Caring for someone with IBD

Making treatment decisions

As a parent of a child with IBD, the role of treatment decisions will fall on you and your doctor. So how to make the right decisions?

IBD treatment options

Treatment of IBD can involve both medication and surgical options.

Get an overview of the treatments from Crohn’s & Colitis New Zealand. The IBD Handbook has detailed information about medications and surgery.

Health Navigator New Zealand also has information on medications for Crohn’s disease and ulcerative colitis, as well as links to videos and other resources.

The Crohn’s & Colitis Foundation of America has a page on understanding medications and side effects. Please note, some medications may not be available in New Zealand, and there are differences in eligibility for medications between New Zealand and the USA.

You can find specific information about Medicines you have been prescribed for IBD by searching Medsafe’s Consumer Information database.

Treatment eligibility

Your loved one’s doctor will let you know which treatments (medications and surgery) are available and if they are eligible for them. Some may be fully funded (free) and for others, there may be a cost. See also the Government support in the Tough times section of this website to find out how you may be able to lower your loved one’s health care costs.

Treatment risks and benefits

You may play an important role in helping to decide your loved one’s treatment options, so it’s important to learn how to weigh up the risks and benefits of medications.

You can read about how to understand the risks and benefits of medicines from NPS MedicineWise. Although this is an Australian website and the information is written for the ageing population, it’s still very relevant to anyone who wants to know more about the risks and benefits of medicines.

The USA FDA website has a page on generally managing the risks and benefits of medicines. Please note, some medications may not be available in New Zealand, and there are differences in treatments between New Zealand and the USA.

Shared decision-making

Shared decision-making means the patient becomes an active partner in their treatment decisions. Together with their doctor they consider their values, goals and concerns along with benefits and risks as perceived by them. Find out more about shared decision-making at the Australian Ask Share Know website.

What is the best way to discuss treatment options with their doctor? The Australian NPS MedicineWise website has a quick how-to list from the point of view of older people. It’s still a good resource for anyone with a chronic condition like IBD. Please note, some medications may not be available in New Zealand, and there may be differences in treatments between New Zealand and Australia. Carers NZ also has advice for carers on communicating with medical professionals.

You can put together a list of questions for your loved one’s doctor after visiting the NPS MedicineWise site.

For IBD-specific questions, see the Crohn’s & Colitis New Zealand talking with your doctor page. You can print this page and use it for your loved one’s next doctor’s visit. There is space to write down your questions as well as to record the current state of your loved one’s IBD.

Getting a second opinion

Even if a person has full faith in their doctor, sometimes they may want a second opinion. There can be many questions when you are considering a second medical opinion for your child or loved one with IBD.

What are your rights in New Zealand? When using a health or disability service in New Zealand, your rights are protected by the Code of Health and Disability Services Consumers’ Rights. This includes the right to a second opinion and being able to ask your doctor how to get a second opinion.