#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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I am 71 years old. Diagnosed with Stage 3 rectal adenoma in March 2022. I had chemoradiotherapy and Contact Radiotherapy (Papillon treatment) as due to a rare neurological disorder, which compromises my daily living activities, I did not feel I would cope well with the proposed surgery and permanent stoma.
I had been ignoring an intermittent pain/ache in my left-hand side for over a year. The pain became more permanent and I started to notice my bowel habits change. I was a one time a day in the morning regular as clockwork for all my life. It then went up to 3 times and urgent and painful.
My bowel stopped working due to diverticulitis which caused a stricture. My caecum ballooned and this was removed together with 2/3 rds of the colon & a colostomy bag attached for 6 months. This was reversed after 6 months at St Thomas’s Hospital 6 years ago.
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