‘You imagine the very worst, but life can still go on as normal’ – Woman’s message of hope after diagnosis

Jenny Lake, of Barrow-upon-Humber, was diagnosed with colitis in 2019
Jenny Lake, of Barrow-upon-Humber, was diagnosed with colitis in 2019 -Credit:Hull University Teaching Hospitals NHS Trust/Guts UK

A woman who was given a “frightening” diagnosis of a life-changing bowel condition has shared her story ahead of a special event being held in Hull.

Jenny Lake, a management consultant from Barrow-upon-Humber, was diagnosed with the inflammatory bowel condition, colitis, in 2019. Already going through a very difficult time in her life, the news came as a shock - 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. She said: “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 Lake who was diagnosed with colitis in 2019
'Incredibly frightening' - Jenny Lake has now found a treatment that is working for her -Credit:Hull University Teaching Hospitals NHS Trust/Guts UK

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 working for me, I began to worry whether anything else would work, and the stress of that made my symptoms worse,” Jenny said. At that point, in April 2021, she was invited to take part in a clinical study.

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 said.

“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.

Guts UK and Hull Hospitals are holding a free Science of Digestion event at Hull Guildhall
Guts UK and Hull Hospitals are holding a free Science of Digestion event at Hull Guildhall -Credit:Hull University Teaching Hospitals NHS Trust/Guts UK

“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 there is light at the end of the tunnel.

Since taking part in the VERDICT trial, at Hull Royal Infirmary, Jenny has found a treatment that works for her and has not experienced a flare-up of her 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.”

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 at Hull Guildhall, on Tuesday, May 14, from 5.30pm to 8pm. 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 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 can be found on Eventbrite.