It's not just ageing: Don't accept worsening symptoms of inflammatory bowel disease

Australia has one of the highest rates of inflammatory bowel disease in the world, with more than 100,000 people affected. It's estimated by 2030 one third of people living with IBD will be aged 60+.

Most people are diagnosed with IBD as young adults but for older Australians the medical knowledge and treatments were not available when they first presented with symptoms, and many went undiagnosed for many years.

IBD occurs when parts of the digestive tract become damaged by prolonged inflammation.

The two most common types, Crohn's disease and ulcerative colitis, are serious chronic illnesses which can majorly disrupt the life of a sufferer.

May is national IBD Awareness Month which offers an opportunity for people living with the conditions to speak up and increase public understanding.

The most common symptoms of inflammatory bowel disease are: diarrhoea, often including blood or mucous, abdominal pain, loss of appetite, tiredness, fever and weight loss.

While there is no identified cause or cure, there are a raft of new treatments and diagnosis methods have changed significantly in recent years.

It took more than 50 years for doctors to finally diagnose Jan (78) with Crohn's disease.

As a baby, Jan suffered with problems with her digestive system and intolerances to various foods. During her childhood and teenage years, she was thin and frequently had bouts of diarrhoea. At that time, one of the remedies offered to Jan was castor oil - a particularly shocking suggestion given that castor oil is known to cause diarrhoea. "The outcome from attempting to treat my symptoms with castor oil was so horrific and torturous that I wished I was dead," she said.

Thankfully Jan's parents decided to cease the castor oil treatment but as she moved into her 20s, she suffered from almost constant diarrhoea.

Throughout her 30s, 40s and 50s, Jan continued to experience pain, bloating, diarrhoea, malabsorption and weight loss, along with joint and muscle aches and pains, fatigue and skin problems. Throughout this time, doctors simply prescribed herbal medications, "better nutrition" and, at one stage, she was treated for the more commonly diagnosed irritable bowel syndrome.

Despite seeing specialists through the years and having numerous tests which led nowhere, it wasn't until she spoke with a Crohn's & Colitis Australia nurse who recommended she went to see another gastroenterologist, that she was finally given an answer. Another colonoscopy followed with multiple biopsies which resulted in a definitive diagnosis of Crohn's, along with IBS and diverticulitis.

Jan's IBD and Crohns still have a major impact on her life.

As an older person, she finds that she doesn't bounce back as quickly from flare-ups and the recovery process is more significant.

Her life is often restricted by the disease, as she's reluctant to make commitments that may rely upon her presence.

"The diseases are unpredictable and so I usually avoid making plans too far in advance. I can feel fine when I make a commitment or a plan, but a week later when the occasion arises, I'm incapable of leaving the house," she said.

However, Jan says that finally receiving a formal diagnosis has made a huge difference to her life.

"The pain has become better since the diagnosis. Just knowing exactly what's causing the pain makes it much easier to deal with and I'm now in a position where I can develop more informed and effective strategies for coping. New medication has also made a difference.

"My hope is that no one will now need to live so long with undiagnosed IBD and that better diagnostic methods and treatments will continue to be reflected in the lives of those suffering with this disease."

The Royal Australian College of Physicians conducted research showing that people aged 60+ are less likely to experience steroid-free remission from IBD, be prescribed biologics (a relatively new form of treatment) and have a specialist IBD nurse and/or a multidisciplinary IBD Team, than younger patients.

The research also found preventative care was less likely to be provided to older patients possibly because of the comparatively less common involvement of specialist allied health professionals in patient care.

Older patients were less likely to be provided with reviews for nutritional assessment and treatment with a dietician, questioning about smoking habits, skin cancer assessment and influenza vaccinations and routine investigations such as testing of calcium and vitamin D, as well as a bone mineral density scan.

Older patients were also underprepresented in clinical trials and there was a lack of evidence-based treatment guidelines for their care.

The study report found the management of elderly patients with IBD was a challenge that required a multidisciplinary model of care with greater involvement of specialist IBD nurses, considered use of immunomodulators and biologic drugs and a greater focus on preventive care.

Despite living with regular diarrhoea, stomach pains and weight loss, it wasn't until he was in his 50s that Tony was given a Crohn's diagnosis.

Like many older people who have now been diagnosed with IBD, the knowledge, resources, and medicine necessary for making a clear diagnosis simply weren't accessible for much of Tony's life.

While ultrasounds were available, they only showed inflammation, whereas a tissue sample is required to make a diagnosis - something doctors were hesitant to do.

Tony suffered from regular diarrhoea, stomach pains and weight loss. While disruptive to his life, he said the symptoms were manageable. Now, Tony looks back at photos of himself in his teens and twenties and it's obvious to him there were times when he was experiencing a Crohn's attack.

When he was 50, Tony started to experience serious attacks around three times a year and had to be rushed to hospital on a few occasions. He was finally given a Crohn's diagnosis.

Around a year later, Tony had to have 150mm of his bowel removed. After this, he was able to manage his symptoms with fulltime medication.

"There's only one way to describe an attack and that's agony. The only thing you want is morphine and a dark room," he said.

Both Jan and Tony stress the need for people living with IBD to maintain a positive frame of mind.

"My state of mind is positive, always has been," said Tony. "Negativity and Crohn's don't go well together. It's attached to the nervous system, so if something goes wrong, it brings on a flare up. Being relaxed, stress-free and drama-free is so vital for anyone with Crohn's. We need to live a content life. We can't afford to have unnecessary drama."

For older people who are living with IBD or going through the diagnostic process, Jan has two pieces of advice. The first is that you should never accept worsening symptoms as part of the aging process. If you find that your condition is becoming worse, get a range of opinions and find a specialised medical professional who can dedicate time to assisting you.

The second piece of advice Jan has is to remain positive. She says, "A positive attitude is key. Make the most of when times are going well and learn to accept it when things aren't going well.

"Pace yourself and don't become too stressed trying to accomplish more than is feasible."