The first few months after diagnosis are busy, but they follow a fairly predictable path. Knowing what to expect makes it easier to take part in your care rather than simply keep up with it.

Key points

• • Inflammatory bowel disease (IBD) is a long term condition, but most people reach remission with the right treatment.
  • The first months usually focus on calming inflammation, then keeping it calm.
  • Some treatments need blood tests, infection screening and a vaccine check before they start.
  • You do not have to learn everything at once. Your IBD nurse and pharmacist are there to help.

What does my diagnosis actually mean?

Crohn's disease and ulcerative colitis are the two main types of IBD. Both happen when the immune system causes ongoing inflammation in the digestive tract. Ulcerative colitis affects the lining of the large bowel. Crohn's disease can affect any part of the gut, from mouth to bottom, and can go deeper into the bowel wall.

IBD is not caused by anything you ate or did, and it is not the same as irritable bowel syndrome. It tends to move between periods of active disease, called flares, and periods of calm, called remission. The goal of treatment is to reach remission and stay there, ideally with the bowel lining fully healed.

What happens in the first few weeks?

The first step is usually to bring active inflammation under control. Depending on your disease, this might involve a short course of steroids, anti inflammatory medicines taken by mouth or as an enema, or a biologic. Your specialist will also plan a longer term medicine to keep the disease in remission once it settles.

Expect a few tests along the way. Blood tests check for inflammation, anaemia and nutrition. A stool test called faecal calprotectin measures inflammation in the gut and is a simple way to track progress. Before starting some medicines that dampen the immune system, you may be screened for infections such as hepatitis B and tuberculosis, and asked about your vaccinations, since some vaccines need to be given before treatment begins.

Why am I on more than one medicine?

Many people start on two types of treatment at once. One works quickly to settle the flare. The other works more slowly but keeps the disease calm over the long term. Steroids are a common example of the first kind. They are effective in the short term but are not meant for long term use, so the dose is reduced gradually over several weeks. Never stop steroids suddenly.

The long term medicine, called maintenance therapy, is the one that matters most over time. It keeps working even when you feel completely well, which is exactly when it is most tempting to stop.

What should I tell my care team about?

It can be hard to know what is worth a phone call. Contact your IBD team if you notice:

• • symptoms coming back or getting worse
  • blood in your stool, or more than usual
  • a fever or feeling generally unwell
  • side effects from a new medicine
  • unplanned weight loss
  • low mood or anxiety that is affecting daily life
  • any plans to become pregnant.
  • Severe abdominal pain, a swollen abdomen, heavy bleeding or vomiting that will not stop need urgent care.

How do I look after myself day to day?

There is no single IBD diet, and cutting out whole food groups without advice can lead to poor nutrition. A dietitian with IBD experience can help, especially if certain foods seem to worsen symptoms. Keeping a short diary of food, symptoms and medicines can help you and your team spot patterns.

If you smoke, stopping is one of the most helpful things you can do for Crohn's disease. Keep your vaccinations up to date, and look after your mental health too. Crohn's and Colitis Australia runs a Nurseline for people who want to talk through their questions with an IBD nurse.

How Ace can help

Starting IBD treatment often means several new medicines at once, and some need to be kept in the fridge. Ace pharmacists can explain what each medicine is for, help you follow a steroid reducing schedule, and make sure your maintenance therapy arrives on time, every time. Get started with Ace.

References

healthdirect. Crohn's disease.

healthdirect. Ulcerative colitis.

Crohn's and Colitis Australia. Nurseline.

Crohn's and Colitis Australia. crohnsandcolitis.org.au.

This article is for general information only and does not constitute medical advice. Your IBD treatment should be guided by your gastroenterologist and IBD team.