James’ Story – Diverticulitis
James didn't realise he had diverticulosis (pockets in the bowel that are very common, and often nothing to worry about), until he became unwell and his doctor sent him straight to A&E.
Tell us a little bit about yourself
I’m James, a driving assessor for medical conditions and a dedicated scout leader (I have been for 30 years now!) This takes up nearly all of my spare time and is a bit part of my social circle too. I’m married with two grown up daughters.
Talk us through your first experience with diverticulitis
On a normal Monday morning in May 2022, I went into work and got caught in the rain but had no jacket. I suddenly became very shivery and couldn’t stop, but just thought I needed to warm up from the cold. At work, we have occupational therapists and I went to see one, who took one look at me and told me to go home and call the doctor. I went straight home to bed. I should’ve called the doctor.
When did you speak to your doctor?
When I finally called the doctors on Wednesday, they asked me to come straight in and examined me. They sent me straight to A&E due to suspected appendicitis with a ‘magic’ letter. The letter wasn’t as magic as I anticipated, as I still waited for hours in the waiting room. When they finally called my name, I stood up and blacked out straight away, hitting the floor. I was wedged in a wheelchair and rushed through for a CT scan.
Do you remember any conversations the doctors had with you?
When I came to, a surgeon told me that I had a ruptured bowel (a torn bowel). He told me they need to operate now and I would be given a stoma (an opening on the abdomen surface to divert the flow of poo into a bag). This was a huge shock, but doing what I do for a living, I knew what it meant. “Is it permanent?” I asked. He said, “Hopefully not, but you will have it for at least 12 months”. I was told in no uncertain terms that he couldn’t force me to have a stoma, but if I chose not to, I likely wouldn’t survive.
How did you adjust to your stoma?
I knew the recovery would take some time, but I underestimated the fatigue and the complications of stomas, like hernias. By early evening, my eyes close and I’m gone for the rest of the night. My dad had died six weeks before my surgery, so my mental health did suffer for a while.
The stoma nurses were really helpful. At one point, there were two and they were both called Karen so I never had to worry about getting their names wrong! I called them daily in the early days, panicking about little things that I now know are nothing to worry about and completely normal.
How are you now?
It’s September 2023, almost a year and a half on from my operation and I have chosen not to have a reversal. My surgeon explained that I’d need two major surgeries and there’s still a risk of it failing. I chose not to go through that, for both me and my family.
Living with my wife and daughters often used to mean that the bathroom was never available when I needed it, but now I need it a lot less so I suppose that’s a positive! My work were very helpful too, installing a bin and a shelf in the bathroom in case I needed it.
What advice would you give to someone who has just had surgery?
I was very critical of myself in the beginning. I remember a gathering with the group from scouts, where I became emotional and frustrated. They reminded me that six months ago I was nearly dead, and told me to give myself space and time. So if you’ve just been given a stoma, I want you to know that it does get better. Give it time and don’t punish yourself. Be patient with yourself.
Why are you sharing your story today?
I’m happy to share and help with my own experiences, and show that not every disability is visible, a reminder to us all to be more open-minded when we’re making assumptions about people. Few people know anything about diverticular disease, and the NHS is pushed for time to explain things to patients, so charities like Guts UK are more important than ever. Colostomy UK helped me a great deal at the beginning too.
Finally, if you don’t feel right with your body, go to the doctors. If something feels new, different or not right, it needs looking at. If I’d gone to the doctors earlier, I might not have ended up with a stoma. You know your body best.
Thank you James for sharing your story so honestly and openly. No one should ever feel lost, confused or alone. We are here to help. 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.