Top tips
A quick reference guide to the Aware-IBD toolkit.
Use this quick checklist to refresh your memory about the key points in this toolkit.
As you are the expert in your own health and wellbeing, you should be fully involved in making choices about your treatment and care. It is also very important that the people involved in making decisions about you are really listening to you.
Self advocacy
Self-advocacy means that you will get your chance to:
- say what you think and feel
- make choices and decisions that affect you
- be heard so you can speak out for your rights
- work together to plan the best outcomes
Knowledge
When people are making decisions about you, you will want to know lots about that situation. You can find information by:
- talking to the professionals
- looking on the internet at reliable sources, such as the NHS website
- visiting the library
- keeping records of your own health appointments
Health information should be accessible to everyone. Ask for it to be provided in a way you can understand it.
Communication
When it comes to describing your symptoms, there’s no right or wrong way to say how you feel. It can feel strange to use emotional language, particularly if you have not done this before, but don’t be afraid to say how bad things are for you.
Although you are talking to professionals, you don’t need to worry about using the proper medical terms. It’s fine to use everyday language to talk about your experiences.
To help get ready for your appointment, you might want to:
- make some notes
- ask a friend or family member to come with you
- practice what you want to say
Appointments journal
Crohn’s & Colitis UK has an appointments journal to help you get ready. Download the appointments journal.
It has some useful tools to help you talk about how you are feeling, how to make the most out of your time with health professionals and focus on what matters to you. It includes tips on talking, handy questions and provides a space where you can make notes.
It also includes some tools for communicating your symptoms, a useful gut diagram and an appointment guide that might help you to think about some other symptoms that you might have. It provides examples of how you might want to describe your pain, fatigue, bowel problems and poo, along with some great attention-grabbing phrases that encourage you to use emotional language to say how bad things are for you.
The journal provides a space for you to make notes of how you’re feeling in between appointments and keep everything in one place.
Working with your IBD team
The IBD team are keen to work with you to achieve your goals. Consider what these are and discuss the different ways to achieve them with your team. You may want to use a personalised care plan to help you discuss this.