The aim of most treatment for Crohn’s and colitis is to achieve disease “remission”, meaning that your symptoms are well controlled and results from tests show little disease activity. It’s a good idea to talk with your doctor about remission because it’s sometimes understood differently depending on how they define it.
Similar to other chronic illnesses, there are changes you can make to your lifestyle to help you stay in remission and lower your risk of IBD complications in the future. For example, keeping track of your disease by checking in with your doctor or healthcare specialist and continuing your prescribed therapy will reduce the chances of running into any surprises. How often you do this will largely depend on your own needs and the nature of your IBD.
What is considered “normal” for you when you are well, can be very different to what is normal for another person with IBD, especially if you have had previous surgery/bowel resections. Noting down any symptoms in a diary can help both you and your doctor recognise a flare of your IBD early on, preventing further damage to the bowel.
Routine monitoring: What to expect
- Common tests to make sure you are staying healthy include blood tests, stool tests, imaging (e.g. MRE) and endoscopies.
- Regular testing will help you and doctors stay ahead of any changes in your health that may need attention.
- Sometimes even if IBD has become active, there will no symptoms and the inflammation can only be noticed through tests.
Continued testing during IBD remission can help:
- to monitor disease activity,
- to check for any complications,
- and to see if your medications are working well.
If you are well, and not on any immunosuppressant medications (medications that suppress the immune system), routine blood tests will be required less frequently. However, at least yearly with review by your GP and specialist is often recommended.
If you are on immunosuppressant medications, more regular consultations with more frequent blood tests are required. It is important to perform all the requested blood tests, and attend follow-up as directed, because even if you are asymptomatic (not showing symptoms) your medication may still be causing damage to your health.
An easily accessible, and non-invasive (doesn’t break the skin), approach at assessing disease activity in IBD is measurement of faecal calprotectin, which is can be measured by a stool test. This test is not covered by Medicare currently. Some providers don’t charge, while others may charge up to $110
When the lining of the intestine becomes inflamed (red and swollen), it will release higher levels of faecal calprotectin, and may tell your doctors that there are areas of bowel with active disease. Your doctors may then ask you to provide regular stool samples (for example, 3-6 monthly), as well as at times when your symptoms have increased.
The most accurate way to check the health of the bowel is by looking directly by an endoscopy (colonoscopy and/or gastroscopy). Your doctor may recommend an endoscopy because your symptoms have increased or they are suspecting a disease flare. They will want to see how far the inflammation has spread along the bowel and may even take a biopsy (sample of intestinal tissue) to see how deep the inflammation goes.
Depending on your level of risk of complications, you may be advised to have regular endoscopies. They will check for polyps (small growths) in the intestines or colorectal cancer. The frequency and type of endoscopy depends on a few factors:
- disease location (small or large bowel),
- presence or absence of other associated diseases (e.g. primary sclerosing cholangitis)
- risk of colorectal cancer (if you have a family history of colorectal cancer in a relative <50 years old or if you have previously had concerning polyps),
How often you have an endoscopy may vary from once a year to once every 5 years, depending on your personal and family history.
Due to inflammation in the lining of the intestines, people with IBD may find it harder to absorb certain nutrients. One of the most common deficiencies is iron, and a complication of low iron levels is anaemia (low red blood cell count). Your doctor will regularly check your blood count and iron stores, and you may at times require iron replacement either through supplements or intravenously (through the veins).
Particularly in people who have had long-term treatment with steroids, there is an increased risk of osteoporosis (bone weakness) in IBD. The main complication of osteoporosis is fractures (breakages) in the bones. You may require monitoring of your bone mineral density (BMD, an indication of how strong your bones are) with specialised bone scans. If this is found to be low you may need specific treatment to strengthen your bones.
How to stay in remission
- Taking your medication as prescribed is the one of the best ways to stay healthy and in remission.
- Look after your wellbeing by staying active, eating well and taking care of your mental health.
- Stopping smoking and reducing your alcohol intake are two important steps for staying in remission.
Take your medication
One of the most important factors in staying well, is continuing to be proactive about your health, which can be challenging when your IBD is in remission. Given the chronic nature of IBD, it often needs long-term treatment, even during asymptomatic periods, so that you can stay in remission and prevent future flare-ups. It is crucial to remain on your medications, as per your specialists’ advice, and not to stop or change medications without first discussing it with them.
Understandably, it can be incredibly difficult to remain on certain medications if you’re experiencing side effects, or have financial or logistical issues. You should talk with your doctors if you have these concerns, so that a practical and safe solution can be found.
Know your vaccines
Keeping a record of your vaccinations is particularly helpful for people with IBD, especially if you are on, or being considered for, immunosuppressant medication. Maintaining routine vaccinations, such as the yearly influenza (“flu”) vaccine is also recommended.
Certain vaccinations, which are composed of “live” virus particles, are considered safe in patients with a normal immune system; however, in those whose immune system is dampened (e.g. due to certain immunosuppressant medications), they are not recommended. It is important to always disclose to a doctor or nurse which IBD therapies you are receiving, before receiving a new vaccination.
Find more information on Vaccinations and IBD
Stopping smoking is recommended for all members of the general population, given its relationship with such a vast number of medical complications. This is especially the case, however, for patients with Crohn’s disease, as smoking is associated with greater disease activity, more flares and decreased effectiveness of medical therapies. If you want to quit smoking, speak with your doctor for tips and strategies on how to achieve this.
Protect your mental health
The significant impact of IBD on mental health is very well recognised, and your mental wellbeing is an absolute priority to both your GP and specialist. Feelings of anxiety and/or low mood can be common. Fortunately, there are many avenues for support, and optimisation of patients’ psychosocial wellbeing is very much a part of managing IBD.
If your mood or mental health is becoming a concern for you, it is strongly recommended you discuss this with your doctors, as there are many strategies (such as a GP mental health care plan) to access the support you need.
Find more information on Psychological Health and IBD
Focus on your wellbeing
Looking after your general wellbeing is important, especially as some of the common medical conditions doctors check the population for, are even more common in IBD patients (depending on your medication regimen).
Maintaining regular GP follow-ups and staying up to date with your health checks (including pap smears and breast screens for women, as well as skin checks), is encouraged. Good nutrition, regular exercise and minimising alcohol intake are also good habits to get into.
Find more information on Exercise and IBD
When to seek help
While people with IBD will find their symptoms may fluctuate day-to-day, knowing what to look out for and when to seek medical attention is important. Having a good understanding of what is normal for you, will help you quickly detect any new signs or symptoms.
Some common symptoms that may warrant a review by a doctor include increasing numbers of bowel motions, any blood in the stool, abdominal pain, any nausea/vomiting, and difficulty tolerating food or drink. While many of us associate IBD with diarrhoea and increased frequency of bowel movements, the opposite (i.e. constipation) can also be a concerning symptom. If any of these occur, depending on their severity and acuity, you may need to make an early appointment with your specialist, or present to an Emergency Department for assessment.
Ultimately, managing IBD is a partnership between your doctors and other health professionals, as well as yourself. It’s always a great idea to keep them in the loop about changes in your life, be that medical, financial or lifestyle. Things they may be particularly interested in are any changes to your medical condition(s) or medications, as this may impact the way they manage your IBD, and any big future plans, especially those surrounding pregnancy.
Find more information on Fertility, Pregnancy and IBD
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The information on this webpage was developed by CCA volunteer, Dr Tanya Lee.