Sexuality and IBD

Inflammatory bowel disease (IBD) doesn’t just affect your physical and emotional health, but can impact one’s sexuality and relationships as well. For people with IBD, sex and intimacy can be especially difficult subjects to discuss but remember that your IBD team is there to face these concerns with you as well. Through proper disease treatment and open communication with your partner and your IBD team, people with IBD can engage in healthy and intimate relationships.

Introduction

IBD may impact on physical and emotional aspects of sexual health, regardless of your sexual orientation or relationship status. Whilst you may shy away from talking about this topic, it is important to remember that this is a normal and essential part of maintaining your quality of life and your IBD team can guide you in navigating any concerns. Your IBD team understands the importance of reducing any anxieties around this sensitive issue and you can be assured that every consultation is confidential. If you have a partner, you may wish to bring them along to your appointments for additional support.

Consent and communication

Consent and communication are vital in ensuring healthy and safe sexual practices. Whilst it can be difficult to have these conversations, it is important to discuss your sexual preferences and expectations in advance with your chosen partner to ensure a mutual understanding of your level of intimacy. It is not uncommon to be anxious about the impact of IBD on body image or function, have a reduced desire to engage in sexual activities or be concerned about how your partner will react to these things. However, it is important to seek advice from the IBD team; you may also wish to consult with a specialist relationship counsellor to reduce negative feelings and burdensome emotions.

Contraception and safe sex

If you are not planning a pregnancy, or if you are a female on a medication called methotrexate, it is important to ensure you are using effective contraception or “birth control”. Safe sex refers to the stopping of spreading of sexually transmitted infections (STIs). Methods of contraception include:

• Barrier
  • Male condoms: these protect both partners from STIs
  • Female condoms: these protect both partners from STIs
  • Diaphragm: these do not protect either partner from STIs
• Hormonal (do not protect either partner from STIs)
  • Combined oral contraceptive pill (the pill)
  • Progestogen-only pills (mini-pill)
  • Vaginal ring
  • Skin implant
  • Injections
  • Intrauterine device (IUD)
  • Emergency contraceptive pill
  • Other (least effective)
    • Rhythm or Billings method
    • Withdrawal method

To decide on the optimal form of contraception, discuss this with your partner, GP or specialist gynaecologist.

Effect of symptoms of IBD

Many symptoms associated with IBD may affect your sexual health, including:

• Tiredness or fatigue
• Faecal urgency or diarrhoea
• Abdominal or pelvic pain
• Joint pain or stiffness
• Low mood, low libido, anxiety or emotional distress

It is important to discuss these with your GP or IBD team, including doctors, nursing staff and psychologists, as there may be many treatments which can assist with these. It may also be helpful to see a psychologist.

Fistulas or abscesses

Some people with Crohn’s disease may develop infections or inflammation around the anus or genital area, which may make sex uncomfortable. Abscesses, scarring or communications between the bowel and skin (fistulas) may impact on certain sexual practices, such as penetrative vaginal or anal sexual intercourse. It is important to speak with your IBD team about these. Medications or surgery may be required to treat these complications. Techniques such as using lubricating gel may reduce discomfort during sexual activity. If any particular activity triggers pain, you may need to modify this activity. You may need to speak with your IBD team to ensure there has not been any local damage, and for advice regarding other strategies that may be helpful.

Incontinence and urgency

People with IBD may worry about having an unpredictable or uncontrollable bowel motion or urgency during sex. Going to the bathroom prior to having sex, or timing sex at a time when your bowel is less active, may help alleviate this feeling. Speak to your IBD team about possible strategies including an anti-diarrhoeal medications or referral to a continence specialist.

Effect of medications

In general, medications that treat your IBD will have a positive impact on your sexual health. However, certain medications such as steroids and antidepressants can impact your mood, reduce your sexual desire, and affect your performance and satisfaction. If you are experiencing any of these side effects, please inform the IBD team as there may be alternatives. If you use suppositories or enemas, you may need to reconsider the timing of this in relation to your sexual activity. Speak to your IBD team about which administration time would be most suitable for you on these occasions. Importantly, if you are a female taking methotrexate, it is important to ensure you are using effective contraception to avoid complications of an unplanned pregnancy. Methotrexate can cause loss of the foetus, and affects foetal growth and development.

Effect of surgery

If you are undergoing surgery, we suggest you speak to your surgeon about the impact of this on fertility, sexual function, and recovery time. It is entirely normal that you may not feel a desire or be ready to have sex immediately after an operation. It is therefore important to communicate this with your partner honestly and to share your feelings in other ways.

Stomas

It is understandable if you are worried about your body image and sexual health if you have a stoma. However, most people with a stoma are able to have an active and fulfilling sex life. Speak to your stoma therapy nurse about strategies to reduce any unwanted accidents, such as emptying your pouch immediately prior to sex, ensuring a secure attachment of your stoma bag, and other available garments for intimate occasions. It is important to note that insertion of body parts or sex toys into the stoma is not recommended as this may cause damage to the bowel.

Pouch or anal surgery

If you are undergoing pouch surgery (ileal pouch anal anastomosis, IPAA) or other operations involving the anus, it is important to speak to your surgeon about appropriate recovery time prior to any anal sex. Lubrication and taking care may be required to minimise any discomfort.

Other important notes

Smoking

Smoking may affect many aspects of your health, including IBD and sexual functioning. Please talk to your GP or IBD team about ways to quit smoking including a referral to a smoking cessation service if possible.

Vaccination and preventative health

According to recommendations in the Australian Immunisation Handbook, the human papilloma virus (HPV) vaccine is recommended for all patients with IBD who are:

• Aged 9-18 years; or
• At any age if taking medications that suppress the immune system, including:
  • Steroids (prednisolone)
  • Immunomodulators such as azathioprine, mercaptopurine, methotrexate
  • Biologics such as infliximab, adalimumab, vedolizumab, ustekinumab, golimumab
  • Tofacitinib
  • Tacrolimus and cyclosporin

Women are encouraged to have regular cervical screening (pap smear) from age 25 years. Please discuss this with your GP.

Disease activity

Your overall health is the main contributor to your sexual health. Please talk to your IBD team if you feel your IBD is active or flaring, or if you are worried about your general health.

Acknowledgements:

This resource was developed in 2021 by the GESA IBD Patient Information Materials Working Group