But it shouldn’t be. While almost every person with HIV will experience diarrhoea from time to time, in most cases there are things we can do to keep the squirts at bay.
Jenny McDonald is a dietitian who has worked with HIV+ people since 1987. “You shouldn’t live with diarrhoea,” she tells me over a lunch peppered with tales of scatalogical woe. “I’ve been a really strong advocate that if someone’s got diarrhoea they need to speak to their doctor or HIV dietitian. You should be able to manage it.”
Because having the trots can reduce the absorption of nutrients and medication through the gut, people with chronic or frequent diarrhoea can experience both weight loss and reduced treatment efficacy, in some cases leading to treatment failure due to not getting enough of the drugs into the bloodstream.
Because of this, diarrhoea should be treated as a potentially serious medical condition. But Jenny agrees that many HIV doctors tend to brush it off.
“I think it’s seen as a minor side effect because if you look at the product information on a lot of the HIV drugs, the side effects are nausea, vomiting and diarrhoea,” she says. “If you’re taking three or four different drugs and they’ve all got that side effect it’s just assumed that that’s part and parcel of it.”
Consequently, many positive people (like me) and their doctors have come to accept diarrhoea as an unfortunate, but inevitable fact of life with HIV. But for people with severe and chronic diarrhoea, the negative effects are not just physical: chronic diarrhoea can significantly reduce quality of life.
Chronic diarrhoea can make things like going out, socialising, or having sex difficult and stressful. Although the prevalence of the kind of debilitating and socially isolating diarrhoea-related illnesses associated with the early days of HIV/AIDS has decreased significantly, diarrhoea remains disturbingly common among positive people.
In a study presented to the Digestive Disease Week conference in Florida in May, American researchers found that 26 percent of HIV-positive patients reported having more than three bowel movements a day in the previous week, compared with five percent of HIV-negative people. The researchers also found, perhaps not surprisingly, that patients with diarrhoea have much lower quality of life scores.
Shit happens, but why?
There are two main reasons why positive people might find themselves doing the Aztec twostep. It may be the result of infection with a microorganism; or it could be the side effect of medication. The first step towards control is to identify the cause.
Infective diarrhoea is in many cases the easiest to treat. Some of the more serious microorganisms that can cause diarrhoea include cryptosporidium, Microsporidia, MAC, CMV and shigella, but in most cases the culprit is likely to be less exotic: campylobacter, Giardia and rotavirus.
Diagnosis of these types of infections typically is made from a stool sample, although occasionally a endoscopy or colonoscopy may be required for confirmation. Antibiotic treatment is then usually very effective in dealing with the infection.
Crypto- and microsporidiosis are, thankfully, not as common in HIV-positive people as they were a few years ago. These serious parasitic infections still have no effective treatment; increasing CD4 levels through aggressive anti-HIV therapy is the best means of eliminating them.
If infective causes have been ruled out, it’s possible that your case of the volcanic whoopies could be a side effect of antiretrovirals or other drugs.
Diarrhoea has been reported as a common side effect of all of the protease inhibitors, especially nelfinavir, and with the nucleoside drugs ddI and abacavir. Most other anti-HIV drugs have had diarrhoea listed as a less-common side effect, and many other medicines such as antibiotics can also send you running for the dunny.
Dealing with it
The most important advice is to keep taking your drugs and keep eating.
The temptation to stop taking drugs that are causing diarrhoea can be very strong, especially if you’ve just started a new treatment regime and suddenly find yourself spending a lot of time on the throne. In many cases, the diarrhoea will settle down after a short period of time, but you need to keep taking the drug to give this a chance to occur. If the diarrhoea is serious, especially if it persists for more than five days or is accompanied by weight loss, see your doctor, but don’t stop taking the pills unless your doctor agrees.
Continuing to eat when you have diarrhoea, especially if it’s accompanied by nausea, is a big ask. The smell, sight or thought of food can make your stomach turn, but eating is essential, Jenny stresses, even if you have no appetite.
On the lining of the gut wall, small finger-like projections called villi increase the surface area of the gut and so increase its absorptive capacity. Without food going through the digestive system, the villi start to fall away; in people with diarrhoea this can set up a vicious cycle.
“Instead of having finger-like projections you get stumps,” Jenny explains. “The surface area is less and so you get less absorption of your nutrients.” Reduced absorption of food, especially fat, can cause diarrhoea, setting up a cycle where the problem continues.
“Often when people have diarrhoea they stop eating. The diarrhoea may subside [but] then when they start to eat again, the diarrhoea returns because the villi haven’t regenerated.”
Jenny understands that people in this situation don’t have much of an appetite, especially when eating can often be the trigger for an attack, but says eating the right type of foods can make all the difference.
Dietary strategies
- Soluble fibre in the form of psyllium husks, which can be bought at the supermarket, or Metamucil, from the chemist, help by absorbing water from the gut. Jenny recommends a teaspoon of psyllium husks sprinkled onto cereal or mixed in with apple juice. Fibre supplements should be taken at least a couple of hours apart from HIV drugs or they can affect drug absorption.
- Clear juices such as apple or pear are good, but avoid most other fruit juices, which can aggravate the problem.
- Bananas and white rice are high nutrition foods with the right type of fibre. Dry white toast is an old standby but can be hard to eat if you have a dry mouth. Clear broths and soups are usually a good bet, but watch out for packaged soups containing MSG.
- Maintain fluid intake to avoid dehydration. If your skin starts to become dry or doesn’t bounce back quickly when lightly pinched, increase the fluids, especially as dehydration will cause a dry mouth, making eating more difficult. Sports drinks like Gatorade or rehydration solutions like Gastrolyte can be helpful in replacing lost electrolytes.
- Eat small amounts of food five or six times a day instead of trying to consume normal-sized meals.
- Avoid foods which can make diarrhoea worse: coffee and other caffeinated beverages such as cola, alcohol (especially beer), fried or spicy foods, and foods high in insoluble fibre such as raw vegetables, vegetable and fruit peels, salads, beans and brown rice. Dairy products can also sometimes be a problem. Leafy green vegetables such as broccoli and cabbage can cause gas, which in combination with diarrhoea can be less than pleasant.
- Watch out for highly processed foods, especially those containing monosodium glutamate (MSG) often listed on the label as flavour enhancer 621. Artificial sweeteners can also have a powerful laxative effect.
Through the eye of a needle
A lot of people resist using drugs to manage the side effects of other drugs, but Jenny reckons that antidiarrheal medicines like Imodium (loperamide) can really help.
“If they find that their diarrhoea is worse in the morning you might get them having some Imodium at night time and then again in the morning. The effect of the Imodium is to slow down the peristaltic movement in the gut, so it gives the gut more time to reabsorb the fluid that’s there,” she says.
“I would look at loperamide morning and night and then if they’ve still got diarrhoea you’d then get them to top it up with loperamide after a bout of diarrhoea.”
Antidiarrheals can have the opposite effect — making you constipated — so careful monitoring of the effects and gradual adjustment is important.
Complementary solutions
A number of recent studies have shown that calcium supplements can help ease the diarrhoea often experienced by people taking the protease inhibitor nelfinavir (Viracept). In a small study reported at the Canadian AIDS Conference in April, researchers found that calcium also seems to work for people experiencing diarrhoea from other protease inhibitors. The dose used in this study was 500mg of calcium carbonate twice daily, either two hours before or two hours after the PI dose. Calcium is very safe to take.
Other complementary therapies that can help calm diarrhoea are peppermint and ginger teas and the amino acid l-glutamine. Adding a little nutmeg to food can also help by slowing down the peristaltic motion.
If you’ve had an infective diarrhoea which has been treated with antibiotics, it’s important to replace the helpful bacteria lost from the gut. Jenny recommends Yakult drinks, and suggests drinking two a day for five days, then one a day for the next five days, then one every second or third day after that.
Probiotics may also be of benefit to people taking nelfinavir, according to an American study reported last year at the adverse drug reactions workshop in San Diego. In this study 16 patients taking nelfinavir took 1.2g acidophilus and bifidus in powder form every morning, plus 11g Metamucil 2 hours after taking their HAART dose. If this didn’t work after four weeks, l-glutamine was added, in doses of up to 30g. In 15 of the 16 patients (94%) this regime “dramatically reduced” their diarrhoea.
At the end of our discussion Jenny grabs me by the arm. “You don’t have to live with diarrhoea. Go straight home and put the things I’ve suggested into practice and I guarantee you’ll spend less time in the ’loo.”
