Disclaimer: This article does not constitute medical advice. If you have symptoms of diverticulitis or are concerned about your health, please seek guidance from a qualified medical practitioner. This article is based on anonymised discussions from our community group on Facebook.
- Why Does This Matter So Much?
- “No Follow-Up At All After Diagnosis”
- “They All Say Completely Different Things”
- “I Don’t Look In Pain”
- “Constantly Prescribed Antibiotics Which Wrecked My Microbiome”
- “Not Being Told The Seriousness Of This Disease”
- Is It The Same Everywhere?
- What Good Care Looks Like
- What Should Happen After Diagnosis?
- Key Takeaways
- You Are Not Alone In Feeling This Way
The overwhelming response to the question “What makes you mad about how the medical profession dealt with you?” was a single, repeated theme: no follow-up, no dietary advice, no explanation of what comes next.
Across more than 200 responses from members of our community, the pattern was almost universal. You get a diagnosis. You might get antibiotics. And then you are, to use the phrase that came up again and again, simply left to get on with it.
That is not the same as saying every member has had poor care. Some have not. And where care was good, members were clear and grateful about it. But those positive experiences were conspicuously outnumbered, and the contrast between them and the majority tells its own story.
Why Does This Matter So Much?
Diverticulitis is a condition that affects roughly one in three people over the age of 60 in the UK, according to the NHS. It can range from a manageable, largely asymptomatic condition to something that causes repeated, severe flare-ups, hospitalisations, emergency surgery, and life-changing complications including perforations, abscesses, peritonitis, and colostomy bags. It can also be fatal.
And yet the experience described by the majority of our members is that, outside of acute crises, the condition is treated as something to simply tolerate.
“No Follow-Up At All After Diagnosis”
This was the first response to the original question, and it set the tone for everything that followed.
“Just told I have it. No help, no advice, just get on with it,” wrote one member from the north of England.
“Diagnosed told to buy Buscopan,” wrote another.
“They dealt with me, no mention I had it, then nothing,” said a third.
One member described being told about the condition while still groggy from colonoscopy sedation, with nothing mentioned afterwards. Another found out after five years of suffering that the diagnosis had been in her notes all along and nobody had ever told her. A third discovered she had it only when she went to her GP with chronic stomach pain, and a doctor happened to look at her records. “I got my head bitten off,” she said, after being referred onwards, “and was told I didn’t need to be seen. Just left to manage.”
This is not an isolated complaint. It is the dominant experience.
“They All Say Completely Different Things”
If the lack of follow-up is the most common grievance, the second most common is the bewildering inconsistency of advice. Members across the group described being told contradictory things by different doctors, sometimes within the same hospital visit, sometimes over years of care.
“No one has a clue, they all say completely different things,” wrote one member. “I learned more from this group than from the five or more doctors I’ve talked to.”
The confusion around diet is particularly pronounced. Some members were told they could eat anything after diagnosis. Others were given a vague instruction to follow a high-fibre diet with no practical explanation of what that means. Several members reported being told to return to a normal diet within days of a flare, advice that, as our thread illustrated, led directly back to hospital for some of them.
One member described being told by her doctor to start adding fibre as soon as the pain eased, then learning from a colorectal surgeon six months later that the current guidance recommends avoiding additional fibre for four to six weeks after a flare. She believes the early fibre reintroduction kept her in a prolonged flare without anyone realising.
The seeds and nuts question came up as a particularly vivid example of contradictory advice. Some doctors tell patients the old guidance was wrong and that seeds and nuts are no longer considered triggers. Others remain firm that clinical experience contradicts this. Members are left navigating genuine uncertainty with no personal guidance whatsoever. The official NHS advice relating to seeds and nuts increasing the risk of developing diverticulitis is that “there is little evidence to support this“.
“I Don’t Look In Pain”
One theme that emerged repeatedly, and which clearly struck a nerve, was the dismissal of pain.
“They don’t understand how painful it can be,” wrote one member. Others described being told they “didn’t look like they were in pain,” or that their symptoms were probably a pulled muscle, ovulation, IBS, or anxiety. One member, whose symptoms had been dismissed for years, eventually collapsed in emergency with a CRP of 300 and a white blood cell count of 20,000, two abscesses, peritonitis, and emergency surgery resulting in a right hemicolectomy. “They were making me look and feel mentally unstable,” she wrote, “because I was determined that something was wrong.”
One member, who used to be seen monthly by a nurse specialist, a service that quietly disappeared described having to fight simply to get an appointment when things are bad. “It’s easier going to emergency,” she said. “They have no idea how to deal with the illness until you are seriously ill.”
“Constantly Prescribed Antibiotics Which Wrecked My Microbiome”
Antibiotics are, for many people with diverticulitis, a necessary and potentially life-saving treatment. But several members raised the question of whether they are overprescribed, and whether the long-term impact on gut health is adequately explained or monitored.
“Constantly prescribed antibiotics which wrecked my microbiome so I just wasn’t able to digest food,” wrote one member. Another described experiencing every possible side effect from a course of antibiotics, with no follow-up support for the damage done to her gut. “They didn’t care about the damage,” she said.
This is not a fringe concern. Research into the relationship between antibiotic use and gut microbiome disruption is ongoing, and the NHS guidance on diverticulitis notes that antibiotics are not always needed for mild cases. Some of our members reported receiving good care on this front with one member in Idaho described a doctor who specifically avoided unnecessary antibiotics and gave clear guidance on managing flares, but this was not typical.
“Not Being Told The Seriousness Of This Disease”
Several members described outcomes that might have been different if they had understood the potential severity of their condition from the outset.
“I wish someone in 2024 had warned me of the seriousness of this horrible disease,” wrote one member who was diagnosed, told it was not a big deal, and then faced repeated severe flares the following year, ending in surgery that removed most of her sigmoid colon and rectum.
Another described a colon perforation that went unrecognised during an A&E visit, with serious consequences the following day. Others described years of being told that diverticulitis was “not life threatening” and to simply manage it until, for some, it became exactly that.
“It seems to be common practice,” wrote one member, “that while you may be diagnosed fairly quickly, it’s ticking the boxes of follow-up from screening programmes. There might not be money to take it forward.” She spent two to three years in serious decline before things were escalated to the point of surgery, with complications that have permanently affected her quality of life.
Is It The Same Everywhere?
Notably, the experiences varied significantly by geography and by individual clinician, even within the same country.
Several members in Scotland reported good, sustained care from both GPs and consultants. One member in Hereford praised the responsiveness of his local NHS trust when prompted by consultant letters. Members in Australia, Canada, and Malta also reported largely positive experiences. The member in Idaho described a doctor who was clear, proactive, and careful with antibiotics. A member who had a severe acute flare while on holiday in Cyprus said she learned more about the condition in five days of hospital care there than in the preceding 25 years since her UK diagnosis.
The contrast with many English members’ experiences is difficult to ignore. Several described GPs being sympathetic but genuinely limited in what they can do beyond making referrals, with waits for follow-up colonoscopies stretching well beyond the recommended six-to-eight weeks even after urgent referrals.
The practical advice offered by one member – to register for cancellation appointments, which can compress a six-week wait to a single day, was welcomed by many. It is the kind of knowledge that patients share with each other, because nobody else tells them.
What Good Care Looks Like
For balance, it is worth noting what members described as helpful, when they received it.
One member who had acute care in New Zealand described being given a clear recovery roadmap and a colonoscopy recommendation with a timeline attached. Members who described good doctor relationships cited responsiveness to urgent concerns and a willingness to chase hospital departments when communication broke down. One member described her consultant in Hereford as swift to assess and easy to reach when prompted.
One member who has had the condition for over fifteen years described learning, through trial and error, that keeping a written symptom log was invaluable when seeing doctors. “Most like it,” she wrote. Several members independently arrived at the same position: that knowing your own body, tracking your own triggers, and being prepared to advocate for yourself are the practical skills that nobody tells you to develop.
What Should Happen After Diagnosis?
In an ideal world, according to the experiences shared in this discussion, a diverticulitis diagnosis would be followed by at minimum: an explanation of the condition and its potential trajectory, clear dietary guidance (including what to eat and what to avoid during a flare versus long-term), a written information sheet, a contact point for queries and future flares, and a clear plan for follow-up.
The NHS guidance on diverticular disease offers a starting point for understanding the condition, though many members have found it insufficient on its own.
Key Takeaways
No follow-up after a diverticulitis diagnosis is extremely common, and is reported across multiple countries and health systems. Dietary advice is inconsistent and often absent entirely. Pain tends to be underestimated by clinicians. Long-term antibiotic use may cause gut microbiome disruption that is rarely discussed or supported. The severity of the condition is frequently downplayed until a crisis occurs. Good care does exist, but appears to depend heavily on individual clinicians and geography. Patient-to-patient knowledge, as shared in this group, frequently fills the gap left by formal medical support.
Yes, ideally. Current guidance recommends a colonoscopy six to eight weeks after an acute flare to rule out other conditions. Many members report that this does not happen without active chasing. If you have not been offered follow-up, it is worth contacting your GP to request it.
Unfortunately it is common, though it should not be. If you have received no guidance, you can ask your GP for a referral to a dietitian, or explore the NHS guidance as a starting point. Our forum also contains a great deal of shared member experience on what has and has not worked for individuals. You can start an online food and symptoms diary here on this site.
Keep a symptom log with dates, severity scores, and any relevant food or activity notes. Ask specifically for a CRP blood test during a suspected flare. If you feel your concerns are not being heard, you are entitled to ask for a second opinion or, in the UK, to contact PALS (Patient Advice and Liaison Service) at your hospital trust.
In the majority of cases it is manageable. However, complications including perforation, peritonitis, and sepsis can be life-threatening, and several members in this discussion have experienced exactly this. Understanding the warning signs including fever, worsening pain that does not improve with rest, rigidity in the abdomen, or vomiting, and knowing when to seek emergency care is important.
More Reading
You Are Not Alone In Feeling This Way
Perhaps the most repeated sentiment across the entire discussion was relief that others understood. “I’m so happy to see other people feel the same way as me,” wrote one member. “It’s exhausting and sad that they don’t even care.”
Another put it more simply: “I have learnt more from this group than from any medical doctor.”
That is both a tribute to what patient communities can offer one another, and a clear signal that something in the system needs to change.
If you have experienced gaps in your care, we would encourage you to share your experience in our group and to use our food and symptom tracker to start building the kind of personal data that can help you take more control of your condition.
This article does not constitute medical advice. Please consult a qualified medical practitioner for any personal health concerns.
