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Susan, 58

#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.

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#auguts stories, tips and recipes

Gut health is unique to you, so hear from experts, people with lived experience and the community to find out ways they manage their gut health. Scientists believe that, from birth, the gut microbiome is linked to virtually every aspect of our health. There is still much more to discover but take your first step here.

Michael

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.

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Gillian

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.

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Angela

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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