Family fortunes fluctuate on cycle of ‘hidden’ bowel scare

Lani Philip (front) with family and friends at a fundraising coffee morning in Gedney Drove End for the charities Crohn's and Colitis UK and CiCRA (Crohn's in Childhood Research Association).  Photo by Tim Wilson.
Lani Philip (front) with family and friends at a fundraising coffee morning in Gedney Drove End for the charities Crohn's and Colitis UK and CiCRA (Crohn's in Childhood Research Association). Photo by Tim Wilson.
  • A Gedney Drove End family has to deal with the symptoms of Crohn’s Disease
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Tracy (43) and Lani (10) Philip of Gedney Drove End appear to have nothing in common with American pop star Anastacia, Olympic rowing legend Sir Steve Redgrave and Prince Albert, the husband of Queen Victoria.

But the mother and daughter are among an estimated 260,000 people living with Inflammatory Bowel Disease (IBD), with the two most common forms of it being Crohn’s Disease and Ulcerative Colitis (UC).

Tracy said: “IBD is known as a hidden disease because it’s not appparent to someone from the outside.

“But it can be an embarrassing condition for the person who is diagnosed with it and most people don’t want to talk about it.

“I’m probably one of the more severe cases because I had to give up work when I was officially diagnosed with Crohn’s Disease in 2009.

“I also missed my eldest child (Toni now aged 13) starting at secondary school because I was hospitalised which was quite devastating.”

Vocal coach and TV presenter Carrie Grant was first diagnosed with Crohn's Disease when she was 20.

Vocal coach and TV presenter Carrie Grant was first diagnosed with Crohn's Disease when she was 20.

Tracy is under the care of IBD specialist nurse Fran Bredin and consultant physician Dr Shailesh Karanth, both of them based at Queen Elizabeth Hospital, King’s Lynn.

Dr Karanth said: “IBD is a chronic condition that can affect any age group, although symptoms commonly start at a young age.

“For a majority of patients, it is a lifelong condition that can affect their quality of life significantly as people with this condition may sometimes need to take time off unexpectedly from their workplace or school.

“As a result, this could affect career or educational progress and also cause significant physical and psychological stress.

IBD is known as a hidden disease, but it can be an embarrassing condition for the person who is diagnosed with it and most people don’t want to talk about it

Tracy Philip of Gedney Drove End

“Active symptoms of IBD such as abdominal pain, diarrhoea, chronic fatigue, nausea, inability to eat, weight loss and internal bleeding.

“These abdominal and bowel symptoms interfere with social activities, including travelling, work and relationships.”

But none of these symptoms got in the way of Tracy, husband Kevin, Toni and Lani hosting a coffee and cake day at their home two weeks ago to mark World IBD Day on May 19.

More than 50 people crowded into the Philip’s home in Gedney Drove End home, some of them dressed in purple representing the colours of Crohn’s and Colitis UK, the national charity set up for patients and their families in 1979.

Tracy and Kevin Philip of Gedney Drove End with their daughters Lani and Toni (right).  Photo by Tim Wilson.

Tracy and Kevin Philip of Gedney Drove End with their daughters Lani and Toni (right). Photo by Tim Wilson.

Tracy said: “I saw an advert for IBD Day which promoted ‘Wear Purple’, but we had the idea of doing something bigger.

“A friend of ours broadcast the coffee morning on social media, even though we’d already invited quite a lot of people who we knew locally.

“On the day itself, we had a come and buy a cupcake stall, raffle with prizes donated by local businesses and balloon art by Melissa Reid of Rubys and Diamonds of Long Sutton.

“The coffee morning was better than anything we could have expected and we raised £454, to be shared equally between Crohn’s and Colitis UK and CICRA (Crohn’s in Childhood Research Association).”

Fran Bredin said: “Across the world, there are 320,000 adults who don’t have an IBD nurse that they can get support from.

“There’s a severe shortage of IBD nurses, even in Europe.”

Tracy and Lani’s determination to live as best they can with Crohn’s Disease, not in fear of it, is similar to that of singing coach and TV presenter Carrie Grant who has been a member of Crohn’s and Colitis UK for about 20 years.

Carrie said: “I have had Crohn’s Disease for 32 years.

“It’s life changing, life-limiting and impacts on the whole family, not just the sufferer.

“But because people don’t generally talk about their bottoms, it’s still very difficult to help people to understand what someone with Crohn’s Disease or Ulcerative Colitis faces.

“Even in the past year, I have been in hospital twice and have been very poorly.

“Thankfully, Crohn’s and Colitis UK has been there for me from the beginning so it was a natural decision to become an ambassador for the charity.

“People at Crohn’s and Colitis UK have been instrumental in changing the lives of many thousands of people, helping those of us with Inflammatory Bowel Disease (IBD) to be understood and to understand our conditions ourselves.

“The charity is also committed to raising standards in the healthcare service and researching a potential cure for a condition that, at present, is without a cure.”

Meanwhile, the specialist helping Tracy Philip through her journey with Crohn’s Disease is adamant that an elusive cure for the condition will only come by sharing medical knowledge.

Dr Shailesh Karanth, consultant gastroenterologist at Queen Elizabeth Hospital, King’s Lynn, said: “Over the years, a lot of work has been done to improve the IBD services and there has been a progressive development in both the understanding and management of this chronic condition.

“The work that has been undertaken regularly by IBD focus groups both locally and nationally is extremely helpful in terms of improving the experience of patients with this condition.

“However, we need to work towards further improving our local IBD services by improving the access to specialist services and providing more emotional and social support for patients.

Dr Karanth’s views were supported by Sir Steve Redgrave who said: “It is important to have good information, understanding and support.”