Lewis’ Story – Diverticular disease
Lewis has a condition of the large bowel (colon) called diverticular disease. Between 1 in 3, increasing to 1 in 2 people will be affected during their lifetime.
Tell us a little about yourself
I’m Lewis, I’m 40 and I live in Birmingham with my wife, Joanna. I work for an insurance company where I specialise in marine cargo. I look after a team and have the ability work remotely, which is especially good if you have stomach problems. I have been doing this for over 20 years now. In my spare time, I love keeping active. I’m a goalkeeper in a football team and enjoy walking and getting on my Peloton bike!
When did your symptoms begin?
I’ve struggled for numerous years with a bad stomach and would often feel fobbed off by my doctor. Over the last 12 months, my symptoms have had more of a detrimental effect on my daily life. I experienced extreme bloating regardless of what I ate. I had sharp cramps which felt stitch-like, on the left-hand side of my lower abdomen. These would come and go in waves and keep me up at night. Also, I would need the toilet a lot. This all had a knock-on effect and would cause major fatigue during the day. Joanna would often say to me “when you get a bad stomach, it almost takes you a week to get over it.” I knew I needed to get back to the doctor.
When and how were you diagnosed with diverticular disease?
About 12 months ago, my brother had a colonoscopy and doctors found polyps in his bowel and removed them. This prompted me to do my own research and I found out that polyps can be hereditary. Through my job, we get regular private health check-ups. I asked if I could get checked. A colonoscopy was booked privately. 3 to 4 months ago, I found out that I have no polyps in my large intestine but that I have diverticular disease.
How did you feel when you were finally diagnosed with diverticular disease?
Oddly, I felt happy because I had an answer! However, after another chat with my doctor he sent me away with Guts UK’s diverticular disease leaflet and I felt disappointed. I felt left to do my own research. But Guts UK’s information allowed me to do that confidently and proved invaluable.
Talk us through your day-to-day living with diverticular disease and how it affects you
Stress can be a big trigger for me. However, flare-ups are now less common. They now last 1-2 days since my lifestyle changes, instead of a week like before. I haven’t been up in the night like I used to be. I have noticed playing sports can make my stools looser than normal the day after. However, I can now prepare for this and know what to expect. Riding my Peloton bike causes me no problems thankfully which is great as I believe exercise is very important.
How has your diet/lifestyle changed since your diagnosis?
I keep a food diary which helps massively so I can monitor and see any trends. Over the last 3-4 months, upping my fibre intake has been a game changer and I can lead more of a normal life. I eat things such as fibre-rich oat biscuits, brown bread and rice. I also eat more fruit and vegetables. Alongside, I’ll drink at least 3 litres of water per day to help the fibre move through my system. I used to frequently have loose bowel movements, but now I have more solid bowel movements up to twice daily. I wrongly always thought that fibre would make things worse. Before my diagnosis, I never used to get anywhere near the right amount of fibre in my diet.
What advice would you give to someone who has just been diagnosed?
You can drive yourself mad thinking “is this symptom from food I ate yesterday or was it from 3 days before?” but in my experience, there’s not necessarily one food that’s a trigger. I’ve cut out things I know can make me symptomatic such as spicy foods, caffeine and I’ve reduced my alcohol intake.
I’d say not to panic and get back to the basics with food, read and do your research with Guts UK. They recommended to keep a food diary, upping fibre, and water intake and all this has thankfully helped.
Why are you sharing your story today?
There is a lack of awareness. If someone can relate to my experience, that’s great. If I can help one person, that makes me happy.
Why do you think it’s beneficial that charities like Guts UK exist?
If my doctor hadn’t given me Guts UK’s information, I don’t know what I would have done. There are so many opinions out there and you can get confused. With Guts UK information, I know it’s backed by scientific research and evidence. I feel fully informed to make my own choices. It’s also important to know Guts UK understand what I’m going through.
Our upcoming Priority Setting Partnership (PSP) into diverticular disease
Guts UK is delighted to announce we’ll soon begin a ‘Priority Setting Partnership’ (PSP) into diverticular disease. This will give you the opportunity to have your say and tell us what research you’d like to see into diverticular disease. Together with healthcare professionals, other patients and family members, you can decide the top 10 priorities for research into diverticular disease. Read more and sign up for updates here.
It is important that robust research continues into the causes and treatments for diverticular disease. Guts UK is the only UK charity funding research into the digestive system from top to tail. We’re proud to produce patient information for diverticular disease and we’re here to help, please contact us with any questions.