LGBTQIA+ health with Crohn's or Colitis

• You do not have to share your sexuality or gender with your IBD team, but some people find it helpful.
• Information about sexuality and gender is confidential. Your healthcare professional should not share this information without your permission.
• Many people find that living with Crohn’s or Colitis can affect their mental health. There are lots of things you can do to improve mental wellbeing. It’s also important to ask for help when you need it.
• There are some important things to consider with anal sex and Crohn’s or Colitis. Some surgeries may mean receiving anal sex is not possible.
• Some LGBTQIA+ communities may be at higher risk of HIV. Pre-exposure prophylaxis (PreEP) is a medicine to stop you catching HIV. It is safe to take PrEP with most Crohn’s or Colitis medicines.
• Intimate examinations can be difficult if you have gender dysphoria. You might want to try talking to your IBD team about how these make you feel, so they can help support you.

We use the term LGBTQIA+ in this resource. LGBTQIA+ stands for:

• Lesbian
• Gay
• Bisexual
• Transgender
• Queer or questioning
• Intersex
• Asexual
• Plus (+) other identities

There are lots of other words that can describe sexuality and gender. Stonewall have a list of LGBTQIA+ terms if you would like to find out more.

Coming out is the term used to describe someone sharing their LGBTQIA+ identity with someone else. Coming out does not just happen once. There are lots of situations where members of LGBTQIA+ communities might share their identity. This includes at school, work, or home.

There’s no right or wrong way to feel about coming out. You might feel comfortable about sharing your sexuality or gender with everyone. Or you might decide you only want to tell a few people.

Members of LGBTQIA+ communities with Crohn’s or Colitis may feel like they need to come out to people twice. Once about their sexuality or gender, and once about their Crohn’s or Colitis. Some research suggests that members of LGBTQIA+ communities use similar techniques to tell people about their Crohn’s or Colitis, as they do to coming out.

For some people it can be lonely to think of themselves as different, being both from a LGBTQIA+ community and living with Crohn’s or Colitis. But you’re not alone. You might want to read Lauren’s and Joseph’s experiences of being members of LGBTQIA+ communities and living with Crohn’s or Colitis.

Coming out as a young person

Coming out can be a difficult time for anyone, but young people may face extra challenges. These include facing discrimination at school or rejection by parents. The NSPCC has advice on how parents can support their child. 

You might meet lots of healthcare professionals if you have Crohn’s or Colitis. Some you might see once or twice, others you may see for years. You do not have to tell any healthcare professional about your sexuality or gender if you do not want to. But sharing this information might help your IBD team better support you. Some people even find sharing their sexuality helps ease stress.

The NHS rainbow badge

Some people find it easy to be open about their sexuality or gender. Others may find this difficult. Your IBD team might also make assumptions, and these can be difficult to correct.

You may feel more comfortable talking to staff wearing rainbow badges or lanyards. The NHS rainbow badge scheme is a way for NHS staff to show that they are aware of the healthcare issues members of LGBTQIA+ communities can face. When wearing the badge, staff members should:

• Accept that it is a responsibility
• Recognise the barriers members of LGBTQIA+ communities may face
• Commit to promoting an environment that is open, tolerant, and inclusive
• Listen without judgement

Even if staff are not wearing a rainbow badge, you should still expect good, respectful treatment. See more in discrimination. 

Confidentiality

Any information you share with your healthcare professional is confidential. This includes information about sexuality and gender. Information should not be shared with anyone else unless you give permission, known as consent. But information may be shared within your healthcare team.

Let the person you talk to know if you’re not happy with them sharing information within your healthcare team.

There are some situations where permission is not needed to share information. These include sharing information if required to in court, or if other people are at risk of harm.

Discrimination

Everyone should be treated with respect, regardless of sexuality or gender. The NHS and other healthcare professional bodies have guidance on treating people fairly.  But some members of LGBTQIA+ communities still experience discrimination. These negative experiences can make members of LGBTQIA+ communities less likely to ask for medical care.

Citizens Advice provide useful support on what to do if you’ve been discriminated against. This includes information on:

• How to make a complaint
• Finding evidence to support your complaint
• Taking legal action

Encouraging correct use of pronouns

Correct use of pronouns is important to show you recognise and accept someone’s identity. People can often assume someone's gender and use incorrect pronouns. Use of incorrect pronouns may not be done on purpose. But it can still be hard to listen to and correct. If you feel comfortable, let your healthcare professional know what your pronouns are.

Requesting a healthcare professional of a certain gender

You may feel more comfortable seeing a healthcare professional of a certain gender. When going to your GP surgery, you have a legal right to ask to see a particular healthcare professional. You might want to choose this person based on their gender. Although you have the right to choose who you see, you might not always be able to see this person. This might be because they are on leave or have no available appointments.

If your GP refers you to a hospital specialist, you have a legal right to ask for a particular team. There are some situations where you do not have a choice. These include if you need to receive emergency care. If you are in A&E, you can still ask to see a certain gender professional, but there is no legal right. You can read more about your right to choosing services on the NHS Choice Framework webpage.

Living a healthy lifestyle is important for everyone. Making healthy lifestyle choices can help you live longer and with fewer illnesses. Being a member of a LGBTQIA+ community does not mean you will automatically make certain lifestyle choices. It also does not mean you will develop certain health problems. But there are some health behaviours that are higher in LGBTQIA+ communities. The following section looks at how these behaviours can affect Crohn’s or Colitis.

Smoking

Everyone with Crohn’s or Colitis is advised not to smoke. Cigarette smoke contains over 5,000 chemicals, around 100 of which are known to be toxic or cause cancer.

Smoking increases the risk of developing Crohn’s. Smoking can also make Crohn’s worse.

You might be surprised to hear that smokers are less likely to develop Ulcerative Colitis.​ And stopping smoking increases the risk of developing Ulcerative Colitis.​ We do not know exactly what it is about smoking that affects Ulcerative Colitis. It might be tempting to continue or even take up smoking to try to help your Ulcerative Colitis. But it’s important to remember the many other harmful effects of smoking. 

You can find out more about smoking, including help on how to quit in our information on smoking.

Alcohol

There is not any high-quality evidence about the impact alcohol has on Crohn’s or Colitis. Some people find drinking alcohol makes their symptoms worse. Others find it does not make a difference.

Everyone is advised to follow national guidelines on alcohol use. This means drinking no more than fourteen units of alcohol per week. And this should be spread over at least three days. See the NHS website for more information about national alcohol guidelines.

Recreational drug use

Taking illegal or recreational drugs is not related to your sexuality or gender. But some drugs, such as poppers, are more commonly used within some LGBTQIA+ communities.  Poppers work by opening up blood vessels and relaxing smooth muscles.  Some people take poppers because they find it makes anal sex more pleasurable.

Drug use unrelated to sexual pleasure is also higher in LGBTQIA+ communities. Members of LGBTQIA+ communities are more likely to have negative experiences due to their gender or sexuality. Drugs might be used as a way to cope with this.

We do not know much about the impact of poppers or other recreational drugs on Crohn’s or Colitis. But recreational drugs can interact with any prescribed medicines you might take. This can be dangerous. Talk to Frank has more information on taking recreational drugs, including common risks.

Mental health problems

Members of LGBTQIA+ communities are two to three times more likely to report having a psychological or emotional problem. Crohn’s and Colitis can also increase the risk of poor mental health. Uncertainty about the future, symptoms, and starting new treatments can all make you feel anxious. When your mental health is poor, you might find you have more flare-ups or complications.

There are lots of things you can do to improve your mental wellbeing. Tips suggested by people with Crohn’s or Colitis include:

• Find a community of people who understand what you’re going through. Crohn’s & Colitis UK have local networks of volunteers across the country. You can also connect with people online through our Facebook Forum or virtual social events.
• Try an app. Many apps are aimed at managing different aspects of mental health and wellbeing. This includes mood trackers, guided meditation, coping mechanisms, and wellbeing tips. You may need to try a few to see if they work for you. Do remember they’re not a substitute for accessing treatment if you need to.
• Write down your feelings. Some people find recording how they feel helpful. You could try keeping a journal or writing a blog. Even just keeping notes of how you feel on your phone may help you to spot patterns. And it can help to remind yourself that you have overcome difficult times before. 
• Find time to relax. Learning some relaxation techniques is a great way to help when you’re feeling stressed or anxious. Mind have some useful tips for relaxation.
• Get regular exercise. Regular exercise can really help with mental wellbeing. Our page on being active with Crohn’s or Colitis looks at the evidence behind exercising. It also includes top tips on how to stay active.

It’s important to ask for help when you need it. Ask your GP to arrange for you to see a psychologist or counsellor. Some IBD teams may also have access to this support. In some areas you may also be able to access talking therapies services directly.

Coping with poor mental health can be tough. But it’s important to remember you’re not alone. You can find more tips and information on how to access support in our information on mental health and wellbeing. Mental health charity Mind, also have a dedicated page on LGBTQIA+ mental health.

Body image

Body image is how we think we look and present ourselves, as well as how we think others see us. Crohn’s and Colitis can affect body image. Bloating, weight changes, and surgery can all have an impact on how you feel. Some of the medicines used to treat Crohn’s and Colitis can also have side effects that change how your body looks. For example, steroids can cause weight gain, excessive hair growth, and ‘moon face’.

Dealing with poor body image can be difficult. Some people tell us it helps to think of the positives about yourself. You might want to write these things down and remind yourself of them when you feel low. Maybe you could imagine you are a friend, and what you would say to them if they felt bad about themselves.

Our information on sex and relationships has more on ways to build up your body image.

Contraception

Contraception is also known as birth control. It is the different methods used to help prevent pregnancy. For example, condoms, contraceptives pills and intrauterine devices (IUDs). If you could become pregnant but do not wish to, it’s important to use contraception. Your GP or sexual health centre can help you choose a method that is right for you. You can read more about your options on the NHS webpage on contraception.

There are some medicines used for Crohn’s and Colitis that should not be taken during pregnancy. These include:

• Balsalazide
• Etrasimod
• Filgotinib
• Ozanimod
• Methotrexate
• Tofacitinb
• Upadacitinib

There is only a small amount of evidence on the safety of risankizumab during pregnancy. If you could get pregnant, you are advised to use effective contraception while you are on risankizumab and for at least 21 weeks after you stop treatment.

If you do become pregnant on risankizumab, there may be situations where you are advised to keep taking it. See risankizumab for more.

Sexually Transmitted Infections (STIs)

Using condoms is the most effective way of protecting yourself from STIs. Having regular STI tests helps to keep yourself and others safe. Some STIs have similar symptoms to Crohn’s and Colitis. If you think you may have an STI or are having symptoms of an STI, speak to a sexual health clinic.

Anyone can get an STI. But if you have Crohn’s or Colitis, there might be factors that increase your risk of STIs. These include:

• Having open sores or cuts
• Taking immunosuppressant medicines

For more information on STIs, see our information on sex and relationships where we cover:

• Herpes
• Thrush
• Mpox
• HPV
• HIV

Screening for HIV

If you have Crohn’s or Colitis your IBD team may need to test your blood for HIV and hepatitis B and C. This has nothing to do with your sexuality or gender. These blood tests are required before you can safely start an immunosuppressant.

In some hospitals you will not be screened again after starting treatment. If you’re having unprotected sex, it’s important to regularly get tested for STIs, like HIV and hepatitis. If you test positive, tell your IBD team straight away.

Pre-exposure prophylaxis (PrEP)

Pre-exposure prophylaxis (PrEP) stops you catching HIV. It comes as a tablet that contains two different medicines. PrEP is free in the UK. Most of the common medicines used to treat Crohn’s and Colitis do not interact with the medicines used in PrEP. But it’s always best to check with your IBD team or pharmacist before taking any new medicines.

The Terrence Higgins Trust provides more information on how to get PrEP.

Crohn’s and Colitis symptoms and sex

You might find that symptoms of Crohn’s or Colitis get in the way of your sex life. For example:

• Bloating and wind
• Diarrhoea and incontinence
• Fatigue

This can feel frustrating, but there are lots of ways to work around this. Tips that have been shared with us include:

• If you’re worried about bloating and wind, avoiding large meals beforehand may make you feel more comfortable.
• If you’re worried about diarrhoea and incontinence, try having sex at times of the day when your bowel is less active.
• If you struggle with fatigue, try positions that require less energy from you.

Our sex and relationships information has more on coping with Crohn’s and Colitis symptoms and sex. It also has a useful section on how to talk to healthcare professionals about sex.

Anal sex

Anal sex can be enjoyed by anyone, regardless of gender or sexuality. Crohn’s and Colitis are not infectious. They cannot be spread by any type of sexual contact, including anal sex.

If you have anal sex with Crohn’s or Colitis, there are some risks that are important to be aware of.

Anal sex may be more uncomfortable if your Crohn’s or Colitis affects your bottom. There may be times where you want to avoid having anal sex. This might be during a flare-up, if you’ve had surgery, or if you have an anal fistula or fissure.

Receptive anal sex is linked with a higher risk of anal cancer. This is because anal sex can spread HPV, which can cause anal cancer. People with anal or perianal Crohn’s also have a higher risk of developing anal cancer. This is probably because of long-term inflammation. Symptoms that might be signs of anal cancer are:

• Pain around or inside the bottom
• Lumps around or inside the bottom
• Bleeding or passing mucus from your bottom
• Passing poo without meaning to (bowel incontinence)
• Needing to poo more often than usual

Recognising symptoms of anal cancer can be difficult as they can be like symptoms of Crohn’s or Colitis. Talk to your IBD team if you notice any changes. It can be useful to tell them about:

• New pain around or inside the bottom
• New lumps around or inside the bottom
• Any bleeding from the bottom when not in a flare-up

The NHS has more information on anal cancer.

Anal sex following surgery

There are lots of surgeries that people with Crohn’s or Colitis may have. Some surgeries result in removal of the rectum and anal canal. The rectum and anal canal are at the very end of the large bowel.

Proctocolectomy with end ileostomy

Proctocolectomy with end ileostomy is a surgery where the colon, rectum, and anal canal are removed. An ileostomy known as a stoma is then made by joining a section of the small bowel to the surface of the tummy. Bowel contents pass out of this opening into a stoma bag. Anal sex following proctocolectomy with end ileostomy is not possible. This is because there is no anal canal left that anything could be inserted into.

How you enjoy sex may have to change, but it does not need to end. Some people may find this change difficult to accept. Psychosexual counselling, also known as sex therapy, may help. This is a talking therapy that helps people understand and resolve sexual difficulties. Speak to your GP, IBD team, or local sexual health clinic about accessing this support.

Proctocolectomy with ileo-anal pouch (IPPA)

This surgery is commonly known as J pouch surgery. Here, the colon and rectum are removed, and the small bowel is joined to the anus. There is very little information about having anal sex following J pouch surgery. No J pouch surgery is the same, and everyone’s gut will look different after surgery. The small intestine has thinner walls and is less elastic than the rectum.​ Therefore, inserting anything up the bottom carries a risk of pouch rupture.​​ It is best to ask your surgeon whether anal sex is possible for you. It may be useful to check whether penetration with fingers is different to penetration with a penis.

See our information on surgery for more on surgeries for Crohn’s or Colitis.

Gender dysphoria is feeling discomfort or distress when sex recorded at birth does not match gender identity. This distress can be so intense that it leads to mental health problems.

Having Crohn’s or Colitis can mean you’ll need intimate examinations of your bottom. Sometimes you might also need examinations of your genitals. For example, if you have a rectovaginal fistula. A rectovaginal fistula is a tunnel that connects your bowel to your vagina. See fistulas for more information. Genital examinations can be difficult if you have gender dysphoria. It may help to talk to your IBD team about how these examinations make you feel. You can ask for the examination to be taken slowly, and for it to stop at any point.

If you are having an intimate examination, you should be offered a chaperone.  A chaperone is someone who can go with you to your examination. You may also like to have a partner, friend or family member present. If it helps, ask for a healthcare professional of a particular gender. See requesting a healthcare professional of a certain gender for more information.

The NHS has more information about gender dysphoria and finding a gender dysphoria clinic.

Using the toilet

Finding a toilet can be difficult for everyone with Crohn’s or Colitis. But transgender people can face further challenges. Transgender people can use toilets that match their identified gender. But almost half of transgender people feel uncomfortable using public toilets. This is due to fear of discrimination or harassment from other people. RADAR keys can help provide people with Crohn's or Colitis access to gender neutral disabled toilets. RADAR keys are available to Crohn's & Colitis UK members. They can also be bought from Disability Rights UK. You can find out more about RADAR keys here.

Treatment for gender dysphoria and Crohn’s and Colitis

A lot of people want to have treatment for gender dysphoria. But accessing this treatment can take a long time. If you want treatment, you might need specialist advice on the impact it may have on your Crohn's or Colitis. Talk to your healthcare team if you are thinking about treatment for gender dysphoria.

Gender affirming hormones

Gender affirming hormones make someone’s appearance more masculine or feminine. Gender affirming hormones include oestrogen, progesterone and testosterone. These hormones can be prescribed for transgender and non-binary people. There is not much research on gender affirming hormones in people with Crohn’s or Colitis. This makes it difficult to know what effect they might have. Early research suggests gender affirming hormones do not increase the risk of a flare-up. But more research is needed to know for sure.

Talk to your IBD team or gender dysphoria specialist for advice.

Testosterone

Taking testosterone causes changes to the cells in the lining of the vagina. This increases the risk of inflammation or infection within the cervix and vagina. These conditions are called cervicitis and vaginitis. Cervicitis and vaginitis can both cause tummy pain. One study found almost 7 in 10 (70%) of transgender or non-binary people had tummy pain after starting testosterone. But Crohn’s and Colitis can also cause tummy pain. This might make it difficult to know what’s causing your pain.

Talk to your healthcare team if you’re thinking about taking or are taking testosterone.

Oestrogen

Taking oestrogen tablets increases the risk of developing a blood clot. Blood clots develop in deep veins in the legs, but can travel around the body to the lungs. People with Crohn’s or Colitis have an increased risk of developing blood clots. Taking oestrogen further increases this risk. Let your IBD team know if you are thinking about taking or are taking oestrogen.

Symptoms of a blood clot in the leg can include a red, swollen, hot and painful leg. Symptoms of a blood clot in the lungs are:

• difficulty breathing
• chest pain
• coughing blood

If you have symptoms of a blood clot in the leg, get an urgent GP appointment or phone 111. If you have symptoms of a blood clot in the lungs, go to A&E.

Some people have surgery to change body parts associated with their biological sex. You do not have to tell any healthcare professional about your sexuality or gender if you do not want to. But there are some important reasons to talk to your IBD team if you are thinking about having surgery.

Gender affirming surgery

There are lots of different gender affirming surgeries, for example top and bottom surgery. Bottom surgery can include:

• Orchiectomy: removing the testicles
• Vaginoplasty: creating a vagina
• Hysterectomy: removing the womb
• Phalloplasty or metoidioplasty: creating a penis

There are other types of bottom surgery too.

Some surgical techniques for vaginoplasty use the bowel to create a new vagina. There is not yet much research on this kind of surgery in people who have Crohn’s or Colitis.

Talk to your healthcare team about the risks and benefits for your personal situation.

We follow strict processes to make sure our award-winning information is based on up-to-date evidence and is easy to understand. We produce it with patients, medical advisers and other professionals. It is not intended to replace advice from your own healthcare professional.  

We hope that you’ve found this information helpful. Please email us at evidence@crohnsandcolitis.org.uk if: 

• You have any comments or suggestions for improvements 
• You would like more information about the evidence we use 
• You would like details of any conflicts of interest 

You can also write to us at Crohn’s & Colitis UK, 1 Bishop Square, Hatfield, AL10 9NE. Or you can contact us through our Helpline by calling 0300 222 5700. 

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