The Pharmaceutical Journal
Vol 268 No 7192 p475
6 April 2002

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Living with diverticular disease: becoming an expert patient

Pharmacists, who are also patients, describe in their own words what it is like to have to take a medicine for life

Living with diverticular disease: becoming an expert patient

Sixteen sulphaguanidine tablets every day was the prescription when I was diagnosed by barium enema with colon diverticular disease (DD) 30 years ago. This did not clear up the diverticulitis or prevent peritonitis, but was good at sensitising me to sulphonamides and producing allergy to the parabens in toiletries and cosmetics.

Just a couple of years later came the food revolution, when the prescribed low residue, "smoothage" diet was replaced with the high fibre, roughage diet. This was promoted as the answer to DD because, supposedly, it reduced symptoms, stopped complications developing and could have prevented DD if more fibre had been eaten earlier in life. What a high fibre diet actually did was to give just more of the same whether the problem was pain, gas, diarrhoea or constipation. No drugs were developed for DD and the antispasmodics borrowed from irritable bowel syndrome did either nothing or potentiated constipation.

The lack of effective treatments was nothing compared with the lack of knowledge about DD. Few health professionals had heard of it.

There was no option but to become an expert patient and find by trial and error the foods and situations which affected the gut. I have been able to move on from those early days when I used to visit the toilet up to 10 times before going to work and could not predict from one day to the next how I was going to feel. It is difficult for others to appreciate what DD is all about, but I can say that the pain it has given me has been far worse than any experienced in childbirth. But for 30 years the only advice available was fibre, more fibre and even more fibre.

Now I am a pensioner, I am believed when I say I have DD and everybody seems to know somebody who has it, which is not surprising with an estimated five million sufferers in England and Wales. There still have been no new drugs or treatments. Only soluble fibre products have stood the test of time. But the trials in the 1970s on which the fibre theory was based are not now thought to be clinical evidence. So, in effect, DD is back to where it was 30 years ago although there has been a change of approach. This is not the expected renewed search for treatments and answers but an attack on the disease itself. Some gastroenterologists write that if there are IBS-type symptoms then the presence of diverticuli is irrelevant. Others think that DD patients only have problems when they have diverticulitis. The most offensive view was that doctors do not think that DD is a disease any more because so many people have it.

I gave up work a long time ago; DD and a family were enough of a roller-coaster ride. A pharmacy may not have much to offer a patient with DD and I know that many sufferers have to find solace in health food shops and complementary therapies, but a little understanding goes a long way when there is not much else available.