Achieving more with IBD

Family life

Top tips

• Your family should provide support and empathy
• Open communication within families is essential
• Discuss sexual matters frankly with your partner
• It is important to lead a normal active sexual and social life

How will IBD affect family life?

When someone is newly diagnosed with IBD it is important for everyone in the family to understand that new family roles may be necessary. These new roles include providing support and empathy, and will be different depending on whether you are experiencing a flare-up or are in remission.

During a flare-up you are likely to suffer from loss of appetite and nausea. The pain and diarrhoea experienced during a flare can lead to tiredness and weight loss. It is important that your family allow you to get enough rest and provide you with support, show patience and understanding, for example, by giving you time to talk about your disease without asking lots of questions.

Your family should also understand that IBD can be an embarrassing illness to live with. Bloating and wind may be difficult to control, leading to noises and smells. With some patients, urgency and incontinence with diarrhoea can lead to embarrassing ‘accidents’, making going out in public problematic unless there are toilets available. Adjusting to leading a normal social life may become more challenging, but with support and planning it is possible.

Side effects from medication, especially from steroids, can lead to changes in physical appearance and mood changes including irritability, depression and anxiety, while coming off steroids can lead to withdrawal symptoms. Understanding the reasons for these effects will help your family manage the potential consequences on family life.

Family are important for providing encouragement to continue medication when you are in remission, even when there are potential side effects.

There are also practical considerations and adjustments that families have to make e.g. ensuring space in the fridge for medications, changes in household schedules and activities, needing to keep the bathroom free.

IBD can occasionally mean that some jobs are not practical, and may lead to a change in employment to suit your routine. This may have a financial impact on your family, or you may not be able to take on your share of the responsibilities in the home or family life so easily. Often this creates feelings of frustration about your disease – it is important to avoid venting your feelings on the rest of the family, or becoming withdrawn or distant, as you will need their support in continuing to lead a normal life. Some families find that they become closer as a result.

My family has someone with IBD – how can I best                                back to top

deal with their disease?

Open communication within your family is essential.

There are many things that you and your family members can do to help, such as practical help with everyday activities e.g. shopping, cooking, and driving your family member with IBD to hospital appointments.

People with IBD may find it difficult to talk about their feelings and to ask for help. You and the rest of your family should be supportive and show patience and understanding. Offer encouragement and praise for dealing well with their symptoms. Most people are looking for empathy rather than solutions, and for someone to talk to when they are ready to discuss their disease.

It is important that you show an interest in the disease. Your family members should be encouraged to accompany the individual with IBD to consultations with their health care professionals, and ask questions.

If your family has a child with IBD, it is important not to restrict your family life/family’s lives because of your child’s disease. Be aware of treating your child with IBD differently from other children, or allowing your child to think of him/herself as ‘sick’, or to use IBD as an excuse for expecting to be unnecessarily treated differently from other children.

Living with someone who has IBD can be stressful and cause relationship difficulties. Carers and families themselves need support. It is also important for you to share your feelings without feeling guilty. Open communication, airing frustrations and grievances can help a relationship, but should be done with sensitivity. It may be beneficial to talk over this approach with a qualified counsellor.

For more information on communication issues in IBD, one can refer to Living with IBD/ Communicating IBD

Sexual relationships                                                                             back to top

Sexual relationships can be complex when one of the partners has a disease such as IBD. Without support and understanding, relationships can enter a difficult phase or come to an end, and this can create a great deal of stress and anxiety. On the other hand, relationships can become closer as a result and can be a wonderful experience.

For more information on communication issues in IBD, one can refer to Living with IBD/ Communicating IBD

For many people with IBD sexual relationships are without issues; however, starting to explore the possibility of sexual relationships can be charged with emotional turmoil for any person, and for some people with IBD, deciding how to talk about the disease to a potential sexual partner (especially if this may have created barriers within previous friendships) can be an added concern. The effect of IBD on sexual relationships as well as attitudes towards sex can vary enormously, however, the more informed your partner becomes about IBD the more understanding he/she is likely to be.

Your enjoyment of a full sex life may be affected in several ways, and to ‘let yourself go’ sexually you need to be free of anxiety. It is understandable that you will have worries, such as:

• incontinence during sex
• your partner's reactions
• negative feelings about yourself and your body
• a decrease in your desire/ ability to have sex because of physical problems caused by IBD
• fear of pain during sex (for women)
• explaining your stoma/problems with stoma and bag

The more you are able to talk to your partner about these things, the more relaxed you are likely to feel.

Some of the medication you take for IBD, in particular steroids, may have a negative impact on sex drive. Physical problems like pain, diarrhoea and tiredness can interfere with sex. For some people with Crohn's disease, rectal scarring, abscesses and fistulae can make vaginal and anal penetration during sex painful or temporarily impossible.

People sometimes find it helpful to identify someone they can trust, and talk openly with them about their feelings and their relationships. You may want to find someone outside of your family and friends to share your problems with. Counselling, with or without your partner, may help – your healthcare practitioner, or hospital specialist, may be able to refer you to a general or psychosexual counsellor. People involved in homosexual relationships may need special help and counselling.

The non-IBD partner also often needs reassurance and to know that the lack of sex is not a personal rejection – their partner’s lack of interest is due to the disease. The partner with IBD wants reassurance that he/she is still attractive. For more information on this subject, one can visit NACC website at

http://www.nacc.org.uk/downloads/factsheets/SexualRelations.pdf .