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MRC Prion Unit
From fundamental research to prevention and cure


All aspects of personal care are affected by prion disease. End stage problems lead to double incontinence. As this is a particularly personal problem, many patients find it hard to discuss. As the majority of patients are young with the inherited forms of prion disease specialist continence specialists are in short supplies. The nursing staff at the NPC, can offer advice after we have built a relationship with patients, we can discuss some of these issue’s more openly and hopefully achieve the best possible outcome for the patient. We can also advise on symptomatic management of recurring urinary infection and dehydration as well as skin care.

In prion disease there can be a decrease or increase in normal frequency of defecation accompanied by difficult or incomplete passage of stool and/or passage of excessively hard, dry stool or diarrhoea.

Constipation is a common, yet complex problem; it is especially prevalent among patients with prion disease. Too little fluid, too little fibre, inactivity or immobility, and disruption in daily routines can result in constipation. Use of medications, particularly narcotic analgesics or overuse of laxatives, can cause constipation. Overuse of enemas can cause constipation, as can ignoring the need to defecate. Psychological disorders such as stress and depression can cause constipation. Because privacy is an issue for most, being away from home, hospitalised, or otherwise being deprived of adequate privacy can result in constipation. Because "normal" patterns of bowel elimination vary so widely from individual to individual, some people believe they are constipated if a day passes without a bowel movement; for others, every third or fourth day is normal. Chronic constipation can result in the development of haemorrhoids; diverticulitis (particularly in elderly patients who have a high incidence of diverticulitis); straining at stool, which can cause sudden death; and although rare, perforation of the colon. Constipation is usually episodic. Dietary management (increasing fluid and fibre) remains the most effective treatment for constipation.

MRC Prion News