Patient Voices Podcast Episode 4

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Our fourth guest on The Patient Voices Podcast is James Amos, an active young man, who spent many years running his own gym studio, working as a personal trainer following an injury that stopped him from completing Royal Marines training.

James sold his gym and had big plans to go travelling around Mongolia with his wife and two dogs in a 4 wheel drive. Unfortunately, in January 2019 he was diagnosed with primary sclerosing cholangitis (PSC) and only months later received another diagnosis of Crohn’s, just before the start of the Covid-19 pandemic.

Like many others, James’ journey was long and tortuous. He felt like he was “constantly being misdiagnosed”, having seen several different GPs over the course of two years regarding problems with a recurring abscess. Eventually, one GP raised concerns that the abscess could be a fistula. He was referred to a surgeon who recommended further investigations including a colonoscopy, as fistulas often occur due to inflammatory bowel disease. 

What is primary sclerosing cholangitis (PSC)?

PSC is a long-term disease of the liver and gallbladder. Sclerosing means scarring and in PSC, scarring of the bile ducts, which normally allow bile to drain, make the ducts narrow and hard. As a result, bile, an important digestive fluid that breaks down fats, backs up into the liver and causes damage to the liver. PSC is closely associated with inflammatory bowel disease, usually ulcerative colitis, but is also linked to Crohn’s disease.

What is an abscess?

An abscess is a painful collection of pus, white blood cells, bacteria and dead tissue, usually caused by a bacterial infection.

What is a fistula?

Fistulas are abnormal connections or tunnels which can form connecting two different parts of the bowel together or the bowel to other organs such as bladder, vagina or skin. Fistulas commonly form in the tissue surrounding the anus. Fistulas are more common in people with Crohn’s disease compared to ulcerative colitis, as the inflammation in Crohn’s disease tends to penetrate the whole thickness of the bowel wall creating a hole which can then become a fistula. 

What is a colonoscopy?

A colonoscopy is a procedure that allows healthcare professionals to examine the rectum and large bowels using a long, thin, flexible tube with a small camera inside it (a scope/colonoscope). Colonoscopies are incredibly useful tools that can help to explore possible causes of abdominal pain, rectal bleeding and detect conditions like colitis, inflammatory bowel disease, colon polyps and diverticulosis

Personalised care allows people to have choice and control over the way their care is planned and delivered based on their individual needs and wants. During what James calls his ‘dark period’ when he was newly diagnosed, he significantly adjusted his diet. He suffered with painful abdominal cramps and felt that his “gut was going to drop out of [his] body”. While waiting to have his first appointment with the gastroenterologist following his colonoscopy, he was left feeling so frustrated and fatigued with his symptoms that he tried a myriad of recommended diets including the low FODMAP diet and low fibre diets which unfortunately did not help. He was recommended another type of diet by one of his gym clients, a specific carbohydrate diet (SCD). This is a very strict diet that prioritises foods that can be easily digested. For more information about diets, speak to your healthcare team (consultants and IBD nurses) and do your own research. Everyone’s body is different and as a result, different approaches work for different people. On this diet, James’ cramps improved and his energy levels recovered with time.

How does James manage daily life with Crohn’s?

  • Manages stress – James lives an active lifestyle and exercises regularly to manage his stress levels, which helps control flare-ups
  • Gets enough good quality sleep
  • Avoids trigger foods such as onions
  • Sticks to medication regimen 

Travel is an incredibly important part of James’ life. He had questions about how his condition would impact his life plans. During his first appointment with the consultant, he explained how he was not willing to let his new diagnosis of Crohn’s stop him from doing the things that he wanted to do, like travelling with his wife. To help James make the right decision for himself about his own care, the consultant explained  the pros and cons of different therapy options. The Crohns and Colitis UK website also has a comprehensive source of information that helped answer some of James’ questions. Having not even taken paracetamol, adjusting to his new medication protocol was more challenging than he expected and despite the pandemic halting his travel plans, it has allowed him to focus on managing his symptoms and trial different medications. 

The future of patient care

James was diagnosed with Crohn’s just before the onset of Covid-19. Patients with inflammatory bowel diseases had to shield, NHS services were scaled back and charities halted operations. The pandemic accelerated the adoption of technologies in healthcare with face-to-face consultations going virtual overnight. Virtual meetings cannot fully replace face-to-face interactions, but they do provide a platform for routine appointments and free up valuable time for healthcare professionals to focus on patients with the greatest needs. Coronavirus has shown that new models of patient care are possible as we move into a hybrid way of delivering healthcare. 

James, and many others like him, had to manage the complexities of an inflammatory condition alone. It was not possible for James to speak and connect with others who were already living with his condition however he finally found Ampersand Patient Voices, a group of individuals with lived experience of inflammatory conditions who meet regularly to share their experiences, ideas, and feedback on services.

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