This August, get comfortable with the uncomfortable. Read our stories or share one of your own. This year we are having conversations about the hard to talk about; including incontinence, the lesser talked about bowel diseases and the realities of recovery from bowel cancer.
Lynn and Victoria are both survivors of stage 3 bowel cancer, and live with incontinence among other long-term effects of their treatment. As CEO of Bowel Research UK, Lynn has a unique insight into bowel disease research and shares her hopes for the future.
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.
Eric experienced sepsis after diverticular disease caused his bowel to rupture, and he came within 24 hours of losing his life. He spoke to Dr Madusha Peiris, a researcher from Queen Mary University of London, about their experiences living with bowel disease and working within the field.
Thor lives with Crohn’s disease, and shares his experiences of diagnosis during his teenage years. Miss Laura Hancock is a colorectal surgeon who conducts research within the field of inflammatory bowel disease (IBD). Her Bowel Research UK grant focuses on an under-recognised type of Crohn’s disease that involves the genital region.
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.
Mr Charles West is a colorectal surgeon, Research Fellow and PhD student at Southampton General Hospital. His work focuses on the “empty pelvis syndrome”.
I have diverticular disease on the right side of my body and I believe only a few people have it on this side.
I am a 69 year old female. I have just been diagnosed with diverticulitis. I am shocked as for over the last 40 years I have eaten a very healthy diet, loads of fruit and vegetables.
Dr Sharmili Balarajah is a Specialty Trainee Gastroenterology with research interests in how ethnicity impacts the treatment of IBD. She is currently working on her Bowel Research UK grant on this topic.
I was diagnosed with diverticulitis and had 2 lots of 2 different antibiotics. The doctor then sent me to hospital as I was in excruciating pain.
Having a stoma has been a blessing for me. I remember walking past a toilet at a hospital appointment, soon after having my stoma surgery, and laughing to myself that I didn’t have to make a mental note of where the nearest loo was when previously it was likely chance that I’d have to run there!
If you are going through a bowel cancer diagnosis you’ll find there’s an extremely friendly community out there on social media or online.
Ms Helen Jones is a Colorectal Surgeon researching rectal cancer at the University of Oxford. Her research centres the treatment of patients with rectal cancer. Some rectal cancers are less aggressive, and patients could therefore have less extensive treatment. However, these patients must be carefully selected to reduce the risk of cancer. Ms Jones’ project is examining how patients’ treatment can be personalised based on the characteristics of their tumours.
For the first time in three years, I had a normal poo and I phoned up my Stoma nurse straight away. I was proud but relieved that something so normal had returned.
Mrs Julie Cornish is a Consultant Colorectal Surgeon at the University Hospital of Wales in Cardiff. She has a specialist interest in pelvic floor health, which has led to her leading studies into low anterior resection syndrome (LARS).
Mr James Kinross is a Senior Lecturer in Colorectal Surgery and a consultant surgeon at Imperial College London. Alongside his work as a surgeon, he conducts research into how the gut microbiome affects the development of bowel cancer.
Life is full of surprises. Life is not a return to normal. Life is not full of us who can apparently easily deal with a stoma.
Dr Abhik Mukherjee is a Clinical Associate Professor of Histopathology at the University of Nottingham. His research focuses on features of colorectal cancer that make it more likely to spread into the blood vessels or dictate how it responds to therapy.
I had the APPEAR procedure under Professor Williams in 2003. I was 29 when I was diagnosed with stage 3 colorectal cancer.
Professor Lesley Dibley is based at the University of Greenwich, where her work explores the everyday experiences of living with chronic illnesses. She has a notable body of work relating to living with inflammatory bowel disease (IBD).
Dr Andrew Stagg is a Reader and research group lead at Queen Mary University of London. His work focuses on the regulation of immune activity in the human intestine, and how this contributes to the development of IBD.
Declan Sculthorpe is a Bowel Research UK PhD student studying at the University of Nottingham. His research focuses why certain colorectal cancers spread into the blood vessels, a feature that is seen in more aggressive tumours.
I was at my healthiest – so I thought – & fittest for years. Then bang – poo stick test.
I saw 3 different GPs in my practice over 8 months with blood in the stool.
Mr Dale Vimalachandran is a Consultant Colorectal Surgeon and one of the Colorectal Surgical Specialty Leads at the Royal College of Surgeons of England. He has broad research interests within colorectal disease including a specialism in diverticulitis.
Dr Nadeem Shaikh is a researcher at the Barts Cancer Institute based in London. His team’s research project explores the genetic changes in some more aggressive types of bowel cancer that allow these cells to develop resistance to chemotherapy.
I have generally found it’s best to be open and honest with people. For many years I would be too embarrassed to use disabled loos as I don’t look disabled! I eventually got over that and am pleased to say that I’ve never been challenged.
I absolutely wear my bikini with pride! My body survived what tried to kill it and that’s great! Nothing can detract from that for me personally.
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.
I don’t have a diagnosed illness aside from old age. Walking seems to set my bowels off and I have no control.
I had grown up with the belief that you weren’t supposed to talk about how you go to the toilet, especially as I was a girl.
Just going to the doctor to report bowel symptoms is already a leap in the overcoming of embarrassment.
I decided that I wasn’t going to be embarrassed anymore. I wasn’t going to hide because there’s nothing to be ashamed of.
I’m happy to tell anyone anything, but it’s often up to the patient to start that conversation. The ‘bottom’ line is everybody poops.
Whilst I can laugh about it now, I’ve had plenty of accidents over the years. The treatments made such a difference and let me enjoy my teenage years.
Through the support of my wife, I turned a corner. Even if you don’t talk to a wide audience, talk to friends or people who’ve been in the same position.
I had chemo during the pandemic, I joked it was the best time for it because I couldn’t go anywhere anyway. I’m happy to say I’m now in remission.
People think ‘I don’t want a stoma’, but actually, I can do everything now that I could do before.
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.
Your video or written story will appear on our website and be shared on our social media channels. Please include your social media handles if you feel comfortable with us tagging you when we share your story. Videos may be edited slightly, for example by adding captions or putting several videos together, or adding our logo. Take a look at this guide for some tips on filming video on your phone. If you have any questions, email sam@bowelresearchuk.org.
