INTiMAcy AFTER OSTOMy SURGERy GUidE
Contents
1. Koon United Ostomy Associations of America Inc C Q INTIMACY AFTER OSTOMY SURGERY GUIDE A publication of the United Ostomy Associations of America Inc SEIZE THE OPPORTUNITY INTIMACY AFTER OSTOMY SURGERY Revised 2009 Gwen Tumbull BS RN ET Clearwater Florida Toe United Ostomy Associations of America Inc 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 the national US ostomy organization from 1962 to 2005 which released its copyrights on this material C UOAA may be contacted at www ostomy org info ostomy org 800 826 0826 VI VII VIII CONTENTS SEX AND STOMAS MYTHS AND TRUTH HOW OUR BODIES WORK DURING SEX COMMON SEXUAL PROBLEMS TALKING WITH YOUR SEXUAL PARTNER THE EFFECT OF MEDICINES ON SEX PEARLS FOR THE BEDROOM CONTROLLING GAS AND ODOR HELPFUL HINTS Alternative Lifestyles Spinal Cord Injury Sex and Ostomy Birth Control for Men and Women When You Should Get Professional Help Help for Impotence RESOURCES GLOSSARY 13 14 15 16 17 18 20 21 Despite our differences and regardless of race creed or culture every person on this planet has one thing is common We are sexual beings whether we are young or old beautiful or plain male or female gay or straight sin2. free side of your tummy e Consider wearing a cummerbund around your midsection to prevent the pouch from flapping e Try wearing some attractive boxer shorts if you re concerned about exposing the pouch e Continued problems such as the inability to get or maintain an erection should be discussed with appropriate health care professionals There are solutions to almost every sexual problem so don t panic Alternative Lifestyles Ostomy surgery affects all kinds of people homosexuals and heterosexuals Removal of the rectum and closing of the anus may present a sexual impairment for some people with an ileostomy or colostomy so other methods of sexual pleasuring need to be discussed and investigated Gays have the same concerns and fears about sex after ostomy surgery as heterosexuals Many gay men and lesbians are often worried about real or imagined prejudice about their lifestyle and therefore don t tell health professionals and caregivers This limits the ability of these people to assist to help them live more positively after ostomy surgery There are ostomy support groups available for lesbian and gay ostomates Spinal Cord Injury Sex and Ostomy It is common for people who have spinal cord injuries to have a stoma sometimes two stomas Ostomy surgery restores control over the bladder and rectum that was lost when the spine was injured These individuals may be 18 wheelchair or bed bound so sexual activity has ad
3. The best way to understand how these after ostomy surgery changes might sway your ability and desire to participate sexually is to first understand how your cycle of sexual response worked before surgery How Our Bodies Work During Sex Sexual response consists of three phases e sexual desire e sexual arousal e orgasm The phases of response are the same whether you are stimulated by a partner or by yourself during masturbation Various hormones and two different sets of nerves control the way our bodies respond during sexual activity One set of nerves controls the between the ears part of sex by allowing us to fee these emotions sensations and changes The other set controls the between the legs part our body s ability to actually have the physical changes by controlling the flow of blood to the penis and vagina and activating the muscles in our sex organs or genitals Sexual desire is exactly what it says the yearning and wanting to have sex being turned on or horny the restless feeling or emotional tickle we get This desire to enter into sexual activity can be triggered or blocked by many things our senses sight and smell for example and emotions our thoughts and fantasies but also our hormones the male hormone testosterone and the female hormone estrogen Testosterone is produced in the testicles and estrogen is produced in the ovaries Adequate levels of these hormones are needed for sexual fun
4. certain level of importance because your other needs are fulfilled When illness or medical treatments interrupt your life sex may not be so important so you go down a rung or two for a while But as you recover your desire to return to a normal lifestyle sexual intimacy and your need to regain your feelings of sexuality move up a few rungs Work hobbies social life ay Self respect self esteem Love Affection Sex Safety Health Food water shelter Sex isn t so much about what happens between your legs It s more about what happens between your ears Linked closely to our feelings of sexuality however is how we think that s the between the ears part about ourselves and our bodies something the professionals call body image It s how we see ourselves in the mirror and think our body works looks smells and appears to others That s why when something as dramatic as ostomy surgery changes our body image our feelings of sexuality and self esteem sometime feel threatened even though we re still the same person and often healthier than we were before the operation Let s face it even without an ostomy developing a satisfactory sex life isn t always easy Everyone experiences sexual difficulties at some time during his or her life whether the issues are emotional or physical After ostomy surgery there are some physical and emotional changes that can have a direct affect on sexual functioning
5. cue from you Don t forget though that your partner s feelings are real and shouldn t be denied any more than your own 14 Things to Talk About e Physical limitations vagina dryness problems with erections e Pain if present e Fears of being unlovable naked leakage odor rejection e Your mutual expectations e What sexual activities you like to do e What sexual activities you do not like to do e Anger resentment guilt or other emotions that interfere with the desire to share sex The more you can share information the less difficult it will be to share your body For example if a woman is worried about painful intercourse after her surgery she may prefer manual stimulation to orgasm by her partner This can relieve a lot of tension and frustration at the same time it serves as a bridge to the time she is ready for intercourse However the partner won t know this unless the woman talks about it Since your attitude is probably the most important ingredient for a happy sex life you should do whatever you feel you need to do to feel relaxed free and at ease with your body Talking about these issues is a giant step forward The Effect of Medication on Sex Americans take a lot of medicine Seniors take more medicine than younger people and women take more than men In fact the average older person takes 4 5 prescription medicines and 2 1 non prescription medications such as vitamins over the counter cold
6. diabetes and alcoholism the aging process or emotional difficulties such as fear stress worry anger or frustration Sometimes these physical and emotional problems can happen at the same time For example a slight physical problem with erections can get worse because the man is worrying about it all the time The cause of the impotence will decide what the treatment should be Hormone treatment medications drug injections into the penis counseling and penile prostheses a surgically implanted device that enables a man to have an erection are all possible treatment options Talk with your doctor or Ostomy Nurse Don t worry in silence Resources The United Ostomy Associations of America Inc e www ostomy org 800 826 0826 Health Care Professionals e Colorectal surgeons e WOC ET or Ostomy Nurses e Urologists e Gynecologists e Urogynecologists e Psychiatrists e Psychologists e Sex Educators Counselors and Therapists e Fertility specialist UOAA Trained Ostomy Visitors 20 Helpful Web Sites American Association of Sexuality Educators Counselors and Therapists www aasect org will help you find a professional near you National Institutes of Health National Institute on Aging www nia nih gov click on Health Information for Sexuality in Later Life brochure Wound Ostomy and Continence Nurses Society www wocn org will help locate a certified WOC Nurse near you American Cancer Society ww
7. medicine and other drugs herbals supplements If you ve had ostomy surgery have a chronic illness or are receiving treatments for other conditions you ll likely be taking one or more medications If your surgery was fairly recent your body still hasn t fully recovered from the affects of anesthesia and you may still be taking some pain medicine Sometimes combining prescription and non prescription medicines together can cause some unexpected side effects in the place you least expect it the bedroom The following is a list of some common types of medications that can interfere with sexual desire erection and sexual functioning It s a good idea to discuss your medications with your doctor or pharmacist to check for any sex related side effects For example a man might be taking an antidepressant after surgery to help him cope with his emotional reaction to the surgery His problem with erection may be only a temporary one caused by the antidepressant rather than the operation Common Sexual Side Effects of Medicines e Reduced desire 15 e Difficulty with ejaculation e Difficulty getting and or keeping an erection e Decrease in the strength of orgasm Some Medications That May Affect Sexual Functioning High blood pressure medicine Antidepressants Pain medicine Alcohol Tranquilizers Antihistamines Sleeping pills Pearls for the Bedroom Most people do certain things to get ready for sex Mostly things t
8. ctioning After you feel desire your body enters into the second phase called sexual arousal You feel excited passionate and stimulated Your heart rate and breathing speed up Muscles in the body and sex organs become tense Blood rushes to sensitive areas on your skin and sex organs Men experience an erection of the penis and women s vaginas expand and get moist Orgasm is also a complicated physical and sensory experience made up of pleasant sensations and muscle contractions in the sex organs Clinically speaking an orgasm is simply the sudden release of pooled blood in the sex organs and tension in the muscles much as sneezing releases the pent up pressure you feel before you sneeze You could say that an orgasm is a sneeze in the sex organs No two people experience orgasm the same way The sex between the ears nerves control the pleasant sensation felt during orgasm During orgasm muscle contractions in men propel semen through the opening in the penis and women experience rhythmic muscle contractions in the vagina The sex between the legs nerves control this part of orgasm Is it my body Or is it my head Although ostomy surgery and the diseases and conditions that caused you to have the operation may leave you temporarily weak or with a reduced sex drive the medical term for sex drive is ibido pronounced a bead oh having an ostomy doesn t mean you have to ignore your sexuality How we feel affects w
9. ditional limitations not experienced in other people Spinal cord injured or wheelchair bound people should discuss their ability to participate in sex as well as alternative methods of giving and receiving sexual pleasure Sex and the Witty It s true that ostomy surgery and sex are serious business But perhaps that s all the more reason to keep and develop a sense of humor about it Joy humor and laughter are wonderful easily available low cost tools for bringing comfort into a relationship Laughter is the shortest distance between two people Victor Borge An ostomy should not be viewed as the end to living but simply living with a new end in view Embarrassing situations are often eased by a quick sense of humor Untimely noises from a stoma can be a straight line for many funny comebacks Come on isn t bathroom humor the kind of humor that makes everyone laugh Take advantage of it Birth Control for Men and Women Women Birth control methods should be discussed before and after ostomy surgery if this is of concern to you A woman with an ostomy who uses birth control pills needs to remember that this drug is usually absorbed in the small intestine Therefore if you have a urostomy sigmoid or transverse colostomy you should have no trouble absorbing birth control pills However there is a slight chance the pills may not be absorbed if you have an ileostomy leaving you at risk of becoming pregna
10. ead your mind Tell your partner what you like what you don t like Women with a stoma cant get pregnant Women with a stoma can and do get pregnant and have healthy babies It is important however for the woman to be followed by healthcare professionals throughout the pregnancy No one will ever love me because have a stoma It s reasonable to feel this way People who ve lost a breast to cancer or lost a limb feel this way too Your attitude and how you treat yourself sets the tone on how others treat you If you feel comfortable and accepting of your new body your partner is likely to do the same lIl never have an erection again If there s no erection the first time you try after surgery don t convince yourself this is the way it s going to be Rest Relax Regain your strength and try again If the problem persists talk to your doctor A man must ejaculate to have an orgasm Men can have an orgasm without ejaculating a dry orgasm Having sex will soread my cancer to my partner Cancer isn t spread through sexual contact However safe sex should be used to prevent sexually transmitted diseases such as AIDS HPV human papilloma virus and genital herpes The odor from my stoma will be a Deodorizers especially designed for turn off for my partner use with an ostomy are available to help reduce odors from stool and urine Some are used in the pouc
11. ectum to prevent the possible spread of the cancer to healthy tissues This removal of a wider piece of tissue often damages the nerves and blood vessels that control the ability to have an erection This condition is called impotence or erectile dysfunction ED On the other hand a man who has had his rectum removed for ulcerative colitis or Crohn s Disease may not have trouble with erections after surgery because his disease didn t require a wide removal of tissue around the rectum Therefore the nerves and blood vessels to the penis were not damaged Before having any kind of ostomy surgery it s important to discuss the possibility of changes to your sexual functioning you might expect after surgery Ask your doctor or WOC ET Nurse 12 Common Sexual Problems After Ostomy Surgery MEN Decrease Problems No orgasm Dry Less Infertility in desire with orgasm orgasm feannot Surgery may also be erection may also be produce affected by may also be affected by age sperm pain radiation affected by and certain chemotherapy certain medications amp medications medications Removal of Seldom Often Seldom Often Sometimes Sometimes the rectum Removal of Seldom Often Seldom Always Sometimes Always the bladder Pelvic Seldom Often Seldom Always Sometimes Always exenteration removal of the bladder rectum colon WOMEN Decrease Painful Problems Less vaginal Infertil
12. gle or married tall or short black white yellow religious or not sexually active or not or whether we have a stoma Not only can sex continue to be or actually begin to be fun and pleasurable but it s important to our overall emotional and physical sense of feeling OK Sexuality makes us feel whole and normal desirable and loveable What can happen however is that everything associated with an ostomy can prevent people with an ostomy as well as their sexual partners from relaxing and enjoying the experience of sex This can create added anxiety in the bedroom Ostomy surgery may alter your sexual functioning but it won t take away or destroy your sexuality Many sexual problems experienced after ostomy surgery may be more emotional than physical and are often based on misinformation Here are a few Myth Fact And they lived happily ever after This is a fairy tale Relationships are like tides sometimes they re up and sometimes they re down Adjustments can be made to keep the joy of sex alive but sex alone doesn t make a relationship secure Penis in vagina Is the only sex worth Giving and receiving pleasure can be having expressed in many ways hugging kissing cuddling holding hands masturbation oral sex stimulation with the hands and even sleeping in the same bed My partner should know what pleases me shouldn t have to explain it Unless your partner has ESP he or she can t r
13. h and some are taken by mouth Modern pouches are made of odor free materials To remain fresh keep your body and pouching system Clean Body movements and pressure of our Close body contact and movement bodies during sex will hurt my stoma during sex won t hurt your stoma However nothing fingers objects should be put into the stoma A stoma is not a sexual organ Old people dont have sex Ha Many seniors including ones with an ostomy are sexually active Be sure to seek credible sources of information your doctor your WOC Nurse Wound Ostomy Continence Nurse or ET Nurse Enterostomal Therapy the UOAA and other recognized authorities on the Internet The Ladder of Life Needs Our need for and feelings about sex change as we move through life We spend our existence climbing up and down our personal Ladders of Life Needs In order for us to want sex we must have basic needs such as food water and shelter satisfied Once we have those things we think about safety and our health When we re sure we re safe and healthy we then turn to love affection and sex which are linked closely to our feelings about ourselves When all those pieces of the puzzle have been satisfied we feel free and secure enough to return to work hobbies and a social life The journey up and down the Ladder of Life Needs is quite evident as you recover from ostomy surgery When you re healthy your desire for sex holds a
14. hat make them feel sexy whether it s showering shaving slathering on the after shave or perfume or wearing something skimpy For others it s soft lights champagne candlelit dinners and romantic music Sometimes people with a stoma feel they need to do a little more The following are a few pearls that may help you feel more comfortable in the bedroom Always practice SAFE SEX foams lubricated condoms other forms of contraception Focus on your feelings not the pouch Empty the pouch before engaging in sexual activity Make sure the pouch is secure reinforce it with paper tape around the edges If you wear an ostomy pouch belt make sure it s clean Make sure you are clean better yet jump in the tub or shower together If you re concerned about the appearance of the pouch use a pouch cover or a pouch you can t see through Use a passion pouch during sex These are smaller closed end disposable pouches that are shorter and less bulky than standard drainable pouches There are many brands available The side lying position may work better on the stoma side because the 16 pouch will fall away and not come between you and your partner e If you have a colostomy and you irrigate irrigating just before you have sex might allow you to wear a small patch or security pouch during that time Controlling Gas and Odor e Gas Many over the counter medications such as Mylanta Gas Johnson amp John
15. hat we are able to do After surgery it s often hard to get back into feeling sexy again Indeed you might not have any sexual feelings for days weeks or even months But don t worry this is normal How can you think about sex if you re still in pain or physically exhausted Let your body recover and learn to manage your stoma before tackling intimacies in the bedroom Some people start thinking about sex immediately after surgery They may have been unable to participate sexually due to weakness or illness for quite a long time before surgery and are raring to go afterwards Once again these folks sometimes are disappointed the first time they attempt to have sex because their bodies haven t had enough time to recover 10 The first time you become intimate after surgery things don t always go perfectly Men may have trouble getting and keeping an erection and women sometimes have pain during intercourse It s easy to get upset and convince yourself the surgery has ruined your sex life forever But take a minute and think about it It is really something caused by the surgery Or is it your own worry and fear about your ability to perform Are you worried that the stoma or the pouching system will offend your partner Are you worried about leakage the pouch falling off or odor Are you depressed Do you feel unattractive Are you taking medications that interfere with your sexual response Or are you simply not physically strong enough ye
16. ity in desire intercourse having an wetness inability to produce Surgery may also be can also be caused Orgasm can also be caused 99s or carry a affected by by vaginal dryness by menopause child ovaries pain radiation or a different position hysterectomy or low vagina or uterus chemotherapy of the vagina after estrogen removed amp medications surgery Removal of Seldom Sometimes Seldom Often Seldom the rectum Removal of Seldom Sometimes Seldom Often Sometimes the bladder Pelvic Sometimes Sometimes Sometimes Always Always exenteration bladder rectum ovaries uterus colon and sometimes all or part of the vagina are removed Common Sexual Problems Related to Chemotherapy and Radiation e Pregnancy is not recommended during chemotherapy e Chemotherapy and radiation may reduce the ovaries capacity to produce ripe eggs in women o Women undergoing chemotherapy radiation therapy or removal of the ovaries may want to preserve healthy eggs prior to surgery and these treatments if a future pregnancy is desired 13 e These therapies may damage sperm cell production in men e Women may experience vaginal dryness e Men undergoing chemotherapy removal of the rectum for cancer or radiation therapy may want to preserve healthy sperm prior to surgery and these treatments if fathering a child is planned or desired mi Talking with Your Sexual Partner One of
17. l filters to deodorize gas in the pouch and help prevent the pouch from ballooning Chlorophyllin has been proven to control body and fecal odor and is safe in oral doses up to 100 mg three times a day It can turn the stool green and cause diarrhea It can also be used in the pouch e Specially formulated deodorizers can be put directly into the pouch NOTE Never use an aspirin tablet in your pouch as a deodorizer Aspirin can irritate the stoma e If you have an ileostomy or a colostomy gas filters are available in both drainable and closed end pouches These help to keep the pouch flat and deodorize gas e Use a room freshener after emptying your pouch example Ozium Air Sanitizer Atmosphere Products Co Inc 17 Hints for Women e Use personal lubricants for vaginal dryness for example Astroglide K Y Jelly you can buy these in most grocery or drug stores e Hormone creams or vaginal suppositories are sometimes prescribed for vaginal dryness Talk to your doctor about them e Consider wearing crotch less panties teddies or a short slip or nightie or something with a snap or cut out crotch e If the pouch or other stoma covering seems to be in the way or causes pain during intercourse experiment with different positions e You might not come to orgasm the first time you have sex after surgery Don t worry this is normal Hints for Men e Inthe man on top position lean a little toward the pouch
18. nt The use of diaphragms and IUDs intrauterine devices should also be discussed with healthcare professionals especially in women who have had their rectums or part of the vaginal wall removed Today there are many options for women besides birth control pills hormone skin patches regular injections etc Discuss these issues with your doctor gynecologist or Ostomy Nurse and pharmacist Men If your surgeon feels there is a chance you may become sterile after your ostomy surgery and you still want to be able to father a child you may want to think about storing your sperm before your surgery Discuss these options with your surgeon or other health professional 19 When You Should Get Professional Help Problems with sex that last for several weeks or months shouldn t be ignored You re not alone There are many options available to you in solving them whether the solutions involve sex therapy couples therapy talking to someone from a support group surgical corrections or the use of medical devices and medication Ask for help if you have any of the following problems that don t go away e Pain during intercourse that lasts for weeks and months after surgery e Difficulty making sexual adjustments for you your partner or both of you e Inability to talk about sex with your partner Help for Impotence Millions of men and their partners suffer with impotence There are many reasons for it physical changes diseases such as
19. son Merck Consumer Pharmaceuticals Co Ft Washington Pa and Phazyme Glaxo SmithKline Philadelphia Pa are effective in reducing gas Dietary supplements such as Beano Glaxo SmithKline Philadelphia Pa are also quite effective in reducing gas related to the breakdown of complex sugars in gas causing foods and are available as tablets or drops Avoid gassy foods such as cabbage sodas beer beans and chili if you know you re going to be sexually active If you have an ileostomy or a colostomy gas filters are available in both drainable and closed end pouches These help to keep the pouch flat and deodorize gas e Odor If you have a urostomy avoid foods that cause strong odor in the urine such as asparagus Bismuth subgallate charcoal or chlorophyllin copper complex are effective in managing odor Check with your doctor or WOC ET Nurse before taking or using any of these products Bismuth subgallate tablets have been used as oral deodorizers for years They do darken and thicken stool and have side effects with long term use that cease when the drug is discontinued They can also be used in the pouch Example Devrom Parthenon Activated charcoal has been used orally to reduce fecal odor but can darken the stool and cause constipation However there doesn t seem to be any reduction in odor with oral doses of charcoal for patients with a colostomy Many closed end and drainable pouches have built in charcoa
20. t It s easy to blame the ostomy for these feelings and problems It s time to sort through these things and decide if they are really from your surgery and illness or ancient history the sexual baggage you are carrying around with you Be honest with yourself and take some time to think about it and discuss things with your partner Seek professional help from a counselor your physician or a sex therapist Talking really helps Common Reactions to Ostomy Surgery That May Interfere with the Ability to Share Sex Embarrassment Shame Fear of pain leakage rejection being naked Anger Depression 11 Physical Changes Caused by Ostomy Surgery Because ostomy surgery takes place in the pelvis and parts or all of some of the organs there are removed it makes sense that sexual functioning afterwards could be affected However the changes that can occur in men are quite different than those that can occur in women Also the type of ostomy operation you ve had ileostomy colostomy urostomy and the reason you ve had it for example cancer of the rectum versus Crohn s Disease play a role in what physical changes have been made and the specific affect it will have on your sexual response For example a man who s had an abdominoperineal resection for cancer of the rectum may have difficulty getting or keeping an erection after surgery Because the man had cancer the surgeon had to remove a bigger portion of tissue around the r
21. the most important things you can do to strengthen your intimate relationship is to talk to your sexual partner Face it It s tough to have sexual intimacies without exposing the stoma or the pouch However when your re in the midst of passion and heat it s probably not the best time to teach your partner about an ostomy We now have communication systems that allow someone on earth to talk to someone in space or on the moon but we often cannot talk to the ones we love about what we feel what is in our heart and what we want and need Most people are totally unfamiliar with ostomy surgery and have no idea what a stoma looks like how it s connected to the abdomen how and when you empty your pouch or how it has or has not affected your ability to have sex If you find someone or are already in a relationship with whom a sexual relationship is desired you ll need to decide how and when you want to tell and how much you want to share Research has indicated that partners of people with an ostomy worry about all these things too A lack of correct information can increase these worries and inhibit sex so it s to your advantage to teach your partner If the partner is worried about hurting the stoma don t misinterpret this as a rejection An intimate relationship is one in which it matters how well you can communicate about two of the most personal of human functions body elimination and sex Your partner will take the
22. w cancer org Crohn s and Colitis Foundation of America www ccfa org Glossary of Terms Body image the way a person views how his or her body looks smells and appears to others Erectile dysfunction also called E D See impotence Erection a penis that is hard or rigid enough for sexual activity Ejaculation release of sperm from the penis Hormones substances formed in certain glands in the body that enter the bloodstream and affect or control the activity of some organs The so called sex hormones are estrogen the female hormone and testosterone the male hormone Adequate levels of sex hormones are needed for optimal sexual functioning Impotence the inability to have an erection that is firm enough or Libido lasts long enough for successful intercourse Also called erectile dysfunction or ED Impotence is not the same thing as being sterile the urge or desire to have sex Masturbation self stimulation of the sex organs 21 Orgasm Sterility the climax of intercourse or masturbation A total body response at the height of sexual excitement The sudden release of pooled blood in the sex organs and tension in the muscles Male sterility is a lack of sperm or enough healthy sperm that makes it possible to make a woman pregnant Female sterility means the absence of a uterus to carry a child or the inability to become pregnant 22
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