Advice for adults with IBD
Employment
By its nature IBD can cause significant disruption in one’s life. The acute symptoms of active illness combined with the obligations of medical appointments or tests can interrupt or restrict daily living in a variety of ways. Unsurprisingly, the impact of IBD on employment is a significant concern for many people. Issues include
- Whether or not to disclose one’s diagnosis to an employer
- When should you disclose your diagnosis? During the hiring process? After getting the job?
- Whether to tell the people you work with
- What are the advantages/disadvantages of disclosing to colleagues?
- Your legal rights and protections
Although IBD can cause significant disruption for work, it is not uncommon for individuals to have long periods of remission (i.e., uninterrupted work) and to lead successful careers. For further information regarding these issues, visit
You and your medical team
A diagnosis of IBD usually means starting a long-term relationship with your treating gastroenterologist. With this in mind, it is important that you develop a relationship where you feel able to talk freely about your condition, symptoms, and medication habits. Clear communication is fundamental to successfully treating IBD, as your doctor will be using the information you provide (e.g., symptoms, missed medication dosage, disruption in daily living) to monitor your well-being and make treatment decisions.
Record keeping
It can be tricky at times to track your health and treatment. Consider keeping a record in a journal or digital notebook of your symptoms, your current medications, side effects, and medication habits (e.g., when you take them, missed doses). On top of your prescribed IBD medications, you may also take other drugs to deal with symptoms (e.g., anti-diarrhoea drugs, pain relief). It helps to keep a record of these too, as they are illustrative of your disease activity. Keeping a personal record of your illness symptoms, medication usage, and other significant issues (e.g., side-effects, dates of note) is a great way of accurately communicating to your doctor what your current disease activity is like and how it impacts your life.You may also find that keeping a personal record of your IBD helps in ensuring that any other members of your health care team (e.g., dietitian, psychologist, surgeon) are receiving and acting on the same accurate information.
Knowledge and understanding
Feelings of uncertainty or worry are not uncommon for IBD patients. These feelings are understandable given the remitting, unpredictable nature of IBD. You may find it empowering to expand your knowledge or understanding of your condition. Your gastroenterologist can help with this, so consider noting down questions to ask at your next consultation. Everyone’s IBD knowledge level varies, and you shouldn’t feel embarrassed about wanting to know more, no matter how simple or complex your questions, or how many. Examples include
- What should I be eating/avoiding
- Will this condition affect my fertility?
- Can I drink alcohol?
- Given my current state of disease activity, what signs symptoms can I expect? When should I be concerned?
- Will I benefit from nutritional supplementation? Am I nutritionally deficient?
Websites such as this one and other IBD groups such as Crohn’s and Colitis Australia (https://www.crohnsandcolitis.com.au/) can also help expand your IBD knowledge and address some questions or concerns you may have. Your doctor is there to address any questions or issues you may have –you should not feel ashamed or hesitant to raise these with them. As noted in the nutrition section of this site, exercise due caution and scepticism towards information found online. When looking at online sources, it is important to consider the credibility of the author and whether their claims are sufficiently justified. Consider asking your doctor about any claims or information you find online that you are interested in.
Treatment changes and support
Your IBD is not static, it can change over time, whether it becomes worse, improves/remits, or develops complications. As your disease changes, your treatments often do too. Different medications have different benefits and risks/side effects, and it is important that you feel comfortable with the change. Some treatment decisions are more significant than others, for example, the decision to opt for surgery compared to a small change in oral medications. If you feel hesitant or concerned about a change in treatment, consider asking for time to make the decision, or getting a second opinion. Remember, getting a second opinion is common and accepted practice, your doctor understands this and will not be offended. You may find that a second opinion gives you a greater sense of confidence in your decision or allays your concerns. You may also find some benefit in bringing someone you trust (e.g., friend, family member) to your appointment. They can not only provide much needed support, but also help in making meaningful sense of the information your doctor gives you.Some patients may also require an interpreter to understand their doctor. It is important to raise this with your provider if you or someone you know requires this, as they can make provisions for this by bringing in an interpreter for the appointment or using a phone interpreter.
Mental health support
As with other chronic health issues, IBD can have a significant impact on your mental health. This can manifest in various ways, from feeling depressed, anxious, mentally drained, having body-image issues, or through low self-esteem/confidence. Although some degree of stress is to be expected with a health issue, it is important to identify when you are not sufficiently coping, as stress can evolve into significant mental health issues if left unaddressed. Your healthcare professional (e.g., GP, gastroenterologist) can refer you to a mental health professional if needed.
Your medical records and healthcare rights
For information on your rights as a patient of the Australian healthcare system, view the Australian Charter of Healthcare Rights at
The charter includes rights relating to access, safety, respect, communication, participation, and privacy
- All patients have a right to healthcare
- All patients will have a right to receive safe and high-quality care
- All patients will have a right to be shown respect, dignity and consideration
- All patients will have a right to be informed about services, treatment, options and costs clearly and openly.
- All patients will have a right to be included in decisions and choices about their care
- All patients will have a right to privacy and confidentiality of their personal information.
If you wish to examine your health records or talk to someone about them, contact your healthcare team and they can arrange for this. For further information on accessing your records, visit the Office of the Australian Information Commissioner (OAIC)