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IBD and advice for family members and friends

  • IBD is a highly variable condition, with substantial differences in the extent to which it impinges on the lives of family members
  • Effective and compassionate communication is essential to allow individuals with IBD to express and, when needed, discuss their concerns, feeling, and thoughts
  • Sometimes it can be very difficult for individuals with an illness to talk about what they are experiencing; trying to focused a discussion about illness or how they feel can be counterproductive
  • Sometimes just 'being there' (e.g., going to the hospital with them, being there when they meet their doctor, checking up on them when in hospital) for individuals with IBD is very helpful
  • Family members without IBD can also often feel anxiety, frustration and distress with regard witnessing what a family member with IBD is going through
  • If you have questions or concerns about how you are coping with living with a family member or friend with IBD, feel free to talk to your doctor, psychologist and/or local crohn's and colitis association
  • Nothing you did or said caused IBD

    Supporting someone witn IBD can be challenging and most loved ones want to do anything to help and they might put their own feelings and needs aside. Doing this for a short period of time might be ok, but it's essential that loved ones look after their own needs and take care of themselves.

    If you don't, it can lead to feeling exhausted, unwell and depression and anxiety in the carer. You will experience some role changes in the relationship. For example at times the carer may need to do more around the house, or be the driver. It is important to notice these changes and ask for help and know that it is ok for you to say no.

    Family member without IBD can also feel anger, anxiety, frustration and distress guilt with regard to witnessing what a family member is going through. It is ok to cry, to talk to someone about how you feel and let go of mistakes (if I did this, I should do that) and make sure you put energy aside for the things you enjoy.

    Questions you may want to ask doctors

    • What caused IBD
    • What makes it worse
    • What are the treatments
    • What are the side effects of treatments
    • How do I know if my loved ones need immediate medical attention
    • Will they need to follow a special diet
    • What can I do to help

    Communicating about IBD

    Sometimes people with IBD don't want to talk about their illness and symptoms, and other times they do. It is important to let them take the communicative lead. Important to let the person with IBD know you love them, care for them and that you are there for them.

    Be cautious of advice giving. The person with IBD usually has been given advice by a number of health professionals, and other people about all sorts of things, from diet, to medical treatment to complementary treatments.

    If someone is going through a flare-up, asking a non-specific question like “what is it I can do to help?” might put additional pressure on the person with IBD because they might be struggling to make decisions. It might be more helpful to offer specific things to help. For example “How about I cook dinner on Wednesday and Friday this week”, or “How about I do the shopping on Saturday morning for you”.

    It's okay to also keep the conversation light at times. Sometimes especially during a flare-up, it's hard for patient's to hear about more world disasters or about someone else's illness. It's okay to talk bout something that you did, or the persons interest, or the latest social gossip.

    Sometimes it's also okay not to talk and just sit with the person especially if they have just had surgery and have not got the energy for conversation.

    Helpful websites




MORE LINKS

If you are interested in other gastrointestinal-focused information and intervention websites developed and hosted at
Swinburne University of Technology,
please go to:

IBSclinic.org.au for individuals with Irritable Bowel Syndrome

Gastroparesisclinic.org for individuals with Gastroparesis

DISCLAIMER

This website and its content is not intended or recommended as a substitute for medical advice, diagnosis or treatment. Always seek advice of your own physician or other qualified health care professional regarding any medical questions or conditions.

© 2014 Swinburne University of Technology | CRICOS number 00111D