Living through a global pandemic is worrying and stressful for everyone, but even more so for people who have chronic or serious illnesses.
Nicola Turrell always vowed that Crohn’s disease was not going to stop her living her life, but after receiving a letter from the NHS defining her as ‘extremely clinically vulnerable’, that is exactly what has happened.
For her own safety, she know has to isolate for the forseeable future.
Despite the challenges of her illness, it was a shock to think of herself as vulnerable or ‘high risk’, and she wanted to use her time at home to do something really positive for other people living with this challenging disease.
So, Nicola set herself the daunting challenge of rowing 1,495 miles – the distance from London to Helsinki – to raise money for King’s College London, who are working to develop a Crohn’s vaccine.
The challenge will be split between Nicola and her husband James.
‘I knew that my Crohn’s disease would probably put me in the high risk group because I take medicine that suppresses my immune system, but somehow actually having it confirmed by text and then two letters still felt quite daunting,’ ‘It is such a worrying time for everyone and this really resonated with me, reminding me that I live every day with a manageable but, as yet, incurable chronic condition.’
In order to stay well, Nicola takes medicine that suppresses her immune system, which means she often struggles to get over even a mild cold. ‘I know for many people it’s not as easy to manage, and I have had times where I’ve struggled to get through each day due to the severity of the illness,’ she adds.
Nicola was first diagnosed with ulcerative colitis at 19, only getting the correct diagnosis when she was 30 and suffering a severe flare up.
‘I had been suffering with symptoms since I was 17, but had self-diagnosed with IBS and was too embarrassed to tell anyone about my illness,’ says Nicola.
‘I struggled to deal with the reality of the illness when I was first diagnosed, I was at university and no one had ever heard about ulcerative colitis or Crohn’s disease and it was not something I wanted to share.
I had frequent trips to the toilet, and I found it all very embarrassing at the time.’ To try to understand her symptoms, Nicola had several colonoscopies which she found incredibly uncomfortable, but doctors struggled to get a clear picture or finish the procedure as her bowel was so inflammed.
Which lead to the 11-year delay in getting her Crohn’s diagnosis. ‘At the start of the illness, I was anemic as the ulcers in my bowel were inflammed and bleeding, and during the worst days of illness I was going to the toilet with diarrhoea up to 30 times a day, including during the night, so I was physically exhausted,’ says Nicola. ‘I was mentally exhausted too, as to most people you look fine and they struggled to comprehend that you could feel so ill all the time.’
This is why research and awareness around invisible illness is so important to Nicola, and her husband James. The pair of them are hoping that their challenge will enable greater understanding and compassion towards people who have life-limiting illnesses that aren’t instantly apparent.
‘Mentally, having Crohn’s has always made me more cautious than perhaps I would have been,’ explains Nicola. ‘I lost a lot of confidence in myself at university, living with a disease that no one understood. ‘My weight fluctuated a lot at the start and some of the side effects of steroids are unpleasant. When I go out socially or travel, I have always needed to know where the nearest toilets are, and at times when feeling ill I have felt extremely anxious about being out and about.’
Nicola says that with Crohn’s, the need for the toilet can be sudden and completely unpredictable. ‘I still struggle with embarrassment due to the nature of the disease and sometimes something as simple as staying in someone’s house overnight fills me with dread,’ she tells us. ‘It is an unpredictable disease as you never really know when you might have a flare up or why.
‘I know I’m not always good at stopping and accepting when I am feeling unwell, I often feel guilt and worry that other people may think I’m exaggerating how poorly I feel.
‘However, I’m extremely lucky to have a supportive husband and family who are usually the first to spot when I’m not feeling great.
My husband has always encouraged me to live life to the fullest despite my illness and I have certainly done more travelling and had a lot more adventures than I would have had the confidence to do without him.’
The couple are lucky enough to have a rowing machine at homey, and with all this extra time on their hands during lockdown it felt like the perfect opportunity to try to achieve something amazing, and raise vital funds in the process. They expect the entire challenge to take around 10 weeks, and they are prepared for just how tough it will be.
‘The vaccine research has always interested both of us, in particular James who has lived through my low points with me and always felt so helpless when I’ve been poorly,’ says Nicola. ‘If there is even the smallest chance that the research could help find a cure for Crohn’s disease then it would change the life of so many people.
It is an invisible disease for most people and it can be hard to get people to understand how ill you are when in a flare up. ‘ Nicola’s worst flare up was during her second pregnancy, and in the months after giving birth.
Steroids weren’t helping and a full colonoscopy showed severe inflammation.
Nicola was told that there was a high chance she would need to have part of her bowel removed.
‘Before they went ahead with surgery my consultant decided to try one last medicine, called Humira, which is a biologic treatment that I had in the form of fortnightly injections,’ she explains.
‘This worked almost instantly and eventually another colonoscopy led to my diagnosis of Crohn’s. ‘
The Humira was not a long-term solution so I was eventually taken off the injections and they tried a different combination of medicines, which still included the immunosuppressant Azathioprine, and they have been working ever since, so I have been under control for around six years.’
Nicola still has mild symptoms every now and then, goes to the toilet more than the average person and suffers with excessive bloating occasionally – but she says it is manageable and she now feels OK most of the time.
‘Thankfully I responded well to steroids and most times I had a bad flare up the doctors were able to get me under control quite quickly,’ she says.
‘I was given the drug Azathioprine quite early on once I was out of university and this worked well on its own for me for almost 10 years.