#auguts hard to talk about
People think ‘I don’t want a stoma’, but actually, I can do everything now that I could do before.
I was feeling in good shape when I noticed some bleeding. I thought it was piles. Then I watched ‘GPs Behind Closed Doors’ on TV and they recommended always getting haemorrhoids checked out. I went to the GP who sent me to see a specialist at the hospital, and then I found out I had a malignant tumour. I was in shock.
From then on it was non-stop testing and followed by a major operation which meant I would need a stoma. I didn’t know anything about stomas. After the surgery, they said the cancer had spread into my lymph nodes and required chemotherapy. The chemo was over 48 hours every fortnight and I had a tough six months.
I feel lucky that I’m still here. It was such a surprise, to not have had any warning that I was ill in any way. But gradually over the years, it gets easier because you get used to living with the stoma and it’s much simpler than I had anticipated. I change my bag in the morning when I get up, once or twice during the day, and then before I go to bed, so it’s no different from going to the toilet regularly. It’s not noticeable with what you’re wearing. I teach art and the worst part is it makes funny noises. When you’re teaching people, their heads are at your stomach level and you’ve got this strange noise going on!
People don’t like talking about their bowels and they certainly don’t like talking about poo. There’s definitely a stigma around stomas. People think, “I don’t want to have a stoma, I’d rather die”. But actually, it’s a different quality of life, but it’s still a quality of life. I can do everything now that I could do before.
When I first started to recover, I got involved with an exercise programme, helping to come up with exercises that people with stomas could do. Because I used to work as an illustrator, I was able to make illustrations for the booklet. I’ve done lots about nutrition, too. The more you help with research, the more knowledge you have yourself and the more you’re able to help other people.
Everyone’s story is different, but we’re all going through this and we can all help one another. That way someone who’s just finding out about it is not going to be alone.
You could help our researchers make the breakthroughs that leads to life-saving and life-changing treatments.
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.
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.
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.
Watch the video