Sophie’s Story – Diverticular disease
"I had so many questions as a young person receiving my diagnosis, and I wish I had someone who had been through this holding my hand telling me it’ll all be okay."
Tell us about you
I’m Sophie, I’m 22 years old, and live with my partner on an island in Scotland. We’ve just finished renovating a house together, and I’m pregnant with our first baby who is due in just a few months!
When did your symptoms begin?
In Summer 2019, I was 17 years old, and I noticed blood when I went to the toilet. Alongside, I’d also been having stomach pains, an intense stitch-like, uncomfortable pain around my bowels. Sometimes, the pain is achy, and sometimes, it feels sharper. I knew the blood was something that needed to be looked into, but I was really embarrassed, so I didn’t say anything to anyone for months.
Eventually, as this continued, I booked in to see my doctor. They did some blood tests and also ruled out issues such as haemorrhoids.
This went on for a long time. Just before I turned 21 in August 2022, I’d woken up one morning feeling quite unwell and in a high amount of pain. I had a hot water bottle strapped to me all day, but the pain continued to increase. Later that day, I bent down to stroke my cat, and I couldn’t get back up from the pain. I called NHS 111, and they told me to go to the hospital.
When I got to the hospital, they suspected I had appendicitis, and they kept me overnight with the view to remove my appendix in the morning. They did a CT scan to make sure, but it came back to say it wasn’t appendicitis! The CT scan did show inflammation in my digestive system, though. At this point, they suspected I might have Inflammatory Bowel Disease (IBD, like Crohn’s disease or ulcerative colitis). I spent a week in hospital on a drip due to how unwell I was, and they booked me in for a colonoscopy (camera to explore the bowel).
Talk us through the colonoscopy
I was meant to have the colonoscopy in October/November, but when I took the colonoscopy preparation (a solution you drink to empty your bowel), it made me sick, so they had to cancel and rebook my colonoscopy for February 2023.
The different preparation they gave me this time was much better. I knew that the experience would be uncomfortable, and I did have anxiety leading up to it, but I really needed it to be over and done with because I needed answers. It was another chance for me to be heard and get help.
When did you receive the diagnosis of diverticular disease?
After they wheeled me back onto the hospital ward, they told me they couldn’t see any Inflammatory Bowel Disease, but I was diagnosed with diverticular disease and diverticulitis. Whilst being given an information leaflet, I said, “I’m quite young for this, am I not?” The nurse replied, “Yes, you are”. I knew about diverticular disease because my dad has it, and I knew it affects people mostly 40+, so being in my early 20’s I found it quite alarming! They passed the diagnosis on to my doctor and put me in touch with a dietitian.
This is when I found Guts UK online, and when I read their information, I felt heard. I just trusted them, and it was good to read other stories from people with diverticular disease. It felt like they were my voice, especially as I’d felt so disheartened and brushed off for so long.
What is living with diverticular disease like for you?
Most days, I get discomfort and pain in my abdomen, and do see blood in my bowel movements often. Over the months, I’ve been discovering which foods work best for me to relieve symptoms depending on where I am in a flare-up. Diverticular disease also impacted me socially and mentally – I had high levels of anxiety regarding social events due to the impact of my symptoms during a flare-up, which would happen more often than not.
Since I’ve become pregnant, my symptoms have become much better. Maybe my body is too busy building a baby! I feel the best I’ve felt in a long time.
I had so many questions as a young person receiving my diagnosis, and I wish I had someone who had been through this holding my hand telling me it’ll all be okay. To people like me, I’d say just focus on today and how you feel in this moment. It’s so easy to worry about the future, but you need to focus on your body, not other people – as everyone is so different!
Why are you sharing your story today?
I want to get rid of the stigma surrounding this condition. It can be an uncomfortable topic, especially since it relates to the bowels, but this prevents people from getting help and reaching out. It took me so long to accept that it’s okay, and I need help. I hope another young person with diverticular disease reads this too and feels less alone.
Thank you Sophie for sharing your story so honestly and openly. No one should feel alone and wish that they had someone to hold their hand through this process. You can help us help the next person by donating to Guts UK today. Just £3 per month will change lives, and you make it possible
Guts UK's big project 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.
