 hours a nd is a cc ompa nied b y

cramping and nausea

• S evere wa tery disc harge la sting more than 5-6 hours

• S evere od or may indica te infection

• A deep c ut in the stoma

• S evere skin irrita tion o r deep ulcers

• Exces sive bleed ing from the s toma opening (or a mod erate a mount in the pouch

a t se vera l times of emptying)

• Co ntinuous b leeding a t the junction b etween s toma and skin

• Unusua l cha nge in sto ma s ize (prolaps e or retra ction) a nd a ppea ra nce (co lor)

Hospitalization

Ta ke yo ur os tomy s upplies w ith you s ince the hos pital ma y not ha ve your type.

Prepare to do some expert communicating, especially if you go into a hospital where

ileos tomy pa tients a re rare or if you g o for a co ndition no t rela ted to yo ur os tomy.


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Do not submit to any procedures you think may be harmful such as taking a

la xative, ta king a n enema through the s toma or rec tum, or insertion o f a rec tal

thermometer. If you a re in doub t a bo ut a ny proced ure, a s k to ta lk to your do cto r.

Ask to have the following information listed on your chart: 1) type of ostomy or

continent diversion 2) whether or not your rectum has been removed or is intact 3)details of your management routine and products used 4) procedures to be avoided

(see above).

LIVING WITH AN ILEOSTOMY

Learning to live with an ileostomy may seem like a big undertaking. It is similar

to o ther major cha nges in your life. B eg inning a new job , mo ving to a nother city,

marriage and having children are all examples of adapting to a new way of life.

Initia lly, yo u ha ve to a djust to the unfamilia r as pec ts of thes e e xperience s a nd this

may take some time. Having a positive outlook on life, patience and a sense of humorare keys to adjusting to any new situation. You can find support through local, UOAA

Affilia ted S upport G roups . To find a g roup in your area , vis it w w w.o s tomy.org o r ca ll

800-826-0826.

There a re times a fter surge ry w hen yo u ma y feel disco ura ge d. You ma y feel alone

and iso lated . Be ca use the whole experience is s o new to you, you may feel a wkwa rd,

frustrated a nd uncertain. Feeling disc oura ge d is rea l a nd normal. You might cry, b e

hos tile or angry a nd rea ct in wa ys tha t a re unusua l for you. Ta lking to a truste d friend ,

nurs e, c lergy a nd c erta inly a nother perso n w ith a n os tomy ma y help you w ork through

those feelings. You may discover new hope and encouragement.

Your soc ia l life ca n be a s a ctive a s it w a s before surge ry. You c a n enjoy a ll

activities such as travel, sporting events, eating at restaurants or whatever you

enjoye d b efore. The firs t time yo u go out of the ho use a fter surgery, you ma y feel as

if everyone is staring at your pouch even though it is not visible under your clothing.

You ma y feel your pouch o n your bo dy, but no one c a n se e it. Keep thes e q uestions

in mind: Did you know wha t a ileos tomy wa s, or where a stoma wa s loca ted, or wha t

it looked like, before you had surgery?

You ma y a lso w orry a bo ut your pouch filling w ith g a s a nd bulging under your

clothing. A quick trip to the rest room can take care of this problem. If you are worried

about your pouch filling up immediately after eating at a social event, remember,people without ileostomies often need to go to the rest room after eating and nobody

will think it unusual if you do the same. You will probably find that you need to empty

your pouch of co ntents a nd g a s less often than you need to urinate.

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19

LIVING WITH AN ILEOSTOMY cont.

Telling Others About Surgery

You might b e w orried a bo ut how others w ill a cc ept you a nd ho w your so cial role

may be changed. It is natural to wonder how you will explain your surgery. Your

friends and relatives may ask questions about your operation. You can tell them as

much a s you w a nt them to know. You need not feel you ha ve to explain your surge ryto everyone who asks. A brief explanation would be that you had abdominal surgery,

or that you ha d a pa rt of or your entire c olon removed.

If you ha ve c hildren, a ns w er their ques tions s imply and truthfully. A s imple

expla na tion w ill be enoug h for them. Once you ha ve expla ined w ha t a ileos tomy is,

they may a sk q uestions a bo ut it and w a nt to see yo ur s toma or the pouch. Ta lking

a bo ut your surge ry in a natural w a y w ill dispel any mis co nceptions they might ha ve.

They w ill a cc ept your ileos tomy much the s a me w a y you do .

If you a re c ons ide ring ma rria ge , d isc uss ions w ith your future s pous e a bo ut life w ith

a n ileos tomy a nd its effect o n s ex, c hildren a nd fa mily a cc epta nce w ill help to a llevia temisc onc eptions on the pa rt of the spo use. Attending UOAA suppo rt g roup mee tings

tog ether w ill a ls o b e helpful. Ta lking to o ther couples , in w hich one pa rtner has a

ileostomy, will provide an experienced viewpoint.

Clothing and Appearance

One does not need to purchase special clothing after ileostomy surgery, but some

minor ad justments ma y be nece ss a ry for comfort and preference . The pres sure of

underga rments w ith ela stic w ill not ha rm the s toma or prevent function o f the bo w el.

If you were ill before surgery, you may find you can now begin to eat normally forthe firs t time in yea rs . As your appetite returns, yo u may ga in weight. This c a n a ffect

the clothes you choose more than the pouching system itself.

Cotton knit or stretch underpants may give the support and security you need.

P anty hos e a re a lso co mfortab le. A simple pouch c over ad ds comfort by ab so rbing

perspira tion a nd keeps the pouc h from resting on the skin. Men ca n w ea r either boxer

or jockey-type shorts.

Eating and Digestion

After healing is complete and the ostomy is functioning normally, most people with

ileos tomies ca n return to a reg ula r diet. If you ha ve a spe cial diet be ca use o f hea rt

disease, diabetes or other health problems, you should ask your doctor about a diet

that will work for you. Here are a few simple guidelines about your diet:

• Doc tors often ha ve their patients follow a low -res idue d iet the first w eeks a fter

a ny a bd omina l surge ry. This include s only food s that a re ea sily d ige sted a nd

excludes ra w fruits a nd vege tables. B e s ure to find out w hen you ca n sta rt a

reg ula r diet. Ea t a ll food s that you like e xcept thos e restricted by your physician.


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• Try one food a d a y that you ha ve not ea ten since surge ry. Eat sma ll portions a t

first, then grad ually increas e the a mount. If a sm a ll s erving gives yo u cramps or

diarrhea , eliminate that foo d from te mporarily a nd try it a ga in in a few w eeks.

• Drink plenty o f liq uids . A minimum of 8-10 eight-ounce g la s ses of w a ter per da y

is rec ommend ed . Dehydra tion a nd los s of electrolytes (s a lts a nd minera ls ) a repossible if not enough fluids are consumed in a day. Increase your fluid intake if

persp iring or in ho t c lima tes .

Beets will make ileostomy output turn a reddish color rather like blood, but

there is no ha rm do ne. Toma to juice a nd foo d d yes ma y cha nge the usua l co lor of

ileos tomy o utput a s w ell.

Additional dietary guidelines may be found in the Diet and Nutrition Guide

publishe d by the United Osto my Ass oc ia tions of America .

Returning to Work

As your strength returns, you can go back to your regular activities. If you return

to w ork, you ma y w is h to c onfide in your employer or a g oo d friend. B eing o pen

a bo ut your ileos tomy w ill help ed uca te others. Keeping it a c omplete sec ret ma y

cause practical difficulties.

Persons with ileostomies can do most jobs; however, heavy lifting may cause a

stoma to herniate or prolapse and should only be resumed under the guidance of

a physician. A sudden blow in the pouch area could cause the barrier or pouch to

shift and cut the stoma. Still, persons who have ileostomies do heavy lifting, such asfiremen, mec ha nics a nd truck drivers. There a re a thletes w ho ha ve s toma s. Chec k

with your doctor about your type of work. As with all major surgery, it will take time

for you to regain strength after your operation. A letter from your doctor to your

employer ma y be helpful sho uld the employer have d oubts a bo ut your physica l

capabilities.

Employability and insurability are issues for some individuals. If these issues

de velop, se ek help from hea lthca re profess iona ls a nd/or talk w ith others w ho ha ve

found solutions to these issues.

Intimacy and Sexuality

Sexual relationships and intimacy are important and fulfilling aspects of your

life that should continue after ostomy surgery. Your attitude is a key factor in

re-establishing sexual expression and intimacy. A period of adjustment after surgery

is to b e e xpected . S exual function in wo men is us ually not impa ired , w hile s exual

potency of men may sometimes be affected, usually only temporarily. Discuss any

prob lems w ith your phys ic ia n and/or os tomy nurse .


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21

LIVING WITH AN ILEOSTOMY cont.

Any sexuality co ncerns you have s hould be disc ussed openly betw een you a nd

your pa rtner. It is likely tha t yo ur pa rtner w ill ha ve a nxieties a bo ut s exua l a ctivities due

to lack of information. An intimate relationship is one in which it matters how well two

people c a n co mmunica te.

The first time yo u bec ome intima te a fter surgery things ma y not g o perfec tly. Menmay have trouble getting and keeping an erection and women sometimes have pain

during intercourse. Thes e c onditions w ill usua lly improve w ith time. Your interes t in

sex will gradually return as your strength is regained and management issues are

ma s tered . B od y c onta ct d uring s exual ac tivities w ill usua lly not ha rm the s toma or

loos en the pouch from the a bd omen.

Women ma y co nsider wea ring c rotc hles s p a nties , “ted dies,” or a s hort slip or

nightie. Men may consider wearing a cummerbund around the midsection to secure

the pouch. There a re s evera l types of pouch c overs that c a n be purcha s ed o r you ca n

make your own.

Ostomy surgery may present more concerns for single individuals. When to tell

“that s omeone s pecia l” depend s upon the relationship. Brief ca sua l da tes ma y not

need to know. If the relationship grows and leads to intimacy, the partner needs to be

told a bo ut the os tomy prior to a se xual experience .

P regna ncy in women w ho ha ve had ileos tomy s urgery is not uncommon. B efore

preg na ncy is c ons ide red , it sho uld b e d isc uss ed w ith your do cto r. The ileos tomy

itself is not a reason to avoid pregnancy. If you are healthy, the risk during childbirth

appears to be no greater than for other mothers. Of course, other health problems

must be taken into consideration and discussed with your physician.

For more information, the guide book Intimacy, Sexuality and an Ostomy is

a vaila ble from the United Osto my As so ciations of America .

Participating in Sports

An os tomy should not limit your pa rticipa tion in sp orts. There a re a few

preca utions, however. Many physicians do not a llow conta ct s ports b eca use o f

possible injury to the stoma from a severe blow or because the pouching system

ma y s lip. How ever, thes e problems ma y b e o verco me w ith s pec ia l protec tion. Weight

lifting c ould result in a hernia a t the s toma . C heck w ith your do cto r a bo ut such s ports.Inde ed, people w ith os tomies a re d ista nce runners, w eight lifters, skiers, s w immers

and participate in most other types of athletics.

Bathing and Swimming

You ma y ba the w ith or without your pouching sy stem in pla ce . Norma l expos ure to

air or contac t with so a p a nd w a ter will not harm the s toma a nd w a ter does not enter

the ostomy opening.


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Remember these points;

• You may w a nt to protec t the barrier by ta ping the edge s w ith wa terproof ta pe

• You ma y wa nt to choo se a sw im suit that ha s a lining for a s moo ther profile

• Women ma y we a r stretch panties m a de e spe cially for s w im suits

• Men may w a nt to wea r a support ga rment sold in men’s underwea r depa rtments

or athletic wear departments

• Men may prefer to w ea r a tank top a nd trunks, if the sto ma is a bo ve the belt line

• For s w imming, emp ty your pouch b eforeha nd a nd remember to ea t lightly

Travel

All methods of travel are open to you. Many people with ileostomies travel

extens ively inc luding c a mping trips , c ruises a nd a ir tra vel. Travel sug ge s tions :

Ta ke along enoug h supplies to la s t the entire trip plus s ome extras . Double wha t

you think you may need , bec a use they may not be ea sy to get w here you are going.

Even if you don’t expect to change your pouch take along everything you need to do

so. Zip-Lock® bags may be used for pouch disposal. Leave home fully prepared. Findout if and where supplies are available before a long trip. A local UOAA support group

may be helpful in locating ostomy supplies and local medical professionals. Contact

the UOAA office or visit www.ostomy.org to find the nearest support group.

Seat belts will not harm the stoma when adjusted comfortably. You may place a

clothes pin near the retraction slot to relieve tension on the belt. When traveling by

car, keep your supplies in the coolest part. Avoid the trunk or back window ledge.

When tra veling b y pla ne, rememb er tha t chec ked-in lugg a ge so metimes ge ts

lost. Carry an extra pouching system and other supplies on the plane with you. Small

co sme tic ba gs w ith pla stic linings or sha ving kits w ork w ell. Thes e s hould be pla ce din yo ur ca rry-on lugg a ge .

To a void prob lems w ith cus toms or lugg a ge inspe ction, have a note from yo ur

doc tor sta ting tha t you need to c arry os tomy supplies and medica tion by hand.

Further problems might be avoided by having this information translated into the

la ngua ge or la ngua ge s of the c ountry(s ) you a re visiting.

B efore traveling a broad , g et a lis t of the current English-spe a king physicia ns in

various foreign cities that cha rge a sta nda rd fee. The Interna tiona l As so ciation o f

Med ica l Ass is ta nc e to Travelers (IAMAT) a t 716-754-4883 publishes lis ts of Eng lish

spe a king physicia ns in over 2,500 cities a round the w orld. w w w.ia ma t.org.

Tra veler’s d ia rrhea is a comm on prob lem in foreign c ountries , w hether you ha ve

an o stomy o r not. The mos t commo n ca use of d iarrhea is co ntaminated wa ter and /

or food. It may also be caused by mere changes in water, food or climate. It is wise to

avoid unpeeled fruits and raw vegetables.

Persons with ileostomies lose water and minerals quickly when they have diarrhea.

For this rea s on yo u ma y need med ica tion to s top the fluid a nd e lec trolyte loss . Your

physicia n c a n g ive you a pres cription for med ica tion to co ntrol dia rrhea . It s hould be


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23

filled in your home sta te, s ince the presc ription ma y no t be valid else w here. B e s ure

drinking w a ter is sa fe. If the wa ter is not s a fe, do not use the ice either. B ottled w a ter

or boiled water is recommended.

FOR PARENTS OF CHILDREN WITH ILEOSTOMIES

If you are a parent of a child with an ileostomy, you probably have many questionsa nd co ncerns. When the s urge on s a id your child needed this surge ry, yo ur firs t

reaction may have been, “Is this the only choice?” Your doctor no doubt assured you

that the ileostomy was necessary to save your child’s life. You may have felt shock.

You may have asked yourself, “Why did this happen to us?”

Ta lking to a goo d friend , your docto r, clergy, os tomy nurse, o r the pa rents of a

child w ho ha s a n ileos tomy helps. Your loc a l suppo rt group of the United Osto my

Assoc ia tions of America ca n refer you to other parents . This w ill prepa re yo u to he lp

your child adjust to the ileostomy. Deal with your own feelings first, then you may give

your child the emotional support he or she need s.

If you a re fee ling guilty o r res pons ible for your child’s illnes s a nd surgery, this is

a normal feeling for parents. You ma y think tha t your drea ms ha ve be en s hattered

and may wonder if your child will be able to do the things that others do. Most

parents worry about their child’s life span, ability to work, adjustment to living with an

ileos tomy a nd in la ter years, ma rria ge a nd family. Thes e a re no rma l conc erns o f a ll

parents facing major changes in their child’s life.

When your child is in the hos pita l, be there a s often a s pos sible. B eing in the

hospital and having surgery are frightening at any age. At this time your child is

especially vulnerable and needs to feel wanted and reassured about your love. You

be ing there ma kes him/her feel se cure.

B e prepared for how y ou w ill feel se eing a n opening on yo ur child’s a bd omen w ith

bowel contents running into a pouch. Your first reaction, in your child’s presence, is

vitally important and must be as positive and casual as possible.

If your child ha s a fever or other symptoms , don’t pa nic. He or she w ill ha ve a ll the

a ches a nd pa ins that o ther children have. When in doubt, c a ll your physician.

Psychosocial Issues

As your child beg ins to recover from ileos tomy s urge ry, there a re ma ny w a ys you

ca n be a so urce o f strength and support.

Your so n or da ughter may b e a fra id tha t young friends a nd rela tives w ill not w a nt

to be a round them. Your ac cepta nce is need ed. Encourag e your son or da ughter to

talk to yo u ab out these feelings . If you a re op en a nd na tura l a bo ut the ileos tomy, he or

she w ill be, too.

Try to und ersta nd how your child feels. Your child ne ed s to fee l tha t you


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unders ta nd w ha t it is like to have a n ileos tomy. Too m uch s ympa thy, how ever, is no t

goo d a nd w ill take a wa y a sens e of independ ence. Listen, try to understand feelings ,

enco ura ge a nd b e ta ctful. It is difficult not to o verprotec t a nd pa mper a c hild w ho is

rec overing from ma jor surge ry. B ec a use it is so ea sy to g ive in to your feelings , be a s

firm a s pos s ible.

If your child is very young, they will probably accept the ileostomy easier than

you. The c hild w ill g row up with it a nd it w ill be co me a na tura l pa rt of them. For a

teenag er who is facing a ll the problems a ss ociated w ith puberty a nd a dolescenc e,

this s urge ry co mes a t an e spe cially difficult time. The c hang es in bod y ima ge ca used

by the ileos tomy ma y co mpound the stress es of a dolescenc e. Your teenag er may feel

unattra ctive, rejec ted a nd d ifferent be ca use of the ileos tomy.

You may notice temporary changes in behavior patterns. Your acceptance and

suppo rt is es pec ia lly nee de d now. Try to understa nd the feelings a nd liste n to the

co mpla ints. P rovide enco ura ge ment to find realis tic so lutions to thes e problems .

Management Issues

Ta ke an interest in your child’s c a re a nd ma na ge ment. If he or she is o ld enoug h,

you will want to encourage independence in their ostomy care. Your child may require

so me help and s upport a t firs t, due to inse curity a bo ut the new s upplies , phys ica l

w ea knes s a nd tiring e a sily. A very young child c a n be ta ught to emp ty the pouch. An

older child can get supplies together and learn steps of changing the pouch, until

the whole proces s c a n be do ne alone. You may w ant to use a teac hing proc ess that

begins with your son or daughter assisting you. Later on you can help, standing by to

help only when it is need ed .

A very important pe rs on to help with ca re o f your child is the o s tomy nurse. This is

a person w ho ha s rec eived s pec ia l tra ining in ostomy m a na ge ment. To find a n os tomy

nurs e, c heck w ith your hospita l or conta ct the United Osto my Ass oc ia tions of America

a nd its s upport g roups w ho c a n refer you to a n WOCN (ET) nurs e in your area .

Be prepared for trial and error in managing, or helping to manage, your child’s

ileos tomy. There are some cha nges tha t will oc cur in the beg inning tha t w ill not

hap pen later. There ma y b e d iet a djustments , s kin prob lems , po uching prob lems a nd

others. The importa nt thing to rememb er is that a nything new needs experimenta tion

a nd a da pta tion. A se nse of humor and a pos itive a ttitude w ill be helpful.

Everyday Living

B e flexible in d ea ling w ith your child’s a da ptation to s cho ol and everyda y living

situa tions . If at first, the p ouch s hould hap pen to leak a t sc hool, your child c a n go

to the s cho ol nurse . You might p ick up your child for a po uching cha nge a t home,

then he or she c a n return to s cho ol. One young ste r tells this sto ry: he noticed that his

pouch w as lea king a nd ha d sta ined his trousers. Instea d o f rushing o ut of the cla ss a s


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everyone else did, he ca lmly w a ited until everyone ha d left the room. In this w a y, he

very wisely avoided embarrassment and then called home so that his mother could

pick him up. You may want to visit the principal, the classroom teacher, the physical

education teacher and the nurse to explain your child’s needs.

You will find that your child can participate in sports, can go on overnight trips, to

ca mp a nd do a ll ac tivities enjoye d be fore. At first, it will be d ifficult to let yo ur child

go a wa y on his o r her ow n. Disc uss w hat c an b e do ne if any problems come up whileyour child is a w a y from ho me. Trea t them a s you trea t your other children.

Ta lk with your child a bo ut how they w ill explain the s urgery to o thers. He or she

ma y w a nt to tell close friends , rela tives a nd a cq uainta nces . Natura lly, peo ple w ill be

curious. Once the surgery is explained, chances are your child will be accepted as

before. Your child will likely duplicate your explanation. If you discuss it in a natural

w a y w ith others, your child w ill a lso . Most peo ple w ill w a nt to know w ha t to expec t

and how they ca n help. Encourag e o thers to empa thize, not s ympathize.

Remind yo ur child to be co nsiderate o f others. Cleaning up the ba throom a fter

ileostomy care is important to maintaining family harmony. You and your child arefac ing a new situa tion in your lives. If it is a pproa ched w ith opennes s, p erseverance

a nd a se nse of humor, you w ill find that a n ileos tomy w ill not s top yo ur so n or

da ughter from enga ging life’s everyda y a ctivities . P a rents find that a hea lthy child w ith

an ileos tomy ca n once a ga in be a happy c hild.

Eac h s ummer, the United Osto my Ass oc ia tions of America spo nso rs a Youth

Ra lly for ag es 11 through 17. This is a ca mp for young pe ople with osto mies ,

alternate procedures and other related conditions. Planned educational sessions on

self-esteem, b od y imag e, hygiene, os tomy iss ues plus d isc ussion ses sions, craft

projects, tours and sports are offered. For further information, contact the Youth Rally

Co mmittee, Inc. a t w w w.ra lly4youth.org.

J oin the loc a l UOAA suppo rt group a nd keep ab rea st of the new es t prod ucts a nd

med ica l prog res s a nd sha re e xperience s w ith other pa rents. Add itiona l informa tion for

support of the children and their families can be obtained by calling 800-826-0826 or

by visiting w w w.os tomy.org.


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GLOSSARY OF TERMS

Anastomosis: the surgica l formation of a pas sa gew a y betw een two normally

dista nt spa ce s o r orga ns. A “ho oking-up” of bo w el, ureter, a rtery, vein, etc., a fter a

section is removed.

Benign: not cancerous, not malignant.

Carcinoma: cancer, malignant growth.

Colectomy: remo va l of all or pa rt of the co lon.

Colitis: infla mma tion o f the la rge intestine. A pa rticula rly s evere type is ulcerative

colitis, which may require an ileostomy.

Colon: pa rt of the intestine which s tores d ige stive ma teria l a nd a bs orbs w a ter. Als o

referred to as the large intestine or the large bowel.

Congenital: pres ent or existing a t the time o f birth, suc h a s a de formity, disea se , ortendency.

Continent Diversion: any fecal or urinary diversion that avoids the need to wearan external collecting pouch. Continent fecal diversions include the J-Pouch(evacuated through the anus) and Kock Pouch (emptied with a catheter). Continenturinary diversions include the Indiana Pouch (emptied with a catheter) andNeobladder (evacuated normally through the urethra).

Continent Ileostomy (or Kock Pouch): the surgical creation of an ileal pouch inside

the low er ab do men to co llec t w a ste a fter a co lec tomy for ulce ra tive c olitis. The

pouch is emptied regularly with a small tube inserted through an opening in theabdomen - no external bag is required.

Crohn’s Disease: ileitis, regional enteritis or granulomatous disease of the bowel:

inflammatory bowel disease which penetrates the deep lining of any part of small

or la rge bow el. In se lected ca ses , ileos tomy bec omes neces sa ry; Crohn’s ca n flare

up after ileostomy surgery, however.

Diverticulitis: inflammation of the diverticula (little sacs on the colon); can cause

abscess, scarring with stricture or perforation of the colon with peritonitis in severe

cases .

Diverticulosis: presence of diverticula (little sacs on the colon).

Electrolytes: sa lts a nd minera ls needed by the b ody for health.

Enzyme: subs tance formed in a nimal and pla nt cells that s tart or speed s up

sp ec ific chemica l rea ctions.


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Familial Polyposis (multiple polyps ): rare dise a s e; runs in fam ilies . The colon

a nd rec tum co nta in ma ny po lyps . This is a different condition from me rely the

presence of a small number of polyps in the colon. Familial polyposis requires

reg ula r medica l s upervision of a ll members o f the fa mily b ec a use of s erious

complica tions and strong tendency to maligna ncy.

Fistula: an a bnorma l pas sa ge betw een two internal orga ns or from a n internal

orga n to the surface of the bod y.

Gastroenteritis: an inflammation of the stomach and the intestines.

Hernia: the protrusion (bulging) of a loop or knuckle of an organ or tissue through

a structure which usually contains it.

Hernia (a bd omina l): the protrusion of a n interna l orga n throug h the a bd ominal

muscula ture; ca n oc cur a round s tomas .

Ileostomy output: w a s te ma tter from the ileum (sma ll intes tine). Als o referred to a s

intestinal contents, d isc harge, d raina ge, b ody wa ste, s tool, feces .

Ileostomy: an “opening of the ileum” in which the end of the small intestine (ileum)

is brought out s urgica lly through a n ope ning in the a bd omen. Intes tina l co ntents

a re e xpelled from the b od y through this opening.

Ileum: low es t pa rt or end of the s ma ll intestine.

Inflammatory Bowel Disease (IB D): genera l term for ulcerative co litis a nd Crohn’s

disease.

J -Pouch: a res ervoir created out of s ma ll isntes tine a fter remova l of hte co lona nd portions of the rectum. This interna l pouc h holds feca l ma tter (s too l) be fore

elimination through the anus.

Malignancy: a cancerous growth.

Obstruction: blockage of ileostomy indicated by partial or complete stoppage of

ileal flow.

Ostomy: surgically created opening through the abdominal wall for the elimination

of body waste. Refers to ileostomies, colostomies and urostomies. Also referred to

as s toma.

Ostomy Visitor: person with an ostomy, member of United Ostomy Associations

of America, with special training to visit people before or shortly after ostomy

surgery. The vis itor offers support a nd information ra ther than med ica l a dvice.

Peristalsis: prog res sive wa ves of motion w hich oc cur without voluntary control to

push w a ste ma teria l through the intestine.


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Polyp: sma ll projec tion inside of bo w el, often mus hroo m s ha ped ; ma y b e fla t. It is

usually benign, but can be malignant.

Prolapse: a “falling out” in which the stoma becomes longer.

Prosthesis: an artificial substitute for a missing body part, such as an arm or leg,

eye, or tooth, used for functional or cosmetic reasons or both.

Rectum: lowest portion of the large intestine.

Resection: surgical removal or excision.

Retraction: the stoma d raw s b a ck into the bod y.

Revision: construction of a new stoma when the original one does not function

well.

Skin Barrier: a ny one of severa l subs tance s us ed to c over skin around the stoma .

Can be pliable sheets, pastes, etc.

Stenosis: narrow ing o r tightness of the stoma which ma y ca use o bs truction.

Stoma (opening): an end of the ileum or colon which is brought through the skinas a site for stool or urine to exit the body. (Note that even urinary stomas are builtfrom a segment of ileum or colon.) The stoma often protrudes like a nipple andmay be around 3/4” to 1-3/4” in diameter. It is usually pink to red in color. Stomasdo not include nerves sensitive to pain, so it is possible to cut or burn a stomawithout feeling anything. Stomas do, however, include nerves sensitive to otherstimuli such as stretching.

Stricture: an a bnormal narrowing of a body pas sa ge.

Ulcerative Colitis: one form o f infla mma tory bow el dise a se in w hich ulce rs form in

the intestinal lining of the colon and rectum. Severe, often bloody, diarrhea is the

primary symptom of the disease, which occurs most often in young adults.

Wound, Ostomy and Continence Nurse, o r an Ente ros tom a l Thera py (ET) Nurse.

A person who takes care of and teaches ostomy patients. A special training course

for registered nurses is required for certification.

Documents

Ileostomy Guide