Lilian’s Story – Diverticulitis

Tell us a little about Lilian 

“My mum, Lilian, was born in 1934. She married my dad, Vic, and in 1966, I came along as their only child. Their love story could be made into a film. Mum was from the East End of London, working in a shoe shop. Her colleagues would hide their names and addresses in a slip of paper in the shoes that they’d send to servicemen overseas. Dad’s friend had ordered some shoes and he had a little slip of paper with Mum’s name and address. He passed it to my dad, and he wrote to Lilian. That began their 72 years of partnership, and 67 years of marriage, as true life-long soul mates. 

Mum was a very keen and talented flower arranger, spending time at all sorts of prestigious tournaments. She also spent a lot of time with us, her family, including her grand-children. 

When did your family first hear the word ‘diverticulosis’? 

Mum was diagnosed whilst other investigations were taking place in 2010, where they found the pockets in her bowel. Mum never mentioned any symptoms that she would experience, but she would often keep things to herself as it is a taboo subject. 

Surprisingly to all of us, in 2016 I was admitted to hospital with diverticulitis (the pockets becoming infected). We had been in Rhodes and I’d felt really unwell, and when we made it home I was admitted into hospital for a week. After IV antibiotics (antibiotics administered straight into the vein), I fully recovered. I experienced diverticulitis a few more times over the years, but the antibiotic treatment always worked. 

Not long afterwards though, in 2018, I was re-admitted to hospital but this time the infection was even more severe and I had a perforation (a tear) in my bowel. An incredibly talented surgeon performed emergency surgery on my bowel, removing the majority of the bowel and the diverticular pockets, and ‘sewing’ it back together. I didn’t even require a temporary stoma. 

Talk us through Lilian’s experience with diverticulitis 

Mum had been struggling with constipation (caused by opioid-based painkillers that her doctors prescribed for her arthritis). Therefore, it seemed like all her digestive symptoms and issues were being passed off as ‘it’s just the opioids’.  

But after much pushing from my wife, Jo, and I, on 26th September 2022, Mum was admitted into hospital. We could tell she was very unwell, and after pushing for a CT scan, the hospital discovered the infected pockets in her bowel had caused a perforation, just like I experienced. Mum began the IV antibiotics. Over the next day, she dramatically improved. 

Sadly, just one day later Mum’s perforation stopped improving and started bleeding. They couldn’t control the internal bleeding, and she died. We lost our loving mother, wife, grandmother in a matter of days. 

Why did your family choose to fundraise for Guts UK at Lilian’s funeral? 

We’ve experienced the complications of diverticulitis twice in our family now. We know we are just unlucky, but awareness of this disease needs to be raised. Often at times, we felt we had more first-hand knowledge diverticulitis than some of the healthcare professionals looking after us. Though we know that for the most part, diverticulosis is a very mild and common condition, it can also come with some very severe complications in some cases. It’s important that people know what to look out for. 

I do also wonder, had Mum’s doctors noticed that she had diverticular disease, would she have been given painkillers that can cause severe constipation? We’ll never know if this was the ultimate cause of the pockets becoming infected, but this just highlights the need for more research and information to be out there. That’s why we’re sharing our experiences as a family, so that they can help somebody else.”

Diverticulitis has been misunderstood and underfunded for too long. Your donations fund life-saving research, raise awareness to empower people to seek help sooner, and put information in the hands of people when they need it most. Please donate today. Thank you.