Anyone have diverticular disease? How serious?

[Hooploop]

Today I had a colonoscopy, because of some cramping and a bit of bleeding I've had recently. I expected to have a few piles removed at worst. I'm in my mid 30s, fit and well, no medical conditions, eat healthily (really), and do a lot of long distance cycling, as well as running and swimming. Don't smoke, don't drink.

Turns out I have diverticular disease. After the test I just got given a sheet of paper with the result on it, and sent home. Nobody explained it to me at all (also I found the procedure very painful at points and I'm feeling a bit sorry for myself).

Obviously now Googling and I'm so confused. I fit none of the 'classic' risk factors which include being over 50, smoking, being overweight, or having recurrent constipation. (I'm bean/lentil loving veggie and go without issue twice a day, like clockwork). Apparently it's a rare condition in under 45s. Why do I have this so young and should I be worried? I can't figure out how serious it is. Online it says people can have hideous, life -threatening flare-ups/infections. Any insight appreciated!

My DH had this, he had a flare up about every 3 years but knew the pain so always got straight on the antibiotics. Tbh didn't affect him much day to day after the first attack. Hopefully yours will be the same .

This runs in my family, both my dad have and my grandma had it. He got it young but so far it hasn't come for me. He eats generally what he wants and knows what will upset him. However, the rule is NO SEEDS- they get into the folds.

Seeds aren't just the obvious like strawberries- mini tomatoes, raspberries, even blueberries have tiny ones. If he's ok, he can make an exception for blueberries. If he's not, then he will need to be more strict.

You'll get into a rhythm with your diet.

I have diverticular disease & was told it doesn't run in families! My Consultant was very dismissive of me mentioning that my mum had it too, saying it doesn't work like that 🤔.

I believe there are varying degrees of it. I was 45 when diagnosed & have never felt the need for antibiotics. I was told it's pretty rare to be at the extreme where you need surgery.

I also had it in my 40s with no obvious risk factors except one big one: it runs in the family. Many people live with it without major issues, though I was less fortunate. I had several flare-ups which were undertreated, so that I developed chronic diverticulitis. Before long I had a diverticular abscess and was scheduled for elective keyhole surgery. Twice my surgery date was cancelled due to lack of beds.

As a result, after months of pain, recurrent haemorrhage and fatigue I suffered a near-catastrophic colonic perforation and peritonitis. I had life-saving surgery in the middle of the night and woke up with an ileostomy and a huge wound from “boobs to pubes” which then got infected. I spent 3 days in critical care and another two weeks on the surgical ward. Then another two weeks having daily care from my GP’s practice nurse to re-dress my horrible infected wound.

This is not to scare you or anyone else reading. Five years on I am well. But beware the weasel word “most”. Just because “most” people have this mildly, and in its mild form it is very common, does not mean that those who have it worse should not be properly and carefully managed. If you get diverticulitis, get it treated. If oral antibiotics do not work for you (they never did for me) then you need IV antibiotics.

Best of luck. You will probably be fine. But if you aren’t, don’t be afraid to make a noise and ensure that you get the treatment you need and deserve.

My fit, veggie for 30 yrs dad got diverticulitis and didn't know until one of the diverticulae burst at which point he got very very ill.

Iirk sometimes eating things with little seeds etc can make it worse as they get stuck (my dad are muesli every day and had a very high fibre diet as my mum is vegan).

He had a stoma for quite a while but it's been reversed and he's fine now btw.

The recommendation to avoid nuts and seeds is doubted by many clinicians now (although unfortunately the biggest study included only male patients):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2643269/

https://badgut.org/information-centre/health-nutrition/who-says-you-cant-eat-nuts/

My mother developed acute diverticulitis in her mid-40s and it nearly killed her - luckily she was diagnosed over the phone by a pediatrician (!) family friend who sent her straight to hospital. She ended up having a huge chunk of her intestines removed and spent months in hospital. So not to be taken lightly.

Regarding family links, in my family it occurs in association with EDS:

https://pubmed.ncbi.nlm.nih.gov/27604811/

My nan died from it :-( She was in a lot of pain but the GP just kept sending her home. So if you have bad stomach pain don't ever let them fob you off. I don't think it's uncommon as you get older, my dad had it too but much more mildly and it didn't impact him much (not my nan's son).

Thanks everyone for replying.

@HonorHiding This is the only factor that makes sense for me too. Apparently my nan had it, but was diagnosed in her 60s. Potentially she'd had it longer though. My mum has had chronic IBS since her 40s so now wondering if she has the same thing. Interesting about EDS link too because I was told some time ago I have some of the symptoms. I bruise so easily, and have sore, hyperflexible joints that slip around a lot

@Hooploop Yes, hypermobile EDS is what we have in my maternal family. The link makes sense if you think about it - stretchy connective tissue in your joints but also in your gut, where the stretchiness makes it vulnerable to the outpouchings of diverticulitis.

Sympathies re the colonoscopy. They can very painful for those of us with this condition. If you have to have one again, tell them you have found it painful, ask for a paediatric scope (which is smaller and narrower) and accept any offer of sedation! And do not ever have a scope when you have active diverticulitis as there is a real risk of perforation.

Thank you so much for all your responses and advice @HonorHiding. Also glad that you're doing well after your experience, sounds awful.

I had sedation yesterday and fentanyl for pain (which is meant to be super potent?!) but unfortunately it didn't have an effect, was wide awake and fully aware the whole time. I think I'm still a bit shaken because I was taken by surprise at how agonising it was at times - everyone told me it's not painful!