BACKGROUND: Inflammatory bowel diseases (IBD), comprising ulcerative colitis and Crohn's disease, have a profound impact on people's lives. This study aims to investigate the perceived impact of IBD on sexual life and family planning to enhance understanding of the interplay between IBD, sexuality, intimacy and family planning to foster a better quality of life for those living with the condition. MATERIALS AND METHODS: The study used the qualitative DIPEx method (Database of Personal Experiences of Health and Illness) developed by the Health Experiences Research Group at the University of Oxford, standardized for the Czech Republic. Semi-structured interviews with 36 participants (19 with Crohn's disease, 17 with ulcerative colitis) were conducted, employing open coding and thematic analysis. The maximum variation sampling was utilized, considering various factors, such as disease stage, medications, treatments, age, age at diagnosis and sociodemographic characteristics. RESULTS: Five main topics emerged: sexual activity, body image and discomfort, partner relationships, family planning, and the role of gastroenterologists in family planning decisions. Participants' perceptions of sexuality varied, with some experiencing reduced sexual activity during acute phases of the disease. IBD had contrasting effects on partner relationships, and family planning was an important concern, with women valuing support and collaboration with their gastroenterologists in making pregnancy decisions. Information dissemination and open communication from professionals are highly needed. CONCLUSIONS: This is the first study concerning the sexuality and family planning of people with IBD in the Czech Republic. It highlights the need for information and open communication from professionals.

Intimacy and Family Planning in Inflammatory Bowel Diseases. This study focuses on understanding how Inflammatory Bowel Diseases (IBD) like ulcerative colitis and Crohn’s disease affect personal aspects of life such as sexual activity, relationships, and decisions about starting a family. Through interviews with 36 individuals living with IBD, researchers found that these conditions can significantly impact one’s sex life, how they see themselves, their comfort with their bodies, and their relationships with partners. It also explored how people with IBD make decisions about having children, often needing more guidance and open conversations with their doctors. The findings emphasize the importance of clear communication and support from healthcare professionals to improve the quality of life for those with IBD. This research is a first of its kind in the Czech Republic.

Olomouc University Social Health Institute Univerzita Palackeho v Olomouci Olomouc Czech Republic

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Devlen J, Beusterien K, Yen L, et al. . The burden of inflammatory bowel disease: a patient-reported qualitative analysis and development of a conceptual model. Inflamm Bowel Dis. 2014;20(3):545–552. doi: 10.1097/01.Mib.0000440983.86659.81. PubMed DOI PMC

Zelinkova Z. Genetika nešpecifických črevných zápalov. In: Jurgoš Ľ, Kužela L, editors. Hrušovský Š a kol Gastroenterológia. Bratislava: Veda Bratislava; 2006. p. 351–353.

Bednarikova H, Kascakova N, Zelinkova Z, et al. . Attachment theory and inflammatory bowel disease. Ceskoslovenska Psychologie. 2019;63(2):226–238.

Bednarikova H, Kascakova N, Furstova J, et al. . Life stressors in patients with inflammatory bowel disease: comparison with a population-based healthy control group in the Czech Republic. Int J Environ Res Public Health. 2021;18(6):3237. doi: 10.3390/ijerph18063237. PubMed DOI PMC

Mittermaier C, Dejaco C, Waldhoer T, et al. . Impact of depressive mood on relapse in patients with inflammatory bowel disease: a prospective 18-month follow-up study. Psychosom Med. 2004;66(1):79–84. doi: 10.1097/01.Psy.0000106907.24881.F2. PubMed DOI

Sajadinejad MS, Asgari K, Molavi H, et al. . Psychological issues in inflammatory bowel disease: an overview. Gastroenterol Res Pract. 2012;2012:106502–106511. doi: 10.1155/2012/106502. PubMed DOI PMC

Ma S, Veysey M, Ersser S, et al. . The impact of inflammatory bowel disease on sexual health in men: a scoping review. J Clin Nurs. 2020;29(19–20):3638–3651. doi: 10.1111/jocn.15418. PubMed DOI

Barros JR, Alencar RD, Baima JP, et al. . Perception of IBD patients about sexuality J Crohns Colitis. 2018;12(supplement_1):S575–S575. PMID: WOS:000427318902285. doi: 10.1093/ecco-jcc/jjx180.1029. DOI

Moleski SM, Choudhary C.. Special considerations for women with IBD. Gastroenterol Clin North Am. 2011;40(2):387–398. doi: 10.1016/j.gtc.2011.03.003. PubMed DOI

Rosso C, Aaron AA, Armandi A, et al. . Inflammatory bowel disease nurse-practical messages. Nurs Rep. 2021;11(2):229–241. doi: 10.3390/nursrep11020023. PubMed DOI PMC

Torres J, Chaparro M, Julsgaard M, et al. . European Crohn’s and colitis guidelines on sexuality, fertility, pregnancy, and lactation. J Crohns Colitis. 2022;17(1):1–27. doi: 10.1093/ecco-jcc/jjac115. PubMed DOI

Beattie W, Elford A, Segal J, et al. . P1006 Assessing sexual health care needs in patients with inflammatory bowel disease. J Crohns Colitis. 2024;18(Supplement_1):i1819–i1819. doi: 10.1093/ecco-jcc/jjad212.1136. DOI

Fourie S, Norton C, Jackson D, et al. . These discussions aren’t happening’: experiences of people living with inflammatory bowel disease and talking about sexual well-being with health care professionals. J Crohns Colitis. 2021;15(10):1641–1648. doi: 10.1093/ecco-jcc/jjab043. PubMed DOI PMC

Domislovic V, Brinar M, Cukovic-Cavka S, et al. . Prevalence, predictors and age-related sexual and erectile dysfunction in patients with inflammatory bowel disease: a tertiary centre experience. Int J Clin Pract. 2021;75(9):e14486. doi: 10.1111/ijcp.14486. PubMed DOI

Fourie S. An interpretative phenomenological study exploring the intimacy and sexuality experiences of people living with inflammatory bowel disease. London: King’s College London; 2022.

Wakai S, Tanaka M, Takai M, et al. . N13 Sexual satisfaction and its associated factors among patients with inflammatory bowel disease in Japan. J Crohns Colitis. 2024;18(Supplement_1):i2214–i2214. doi: 10.1093/ecco-jcc/jjad212.1385. DOI

Chen BL, Zhou BY, Song GD, et al. . Article Inflammatory bowel disease is associated with worse sexual function: a systematic review and meta-analysis. Transl Androl Urol. 2022;11(7):959–973. doi: 10.21037/tau-22-190. PubMed DOI PMC

Mules TC, Swaminathan A, Hirschfeld E, et al. . The impact of disease activity on sexual and erectile dysfunction in patients with inflammatory bowel disease. Inflamm Bowel Dis. 2023;29(8):1244–1254. doi: 10.1093/ibd/izac204. PubMed DOI PMC

Rivière P, Zallot C, Desobry P, et al. . Frequency of and factors associated with sexual dysfunction in patients with inflammatory bowel disease. J Crohns Colitis. 2017;11(11):1347–1352. doi: 10.1093/ecco-jcc/jjx100. PubMed DOI

Muller KR, Prosser R, Bampton P, et al. . Female gender and surgery impair relationships, body image, and sexuality in inflammatory bowel disease: patient perceptions. Inflamm Bowel Dis. 2010;16(4):657–663. doi: 10.1002/ibd.21090. PubMed DOI

Joshi S, Anand E, Renshaw S, et al. . P500 Systematic review of sexual function measurement instruments in the context of pelvic and perineal surgery for inflammatory bowel disease. J Crohns Colitis. 2024;18(Supplement_1):i995–i995. doi: 10.1093/ecco-jcc/jjad212.0630. DOI

Mountifield RE, Prosser R, Bampton P, et al. . Pregnancy and IBD treatment: this challenging interplay from a patients’ perspective. J Crohns Colitis. 2010;4(2):176–182. doi: 10.1016/j.crohns.2009.10.001. PubMed DOI

Huang VW, Chang H-J, Kroeker KI, et al. . Does the level of reproductive knowledge specific to inflammatory bowel disease predict childlessness among women with inflammatory bowel disease? Can J Gastroenterol Hepatol. 2015;29(2):95–103. doi: 10.1155/2015/715354. PubMed DOI PMC

Leenhardt R, Rivière P, Papazian P, et al. . Sexual health and fertility for individuals with inflammatory bowel disease. World J Gastroenterol. 2019;25(36):5423–5433. doi: 10.3748/wjg.v25.i36.5423. PubMed DOI PMC

Gillespie R. Voluntary childlessness in the United Kingdom. Reprod Health Matt. 1999;7(13):43–53. doi: 10.1016/S0968-8080(99)90111-8. DOI

McCutcheon JM. Reviewing pronatalism: a summary and critical analysis of prior research examining attitudes towards women without children. J Fam Stud. 2020;26(4):489–510. doi: 10.1080/13229400.2018.1426033. DOI

Marín L, Mañosa M, Garcia-Planella E, et al. . Sexual function and patients’ perceptions in inflammatory bowel disease: a case-control survey. J Gastroenterol. 2013;48(6):713–720. doi: 10.1007/s00535-012-0700-2. PubMed DOI

Bel LG, Vollebregt AM, Van der Meulen‐de Jong AE, et al. . Sexual dysfunctions in men and women with inflammatory bowel disease: the influence of IBD-related clinical factors and depression on sexual function. J Sex Med. 2015;12(7):1557–1567. doi: 10.1111/jsm.12913. PubMed DOI

Szydlarska D, Jakubowska A, Rydzewska G.. Assessment of sexual dysfunction in patients with inflammatory bowel disease. Prz Gastroenterol. 2019;14(2):104–108. doi: 10.5114/pg.2019.85893. PubMed DOI PMC

Timmer A, Kemptner D, Bauer A, et al. . Determinants of female sexual function in inflammatory bowel disease: a survey based cross-sectional analysis. BMC Gastroenterol. 2008;8(1):45. doi: 10.1186/1471-230x-8-45. PubMed DOI PMC

O’Brien BC, Harris IB, Beckman TJ, et al. . Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245–1251. doi: 10.1097/acm.0000000000000388. PubMed DOI

Ziebland S, McPherson A.. Making sense of qualitative data analysis: an introduction with illustrations from DIPEx (personal experiences of health and illness). Med Educ. 2006;40(5):405–414. doi: 10.1111/j.1365-2929.2006.02467.x. PubMed DOI

Tavel P, Kráčmarová Klůzová L, Půžová Z, et al. . Metodika DIPEx ČR. 1st ed. Olomouc: Institut sociálního zdraví Univerzity Palackého v Olomouci; 2015.

Gabova K, Meier Z, Tavel P.. Parents’ experiences of remote microphone systems for children with hearing loss. Disabil Rehabil Assist Technol. 2022;19(3):831–840. doi: 10.1080/17483107.2022.2128443. PubMed DOI

Černíková KA, Klůzová Kráčmarová L, Pešoutová M, et al. . How fatigue affects return to work in breast cancer patients. Klin Onkol. 2022;35(4):290–296. doi: 10.48095/ccko2022290. PubMed DOI

Coyne IT. Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries? J Adv Nurs. 1997;26(3):623–630. doi: 10.1046/j.1365-2648.1997.t01-25-00999.x. PubMed DOI

Spitale G, Glässel A, Tyebally-Fang M, et al. . Patient narratives – a still undervalued resource for healthcare improvement. Swiss Med Wkly. 2023;153(1):40022. doi: 10.57187/smw.2023.40022. PubMed DOI

Braun V, Clarke V.. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. doi: 10.1191/1478088706qp063oa. DOI

Pope C, Ziebland S, Mays N.. Analysing qualitative data. BMJ. 2000;320(7227):114–116. doi: 10.1136/bmj.320.7227.114. PubMed DOI PMC

World Medical Association . World Medical Association Declaration of Helsinki ethical principles for medical research involving human subjects. JAMA. 2013;310(20):2191–2194. doi: 10.1001/jama.2013.281053. PubMed DOI

Creswell JW, Clark VLP.. Designing and conducting mixed methods research. Thousand Oaks, CA: Sage Publications; 2017.

Triantafillidis JK, Zografos CG, Konstadoulakis MM, et al. . Combination treatment of inflammatory bowel disease: present status and future perspectives. World J Gastroenterol. 2024;30(15):2068–2080. doi: 10.3748/wjg.v30.i15.2068. PubMed DOI PMC

D’Haens GR, Sartor RB, Silverberg MS, et al. . Future directions in inflammatory bowel disease management. J Crohns Colitis. 2014;8(8):726–734. doi: 10.1016/j.crohns.2014.02.025. PubMed DOI

Pinton P. Impact of artificial intelligence on prognosis, shared decision-making, and precision medicine for patients with inflammatory bowel disease: a perspective and expert opinion. Ann Med. 2023;55(2):2300670. doi: 10.1080/07853890.2023.2300670. PubMed DOI PMC

Manze MG, Srinivasulu S, Jones HE.. Patient perspectives of using reproductive autonomy to measure quality of care: a qualitative study. BMC Womens Health. 2023;23(1):647. doi: 10.1186/s12905-023-02804-3. PubMed DOI PMC

Hardee K, Jordan S.. Advancing rights-based family planning from 2020 to 2030. Open Access J Contracept. 2021;12:157–171. doi: 10.2147/oajc.S324678. PubMed DOI PMC

Lewis J, Holm S.. Towards a concept of embodied autonomy: in what ways can a patient’s body contribute to the autonomy of medical decisions? Med Health Care Philos. 2023;26(3):451–463. doi: 10.1007/s11019-023-10159-7. PubMed DOI PMC

McDermott E, Mullen G, Moloney J, et al. . Body image dissatisfaction: clinical features, and psychosocial disability in inflammatory bowel disease. Inflamm Bowel Dis. 2015;21(2):353–360. doi: 10.1097/MIB.0000000000000287. PubMed DOI

Petersén C, Carlsson E.. Life with a stoma-coping with daily life: experiences from focus group interviews. J Clin Nurs. 2021;30(15–16):2309–2319. doi: 10.1111/jocn.15769. PubMed DOI

Szymańska E, Kisielewski R, Kierkuś J.. Reproduction and pregnancy in inflammatory bowel disease – management and treatment based on current guidelines. J Gynecol Obstet Hum Reprod. 2021;50(3):101777. doi: 10.1016/j.jogoh.2020.101777. PubMed DOI

Zapata LB, Paulen ME, Cansino C, et al. . Contraceptive use among women with inflammatory bowel disease: a systematic review. Contraception. 2010;82(1):72–85. doi: 10.1016/j.contraception.2010.02.012. PubMed DOI

Dragoman MV, Tepper NK, Fu R, et al. . A systematic review and meta-analysis of venous thrombosis risk among users of combined oral contraception. Int J Gynaecol Obstet. 2018;141(3):287–294. doi: 10.1002/ijgo.12455. PubMed DOI PMC

Gawron LM, Sanders J, Steele KP, et al. . Reproductive planning and contraception for women with inflammatory bowel diseases. Inflamm Bowel Dis. 2016;22(2):459–464. doi: 10.1097/MIB.0000000000000606. PubMed DOI PMC

Purewal S, Chapman S, Czuber-Dochan W, et al. . Systematic review: the consequences of psychosocial effects of inflammatory bowel disease on patients′ reproductive health. Aliment Pharmacol Ther. 2018;48(11–12):1202–1212. doi: 10.1111/apt.15019. PubMed DOI PMC

Nisihara R, Schulz AFC, Conrado BA, et al. . Sexual dysfunction in patients with inflammatory bowel disease. Sex Disabil. 2020;38(4):731–739. doi: 10.1007/s11195-020-09656-x. DOI

Viazis N, Stefanidou A, Mantzaris GJ.. The ulcerative colitis narrative Greece survey: patients’ and physicians’ perspective on quality of life and disease management. Ann Gastroenterol. 2022;35(3):267–274. doi: 10.20524/aog.2022.0708. PubMed DOI PMC

Ford C, Medcalf L, Kent A.. Sex and intimacy. In: Sturm A, White L, editors. Inflammatory bowel disease nursing manual. Cham: Springer International Publishing; 2019. p. 369–375.

Greveson K, Woodward S.. Exploring the role of the inflammatory bowel disease nurse specialist. Br J Nurs. 2013;22(16):952–958. doi: 10.12968/bjon.2013.22.16.952. PubMed DOI