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Angela's stoma reversal journey

Tuesday 26 April 2022

In 2017, aged 73, I was diagnosed with rectal cancer, had radiotherapy and chemotherapy before surgery in February 2018, and came out of hospital after an ileostomy, with a stoma. So far, so successful. But by the end of the year, I decided I would prefer life without a stoma, and talked to my surgeon about having it reversed. The surgeon, who'd operated to remove my cancer a year before, was confident that this could be done successfully, and I expected at most five days in hospital. But things didn't go to plan and, three years later, my bowels are still improving.

In hospital, four days after the closure of the ileostomy, I had an emergency laparotomy. I recovered slowly, eventually leaving hospital after nearly three weeks, with very poorly-controlled bowels. Twelve trips to the loo a day were common, and I was grateful for those big Tena padded pants!

At home, mornings were generally ok, but afternoons and evenings were bad, with painful flatulence and frequent loo-trips. Three months after surgery, I was signed off at the hospital but in my diary I wrote "I wish I wasn't so preoccupied by my bowels!" Four months after my stoma reversal, as my bowels still hadn't returned to normal, my surgeon suggested two loperamide (Imodium) in late afternoon, to give me quieter evenings, followed by 20ml lactulose at night. This helped, but didn't stop my flatulence. As I live on my own, luckily my farting only disturbs me!

Five months after surgery, I had a week's walking holiday, still reliant on loperamide, and eight months after surgery I spent a week walking in France, taking four a day for safety's sake. Life was improving but my bowels seemed to be recovering very slowly!

A year after my stoma reversal, still with lots of toilet-trips, I tried keeping a food diary to see if I could find any relation between intake and output; at the same time I decided to reduce loperamide. In March 2020 we went into lockdown. A gastroenterologist suggested that I should try a FODMAP diet. In lockdown, there were no opportunities to eat out or to entertain, so it was pretty easy to stick to a diet and I tried it for three months. However, this made no perceptible difference to my bowels! I was frustrated that I couldn't find a helpful link between what I ate and my bad bowel days; perhaps I'm a slow-transporter and food travels slowly through my gut; who knows?

During lockdown, keeping safe from COVID was my main concern and my toilet-trips were less important. Had it not been for COVID and lockdowns, I would certainly have contacted the gastroenterology department, but several appointments were cancelled and telephone meetings didn't materialise. Eventually I had a helpful meeting with a dietitian who suggested that Optifibre could be a kinder way to deal with occasional 'runny evenings'; it works a treat!

So here I am now, four years clear of bowel cancer (hooray!), and three years after my stoma-reversal, and my gut continues to improve. I am no longer preoccupied with my bowels; I don't keep a food diary or notes of my bowel movements, and I don't need loperamide. I'm a fit and active 77-year-old woman, still riding my bike and enjoying life to the full.

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