I felt so ill I thought I was dying… but it was a gut condition doctors often wrongly dismiss as IBS: It’s so common and there’s misinformation about how to treat it, says Nicola… but this is what really works

What if I’m dying? This thought entered my head and stayed there. I had spent most of the day in bed, sleeping fitfully and feeling terribly ill.

The day before I was feeling nauseous, then nausea, fatigue, and fever appeared, along with a dull but persistent headache.

Fever was the worst: I was either hot and sweating or freezing and shivering and sometimes couldn’t tell which was which.

My heart was racing alarmingly, my breathing was short; This was the reason for my anxiety about my imminent death.

I was wondering if I should get up and ask my husband Paul to take me to A&E but the thought of sitting there for four hours or more was literally a fate worse than death.

I was in the middle of what I now know was a diverticulitis flare and I had never felt sicker.

Diverticulitis occurs when sacs (called diverticula) form on the walls of the intestine and become inflamed or infected due to a build-up of bacteria. In some people, the sacs can be as large as 20 mm (three-quarters of an inch).

Diverticulitis can cause extreme pain; Women who suffer from this condition say it is worse than childbirth.

In severe cases, an abscess may form and the sac may burst, causing peritonitis (inflammation of the abdomen) and even sepsis, a potentially life-threatening overreaction of the immune system.

By age 80, about 70 percent of people have diverticula, but most people don’t know it because there are no symptoms.

It is not yet known why these vesicles become inflamed and infected in some people and not in others, but as the intestinal wall weakens with age, it becomes increasingly common from the age of 40 onwards.

And it doesn’t help that many people with diverticula are given incorrect dietary advice, which can make the problem worse (but more on that later).

Women who suffer from diverticulitis say it’s worse than giving birth because the condition can cause extreme pain, nausea, and fever.

The charity Guts UK says one in every two of us develops diverticulitis and the number is increasing.

Indeed, hospital admissions for diverticulitis have more than doubled in the last decade, says Professor Bu’Hussain Hayee, clinical director of liver, endoscopy and gastroenterology at King’s College Hospital NHS Foundation Trust.

This is partly due to our aging population, he says, but there are other factors, too, such as obesity (which increases inflammation overall), a sedentary lifestyle, and a lack of fiber, which slows the passage of waste through the colon.

He adds that in addition to smoking, certain medications, such as nonsteroidal anti-inflammatory drugs and steroids, can also cause colon inflammation.

One problem is that symptoms such as diarrhea, abdominal pain, bloating and nausea (along with a change in bowel habits and a dull ache in the abdomen) can be confused with irritable bowel syndrome (IBS), and some patients suffer from both.

“There is significant overlap,” says Professor Hayee.

Meanwhile, blood in the stool (due to bleeding of the sacs) can be ignored as a bulk.

In 2020, at age 57, when I started feeling feverish and unwell for days, my doctor ordered blood tests to determine the cause, but they all came back normal. In March 2021, during a particularly bad crisis, I called him and he asked me to go into surgery.

Noticing that my temperature and heart rate were rising, he diagnosed diverticulitis and immediately sent me to a gastroenterologist at the Princess Royal University Hospital in Bromley, south-east London.

The consultant felt the left side of my abdomen; This usually causes a lot of pain in a person with a diverticulitis flare where the diverticulitis originated.

Maybe because I wasn’t in pain, the gastroenterologist decided I didn’t have diverticulitis and sent me home. I could only drink water for days, but my symptoms gradually subsided.

A few months later, after another flare-up where I thought I was going to die, I was finally sent for a colonoscopy, which revealed diverticula in my bowel wall, each 2mm to 10mm in size. This, along with my symptoms, confirmed that I had diverticulitis.

Diagnosis is one thing, learning how to manage the condition is another. And there seems to be a lot of misinformation about this.

Many people with diverticulitis are still told to avoid high-fiber foods such as peas, beans, apples, bananas, avocados, carrots and barley.

But Guts UK says they should be added to the diet as they bulk up the stool, speeding up its passage and reducing pressure on the sacs in the intestinal wall.

Professor Hayee adds: “Long-term studies do not show nutrition as a primary cause.”

Avoiding loofahs is only recommended when complications occur (for example, an infected sac ruptures, allowing waste to enter the abdominal cavity).

People with diverticula may also be told—incorrectly—to avoid things like nuts or other types of seeds, fruit or vegetable peels, popcorn, and nuts; because it was thought that they settled in the pouches.

But this has been refuted by several studies, including one published in the Annals of Internal Medicine earlier this year.

Separately, some people with diverticula say they cannot tolerate onions, red meat or tomatoes, for example. However, Professor Hayee does not believe these cause diverticulitis.

A low FoDMAP (fermentable oligosaccharides, disaccharides, monosaccharides and polyols) diet is sometimes recommended.

Fodmaps are fermentable carbohydrates found in bread, pasta, breakfast cereals, stone fruits, apples, beans and legumes. In short, the diet is very restrictive.

Julie Thompson, gastroenterology dietitian and knowledge manager at Guts UK, says the low Fodmap diet can be ‘highly successful’ in treating IBS, but ‘is not recommended for those with diverticulitis’. In fact, Professor Hayee says people with diverticula can eat a normal diet but are advised to switch to liquids only during a flare-up, and some may need antibiotics to clear up the infection.

People who develop frequent infections or abscesses may be offered surgery to remove the affected part of the bowel by reattaching the two ‘ends’.

I have four or five flare-ups every year; The worst I’ve ever experienced was in January this year when I lost 8 kilos in four days.

Trial and error taught me how to manage my condition.

I have a rescue pack at home, continue it when the flare reaches the shivering/sweating stage, and always drink two to three liters of water a day.

I try to eat more fiber and sometimes take psyllium husk to increase my intake.

If I have diarrhea, I switch to a water-only diet for a few days and sleep as much as I can.

I have a hard time starting to eat again after a flare because I’m afraid of symptoms appearing. Once I was sick for five days, but I was starting to feel better and ate a small amount of chicken, carrots, and celery. I spent most of that night in the bathroom and returned to bed the next day, sweating and freezing.

Despite what Professor Hayee said, I think it’s better to stay away from loofahs after a flare-up. As a friend and fellow sufferer says, ‘eating fiber while the gut is still inflamed is like applying sandpaper to scrapes’.

Even when I’m not in a flare, I’m rarely completely ‘fine’. I suffer from fatigue, frequent nausea, and often feel nauseous.

But there is a silver lining. A treatment in which small sacs are surgically closed is being tried. The clips are inserted through an endoscope (a long thin tube) while the patient is under conscious sedation.

Professor Hayee says: ‘My team at King’s have published research showing that cutting is safe and reduces symptoms [of diverticulitis] and reduces the frequency of diverticulitis attacks as well as IBS.’

The pilot study was published in the journal Gut in 2019, and the full results, which Professor Hayee told me looked “very promising”, will be published soon.

For my fellow sufferers and I, this may be the game changer we’ve been waiting for.

For more information visit gutscharity.org.uk And gutresearchuk.org