What is diverticular disease
The large bowel becomes deformed in diverticular disease. The muscles appear to be permanently contracted so that the colon can be shortened and more corrugated. The bowel wall becomes ruptured particularly next to it’s blood vessels and pressure forces the inner layers to protrude through the wall to produce the characteristic grape-like pouches on the outside of the colon. There can be few of these pouches – called diverticula – or the whole colon can be affected. Similarly there can be a wide range of symptoms, but nobody knows how to stop the possible progression of the disease from symptomless, to a chronic, debilitating and recurring syndrome and on to life-threatening complications. Death rates in this country started at nil and have risen throughout the 20th century. With any other complaint, this statistic alone would prompt an outcry for research into causes, prevention and treatment.
There is a 1 in 50,000 chance of getting Parkinson’s disease as you get older, osteoporosis odds are 1 in 3 for women and 1 in 12 for men. Dementia is running at 1 in 10. Diverticular disease affects about 1 in 2 people in the same age group but not many people have even heard of it compared with these other diseases. Diverticular disease does not get publicity because there is no research or new treatments to report, there are no patient lobby groups and celebrities rarely admit to having such an unglamorous complaint although other bowel complaints are well publicised.
The Fibre Theory
There was interest in the disease in the early 1970s when epidemiology was used to show that it was caused by lack of fibre in the diet and wheat bran and other fibres could prevent both the disease and its symptoms. This theory was adopted by the medical profession but it owed much to the charisma of its exponents rather than validity of the evidence and trials. Disagreement did not get aired in medical journals. For the next 30 years research into diverticular disease was suppressed and the only advice for patients was to eat more and more fibre in their diets.
There has been a glimmer of change in the last couple of years. Examination of the old trials has shown that there is no valid clinical evidence that a high fibre diet or other treatments have any effect on diverticular disease and it has even been admitted that a high fibre diet may not always be appropriate. The epidemiology has also gone askew because diverticular disease has appeared in some areas of the world which were used to show that a high fibre diet prevented it. There have always been examples which did not fit this theory and there are still countries were the disease is rare. The promotion of high fibre diets has had no impact on the disease statistics in this country.
Statistics
In an obscure report somewhere about 1970 someone said that they thought only 25% of people with diverticular disease ever developed the inflammatory condition of diverticulitis. This has changed into fact merely by repetition and like the Chinese whispers game now only 10 to 25% ever get any symptoms at all. This is very frequently quoted to emphasise that diverticular disease does not matter. Even if this was true, it means that out of over 5,000,000 sufferers in this country, 1,500,000 people are on a downwards spiral to 25,000 hospital admissions and up to 3,000 deaths per year. Only recently has a gastroenterologist actually asked his patients how many of them have symptoms and 77% – not 25% – of them said they did. A study in USA showed that in a group of men diagnosed with diverticular disease in a three year period 76% had symptoms.
Treatments
It is not just statistics that are confusing. The information and treatment available to patients is often contradictory so that they do not know what to do for the best. For example, they are told that diverticular disease is caused by decades of constipation but after diagnosis they don’t have any symptoms, however, if they do, a medication they are often given has constipation as a side effect. Some gastroenterologists are very concerned about the situation and the need to raise the profile of diverticular disease. Others write that if colon diverticula have been found in an examination, then their lack of relevance should be explained to the patient. In research papers on diverticular disease, such preconceived opinions seem to affect the interpretation of the facts and the conclusions drawn. Rather than promoting the intense research which is blatantly necessary, the prevailing view is that diverticular disease is an inevitable effect of old age and that so many people have it that it should not be considered a disease any more. Thankfully the 1 in 3 people who will get cancer are not dismissed in the same way and told it is a normal part of ageing. There would be an outcry.
The effects of diverticular disease
The symptoms of diverticular disease are not trivial. Pain, sometimes completely incapacitating, is the most common symptom and pain often persists for days, weeks or months. There are attacks of bowel disfunction with constipation and/or diarrhoea, urgency or straining, excessive gas and bloating and passing mucous. Some patients have bleeding from the back passage either as an energy-sapping chronic condition or sudden severe haemorrhage. The diverticula are always likely to become infected by trapped faeces resulting in fever and abscesses and repeated bouts of this inflammation (diverticulitis) can lead to serious problems of strictures, adhesions, peritonitis and fistula formation between the bowel and other organs in the abdomen. Lifestyle and quality of life are seriously affected by such symptoms, often the proximity of a toilet is an overriding restraint on any activity. If everyday problems were taken more seriously perhaps the life-threatening complications would be avoided.
The whole person is affected by diverticular disease. It is fashionable to blame bowel symptoms on stress but the opposite can occur with diverticular disease. The attitude towards the disease causes much stress and anguish. It is most distressing for patients to be constantly told that they do not have symptoms, that pain is all in their mind, there is nothing wrong with them but old age, nothing can be done but to learn to live with it, the treatment is to think positively and/or to eat more fibre. This is particularly poignant for people diagnosed in their 30s who have a long time to go before old age. Relationships can be devastated when family members are told that there is nothing wrong when their relative has diverticular disease so that some people feel that they have to hide their problems so as not to be considered attention seeking. However this is what health professionals have been taught and is the way of dealing with diverticular disease.
The government is emphasising the health and care of the elderly but there is no mention of diverticular disease in their National Service Framework for Older People. It is not included in the NSF for long term conditions or in the Expert Patient initiative. Research is virtually non-existent in this country.
What diverticular disease needs
Diverticular disease sufferers feel abandoned by orthodox medicine. Some are housebound because of the condition, others of working age cannot take employment because of constant pain or unpredictability of symptoms but are not considered eligible for benefits. Sufferers are often lonely with lack of information, help and support, and have to try desperately to find treatment themselves which makes them easy targets of quackery. They share many symptoms and problems with other bowel and excretory complaints but these have patient associations that are effective and well established. A similar organisation is desperately needed to address the difficulties peculiar to diverticular disease and the age range affected.
There is a problem. When diverticular disease sufferers need help and support then they are not in a very good position to organise and give that support to others. Age with other ailments, the unpredictability of symptoms and travelling problems make it difficult for people to commit to regular voluntary work. People with diverticular disease need sometimes to be expendable at short notice. Help is needed from younger and healthier people with the long term aim and hope that they would not have this miserable complaint as they get older.
A properly constituted and administered association is needed to promote awareness of diverticular disease in diverse areas including government, media, and medical and other healthcare professions. Patients also need the support, information and companionship that such an organisation could bring. There are enough potential members to suggest viability of an organisation even possibly at local level.
If Incontact could facilitate the running of an association for diverticular disease a lot of people would be grateful. People with experience of the disease would help as much as they could and no doubt support from commercial, research and medical sources would soon follow.
© Mary Griffiths 2002
NOTE The charity “InContact” considered taking over the support group for people with diverticular disease (DD) in 2002. They wanted to know about DD and what it meant to people who had it. This article was sent to them. They considered some of the article was controversial. It appeared greatly reduced and toned down, with added advice on treatment by dietary fibre, in their Spring 2003 magazine.