What it means to me

Recent research has revealed that over 50% more people than previously thought are living with Crohn’s or Colitis in Wales, almost 1% of the total population.

Funded by Crohn’s & Colitis UK and undertaken by Swansea’s Secure Anonymised Information Linkage (SAIL) Databank, the research looked at the numbers of people diagnosed with Crohn’s and Colitis recorded in GP practices over a nine-year period.

There was a huge discrepancy when compared to the figures used by health boards, meaning that the full numbers are not being taken into account.

As Wayne Lewis, Policy Lead (Wales) at Crohn’s & Colitis UK, explains: “In a 2019 survey of IBD services in Wales, most Welsh Health Boards reported using the previous estimate of 1 person in every 250 when planning services for people who have Crohn’s or Colitis.”

We spoke to four people living with Crohn’s or Colitis in Wales to find out about their experiences.
 

Sonia

Sonia Davies (37) from Aberystwyth was diagnosed with Crohn’s at the age of 20.

Sonia had a difficult journey to diagnosis, during which she dropped from eight stone to five and a half stone. She says, “I was rushed into hospital by my mother on the 28 December 2003, with a large mass seen through the skin in my abdomen. I was operated on three days later and diagnosed the same day.

“Since diagnosis, the hospital has been brilliant and the way my consultant understands that I could get a flare up at any time and may need to email him is great.

“We definitely have a lack of specialist nurses in this area, or I have never been signposted to one. It’s a disadvantage as I always second guess, do I really need to contact the consultant knowing how busy he is? I think if I had the assistance of a nurse then this would give me extra support.”

Rebecca

Rebecca Edwards (33) lives in Pembrokeshire and was diagnosed with Crohn’s in 2015.

Fourteen months ago, Rebecca had a child. She was relieved that the consultant obstetrician liaised closely with her gastroenterologist to ensure that her Crohn’s remained stable throughout pregnancy and postpartum.

Rebecca’s condition is currently stable. She is on azathioprine, and credits diet and lifestyle with playing a big part in keeping her well. But the condition still impacts her every day.

“The chronic fatigue can be crippling and does stop me from living my life how I would want to most days,” Rebecca says. “I constantly have to weigh up whether the activity I want to do will leave me with enough energy to go to work, shower, and look after my 14-month-old son.

 “I know I am fortunate to have a supportive family who cook for me and help to look after my son, so that I can continue working part-time. However, outside of that family network, I still find myself having to explain to people why I am struggling with ongoing pains and fatigue when my Crohn’s ‘seems fine’. My condition is well managed and therefore more invisible to others, which does make it difficult to explain the impact it has on my life.”
 

Nick

Nick Yates (63) was diagnosed at the age of 58. He lives in Llandudno.

After experiencing debilitating symptoms for six months without a diagnosis, Nick was enormously relieved when he was diagnosed with Crohn’s in 2016. Over a nine-month period he tried different medications to get his condition under control and was eventually prescribed a biologic infusion.

Nick has experienced complications with the interaction of Crohn’s and other medical conditions. The worst example of this was a Crohn’s flare that occurred at the same time as he had poor, clotty blood from polycythaemia (a high concentration of red blood cells) which resulted in deep-vein thrombosis.

Nick says, “The A&E Consultant told me that if I had not attended promptly, I was two days away from the clot travelling to the chest, resulting in death. The clot had already travelled from my calf to the upper thigh and towards the groin.”

The pandemic has thrown up additional issues in Nick’s management of his condition. “During the pandemic, dealing with Crohn’s with limited access to NHS Primary and Secondary care has been challenging and requires much more awareness of your condition and its various triggers.

“Coronavirus has meant there have been delays before timely and necessary intervention can occur and you need to take much better care of your general health and nutrition.”
 

Welsh Whisperer

Andrew Walton (33) is a musician and media personality who goes by the name ‘Welsh Whisperer’. Originally from Carmarthenshire, he now lives in Gwynedd. He was diagnosed in 2015. 

Andrew’s career as a performer brings added complications. “During the early diagnosis, getting to a toilet was sometimes an issue,” he says. “People assume that because you look well and are fully mobile that you’re just jumping a queue or taking advantage of an accessible toilet.

“In my line of work in the Welsh entertainment industry I also found myself in tricky situations, such as going on stage or into a TV or radio studio, where nerves can have an impact on bowel movements.

“Because my Crohn’s is quite manageable through diet, medication and certain lifestyle choices, some days I forget that I even have it, though lapses and flare ups can cause tiredness, low morale and a general ‘down’ feeling. I take azathioprene daily, which controls the condition, but I do worry sometimes what effect that might have on the long-term.”