Older people with Crohn’s and colitis

Upcoming events

The second webinar in our Ageing with IBD series will be held on Thursday November 6th from 7:00-8:00pm AEDT. The webinar will discuss comorbidities and mental health. Find out more and register through our information forums page.

Ageing and IBD

Older people are underrepresented in clinical trials, which means there is less evidence to guide how inflammatory bowel disease (IBD) care and treatment goals should evolve with age. As people age, the risk of developing other health conditions (e.g., osteoporosis, diabetes, heart disease) increases. This can complicate IBD management by increasing the likelihood of medication side effects and interactions. It also causes further exclusion from clinical trials, as many trials exclude people with multiple health issues – further reducing the amount of evidence we have about older people with IBD.

Symptoms and treatment priorities can also differ depending on the age at diagnosis. Someone diagnosed with IBD later in life may face different challenges than someone who has lived with the disease for decades.

Ageing also brings additional safety concerns, like a weakened immune system. There is an increased risk of infections, cancer, and blood clots which can make treatment challenging. Some IBD medications (e.g., corticosteroids) also increase these risks. But many of these risks can be reduced through preventive strategies like vaccinations, routine health checks, and maintaining a healthy lifestyle.

There is still a lot more to learn about ageing and IBD, so it’s essential that clinical trials include people of all ages to guide decision-making and treatment for people living with IBD. The following sections discuss topics relevant to older people who are living with IBD, including comorbidities, toilet access, retirement, and aged care. You can also navigate to other relevant pages, which are listed on the right-hand side of the page.

Comorbidities

As you get older, you are more likely to develop other diseases alongside IBD. The following list links to other organisations in Australia that you might find useful if you have other conditions alongside IBD.

• Arthritis: Arthritis Australia
• Autoimmune disease: Psoriasis Australia and the Liver Foundation
• Cancer: The Cancer Council. There are also cancer-specific foundations such as Bowel Cancer Australia, Australian Skin Cancer Foundation, and Lymphoma Australia
• Chronic obstructive pulmonary disease and other lung diseases: Lung Foundation
• Kidney disease: Kidney Health Australia
• Incontinence and constipation: Continence Health Australia
• Osteoporosis: Healthy Bones Australia
• Parenteral nutrition: Parenteral Nutrition Down Under
• Sleep disturbances: Sleep Health Foundation
• Rare diseases: Rare Voices Australia

Toilet access

Toilet access can be a real challenge for many in our community. Below are some practical resources that can help you feel more comfortable when you’re out and about.

• The National Public Toilet Map shows the location of more than 16,000 public and private public toilet facilities across Australia.
• Can’t Wait Card. Crohn’s & Colitis Australia (CCA) have Can’t Wait Cards that are free for CCA members who have a formal diagnosis of Crohn’s disease or ulcerative colitis. Can’t Wait Cards can be used to help you gain access to a toilet in times of urgency. If you are not a CCA member you can purchase the card for a small fee from our shop.
• Master Locksmiths Access Key (MLAK). This key allows people with a disability 24/7 access to accessible public toilets and facilities. The key opens all doors and toilets fitted with a lock that uses the special MLAK cylinder – often in National Parks, local council areas, railway stations, and locked disabled toilets.
• The Hidden Disabilities Sunflower Scheme. The Sunflower network offers discreet products like lanyards, badges, and wristbands. The products signal that a person has a non-visible disability, condition, or chronic illness and may need extra support and understanding. You may find the lanyard or wristband helpful when you’re out and about and need assistance or priority access to toilets. You can purchase products through the website.

Early retirement

While the medical challenges of IBD are often the main focus, living with Crohn’s or colitis can also significantly impact other areas of life, such as finances and work.

If you don’t want to retire yet but are finding full-time work unmanageable, you could consider working in a part-time capacity, seeking flexible working arrangements, or asking for modified duties. If you’re forced to retire early due to your illness, you may be eligible for the JobSeeker Payment or Disability Support Pension. Once you reach 67 years old, you may be eligible for the Age Pension or a Commonwealth Seniors Health Card. Visit Services Australia to find out more and see what you could be eligible for. Keep in mind that benefit payments can be less than a regular income and eligibility criteria apply.

If your work career is cut short because of IBD, you will stop earning superannuation and may feel stressed about the future. However, if you have Income Protection Insurance or Total Disability insurance (e.g. through your superannuation (super) or a separate policy), you may be eligible to claim support through that. Most super provides disability cover without any health questions (up to certain limits), meaning you may still be eligible to make a claim if you had Crohn’s or colitis before you joined the super fund. However, there may be waiting periods or exclusions. You should read the Product Disclosure Statement to be certain of what is covered in your policy. If you are making a disability claim through super or other insurance, you should make it as soon as possible. However, claims can often be made years after stopping work. Generally, disability cover in super stops at age 65 but it can vary depending on your fund.

When you make a claim, there’s often many forms to fill in and other papers to lodge. You might need to attend medical examinations. Claims can take up to 12 months or sometimes longer. If your claim is successful, the money will go into your super account, and you may need to pay tax on the amount you withdraw. If your claim is unsuccessful, you can submit a personal complaint to your insurance or superannuation provider, lodge an official complaint with your provider’s internal dispute resolution services, send a written complaint to the Financial Ombudsman Service, or seek urgent legal advice.

You may also be eligible to access your super early on either compassionate grounds, incapacity or severe financial hardship depending on your specific situation. You can visit the Australian Tax Office website to find out more about your eligibility. For all of these support payments, you must meet strict eligibility criteria.

You could also consider seeing a financial planner if your budget allows. Financial planners can help you plan your retirement, ensure that your insurances are set up correctly, and provide advice on accessing your super (early if required). There are also certain schemes financial planners have knowledge of, such as downsizer super contributions, which can allow some people to put up to $300,000 from the sale of their home into their superannuation. Seeing a financial planner can be expensive so you should assess whether it is right for you.

You can find a licensed financial advisor on the Money Smart website or the Financial Advice Association Australia website.

Residential aged care  

As you get older, you may worry about transitioning into aged care and whether your condition will be managed effectively. Aged care facility staff will have varying knowledge of IBD. The key to a positive experience in residential aged care is to advocate for yourself and ideally have a fully engaged family member or friend who can advocate for you. Family/friend advocates are especially important for those who are struggling with memory issues – in which case an advocate should attend all appointments. Aged care facility residents, their family, or staff are welcome to contact our NurseLine on 1800 138 029 for information and support around managing IBD.

Care plans

If you or a loved one are transitioning or already living in residential aged care, you should have a Care Plan. A Care Plan in aged care is a very detailed document that outlines your care needs, preferences and goals, and helps the aged care staff know how to support you. It is highly individual and covers information from your food preferences, favourite activities, languages spoken, to how much alone time you enjoy.

Your Care Plan should have detailed information about your condition, not just your diagnosis and medications. You and/or your family members should ensure there is proper documentation about your condition and how it needs to be managed so that the staff know how to help you. Medications should be described, including how and when they need to be administered. If you are on a biologic therapy when you enter a residential aged care facility and need an infusion (e.g., Vedolizumab), you may be able to get the medication administered in the facility. Some people with private health insurance can have infusions in their facility, or you may be able to attend a public health service with a Hospital In the Home service who will come into your aged care facility to provide the infusion. If you take subcutaneous biologics, they can usually be administered by the nursing staff of the aged care facility. This takes some logistics to get set up but is achievable.

Often people in residential aged care do not continue seeing a gastroenterologist and this can delay receiving timely care in a flare up. However, many facilities now have a device to support video health consultations. This can help you avoid unnecessary trips to clinic appointments and save on the travel costs of non-urgent ambulance transport. You should request a bowel chart to be available for your appointments or in your room so that you can track your symptoms.

You should ensure the contact details of your healthcare team are included in your Care Plan. You may also request that the aged care facility staff contact your treating team (with you present) to help design your Care Plan together. As you get older and become frailer, your treatment goals can change. The aim might change from healing the bowel to improving symptom management and maximising quality of life.

It’s important that you or your family members know what’s in the Care Plan so you know the level of care to expect. The plan should be transparent and shared with you and your family. Your Care Plan should be regularly reviewed and updated at least once a year. You might find you need more regular updates if your condition changes. You can request a review to your Care Plan at any time, and you should be provided with an updated copy for your records.

Support for in-home care  

If you are living at home rather than at a residential aged care facility, you may be eligible for assistance through the Support at Home program. Support at Home aims to provide more effective in-home aged care to support older people to stay independent and at home for longer. If you have IBD, Support at Home could be helpful to assist you in accessing medical care as well things like personal care, gardening, meals, and transport.

From 1 November 2025, Support at Home will replace the existing Home Care Packages Program and Short-Term Restorative Care Program. If you are an existing Home Care Package care recipient, you will automatically be approved for services under the Support at Home program.

When you are assessed as eligible for the Support at Home program, you will be assigned a classification based on your needs. Support at Home has 8 classifications for ongoing services and these are linked to different levels of care. The more care you need, the higher your classification and quarterly budget will be. You can learn more about Support at Home on the My Aged Care website.