Feature Piece

1in 123 people in the UK are living with Ulcerative Colitis. A chronic condition which causes inflammation and ulcers to form in the inner lining of the colon and rectum which can drastically affect daily life. Living with these realities for nearly a decade is Louise Phillips, a 44-year-old teacher from Oxford who was diagnosed with Ulcerative Colitis (UC) shortly after giving birth to her second child. Amelia Gargiulo spoke to Louise about her journey with UC and the challenges of managing such an unpredictable illness.

For Louise, the first signs of her condition began whilst she was eight months pregnant with her son.

What she initially dismissed as a factor of pregnancy soon developed into frequent bleeding in her stool and high levels of fatigue.

Even though Louise was showing signs of Inflammatory Bowel Disease (IBD), she was dismissed by her GP after being told nothing could be done until after she’d given birth.

Months later, whilst caring for two young children, including a newborn, Louise’s symptoms left her unable to leave the house.

Symptoms

A list of potential symptoms.

Louise pictured with her youngest son, Celyn

The park where Louise recalls her accident taking place.

Colitis can cause different symptoms in people, meaning not everyone is affected in the same way.

"Don't go thinking it's normal when it's not."
Louise

A social media video made by Crohn's & Colitis UK that urgers people not to ignore their symptoms.

At the height of her condition, Louise experienced a variety of symptoms.

“I was naive I suppose, because I put up with what I was dealing with for a long time,” she said.

“Not being able to leave the house with a baby and toddler was tough. I needed a toilet nearby, but sometimes I still couldn’t make it in time.

“My whole life revolved around my illness.”

She added: “I remember having to poo in a bush at the park with my children. All I remember thinking is that I hope no one is looking out their window.”

Getting a Diagnosis and Finding Support

For many people living with chronic conditions, getting a diagnosis can be a frustrating and long process.

"We want them to look at patients as people rather than a collection of symptoms."
The charity Crohn's & Colitis UK

The charity Crohn’s & Colitis UK offers support, advice and resources for people living with IBD. It also funds important research in the hope of developing new treatments and, eventually, a cure one day.

“Faster diagnosis, shorter waiting lists and more personalised care including emotional support for people with Crohn’s and Colitis are key things that are needed,” said the charity Crohn’s & Colitis UK.

They added: “Although there are incredible doctors and nurses working in IBD teams across the country, we know from patients that accessing care can be frustrating. We want them to look at patients as people rather than a collection of symptoms.

“Change can’t come soon enough.”

An example of the charity Crohn's & Colitis UK's commitment to fighting for a better standard of care for those with Inflamatory Bowel Disease.

A recent study by researchers from St George’s, Imperial College, and UCL, involving over 100,000 people with IBD worldwide, found that the average diagnosis time for IBD is seven months.

"It was a relief to have a diagnosis as it felt like I was finally getting some answers."
Louise

A tricky and time-consuming road to diagnosis was familiar to Louise, as she chose to go down the private healthcare route to speed up the process.

Louise said: “The NHS would have taken too long.

“Within a few weeks of seeing a private specialist I was booked in for a colonoscopy, which confirmed the Colitis in my lower bowel.

“Although I was confused at first by my condition, it was a relief to have a diagnosis as it felt like I was finally getting some answers.”

Some people may feel embarrassed or anxious about their symptoms or diagnosis, but seeking help is not a sign of weakness but a step toward regaining control over your health.

Data found in a major report which gathers the views of more than 17,000 Crohn’s and Colitis patients and 126 adult hospital IBD services.

Treatment and Medication

A box of Entyvio (vedolizumab) 108 mg solution for injection, provided in pre-filled pens. Entyvio is commonly prescribed for managing inflammatory bowel diseases such as Ulcerative Colitis and Crohn's Disease.

The Entyvio pre-filled pen, delivering a 108 mg dose of vedolizumab, is designed for quick and simple self-injection. It is provided as a three-month supply.

Treatment for Ulcerative Colitis depends on the level of inflammation in the bowel and rectum.

Many people with UC use more than one medication at a time to manage their condition, this is known as combination therapy.

"Life with a chronic illness is stressful enough without having to choose between paying your bills or paying for the medicines you desperately need."
The charity Crohn's & Colitis UK

In the beginning, Louise was initially prescribed Pentasa, in granule form, which she described as being completely ineffective.

“I felt like I was taking something that wasn’t doing anything. Instead, it just made my symptoms worse, and my flare-ups more intense,” she said.

“It took years before I was taking something that helped keep my condition at bay.”

As medication advanced for IBD, a new drug called Vedolizumab was suggested to Louise.

It came in the form of an infusion administered at her local hospital every eight weeks. It consisted of 30 minutes of treatment and then a 30-minute flush.

Louise still takes Vedolizumab regularly to manage her condition but now administers it to herself at home every fortnight.

It has enabled her to enter a stage of remission.

Louise said: “I kept thinking, why on earth wasn’t this available to me in the first place?

“The whole process taught me that if your medication is not working don’t be afraid to challenge what is said.

“Don’t go thinking it’s normal when it’s not.”

Unfortunately, there is no cure for Crohn’s or Colitis. Which is why medicine is effective in keeping symptoms at bay.

The charity Crohn’s and Colitis UK went on to highlight the issue of prescription costs, they said: “Life with a chronic illness is stressful enough without having to choose between paying your bills or paying for the medicines you desperately need.

“As prices rise, people are having to make more of these tough decisions. The list of conditions that are exempt from prescription charges is outdated and urgently needs reviewing.”

Further Advice

Managing a chronic condition like IBD can be difficult, but there are things that can help make life a little easier.

“We know that toilet access is a major concern for people with Crohn’s and Colitis, which is why our members can get a Can't-Wait Card. They can show this card in shops, restaurants and other venues to make it easier to ask to use the toilet without having to give a long explanation,” said Crohn’s & Colitis UK.

Louise’s journey is just one of many that show that there is light at the end of the tunnel and how with the correct support, meditation and mindset you can take back control.

Crohn's & Colitis UK's 'Can't wait card'. The card comes in 30 different languages and can be used abroad.

A recent photo of Louise in remission. A period in which she experiences no symptoms.

There is always help and support available.

The charity Crohn's and Colitis UK gives people affected by Crohn's and Colitis hope, comfort and confidence. If you need someone to talk to, they listen. You can contact them by; phone, email, or live chat.

Contact information for Crohn's & Colitis UK:

Call - 0300 222 5700 (Monday-Friday 9am-5pm).

Email - helpline@crohnsandcolitis.org.uk