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Keywords:

  • Sexual health;
  • Psychology;
  • Inflammatory bowel disease

Abstract

  1. Top of page
  2. Abstract
  3. Psychological Impact
  4. Implications of Psychological Impact and Difficulties Eliciting Information
  5. Case Example 1
  6. Case Example 2
  7. Evaluating Relationship and Sexual Functioning
  8. Gynecological Issues
  9. Pregnancy
  10. Case Example 3
  11. Sexual Functioning in Surgical Patients with Ibd
  12. Case Example 4
  13. Conclusion
  14. Acknowledgements
  15. References

Inflammatory bowel disease (IBD) has an impact on the quality of life of women regarding partner relationships and sexual health. Partner relationship and sexual health in women with IBD has been targeted minimally for investigation in the literature devoted to psychological, relationship, and sexual functioning. The purpose of the present article is to describe the concerns of women with IBD, specifically evaluating individual concerns, partner relationships, and sexual functioning after surgery and to elucidate some of the difficulties in identifying such problems. Gynecologic issues and pregnancy concerns are described. Actual case studies are presented that reveal many of the difficulties women with IBD encounter in their relationships as a consequence of disease activity and treatment interventions. Additional research evaluating relationship difficulties, sexual comfort, and sexual behaviors as a consequence of disease activity is required to understand further and improve the quality of life and well-being of these women.

Inflammatory bowel diseases (IBD), including both Crohn's disease (CD) and ulcerative colitis (UC), are prevalent, distressing, and often misunderstood chronic illnesses that can have a major impact on women's sexuality and quality of life. Yet, despite the increasing attention paid to most chronic diseases, these diseases have tended to be underresearched in both the behavioral medicine and sexuality literature. There are approximately one million reported individuals with IBD in the United States (1–3). There are no significant gender differences among those with ulcerative colitis; the male-to-female ratio for those with Crohn's disease is 1:1.8 (4). Additionally, females have a 20% to 30% greater risk than males of developing Crohn's disease (5). Approximately 40% of the female population experiences some type of sexual difficulty (6). Because of the paucity of literature in this specialized area, the number of women with IBD who have comorbid sexual difficulties can be estimated to be approximately 440,000. This article will review these disorders in the context of relationship and sexual health, including the potential effects on female sexual, reproductive, and gynecologic health. It will describe difficulties in identifying such problems with these women and conclude with suggestions for future research.

Psychological Impact

  1. Top of page
  2. Abstract
  3. Psychological Impact
  4. Implications of Psychological Impact and Difficulties Eliciting Information
  5. Case Example 1
  6. Case Example 2
  7. Evaluating Relationship and Sexual Functioning
  8. Gynecological Issues
  9. Pregnancy
  10. Case Example 3
  11. Sexual Functioning in Surgical Patients with Ibd
  12. Case Example 4
  13. Conclusion
  14. Acknowledgements
  15. References

Individuals with IBD encounter unique psychologic issues in addition to the difficulties of living with a chronic disease. Individuals with IBD often have physical symptoms that are not considered socially acceptable, and the symptoms may be frightening because of their intensity. For instance, defecatory urgency during social situations may be embarrassing and difficult when it occurs frequently. Moreover, these diseases tend not to be readily discussed either publicly or privately; consequently, information on the impact of such illnesses on interpersonal relationships and sexuality is limited and often difficult to obtain for research purposes.

Although there is an abundance of research addressing the medical aspects of IBD, the psychosexual impact of these diseases is usually not targeted for investigation (7–9). Thus, obtaining quantifiable, comprehensive data may assist the understanding of the individual's illness experience and its impact on relationship and sexual health (7–9). Despite the dubious role of psychologic processes as a primary cause or contributor to the exacerbation of IBD, it is clear that these illnesses exact a psychologic toll on the individual (7–13). For instance, reviews of past research on frequency of psychiatric diagnosis in IBD patients demonstrate that such diagnoses range from 13% to 100% (14). Disagreement in sample environments (e.g., surveys in the community versus referrals in medical centers), lack of control groups, retrospective studies, small sample sizes, referral bias, and the use of different, inappropriate, or invalid assessment tools represent the methodological problems that exacerbate the difficulty in establishing conclusive, generalizable results (10,12,14,15). As a result of such difficulties, few empirical studies pertaining to relationship and sexual difficulties exist; however, research investigating relationship and sexual difficulties, although still uncommon, is increasing.

Implications of Psychological Impact and Difficulties Eliciting Information

  1. Top of page
  2. Abstract
  3. Psychological Impact
  4. Implications of Psychological Impact and Difficulties Eliciting Information
  5. Case Example 1
  6. Case Example 2
  7. Evaluating Relationship and Sexual Functioning
  8. Gynecological Issues
  9. Pregnancy
  10. Case Example 3
  11. Sexual Functioning in Surgical Patients with Ibd
  12. Case Example 4
  13. Conclusion
  14. Acknowledgements
  15. References

Recent research indicates that including psychosocial evaluation and considering psychologic disturbances are helpful to patient care (7–10,12,13). The assessment of relationship and sexual health, especially among women with IBD, is integral in the implementation of a biopsychosocial approach to treatment (5,7–9,13) and essential to detecting sexual dysfunction. Sexual dysfunction cannot be treated unless it is identified. Unfortunately, women are less likely to volunteer such information to a primary care physician or gastroenterologist (especially if the physician is male); sexuality is almost as private as defecation. Hence, the burden lies on the physician to create the supportive environment and relationship that facilitates such discussions.

Discussion of sexual health in the context of disease activity opens communication and facilitates psychosocial adjustment to living with these diseases. Unfortunately, most patients do not discuss such issues (e.g., sexuality, body image, and effect on relationships) with their physician, who is typically one of the few individuals with whom patients do discuss their disease. Moreover, the likelihood of such discussions occurring elsewhere in their lives is minimal.

Few studies have examined the impact of these diseases on interpersonal relationships or sexuality (7). Physicians are busy and time constraints may hinder the physician's ability to evaluate such issues during the course of routine outpatient evaluation. Most physicians do not customarily address relationship or sexual concerns with their patients, even in the presence of known pathology. Moreover, most patients, especially those in a female patient–male doctor dynamic, do not volunteer problems with relationship and sexual functioning to their gastroenterologists. Consequently, difficulties identifying relationship and sexual health problems that are caused, either directly or indirectly, by disease activity may be undetected. Furthermore, because of the private nature of sexuality, both physicians and patients may feel uncomfortable discussing such issues. Finally, those physicians who are comfortable discussing issues that pertain to partner relationships and sexuality may not feel appropriately trained to assess such issues and refer to a psychiatrist or psychologist, who, although trained to assess these issues, may not be well-versed in IBD. Consequently, difficulties with relationship and sexual functioning in women with IBD ideally should receive a multidisciplinary approach to treatment.

Women with these diseases may find forming new relationships especially challenging, and may be fearful of rejection (16). Behaviors that are “hidden,” such as chronic diarrhea and abdominal pain, are especially difficult to discuss given that it is unclear as to when to disclose such information. Some level of trust and closeness must be felt before disclosure can be contemplated (16), regardless of whether disclosure is to a partner or a physician. Some women report that although disclosure is difficult, it increases intimacy and relieves anxiety. “If I hadn't said anything to him about my illness, I would still feel nervous when we were sexually active. I am glad I told him when I did, now I don't have to worry about it anymore” (Jane Doe, personal communication from a GI outpatient clinic, 1999).

With diseases such as CD and UC, both direct (e.g., fatigue, constant diarrhea, abdominal pain) and indirect (e.g., side effects of medication, consequences of surgery) effects of these diseases can disrupt body image, sexual functioning, and interpersonal relationships. For instance, some medications may cause oral infections such as candidiasis (13). The simple act of kissing may become aversive because of such a side effect. For most individuals, bathroom habits and GI disturbances such as flatulence or diarrhea are intensely private acts. In fact, they are often used as topics of ridicule, considered socially unacceptable by American society. Consequently, lack of discussion facilitates the social stigma attached to these diseases. How does one speak openly and honestly about society's unspeakable topics? Fears regarding conception, attractiveness, and potential partner relationship difficulties are common among women with IBD (7).

In conducting informal interviews with couples attending an outpatient GI clinic, preliminary anecdotal data was obtained. All of the individuals agreed that forthright discussion of their illness, even with an intimate partner, was difficult.

Case Example 1

  1. Top of page
  2. Abstract
  3. Psychological Impact
  4. Implications of Psychological Impact and Difficulties Eliciting Information
  5. Case Example 1
  6. Case Example 2
  7. Evaluating Relationship and Sexual Functioning
  8. Gynecological Issues
  9. Pregnancy
  10. Case Example 3
  11. Sexual Functioning in Surgical Patients with Ibd
  12. Case Example 4
  13. Conclusion
  14. Acknowledgements
  15. References

Impact On Relationships

Max and Molly are a couple in their mid 30s, married for 7 years. They presented to the GI clinic because of Molly's ulcerative colitis, which became active. Max requested relationship psychotherapy because of his wife's “withdrawal” during periods of disease activity. Molly had had ulcerative colitis for approximately 10 years, and had been successfully controlling her disease activity with medication therapy since her diagnosis. Over the previous 2 months, Molly had been experiencing a flare-up involving frequent diarrhea, abdominal pain, and urgency, which caused her to have occasional “accidents.” Max reported that she had become increasingly withdrawn, lethargic, and moody during this time. They had not had intercourse subsequent to her flare-up 2 months before.

Molly was amenable to psychotherapy but resistant to admitting or discussing relationship and sexual difficulties. Max reported that when Molly was ill, she avoided physical affection and was unwilling to discuss her feelings pertaining to her distinct change in behavior. Molly stated that her behavior changes were a result of feeling tired and lethargic as a consequence of active disease (i.e., frequent defecation). Max said that he was frustrated and hurt by Molly's behavior and felt rejected. He described their relationship, saying, “It's different when she doesn't feel well. She doesn't let me in and I don't know what to do about it. I don't know what to do to make her feel better.”

Case Discussion and Analysis

Max experienced difficulty with Molly's avoidance because he felt helpless and wanted to assuage her ill feelings. He felt as though Molly isolated herself, as if “her problem” was not “their problem.” Although Max understood her lack of sexual desire and demonstrated compassion, he felt shut out. He also noted that when she felt well, she acted as though the disease did not exist. Molly did feel as though she was a “different person” when her disease was active; she isolated herself because of her lack of desire and ability to identify and communicate her feelings to her spouse. Moreover, Max suggested that if Molly had simply stated how she felt, he would have felt included in “her world.”

The case clearly elucidates the communication difficulties that arise between partners as a result of disease activity. It illustrates that both direct (frequent diarrhea and abdominal pain) and indirect (communication difficulties, lack of affection) effects of disease activity impact both relationship and sexual functioning. Also noteworthy is that Molly presented for psychotherapy as a result of her husband's request that she talk about her “depression,” demonstrating the likelihood of comorbid psychologic difficulties. The relationship and sexual difficulties were detected as a result of the psychologist's routine initial interviewing, as well as the acknowledgment that both partners would clearly be involved in the treatment. If relationship and sexual functioning had not been evaluated, it is unlikely such difficulties would have been identified.

Although IBD patients undergo an adjustment to chronic illness that individuals with other chronic illnesses encounter, those with IBD often feel an additional burden of shame. Women with these diseases, especially, live with unpredictable symptoms that exact psychologic and emotional tolls (12,17,18). Defecation is a natural physical function; however, on a constant or unpredictable basis, these symptoms may facilitate feelings of shame, decreasing both body and sexual self-image. Spending a significant amount of time during the day on a toilet may not promote a healthy body image or positive feelings regarding genitalia. The unpredictability of these diseases and the fear of unexpected symptoms may permeate self-esteem and psyche in an insidious manner (9). Additionally, symptoms themselves may be frightening because of their intensity. For instance, the urgency of having to use a bathroom and ‘having an accident’ in adulthood may significantly affect an individual's sense of psychologic and sexual self-confidence. For men, gaseous odors and flatulence, while undesirable, are almost expected by sociocultural norms. In contrast, women with similar symptoms may be viewed as unfeminine, which is a great motivator for secrecy.

The sexual self-image of women with IBD is influenced by the combination of societal attitudes generally (9,16), and by the insidious nature of experiencing socially unacceptable symptoms. Women report greater symptom severity and have higher scores on patient concerns than do men (7). Fears of being viewed as “sick” might also affect self-image and erode sexual confidence. Women with spinal cord injuries, for example, reported that the greatest change after surgery was in their perceived attractiveness; they found themselves less attractive by 50% on average (20). In most cases, the woman's overall appearance had not changed markedly, suggesting that one's sense of attractiveness is more dependent on internal feelings rather than outward appearance. A parallel may be drawn between these women and IBD patients, who rarely appear sick but nevertheless feel the ramifications of their disease permeate their daily living activities. Moreover, insecurity about fecal incontinence during sexual intercourse can strongly inhibit sexual motivation (9,16,21). Physicians may provide validation and psychoeducational information by initiating discussion of the woman's relationship and sexual functioning and health (13,16,22).

Unfortunately, keeping quiet may not fare well with respect to relationship and sexual health. In speaking with couples, it is often the healthy partner who recounts how the identified patient refuses to discuss his or her illness or his or her feelings surrounding it. Anxiety regarding possible symptoms of disease inhibits sexual drive and activity and may be representative of one of the difficulties that individuals with these illnesses encounter.

Case Example 2

  1. Top of page
  2. Abstract
  3. Psychological Impact
  4. Implications of Psychological Impact and Difficulties Eliciting Information
  5. Case Example 1
  6. Case Example 2
  7. Evaluating Relationship and Sexual Functioning
  8. Gynecological Issues
  9. Pregnancy
  10. Case Example 3
  11. Sexual Functioning in Surgical Patients with Ibd
  12. Case Example 4
  13. Conclusion
  14. Acknowledgements
  15. References

Body and Sexual Self-Image

Audrey is a single 19-year-old female who was diagnosed with CD at the age of 17. Until recently her disease was maintained with medication therapy, but in the previous 6 months, medications were unable to control her disease, and surgery was recommended. Audrey reported feeling “sick of being sick. I just want to feel OK and do the things that my friends do.” Audrey is in a sorority and frequently attends fraternity parties with her peers. She has not told anyone outside of her immediate family that she has CD. She presented for psychotherapy after a recent incident that occurred at a fraternity party and because of her anxiety about her upcoming operation.

Audrey attended a fraternity party where she had been drinking alcohol heavily, even though it exacerbated her colitis. During the party, she was forced to wait in line for the use of the restroom. Although she tried, she could not contain herself and defecated in her clothing in the hallway of the fraternity house. Some of the other drunken students noticed and proceeded to ostracize her, both for the odor and her inability to control herself. Audrey stated, “I'm so embarrassed and ashamed. No one will ever date me now.”

Case Discussion and Analysis

Although this case elucidates the ostracism that may be experienced among younger individuals, it also demonstrates the impact the disease may have on young women's body image, sexuality, and interpersonal relationships. Perhaps Audrey should not have been drinking, and the other students should not have ostracized her for her accident. Nonetheless, the interaction cannot be discounted with regard to its influence on Audrey's body and sexual self-image.

Audrey stated many times during psychotherapy that she no longer felt attractive or sexy. Moreover, she was concerned that the scar from the upcoming operation would further ‘wreck my body.’ Clearly, Audrey perceived her body as damaged. Her poor body image and perceived lack of attractiveness promoted her secrecy with regard to her disease. She stated, “If people don't know, they won't think differently of me.” Although there is little empirical evidence to support the claim that poor body and sexual self-image facilitates the disease remaining hidden, it is certainly plausible.

Evaluating Relationship and Sexual Functioning

  1. Top of page
  2. Abstract
  3. Psychological Impact
  4. Implications of Psychological Impact and Difficulties Eliciting Information
  5. Case Example 1
  6. Case Example 2
  7. Evaluating Relationship and Sexual Functioning
  8. Gynecological Issues
  9. Pregnancy
  10. Case Example 3
  11. Sexual Functioning in Surgical Patients with Ibd
  12. Case Example 4
  13. Conclusion
  14. Acknowledgements
  15. References

Although relationship and sexual functioning is typically assessed as part of a psychologic evaluation in the context of psychotherapy, it typically is not evaluated in a gastroenterologist's office. Patient knowledge and education have become increasingly important in the management of all patients with IBD (12,23,24). For women with IBD, sexual difficulties in particular need to be evaluated concomitantly with the illness. Conversely, gynecologists may not typically inquire about the IBD activity. Because of the private nature of both sexuality and defecation, and the obvious dichotomy of the two topics, women are not likely to volunteer information on either topic to the alternate physician or health professional. In order for sexual dysfunction to be treated, it must be detected. Relationship and sexual health needs to be evaluated in a manner that is not perceived as threatening or invasive to the woman, especially when the physician is male. After the disease activity has been medically evaluated, it should be considered in the context of relationship and sexual health. An algorithm for the assessment and treatment of sexual dysfunction in women with IBD is suggested in Figure 1.

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Figure 1. An algorithm for clinical decision making in the assessment and treatment of sexual dysfunction. Stages are identified in the model, with each stage reflecting specific “processes,” “actions,” and “outcomes.” The importance of assessment and follow up, as well as patient education and communication aspects are depicted throughout the model. Adapted from (19).

Download figure to PowerPoint

Many new patients see gastroenterologists initially with their partner. Assessing relationship and sexual health at the onset of diagnosis allows the physician to obtain information regarding current, historical, or potential difficulties through an integrated interview approach that is easily explained to the patient. The patient is less likely to view such invasive questioning as “unusual,” and it facilitates questioning of relationship and sexual functioning by the physician at some future time. In addition to physician interviews, there are several assessment measures that are used specifically for evaluating relationship and sexual health and can be provided to the physician by a psychologist or psychiatrist.

Gynecological Issues

  1. Top of page
  2. Abstract
  3. Psychological Impact
  4. Implications of Psychological Impact and Difficulties Eliciting Information
  5. Case Example 1
  6. Case Example 2
  7. Evaluating Relationship and Sexual Functioning
  8. Gynecological Issues
  9. Pregnancy
  10. Case Example 3
  11. Sexual Functioning in Surgical Patients with Ibd
  12. Case Example 4
  13. Conclusion
  14. Acknowledgements
  15. References

Two main areas particularly affecting women with IBD are concerns about gynecologic issues and pregnancy. Ulcerative colitis patients generally do not experience gynecologic difficulties due to IBD; however, approximately 25% of all Crohn's disease patients incur some sort of gynecologic difficulty (25). For these women, the difficulties that are experienced are both physically painful and emotionally troublesome.

The gynecologic complications of Crohn's disease include irregularities in the menstrual cycle, long delays and amenorrhea, and pelvic masses (25). Treatments for these complications usually begin with antibiotics and immunosuppressives. If medical treatment fails, laparotomy is necessary to remove the segment of the intestine causing the problem, and, in some cases, an ileostomy is created. These complications can cause both pain and discomfort during intercourse (25). Additionally, abscesses and fistulas may interfere with an individual's ability to have intercourse or engage in other sexual activities.

Pregnancy

  1. Top of page
  2. Abstract
  3. Psychological Impact
  4. Implications of Psychological Impact and Difficulties Eliciting Information
  5. Case Example 1
  6. Case Example 2
  7. Evaluating Relationship and Sexual Functioning
  8. Gynecological Issues
  9. Pregnancy
  10. Case Example 3
  11. Sexual Functioning in Surgical Patients with Ibd
  12. Case Example 4
  13. Conclusion
  14. Acknowledgements
  15. References

Because peak age ranges of IBD and pregnancy coincide, it is likely that there will be an increasing number of pregnant women with IBD (2,26). Women with IBD demonstrate increased concern regarding the impact of these diseases on fertility, pregnancy, and risk of inheritance (2,17,27,28). Generally, fertility is unaffected (29–29). The majority of IBD patients, at least 80%, will have normal reproductive function and give birth to healthy, full-term infants (27,29–31). In men, sulfasalazine causes reversible changes in spermatozoa that may lead to a temporary decrease in fertility; however, the new 5-ASA compounds do not seem to affect sperm motility or fertility (27). According to Burakoff (31), disease activity, not drug therapy, accounts for the majority of complications during pregnancy; however, if a woman is experiencing gynecologic complications of disease, the ability to engage in intercourse may be hindered. For those women who undergo multiple operations, scar tissue surrounding the fallopian tubes and the ovaries may result in immobility of fallopian tubes and infertility. In these instances, in vitro fertilization is usually necessary.

Active disease is not a contraindication to pregnancy because it can be controlled with medication therapy. There is, however, a two-to three-times greater likelihood of spontaneous abortion or preterm birth in women with active disease (27–29,31). Consequently, some recommend that pregnancy be delayed until the disease activity becomes quiescent (17,32). The risk to the fetus is greater because of active disease and not the medications used in treatment. Moser et al. (33) found that active inflammation in pregnant women was a significant predictor of small gestational age of neonates. Hence, three major concerns when treating pregnant women with IBD include effects of IBD on the pregnancy, effects of the pregnancy on IBD, and potential risks to the neonate. Women may also be fearful of pregnancy as a consequence of cautions stated by the treating physician (2). Pregnant women with IBD also have to concern themselves with proper nutrition and medical monitoring (Table 1).

Table 1. Reproductive issues in women with IBD
Fertility rates for women with IBD are the same as those for healthy women of similar age
IBD does not influence the age of onset for menopause
Active disease
 Increased risk of miscarriage and stillbirth
 At conception, disease remains active or worsens 65% of the time
Inactive Disease
 Outcome of pregnancy is the same as in the healthy population
 Relapses are at the same rate as in nonpregnant women
Preterm birth is increased in women with IBD
In pregnant women with inactive disease, relapses when they occur, usually occur in the first trimester or postpartum.

According to Saubermann and Wolf (27), the relapse rate is not increased in pregnant women with inactive UC compared with nonpregnant women. If a relapse does occur, it is usually during the first trimester of pregnancy or following delivery, with the rate of relapse approximately 34% for women with UC (27,30). In active UC, approximately 46% of women experience an increase in symptoms in pregnancy (27,30). In Crohn's disease the rate of relapse for inactive disease in pregnant women is approximately 27% (27). Relapses usually occur in the first trimester or following delivery in CD patients. Approximately 33% of women with CD will notice an exacerbation of symptoms (27). The risk of flare up in IBD in future pregnancies is unknown.

Most women want to avoid use of any medications during their pregnancy; however, it is often necessary for pregnant women with IBD to continue taking medication for the sake of their health. Maintaining remission is very important during the course of pregnancy (31). Most of the medications used in IBD are safe during pregnancy and breast feeding (Table 2) (27); however, for women with perianal or anal disease, Cesarean section should be considered with the hope of avoiding rectal complications following a vaginal delivery.

Table 2. Pharmacotherapy of inflammatory bowel disease in pregnancy
  1. Adapted from (27).

Loperamide may be used to control diarrhea
Sulfasalazine and mesalamine are safe for use during pregnancy
Azathioprine and 6-mercaptop urine have not been shown to increase rates of birth defects
Cyclosporine A is associated with a 40% risk of premature birth
Methotrexate and thalidomide should not be used

Case Example 3

  1. Top of page
  2. Abstract
  3. Psychological Impact
  4. Implications of Psychological Impact and Difficulties Eliciting Information
  5. Case Example 1
  6. Case Example 2
  7. Evaluating Relationship and Sexual Functioning
  8. Gynecological Issues
  9. Pregnancy
  10. Case Example 3
  11. Sexual Functioning in Surgical Patients with Ibd
  12. Case Example 4
  13. Conclusion
  14. Acknowledgements
  15. References

Pregnancy and Ulcerative Colitis

Joan is a married 37-year-old white female who was diagnosed with UC at the age of 23. Over the course of the previous 14 years, her disease activity waxed and waned but was controlled with medical therapy. Approximately 2 years ago, she and her husband decided they wanted to have a child. Joan's disease was quiescent, but controlled with a maintenance dosage of a 5-ASA compound. Joan ceased her medication on her own as she did not want to take medication if pregnancy occurred. She became pregnant shortly thereafter. In the middle of her first trimester, she began having symptoms that included painful diarrhea and abdominal pain. Her physician placed her on a 5-ASA compound and monitored her nutrition closely, to maintain Joan's nutrition and that of the fetus. Joan spent a substantial amount of time in bed during the last two months of her pregnancy owing to lethargy. The baby was born a healthy, full-term infant. Once Joan delivered, her symptoms increased, as did the need for medication. She presented for psychotherapy 3 weeks after delivery with symptoms of depression.

Case Discussion and Analysis

This case illustrates that with proper medical management, a healthy full-term infant was delivered with minor difficulty. It also exemplifies difficulties patients experience in adhering to medical regimens and the psychologic sequelae of pregnant women who have active disease. In a woman's effort not to harm unborn children with medication, her own health is sometimes placed at risk. Pregnant women with IBD, not unlike others with the disease, frequently misunderstand the purpose of maintenance medication and its implications during the course of pregnancy. Without proper medication controlling disease activity, the risk of recurrence is increased. Dispensing psychoeducational information about pregnancy and nutritional issues of concern to these women might alleviate some of the difficulties physicians experience in treating pregnant women with IBD.

Sexual Functioning in Surgical Patients with Ibd

  1. Top of page
  2. Abstract
  3. Psychological Impact
  4. Implications of Psychological Impact and Difficulties Eliciting Information
  5. Case Example 1
  6. Case Example 2
  7. Evaluating Relationship and Sexual Functioning
  8. Gynecological Issues
  9. Pregnancy
  10. Case Example 3
  11. Sexual Functioning in Surgical Patients with Ibd
  12. Case Example 4
  13. Conclusion
  14. Acknowledgements
  15. References

For people who undergo surgical interventions for their disease, social and sexual functioning is a concern (9,34). An estimated 25% of patients with ulcerative colitis will require surgery within 10 years of their diagnosis (34), and an estimated 70% of Crohn's disease patients will require surgery within 20 years of their diagnosis (35). Although the types of surgical interventions for IBD are beyond the scope of this article, several studies examined social and sexual functioning in women postoperatively (36–42). Some investigations reported that 26% of women complained of dyspareunia following pelvic surgery (9). Most of the investigations reported that because of improved general health postoperatively, women experienced enhanced sexual functioning (36,37,39).

Several studies found that sexual dysfunction did occur. For instance, in a study conducted by Scaglia et al. (40), 33% of 71 women under the age of 40 reported an impaired quality of sexual life, and 22% complained of reduced sexual satisfaction postoperatively. After surgery, 49% of these women had a distressing vaginal discharge, compared with 9% before surgery. The investigators also found that 12% of women reported dyspareunia before surgery and 27% recounted dyspareunia afterwards; however, a study conducted by Damgaard et al. (37) described discrepant findings. In their study, 35% of 23 women stated that the frequency of intercourse increased, none reported a decrease in sexual functioning, and 16% reported an increased quality of orgasm. Poor rapport between partners following surgery correlated with poor sexual relations before surgery (43), indicating the importance of effective communication and support in interpersonal relationships. Gloeckner (44) reported that patients wished their partners had been included in sexual counseling postoperatively. Among IBD patients' concerns, uncertainty of disease activity, energy level, being a burden on others, and producing unpleasant odors were among the top 10 concerns (12); ‘feelings about my body’ and ‘attractiveness’ were numbers 11 and 14, respectively (12). Given these concerns, it is not surprising that relationship and sexual functioning is affected. Because of the limited amount of empirical data, conflicting findings, and small sample sizes, conclusions regarding the impact of surgery on women's sexual health must be interpreted cautiously. Further investigations are required before generalizations can be drawn. Nevertheless, operations do have a psychologic and emotional impact on women.

Case Example 4

  1. Top of page
  2. Abstract
  3. Psychological Impact
  4. Implications of Psychological Impact and Difficulties Eliciting Information
  5. Case Example 1
  6. Case Example 2
  7. Evaluating Relationship and Sexual Functioning
  8. Gynecological Issues
  9. Pregnancy
  10. Case Example 3
  11. Sexual Functioning in Surgical Patients with Ibd
  12. Case Example 4
  13. Conclusion
  14. Acknowledgements
  15. References

Consequences of Surgery

Marge is a 34-year-old married woman with CD. She was initially diagnosed with UC, and underwent an ileoanal anastamoses at the age of 16. Some years later, physicians recognized that she had CD because of recurring diarrhea, abdominal pain, and extraintestinal manifestations. Multiple resections over the years resulted in an extensive amount of scar tissue attaching to one of her fallopian tubes. When an ileostomy replaced her J-pouch, her symptoms returned within 6 months, and a fallopian tube was removed. Marge and her husband would like to have a child, and even without her fallopian tube, she should be able to carry a baby full term with in vitro fertilization. She presented for psychotherapy because of her frustration with her disease.

Marge was married twice before her current marriage. Although she had IBD for many years, she reported that she always had difficulty discussing her disease with her marital or relationship partners. Moreover, she stated that in all three of her marriages, the topic of her illness was rarely discussed. She underwent her ileostomy a short while after her third marriage, and stated it was “difficult,” but even during the course of the interview, she was uncomfortable communicating her feelings to the therapist. She reported many concerns regarding her perception of her sexuality. Some sessions later, Marge said that she had an affair with another man simply to see if she would be sexually desirable to someone other than her husband “despite the ostomy.” She admittedly engaged in extramarital relations owing to her need for sexual validation. The affair ended almost immediately.

Although she reported that sexual intercourse was “good” with her husband, she stated that she feels as though “the bag” has changed her sexual repertoire. For example, she said that certain positions, which used to be enjoyable, are no longer comfortable for her. She also stated that she does not communicate her sexual wants and needs to her partner for fear that they will not be received well. She reported that when she feels well, she does not like to discuss her disease with her husband. “I like to pretend there are two me's—One with and one without Crohn's disease. When it isn't bothering me, I like to forget it exists.”

Case Discussion and Analysis

Although Marge was pleased to learn that she may still become pregnant, her anxiety and depression came to focus on potential problems that might occur during pregnancy. Like many people with illnesses associated with social stigma, Marge separated herself from her illness and functioned as if the disease does not exist when she feels healthy. Unfortunately, her inability to communicate her feelings to her partner thwarted acceptance of the reality of her disease. If Marge had discussed her feelings of sexuality with her husband, she might not have felt the need to seek affirmation of her sexuality outside the marriage. Moreover, her decision to withhold her feelings did little to facilitate acceptance of her disease by herself or her partner.

Conclusion

  1. Top of page
  2. Abstract
  3. Psychological Impact
  4. Implications of Psychological Impact and Difficulties Eliciting Information
  5. Case Example 1
  6. Case Example 2
  7. Evaluating Relationship and Sexual Functioning
  8. Gynecological Issues
  9. Pregnancy
  10. Case Example 3
  11. Sexual Functioning in Surgical Patients with Ibd
  12. Case Example 4
  13. Conclusion
  14. Acknowledgements
  15. References

Psychosocial aspects of IBD as they relate to interpersonal relationships, body and sexual self-image, pregnancy, and surgery are topics that women need to explore and discuss with their physicians and significant others to facilitate adjustment to these diseases (13). Effective communication not only between partners but also between patient and physician is essential to adequately address the psychosocial and emotional consequences of these women in the context of their sexual identities and interpersonal relationships. The body occupies a central part of a woman's self-perception (42,43). Alteration of one's body in any manner may affect an individual's self-perception, which may lead to difficulties in relationship and sexual health.

The loss of control over elimination is a blow to self-esteem and promulgates fears of rejection by family and friends, and of being ostracized by society (44). Feelings of isolation, social stigma, and depression may lead to loss of sexual desire and interest. Difficulties with personal acceptance, body and sexual self-image, sexual concerns, and potential operations may impact relationship and sexual functioning but can be ameliorated with appropriate counseling (45). Moreover, sexual partners play key roles in helping the identified patient adjust to his or her illness, through both psychologic and sexual validation. When possible, partners should be included when addressing relationship and sexual issues that might be a consequence of disease activity. By addressing the problems and fears pertaining to relationship and sexual health at the onset of diagnosis, future difficulties may be circumvented and psychosocial adjustment might be facilitated.

Future research in this area might include demographic information on partner relationships among IBD patients. One might investigate the sexual activity of these individuals to see if, in fact, sexual functioning is reported to be ‘different’ in some manner before and following diagnoses. If women with IBD are not sexually active, why not? Lack of sexual activity may or may not be influenced by active disease. Epidemiologic studies specifically pertaining to women's health issues (e.g., how many women actually do have sexual difficulties) comorbid with IBD would also be of assistance to the treatment of women with these diseases. It would also be interesting to note changes in sexual self-perception as a consequence of illness. If women are reporting feeling differently about their sexual identities, then psychoeducational information, and psychotherapy may assist in the adjustment process.

The areas of perceived changes in relationship and sexual health are also noteworthy. Scars from surgery may make women more self-conscious. Body and sexual image may vacillate with disease activity. Sexual activities may vary as a consequence of women's altered self-perception. Lubrication, desire, arousal, and dyspareunia may increase or decrease as a function of disease activity. Unfortunately, these are not commonly asked questions during a routine GI outpatient office visit. Interviews that assess sexual comfort and behavior as a function of disease activity, relationship difficulties, and premorbid functioning, provide important information in improving quality of life and well-being.

References

  1. Top of page
  2. Abstract
  3. Psychological Impact
  4. Implications of Psychological Impact and Difficulties Eliciting Information
  5. Case Example 1
  6. Case Example 2
  7. Evaluating Relationship and Sexual Functioning
  8. Gynecological Issues
  9. Pregnancy
  10. Case Example 3
  11. Sexual Functioning in Surgical Patients with Ibd
  12. Case Example 4
  13. Conclusion
  14. Acknowledgements
  15. References
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