A North Lincolnshire woman wants people to know what it's like living with colitis
“You imagine the very worst, but life can still go on as normal”
Last updated 14th May 2024
A woman from Barrow-upon-Humber is speaking out about living with colitis so more people understand the condition.
Ulcerative colitis is thought to be an autoimmune condition.
This means the immune system, the body's defence against infection, goes wrong and attacks healthy tissue.
In 2019, Jenny Lake, a management consultant from Barrow-upon-Humber, was diagnosed with colitis. Already going through a very difficult time in her life, the news came as a shock. Yet ironically, the stress she was under could well have triggered the colitis flare-up which ultimately led to her diagnosis.
Jenny’s symptoms presented as many a classic case of inflammatory bowel disease (IBD) does, with severe stomach pain, fatigue and needing to go to the toilet far more often than usual.
“The cramps were painful but when I began to pass blood I realised there was something much more serious going on. Looking back, I think I could well have experienced flare-ups many years earlier, but they went undiagnosed.
“Following a colonoscopy in 2019, I was told that I had colitis. It was a relief in some ways but that time in between, while I was waiting for results, was really quite frightening; you imagine the very worst. Even when I received my diagnosis, I was still worried; what if I’m not going to be able to manage my condition? What if I’m not going to be able to lead a normal life anymore?”
Jenny was put on a time-limited course of steroid tablets to manage her symptoms along with another form of regular medication. Her symptoms thankfully went into remission, but following another period of stress in 2021 – a common trigger for many with Crohn’s or colitis – a further course of steroids proved unsuccessful.
“That was another incredibly frightening time, as now the steroids were no longer work, and the stress of that made my symptoms worse,” Jenny continues.
At that point, in April 2021, Jenny was invited to take part in a clinical study but it would take a further four months before she received her first dose of the new biologic drug, during which time she would continue to experience debilitating flare-ups.
“It was a difficult period in my illness,” she continues. “Friends and family would be organising events and parties and I’d be worrying about whether I could go and what might happen if I did. I was worried about urgently needing the loo while I was out, so I would often not eat at all to try and reduce the chances of that happening.
“It can be quite a lonely period too. As well as the physical symptoms, there was a feeling of isolation, like no one I knew really understood it, and then because people find the symptoms associated with colitis embarrassing, no one really wanted to talk about it either.”
But Jenny has since taken part in the VERDICT trial at Hull Royal Infirmary, and has found a treatment that works for her and has not experienced a flare-up of her condition since 2021. She has found support among family members with other long-term health conditions and regularly accesses support groups to talk with other people tackling the same or similar issues.
“They call it an invisible illness because you can’t see it from the outside, but I think colitis is even more so than some other illnesses because people don’t find the symptoms easy to talk about either. But it’s so important for people to come forward for help when they need it, not suffer in silence or be too embarrassed to speak about their problems.
“Since being diagnosed and put under the care of the team in Hull, I have felt incredibly well cared for and supported, and I feel very lucky to have them looking after me.
“I’m really grateful that the NHS has now found a treatment that’s working for me, which shows that IBD can be managed well and life can still go on as normal. You learn to adapt but that’s part of living with your condition, not being defined by it."
The UK Crohn's & Colitis UK charity reports at least 1 in every 227 people in the UK has been diagnosed with ulcerative colitis. This amounts to around 296,000 people.
For some people, the condition has a significant impact on their everyday lives.
The condition can develop at any age, but is most often diagnosed in people between 15 and 25 years old. Both men and women seem to be equally affected by ulcerative colitis.
The main symptoms of ulcerative colitis include recurring diarrhoea, tummy pain and extreme tiredness. To find out more go to the NHS website.
Anyone who would like to know more about colitis, IBD or other digestive diseases is being invited to attend the free Science of Digestion event taking place in Hull next week, on Tuesday 14 May.
Organised by the Guts UK charity and Hull Hospitals, the event is free to attend and will feature some of the region’s leading experts in the field of digestive, colorectal and liver health. Organisers will also be inviting guests to meet Colin, a 5m high giant inflatable colon designed to get people talking about digestive health in an alternative and interactive way. Families are welcome, though places should be reserved in advance.
Full event details including timings, location, and a full run-down of the expert line-up can be found online: [https://hull-digestion.eventbrite.co.uk](http://online: https://hull-digestion.eventbrite.co.uk |newtab).