Crohn’s and Colitis Awareness Month #ShatterTheIBDSilence

This May marks Crohn’s and Colitis Awareness Month, a crucial time to shed light on conditions that affect approximately 180,000 Australians and their families. These chronic inflammatory bowel diseases can have a profound impact on daily life, and understanding them is the first step towards better support and outcomes.  

What is Inflammatory Bowel Disease?

Inflammatory Bowel Disease (IBD) is an autoimmune condition, where the body’s immune system mistakenly attacks healthy tissues in the gastrointestinal system, typically in the small or large intestine.

There is no definite cause but we know that genetic and environmental factors play a role. 

It is important to note that IBD is not the same as Irritable Bowel Syndrome (IBS). Although they have similar symptoms, IBS is not an autoimmune condition and does not cause damage to the intestines. 

IBD affects 1 in every 250 people aged 5-40. Australia has one of the highest rates of IBD in the world!

Difference between Crohn’s Disease vs Ulcerative Colitis 

Both Crohn’s Disease and Ulcerative Colitis fall under the IBD umbrella, but they affect the body differently:

• Crohn’s Disease can cause inflammation anywhere along the gastrointestinal tract, from the mouth to the anus. It often involves deeper layers of the bowel wall and can appear in "patchy" sections.

• Ulcerative Colitis is limited to the colon (large intestine) and rectum. Inflammation is continuous rather than patchy and typically affects only the innermost lining of the colon. 

Signs and Symptoms

IBD symptoms can vary significantly from person to person. Some experience frequent flare-ups, while others may have long periods of remission.

Common symptoms include: 

• Abdominal pain or cramping 

• Frequent diarrhoea (sometimes mixed with mucus and blood)

• Urgency to use the bathroom 

• Nausea and vomiting 

• Bloating

• Tiredness and fatigue 

• Fevers

• Loss of appetite

• Weight loss without trying 

• Iron or B12 deficiency

Less common symptoms include:

• Constipation

• Joint pain 

• Mouth ulcers

• Skin rashes 

• Eye inflammation

• Liver inflammation

Diagnosis

Diagnosing IBD typically involves a combination of assessments, which may include:

• Blood test - inflammatory markers (CRP & ESR), haemoglobin, iron, B12, liver enzymes 

• Stool test - faecal calprotectin

• Gastroscopy & colonoscopy - to see visible signs of disease and take biopsies for testing

• MRI, CT or ultrasound - to discover inflammation and possible complications

  
  

Treatment

Currently, there is no cure for IBD but there are a variety of treatments available to reduce inflammation and maintain remission. 

Medication:

• Aminosalicylates (5-ASAs)

• Immunosuppressants 

• Steroids 

• Biologics

Supplementation:

Vitamin and mineral supplementation can be needed to correct deficiencies due to malabsorption.

• Vitamin and mineral supplements

• B12 injections

• Iron infusions 

• Probiotics: the jury is out on probiotics currently but watch this space as this is an area of future research!

Diet:

• Exclusive Enteral Nutrition (EEN)

• Crohn’s Disease Exclusion Diet (CDED)

• Low FODMAP diet

• Low residue diet

Please note, dietary interventions are highly individual and can be quite restrictive. Dietary changes should be guided by healthcare professionals with expertise in IBD.

Community

Living with IBD can feel isolating, but you are not alone. Crohn’s & Colitis Australia (CCA) is an amazing resource, providing education, support groups, and advocacy for people living with IBD and their families. This practical and emotional support is invaluable!

Find out more at: https://crohnsandcolitis.org.au/ 

Our dietitians wanted to open up and share their own IBD journeys with you…

Jemma’s diagnosis story

I caught gastroenteritis a lot when I started working in paediatric hospitals early in my career (a favourite part of my day was playing with my long term patients who had been admitted with significant growth faltering and acute gastroenteritis). I didn’t think much of it at the time. Over the next 10 years, I experienced what was suspected to be IBS symptoms. I distinctly remember having an acute bout of food poisoning (which turned out to be salmonella) that felt like it never went away. I became B12 deficient (picked up when my now husband, who was training to be a GP at the time, noticed I had geographic tongue, a sign of B12 deficiency) requiring several rounds of injections. I had a colonoscopy early on that showed nothing of significance and I did get some relief on a low FODMAP diet, so I experimented with this over 10 years and was able to transition back to a fairly normal diet (with minimal onion & moderate wheat). This managed my symptoms for years.

When I was pregnant with my 2nd child, I started passing blood. I’d been away for a weekend, had eaten more bread than usual and didn’t really think much of it. To be honest, I was in denial a bit (and hoped it was capsicum or strawberries or something). My husband gently suggested I should have it investigated further. I raised it with both my GP at the time and my obstetrician, both of whom suggested it could be haemorrhoids. My husband didn’t think this fitted my symptoms and encouraged me to get this further investigated…but I was pregnant, working, raising a 2 year old and I just hoped it would go away. It didn’t! I eventually had another colonoscopy when my 2nd child was 6 months old. This involved clear fluids from the day before (which happened to be Mother’s day), bowel prep and fasting while breastfeeding. This was less than ideal (although somewhat dismissed by the colorectal surgeon)!

My IBD diagnosis wasn’t straight forward. I have some signs of Crohn’s and some of colitis. I was initially diagnosed with IBD-indeterminate, although my pathology is more Crohn’s like.  Since being treated, my gastrointestinal symptoms have been the best they’ve been in years! (And my FODMAP intake is the highest it’s been in years too!) I’ve tried the Crohn's disease exclusion diet and incorporate elements of this day to day. I experience some granulomas on my skin from time to time, some fairly debilitating joint pain (suspected to be a form of autoimmune arthritis that seems to have everyone stumped at the minute), mouth ulcers and have had some possible eye symptoms that are still being investigated. Whilst my symptoms sound fairly classical of Crohn’s, the underlying pathology is anything but and clear diagnoses are somewhat absent. I’m hopeful that biologics and future treatment will manage my combination of symptoms and in the meantime take solace in the fact that my gastrointestinal symptoms are very manageable. My husband has commented that my Crohn’s symptoms are the least troublesome of anyone he’s ever seen with Crohn’s and we wonder if eating as unprocessed a diet as possible has a role to play in this. 

Katie’s diagnosis story

It took 18 months for me to be diagnosed. It all started on a trip to Thailand when I was 14 years old. I got severe food poisoning which led to abdominal pain, nausea and reflux that wouldn’t go away. I lost 8 kg without trying, I was exhausted 24/7 and I had a lot of time off school. My GP initially found it difficult to pinpoint the issue because the majority of my symptoms presented in the upper abdomen. My blood tests and breath tests were normal, and I even had a gastroscopy (camera down throat into stomach) which was normal. I was put on Nexium to help manage the reflux. After 18 months, my GP finally referred me to a gastroenterologist. Straight away, he suspected that it was Crohn’s disease and he was right.

I had more blood tests to check for any nutrient deficiencies and inflammation markers, and a stool test testing faecal calprotectin levels. Both the inflammation markers and faecal calprotectin came back high so I had a colonoscopy within two weeks, which confirmed that I had Crohn’s disease. I was also deficient in iron and vitamin B12 so I had to have an iron infusion and B12 injections. I was also told to try the low FODMAP diet for 6 weeks to help with my symptoms. I did this without the guidance from a dietitian, therefore I didn’t know how to manage the ‘reintroduction’ stage. It didn't seem to improve my symptoms at all, so I went back to my regular diet, opting for lactose-free dairy products and avoiding very fibrous food such as raw vegetables, nuts and seeds.

I manage my Crohn’s by taking aminosalicylates and I see my gastroenterologist on a regular basis (every 6-12 months) to check for a flare-up and/or any nutrient deficiencies. Now, I eat almost anything and everything, and if my symptoms worsen, I try to reduce my FODMAP intake until it resolves. 

How Can We Help?

Our Accredited Practising Dietitians have both professional and personal experience with the varying symptoms of Crohn’s and Colitis. We can help you manage your symptoms and live your best life!

Living with IBD presents significant challenges, but increased awareness, understanding and support can make a real difference. Here’s how you can make a greater impact this Crohn’s and Colitis Awareness Month:

• Share this information: Help us spread awareness by sharing this post (+/- share your story) with your friends & family. 

• Learn more: Visit the Crohn’s and Colitis Australia website for more information and resources https://crohnsandcolitis.org.au/ 

• Support research: Consider donating to organisations like CCA to support vital research into IBD

• Listen and empathise: If you know someone with IBD, offer your understanding and support.

• Participate in local events: Check the CCA website for local awareness events you can get involved in. We might see you there :) 

Written by Jemma Watkins (APD) and Katie Vickers (APD)