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Tuesday, 19 October 2021
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New report on painful and embarrassing intestinal symptoms for people with cystic fibrosis

THOUSANDS of people living with the life-limiting genetic health condition cystic fibrosis (CF) could also be suffering visible bloating, pain, and cramps, according to a new ‘Research in Focus’ report on gut symptoms published by the Cystic Fibrosis Trust.

Many people with CF will experience CF-related complications of the gastrointestinal (GI) tract. However, little is known about the physiological and biochemical changes within the intestines, leading to symptoms like pain and visible bloating. To tackle this, the Cystic Fibrosis Trust is investing £750,000 in lab-based research to explore whether medicine used for other conditions can be used to treat these symptoms.

The Trust is also funding research to investigate new MRI methods of studying gut symptoms in people with cystic fibrosis. If successful, the results of the two research studies could lead to clinical trials of new medicines that would treat these painful and embarrassing symptoms of cystic fibrosis.

CF’s most severe intestinal complication is ‘Distal Intestinal Obstructive Syndrome’ or DIOS – a blockage in the part where the small intestine joins the large intestine. It is a unique complication to CF, and more than 1 in 20 people with CF experience DIOS.

Dr Lucy Allen, Cystic Fibrosis Trust Director of Research, said:

“This new research is an exciting step forward. However, as our new report highlights, over 40% of people with cystic fibrosis report intestinal symptoms affecting their quality of life. Two-thirds of people with CF said their symptoms had caused them to miss school or work. That’s why we’re investing in vital research to urgently find ways to treat these painful and potentially embarrassing symptoms.”

Grace Miller, aged 19, from London, lives with CF. She suffers from DIOS. She said:

“There would be times when I’d be so bloated that it looked like I was pregnant. I remember having to buy maternity trousers because it was that bad. I always used to get these horrible stomach aches like something was pushing against my diaphragm. This happened to me nearly every month, and that just continued for years.”

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