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Sexual Dysfunction in Inflammatory Bowel Disease

2007; Lippincott Williams & Wilkins; Volume: 102; Linguagem: Inglês

10.14309/00000434-200706001-00015

1572-0241

Marla C. Dubinsky,

Inflammatory Bowel Disease

Clinicians are busy and, quite frequently, they focus their attention and treatment on their patients' symptoms such as abdominal pain, diarrhea, and medication toxicity. The patients' first concern, however, is often how this disease is going to affect their quality of life and relationships. They want to know what to expect from the disease tomorrow and 5 and 10 yr from now. Regardless of their gender, patients with IBD are concerned, among other things, about if they can maintain relationships, if they will experience side effects from medications, if they will survive the disease course, if they will have an ostomy bag, if they can reach their full potential in college and career, and if they will become a burden to friends and family. In regard to their interpersonal relationships, all patients with IBD—married or single—are concerned with how the disease will impact those relationships. Unmarried patients who undergo an ostomy question if that will significantly impact their ability to meet people and to date. Other concerns include body image and self-image, especially in the face of an ostomy, and the impact of the disease on sexual activity and sexual functioning. Some of these concerns are more pertinent because of the patient's gender or age. Women with IBD express greater concerns about body image, attractiveness, and feeling alone as well as how the disease will affect their ability to have children, their intimacy, and their sexual performance (1). These are primary concerns when they are initially diagnosed with IBD. Men expressed specific concerns about relationships, performance, and fertility. Teenage patients already struggle to “fit in” without the stressors of IBD and its complications. In addition to some of the gender-specific concerns, teens have age-specific concerns. The clinician needs to help these patients feel grounded and empowered by their disease and not defined by it so that it does not affect their ability to have relationships in the future. One thing is clear: at the time of initial diagnosis, patients have little concern for the Crohn's disease activity index or how many bowel movements they are having. They care most about being able to maintain healthy emotional and sexual relationships. MAINTAINING A HEALTHY RELATIONSHIP Sexual and relationship health are not typically areas of scientific investigation, and people do not feel comfortable socially addressing these problems because both sex and defecation are personal and private. To address the relationship-related effects of IBD, the clinician must address the patient's role in a relationship as well as the potential physical problems that the disease and its treatment may cause. Clinicians generally do not learn in medical school how to teach patients to discuss sexual intimacy; however, patients must believe they have access to resources that can improve their quality of life. The clinician must impress upon patients the need to communicate, whether with the clinician, a nurse practitioner, a resource in the community, or the patient's mate. Patients have difficulties discussing these embarrassing and usually socially unacceptable behaviors; a health professional can help them understand that how they perceive themselves with this disease is how others will perceive them. IBD patients develop emotions that clinicians are not addressing. Patients are often challenged and afraid to disclose their issues with their partners. Patients need to understand that IBD not only affects them but also their partners. The partner often feels shut out, angry, and helpless. They often feel worried, concerned, frustrated, sad, angry, and guilty. The patient also feels worry, concern, frustration, sadness, helplessness, anger, and guilt. The clinician can help the patient and the partner to communicate these shared emotions. The Impact of IBD on Sexuality Very little literature addresses IBD and sexuality. Of the general population, 40% of women report sexual difficulties. That rate increases to 60–75% of women with IBD (2). Relationships in general are challenging, and adding a chronic disease can affect the patient's ability to experience sexual intimacy. Fatigue, infection, diminished libido, and steroid-related side effects can affect sexual activity. Often patients with IBD feel unattractive and less than sexy. This is particularly true when patients have ostomies and may experience altered body image. Self-esteem can be affected such that patients may feel inferior, and the fear for some patients of being alone may keep some people in weak relationships. These patients may benefit from participating in a support group or therapy. Patients also struggle with the loss of former identity, especially women who feel the social pressures of looking and feeling sexy, dressing a certain way, and not having stool expulsed into an ostomy bag. That is not the glamour seen in magazines. The complications of IBD can have a physical impact on sexual activity and can make it an unpleasant and potentially painful experience. These complications can be secondary to perianal disease, arthritic deformities, or dyspareunia associated with pelvic surgery. Dyspareunia is reported in up to 25% of patients who have scarring and adhesions of the pelvis (3). Because of the surgery, female patients have anatomical changes in the position of the vagina and the uterus and may experience vaginal drying or fecal incontinence. Additional physical impediments include lower energy, surgical scars, stomas, and medication side effects. If clinicians are not comfortable talking to patients about these issues, they need refer the patient to a clinician or therapist who is. The Effect of Surgery on Sexual Activity Research on how frequent intercourse is after an ileal-pouch anal anastomosis (IPAA) showed that, before the operation, most patients had lower sexual activity. None of the patients interviewed had greater sexual activity, compared to baseline, before their disease was in place; however, after they had their pouches, a greater percentage of them had greater sexual activity (4). If colorectal surgeons and clinicians ask patients whether their sex life has improved after their pouch, the majority will say yes. In a study of patients who had restorative proctocolectomies, 86% of patients were moderately to extremely satisfied with their sexual relationships. A small proportion of patients felt that their sexual activity and sex life was less than satisfactory (5). Clinicians need to emphasize that surgery often improves quality of life and sexual function. IBD patients have concerns on if ostomies will make them feel unsexy, unattractive, and “dirty.” These patients often perceive themselves as less attractive and less desirable and therefore decrease their own sexual attractiveness. Their issue is often not with the odor or the stoma itself but is related to the actual appliance. Patients may refer to their insecurities as vanity and express that they need to move past the issues if surgery will improve their lives. They often experience more psychological than physical complications because they are not significantly physically impaired. Clinicians know that relationships and sexual activity are important and must obtain the necessary support for IBD patients who are considering or needing ostomies. The Impact of Disease on Fertility Surgeons and clinicians must speak openly and honestly with their patients, especially those undergoing pelvic surgery. The patient needs to know about the potential side effects before undergoing surgery. Lower fertility is one such potential side effect. Fertility success appears to be higher for ulcerative colitis, as compared to Crohn's disease, and reduced fertility is typically related to disease activity (6). The research shows that in Crohn's disease, the decrease is a response of voluntarily childlessness, meaning patients are voluntarily not having children (7). Regarding reproductive health and IBD, female patients need to specifically know about the possible effects of IBD-related pelvic surgery on their ability to conceive. Olson et al. published on the effect of IPAA on the fecundability rate (8). The investigators reported that fecundability was 80% reduced after IPAA compared to the general population and to the same patient before undergoing surgery. Some female patients with IBD may choose to undergo a three-stage procedure and consider reconnection after they have children because of this reduction in fecundability. Patients must, however, discuss this with their surgeons to evaluate timing and possibility of reanastomosis. Patients may choose to undergo in vitro fertilization if conception has not been successful as a result of reduced fecundability. The one medication that does impact male fertility is sulfasalazine, which may impact sperm motility and decrease sperm's ability to fertilize. Male patients taking sulfasalazine who report that their wives cannot get pregnant should stop taking sulfasalazine because it may impact their own ability to conceive. THE IMPACT OF PREGNANCY ON DISEASE AND THE EFFECT OF DISEASE ON PREGNANCY The effect of pregnancy on IBD and the effect of IBD on pregnancy are not mutually exclusive. For inactive ulcerative colitis patients who become pregnant, the relapse rate appears similar to that in nonpregnant ulcerative colitis patients (34%) and the risk tends to be highest in the first trimester (9). Conversely, of those patients with ulcerative colitis who became pregnant while their disease was active, 45% worsened and approximately 25–33% improved (10). For patients with inactive Crohn's disease, the relapse rate is also highest during the first trimester of pregnancy and is approximately 30%. The “Rule of Threes” can be applied to those patients getting pregnant with active Crohn's disease: one-third of patients stay the same, one-third improve, and one-third worsen (11). The clinician's priority must be to get patients into remission and keep them in remission so patients can have successful pregnancies. A case-controlled study by Porter and Stirrat showed no significant difference in pregnancy outcomes between women with IBD and controls, except for slightly lower birth weight and an increase in premature births (12). Some increase in spontaneous abortions in Crohn's disease (OR 1.86) and active first-trimester disease have been reported (13). No difference was seen in the obstetric outcomes between inactive and active cases except in the cesarean section rate, which was higher in IBD patients (14). Although IBD—particularly Crohn's disease—may decrease fertility, these disorders have no major effect on pregnancy outcomes and should not influence obstetrical management. The idea that there are no adverse effects on the pouch following delivery is a controversial one. Surgeons and obstetricians are divided as to whether cesarean sections or vaginal deliveries can be done safely with minimal complications in female patients who have undergone pouch surgery. Some data support that vaginal deliveries can occur, but it is really controversial and depends largely on the experience and preference of the patients' caregivers. There is consensus, however, that a patient with Crohn's disease and a history of perianal disease should undergo a cesarean section. Physicians are concerned about repair quality after episiotomy/vaginal tears if the perianal area has extensive or multiple areas of healed fistulae. In a study of women with no pre-existing history of perineal disease who underwent spontaneous vaginal deliveries, Brandt et al. demonstrated that at least 18% of the patients developed perineal disease after delivery, and this was highly correlated with episiotomy (15). CONCLUSION Clinicians must remember and address how alterations to the body affect a patient's self-perception as well as other people's perception of individuals with IBD. Ideally, the physician should address the patient's fears and concerns at diagnosis and approach issues in a subtle, casual way as far as the potential effect of IBD on sexual intimacy and relationships. Clinicians need to remind patients that there are multiple expressions of love in terms of caring and sexuality and that the disease involves both partners. Also, a multidisciplinary approach needs to be employed to improve the patient's quality of life and to address what they really care about, which is how the disease impacts their relationship and sexual health.