#auguts hard to talk about
Amanda had an operation in her lower bowel which has left her with low anterior resection syndrome (LARS). She spoke to the head of the National Bowel Research Centre, Professor Charles Knowles MBBChir, PhD FRCS, FACCRS hon, about the impact LARS has on her life and how it can be difficult to discuss her condition with friends and family.
Amanda had surgery due to a diverticulitis complication called a colovaginal fistula. She is keen to highlight the quality of life issues faced by those living with LARS, especially those who had a low anterior resection for reasons other than cancer. As she also lives with coeliac disease, she is well-versed in bowel conditions and would like to help break the poo taboo as she believes it is more difficult to deal with any medical condition if you feel you cannot talk about it.
Professor Charles Knowles MBBChir, PhD FRCS, FACCRS hon is the Director of National Bowel Research Centre at Queen Mary University of London, Lead for Colorectal Surgery at Cleveland Clinic London and a Trustee of Bowel Research UK. He has very broad research interests including disorders of the anus and rectum, incontinence, constipation, diverticulitis, IBD and pelvic floor disorders.
He has been involved in many Bowel Research UK Grants, follow the links below to learn more:
www.bowelresearchuk.org/research-hub/damascus/
www.bowelresearchuk.org/research-hub/exploring-epigenetic-changes-in-diverticular-sepsis/
www.bowelresearchuk.org/research-hub/botox-injection-for-the-treatment-of-chronic-constipation/
Watch Amanda and Charles discuss breaking the stigma around bowel conditions, raising awareness of LARS and funding more bowel disease research.
On the future of Bowel Stigma, Amanda says:” I would hope there’s more awareness of what Low Anterior Resection is. Most social functions revolve around food but I tend to not eat at them. Everyone wants to know why I am not eating, so I explain my condition but nobody’s heard of it and if you are around a dinner table nobody wants to hear me discussing my bowel habits so I never really know what to say!”
And, Charlie says: “Yet again we are at the non-sexy end of the dinner party conversation when it comes to research funding. I do very little research myself, I am not in the lab anymore. I apply for grants in the knowledge that the major funders in the UK are only funding between six to eight percent of applications. There’s a huge amount of work involved for a low chance of success.”
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Donate nowWe’re highlighting topics that are difficult to talk about and research that’s hard to fund. Read and watch stories from bowel cancer and bowel disease patients and researchers.
I was born 8 weeks premature with Intestinal Malrotation. My understanding is they weren’t sure what was causing me the pain as a newborn, being premature too. When surgery was eventually done it was found my bowels had twisted. Corrective surgery was done. I was christened in the hospital as it wasn’t looking great.
I have diverticular disease on the right side of my body and I believe only a few people have it on this side.
Mr Frank McDermott is a Consultant Colorectal Surgeon and Cancer lead for the Genomics Medicine Service Alliance in Southwest England. His grant with Bowel Research UK why some patients with diverticulitis experience serious complications such as blood infection, while others have milder disease.
Join the #auguts campaign by sharing your own story via video or the written word! We are looking for videos and stories about difficult conversations people have had about their bowel condition, symptoms, diagnosis, treatment, or anything else related. Our Patient and Public Involvement Manager Sam Alexandra Rose has created her own video as an example, which you can see below to give you some ideas.
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We brought some of our patients, researchers and our CEO together to talk about what makes bowel disease hard to talk about and hard to fund. Watch them share their stories and join the campaign.
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