“My IBD was misdiagnosed as IBS: my story”

Georgia explains, “I’ve had symptoms since I was about maybe eight years old, but when I was 17, it got really bad. I was kind of going through GCSEs and a lot of stress and other things in my life happening and stress is quite a big trigger. That’s when I realised there’s something wrong, as I was spending a lot of time in pain, on the toilet.

I’d seen a couple of doctors in the NHS, but I just wasn’t getting any real answers. I felt I was fobbed off with steroids and pills that didn’t really fix the issue.

My symptoms were labelled as IBS – irritable bowel syndrome – which is not the same as IBD. There is a lot of misinformation and confusion about the two conditions.”

The challenge of misdiagnosis

When IBD presents with pain and diarrhoea, it can be difficult to differentiate from IBS and because IBS is more common. The symptoms of IBS are abdominal pain, bloating and change in bowel habit. It is not uncommon that people are misdiagnosed for many years such as Georgia, because IBS is also common in young people.

With the large volume of online information and now AI tools, patients need to also be wary of non-verified sites and non-clinically proven commercial treatments – relying on these can invoke anxiety and harm.

Getting a diagnosis

With her symptoms becoming progressively worse, Georgia was eventually diagnosed with IBD following a colonoscopy when she was around 16-years-old.

“I was given several courses of steroids and mesalazine, an anti-inflammatory to treat IBD, but it was not under control,” explains Georgia.

She arranged to see Prof Naila Arebi, Consultant Gastroenterologist and Endoscopist at The London Clinic, to gain a better understanding of the disease and its implications for her future and the options for therapy, as she was experiencing side effects to the treatments offered and was still unwell.

A personalised approach

In Georgia’s case, Prof Arebi said, “I listened to Georgia’s concerns. I explained the nature of the disease, the differences to IBS and the prognosis for the future. There was uncertainty whether this was Crohn’s disease or ulcerative colitis, so I explained the differences between the two and arranged for tests to help differentiate them. I also spent time discussing treatment options and merits of each drug and the role of surgery.”

Prof Arebi said Georgia was “understandably anxious because she read that people with IBD may develop bowel cancer – so I addressed this and explained the reasons for regular assessment of the bowel in the future.”

Treatment goals were discussed, which included maintaining remission of the disease through regular monitoring, through regular stool tests and treatment adjustments.

The impact of stress on IBD

Studying was a particularly difficult time for Georgia and a trigger for the disease to flare.

Georgia said, “Whilst I was going through Uni, it was the worst time with my IBD problems and the uncertainty of not knowing what was going to happen. Prof Arebi was someone who really made me think I can get through it. And I think that is one of the reasons that I did get through it because not only was I dealing with university, but also dealing with this disease, so I do think Prof Arebi really helped me in that sense.”

Prof Arebi said Georgia’s disease became active due to the stress of studies and exams, and she developed side effects to immunosuppressants, so treatment was changed to vedolizumab (biologic drug) which she failed and switched to ustekinumab and she is now in remission. This is referred to as personalised medicine – adjusting treatment approach to reflect a person’s unique clinical state and expectations.

Ongoing care and monitoring

People with IBD require access to advice when symptoms relapse. The London Clinic offers immediate tests to investigate symptoms and regular monitoring to pre-empt complications with specific tests.

Prof Arebi said, “It is often overlooked that IBD is a complex and multi-systemic disease. Other organs may be affected as part of IBD or treatments prescribed for IBD. Treatment decisions are often difficult and may need to be personalised.”

A multidisciplinary team approach

In recognition of this complexity, The London Clinic has set up an IBD multidisciplinary team with leading IBD experts from different fields, namely specialist gastroenterologists, colorectal surgeons, radiologists, histopathologists, pharmacists, psychologists and dietitians. This set up reduces diagnostic uncertainties and facilitates difficult therapeutic decisions.

Georgia is still under The London Clinic, but explains, “I’m a lot better now, but I know I can see Prof Arebi for an appointment if something’s wrong and know that she’ll be there to help, if there is something going on.”