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Sexuality and IBD

Although inflammatory bowel disease (IBD) can occur at any age, most new cases are diagnosed between the ages of 15 and 35 years—a time in life when people might be experiencing issues on body image as they are forming important social and intimate relationships. It is only natural for many questions and concerns to arise about the potential impact of IBD and its treatment—including diet, medication and surgery—on sexuality, sexual function, and sexual development.

Some of these concerns could be emotional in nature: ‘Will I be attractive to a potential partner?’ or ‘How do I even begin to tell someone about my condition?’ Others might be physical concerns: ‘Will IBD affect my sex drive?’ or ‘Will surgery have any impact on my ability to have sex?’

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I worry that no one will find me attractive

In addition to the pain and fatigue of IBD, having a negative body image can be a real issue in terms of developing and maintaining social and intimate relationships. To complicate things, rushing off to the loo 15 or 20 times a day is not particularly sexy. And side effects such as a round puffy ‘moonface’ or facial acne when taking high doses of corticosteroids can make people want to avoid mirrors at all costs. As sad as it is, it appears that society places a higher value on looks than on the inner person.

The best advice we can give: don’t buy into it!

You know who you are: just a normal person with everyday needs and desires, one who has plenty to give and plenty to live for, and one who has made a very positive and conscious decision not to be defined by his/her condition.

While it might be easier to be ‘up’ when you are feeling well, there is no doubt that you will need to dig deep into your inner resources during the more difficult times of active disease. This is often a matter of sheer willpower. Keep an eye on the big picture, which includes all aspects of your looks and personality.

Pay attention to your grooming, participate in as many activities as you can, keep your health up to scratch by eating a well-balanced and nutritious diet, and do not let anyone or anything stop you from doing what you really want to do.

Finding that special person or developing a meaningful relationship can be difficult for anyone, including those without IBD. No need to despair. It is not the IBD that will hold you back. The more you open up and communicate with your friends and family, the more likely they are to recognise and appreciate the real you, someone with a true sense of self and who is not a victim of a particular condition. At the end of the day, the real you is your most attractive characteristic.

Sometimes, the biggest issue you have to deal with when it comes to being attractive to others is the value you place on yourself. This will not always be easy, especially when you start feeling depressed (which is common among those with IBD). If your depression is not recognised and treated, it can hinder you from forming and maintaining intimate relationships. In fact, depression is a significant aspect of IBD and has been found to be the biggest risk factor for impaired sexual function, second only to active disease. If you, or those around you, think you are depressed, do not hesitate to discuss this with your doctor or clinical team. Facing up to depression is the first step to getting better and feeling attractive.

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How do I tell others about my condition?

There is no doubt that opening up to a potential partner about your condition can be stressful. The key question is: ‘Will they run for the hills?’ Certainly many people will not even have heard about IBD before and might not be able to immediately grasp the scope and implications of your condition. Fair enough: bodily functions are not something most people would feel comfortable discussing on the first few dates. In the same vein, there are many other things that you will not wish to tell another person about until you get to know him or her better. In time, you will be able to determine instinctively whether the person that you are with is right, or if the timing is right to discuss your condition in detail. Most people will appreciate your honesty and it could open up further channels of communication that bring you even closer together. The best advice is to keep things simple at first. There is no need to include every single detail about your condition; there will be plenty of time for more talks as the relationship progresses. Just be honest, confident, and positive about the future. People will take their cues from you.

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What is the best way to discuss my concerns with my clinical team?

It might seem at times that some members of your clinical team are extremely busy and will tend—or need—to focus on your immediate problems rather than your overall health. This might make you feel somewhat reluctant to bring up your concerns about your sexuality and sexual function. It is important to remember, however, that IBD clinical teams are becoming more and more aware of the many ways that IBD affects on a person’s life beyond the physical symptoms of intestinal inflammation. So do not be shy to raise any questions or concerns you might have with your gastroenterologist or IBD nurse (if you have one). If they are not able to deal with your specific concern, they can always refer you to another member of the clinical team. And just so you do not forget to ask those all-important questions in the middle of a consultation, consider making a list of topics for discussion at your next appointment.

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Will IBD affect my sex drive?

Understandably, many with IBD find they have less interest in sex when their disease is in an active stage. Symptoms such as abdominal cramping and diarrhoea can make them reluctant to engage in sexual activity because of pain, embarrassment, or fear of having an ‘accident.’ Or they might simply lack the energy for sexual activity during a flare-up because of under-nutrition and dehydration. This is yet another reason why keeping good control of your disease is so important. For many, this involves taking maintenance medications to keep the disease in remission. And it is always a good idea to discuss with your partner the ways in which you can meet each other’s sexual needs during periods of pain or fatigue.

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How can I meet the sexual needs of my partner?

Most people with IBD are physically capable of having sexual intercourse but, just like everyone else, might not feel like it at times. There might be problems with abdominal pain, fear of incontinence, or sheer tiredness. There could also be mixed feelings of wanting to have sex and not wanting to have sex for fear of turning off their partner. As always, open and candid communication is the best solution. Remember, sex begins and ends in the brain!

Reassure your partner that it is nothing personal; sometimes he or she might not be in the mood for intimacy for entirely different reasons, and you will accept that with good grace as well.

Give your partner the opportunity to be understanding and supportive. Most people rise to a challenge and it can only help to enhance and strengthen your relationship. Remember that your partner loves you for who are as a total person and is not fixated on any particular activity or body part.

There are many ways to be sexually intimate that do not involve intercourse. You can have romantic dinners or take long strolls along a beach. Talk about your feelings and fantasies. Kiss and cuddle like you did back in the days when you first met. Anticipate the times ahead when you are feeling better—which is at least half the fun!

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Will the medications that I am taking affect my sex drive or performance?

Most medications commonly used to treat IBD do not particularly affect sexual desire or performance. In fact, if the medications are working well and are keeping your disease under control, you are more likely to feel interested in sex. People with Crohn’s disease frequently need antibiotics to treat their symptoms and complications such as fistulae or abscesses. Women taking antibiotics might develop a yeast infection in the vagina (called thrush or candidiasis) which can cause unpleasant symptoms such as itching and soreness, but this does not affect sex drive in any other way.

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Will surgery affect my sex drive or performance?

Many people with IBD can expect to have at least one surgical procedure during the course of their disease, either to treat the condition itself or a complication arising from the condition. As with any other surgery, strenuous activity (including sex) should be avoided until sufficient time has been allowed for healing to take place. The amount of downtime you will need will depend on the type and extent of your surgery. You should ask your surgeon or clinical team specifically about this issue if you have any concerns.

Some people who have had parts of their intestine removed (surgical resection) will have a stoma, which is a surgically created opening in the skin of the abdomen. A bag or appliance needs to be fitted over the stoma to collect intestinal waste. Although wearing an appliance has no physical impact on sexual function, it could be somewhat awkward and embarrassing at first. Care must be taken during any type of physical activity, including sex, as the appliance might leak or become dislodged. Other than that, there are no restrictions on sexual activity. For your own personal comfort, it will help to empty the pouch before sex or to camouflage it with specially designed underwear. The stoma therapist at your hospital will be able to provide you with the most up-to-date information and tricks to deal with this potentially embarrassing issue. Do not be afraid to bring it up. It is a very common question!

People who have had pouch surgery—also known as ileal pouch anal anastomosis (IPAA) or restorative proctocolectomy—often feel better overall after this type of operation and experience improvement in the sexual aspect of their lives. On the other hand, in instances where surgery is difficult because severe disease has destroyed surrounding tissues, there is a risk of injury to the pelvic autonomic nerves. Disturbing the pelvic nerves can create erection and ejaculation problems for men and may decrease clitoral sensation in women. This is relatively rare, however, and a well-trained surgeon will recognise the areas where risk to the nerves is greatest.

Removal of the rectum in women with IBD can cause the ovaries and uterus to re-position themselves within the pelvis. The could result in pain during intercourse, but only temporarily.

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Does IBD affect the sex organs?

IBD does not have any direct effect on the sexual organs or genitals per se, as the disease is limited to the gastrointestinal tract. Crohn’s disease, though, might have an indirect effect on sexual organs. An abnormal channel or fistula might develop between the intestine and another organ, such as the vagina, which can leak intestinal contents into the connecting organ. Crohn’s disease can also lead to the development of abscesses (localised sacs containing intestinal fluid, bacteria and pus), skin tags (lumps of thickened skin) or fissures (ulcerated tears or cracks) in and around the anal region. If you think you might have these problems, it is important that you speak with your doctor earlier rather than later as treatment is more successful if the problem is addressed promptly. These complications can usually be corrected with medication or surgery.   

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Does IBD affect sexual development?

When IBD occurs in younger children before the onset of puberty, there could be a delay in sexual development. This occurs however only if the disease is severe enough to delay growth in general or to cause a child to become underweight. It is estimated that up to one-third of children with Crohn’s disease might grow and develop more slowly than their peers. The main reason for this is lack of adequate nutrition—as the child tends to eat less to avoid pain, cramping, and diarrhoea—and/or because of impaired absorption of essential nutrients in the small intestine.

Children who take corticosteroids to control inflammation might also experience delays in growth or at the onset of puberty. This is usually managed effectively by taking the lowest dose possible for the shortest time possible to control symptoms; by taking corticosteroid-sparing medications such as azathioprine (which could reduce the need for frequent use of corticosteroids); and sometimes by taking corticosteroids only on alternate days.

Whatever the reason for the delay, although some children with IBD might start puberty later, eventually they will catch up and mature normally.

On the other hand, perhaps the biggest issue with delayed sexual development in children with IBD relates to how they view themselves compared with their peers. Adjusting to puberty is unsettling for any child and is even more so for children with IBD. Not only do they have to contend with a painful disease that causes distressing and often embarrassing symptoms, and cope with taking medications such as corticosteroids that can affect their outward appearance—they also will probably look different from their peers.

This is why children with IBD need plenty of understanding, support, information, and reassurance during this difficult phase. It is best to be honest with them when they ask some difficult questions and to reassure them that their sexual development will be normal in time.

Keeping up regular attendance at school is absolutely vital to ensuring that a child or adolescent with IBD develops and maintains as-normal-as-possible peer relationships. This enhances their emotional wellbeing and will help see them through a difficult period in their lives to come out the other side as well-adjusted, confident young adults.

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