Many people living with HIV/AIDS struggle with diarrhea every day.
They don't bring it up and they don't readily talk about it. When asked if they have any current HIV symptoms, they say "no," forgetting or not realizing that the diarrhea they have been contending with is a full-fledged symptom. When asked directly if they have diarrhea, however, they will say "yes." They are not out to hide anything.
"People feel like they are the only ones that have it, and it is embarrassing, but really, everyone has stories," says Brian Lowe, a client of AIDS Project Los Angeles and person with HIV disease. "No one would talk about diarrhea in support groups. People won't want to talk about diarrhea, though they will read an article."
Diarrhea is often discussed at length in classes held by AIDS Project Los Angeles' HIV & Nutrition Program, and participants in the classes learn strategies on coping with it. "Given a safe space and permission, a lot gets expressed and learned in our setting," says one of the several registered dietitians who teach APLA nutrition classes.
"Diarrhea is not a minor part of one's life," says Lowe. "It controls one's energy level and activities for the day."
It makes sense to be aware of ways to avoid diarrhea and adopt those healthy habits early and to employ them routinely. One has to be more careful -- it is better to be safe than sorry.
The fact that so many potential causes of diarrhea exist makes the problem even more difficult to address.
Hearing a health-care provider state that diarrhea is caused by medications, unexplained or "just part of HIV disease" leaves many individuals frustrated. Then there is the situation where neither the health practitioner nor the client mentions the topic of diarrhea, or when the client is left with the message that diarrhea must be dealt with alone. Consider:
Does your practitioner routinely ask about your bowel moments? That is: What is your bowel frequency, consistency, smell or color? Any changes?
Are you offered information about how to better manage diarrhea through diet?
Are you referred to a gastroenterologist?
Are you referred to a registered dietitian?
Registered dietitians report that they sometimes see patients who have suffered from diarrhea for years. Many of these individuals state they don't recall a conversation with their health practitioner about ways to manage diarrhea through diet.
While it may seem like common sense to some, there are clients who have never been told that fatty or fried foods, or foods containing lactose, caffeine, insoluble fiber or gas-producing foods, can worsen a case of diarrhea. Nor were they told that foods with soluble fiber like rice solids or psyllium can lessen it.
"Physicians do not talk much about diarrhea, and do not give much tangible information on how to deal with it," says Lowe, a patient advocate.
In a study recently reported in the Journal of Symptom Management, doctors paid more attention to symptoms that they could directly see and measure than symptoms that were less visible as well as those that were linked to adverse treatment effects. Diarrhea fell into this latter category.
Diarrhea can contaminate the environment, food and water with organisms that will infect others. Chronic diarrhea can lead to weight loss and wasting, malnutrition, dehydration, electrolyte loss (sodium, potassium, magnesium and chloride) and skin breakdown. It can lead to hospitalization and death.
At least half of those with HIV disease will at some point get diarrhea, and those with CD4 counts lower than 250 are at greatest risk.
Brian Lowe first dealt with uncontrollable diarrhea when he had MAC and a pneumonia infection at the same time along with some other problems. "Every time I stood up a little leaked out," he says. While the opportunistic infections got treated, the problem of diarrhea never completely went away.
Lowe tenaciously advocated for himself to get more and better medical attention to deal with his chronic diarrhea. He grilled his medical team at his clinic, which included a registered dietitian. He went beyond his own clinic to seek out the services of Peter A. Anton, M.D., Director, UCLA Center for HIV and Digestive Diseases, as well as talking with registered dietitians at AIDS Project Los Angeles and Project Angel Food.
Anton, a gastroenterologist, has a systematic approach to identifying and treating HIV-related diarrhea. He wrote one of our favorite articles on the subject, "Be True to Your Stool," published in POZ.
Education, Management Help
Today, Lowe's diarrhea seems to be caused by medications he is taking to control HIV replication.
"Now, after ruling out another infection, it is more of a management problem," he says. "Sure, the diarrhea I have now would resolve if I changed the meds, but the meds are working and I don't have the option to change meds. I have been to the other side -- being so sick, that is -- so I understand that managing diarrhea and staying with my current meds is a good option."
The prescriptive medicines Brian routinely uses to slow down the time food and liquid travel through the gut are Imodium and Lomotil. He usually takes Imodium three to six times a day, depending on what he has to do, and if bathrooms are readily available. These medications slow the time it takes foods to get through the intestines and decreases the number of stools passed each day.
But taking medications to control the side effects of other medications is not all that he is doing.
"A little gurgle in the stomach needs to be taken seriously," says Brian. Carefully considering what you have to do, how readily available bathrooms are and the state of one's GI tract, often determines what you can do during the day.
"There is some control," Brian says from hard experience and learning: "What I am doing tomorrow, is what I am eating today. Meaning that eating some certain foods -- foods high in fat -- are kind of like having a hangover.
"If I eat two Big Macs and French fries, about 100 grams of fat, it is not a good idea," he says. "If I eat at McDonald's, then eat Mexican food -- enchiladas, chips -- I will likely have problems later and the next day. Broiled or baked fish, a little cold pasta-salad with olive oil, vinegar, basil, garlic -- that works better.
"If I am doing something that takes a lot of time, I eat more sensibly. I eat foods lower in fat, foods prepared better, and smaller portions -- four to five smaller meals throughout the day rather than three large meals. Also, I use fiber -- orange-flavored, sugar-free Metamucil twice a day, and that helps, too."
Lowe credits nutritionally balanced meals provided by Project Angel Food in assisting the control of his diarrhea.
Project Angel Food, based in Hollywood and serving all of Los Angeles, delivers meals to people with HIV/AIDS. While transporting meals from the Project Angel Food kitchen in Hollywood to sites across the city, volunteer drivers are careful to maintain safe temperature levels.
"And having confidence in the food -- its safety, nutritional value and that it is balanced -- decreases anxiety about what is being eaten," says Lowe. Anxiety alone can bring on diarrhea.
While Brian seems to know what healthier foods he should eat, it isn't that easy to purchase and prepare them on a fixed income and limited amount of energy. "Cheap, fast-food meals are so unhealthy for us -- Chicken McNuggets, with fries -- are not good eating," he says. While a little fat may not be a problem, fast foods are usually too high in fat to be tolerated well.
"It is not that you have to give those foods up, but you have to understand the consequences," says Lowe. "For example, yesterday I had a taco, rice, beans, salsa and chips, but I couldn't have two of those types of meals on the same day."
Lowe uses Metamucil routinely. "Originally, I thought it was ridiculous to take fiber," he says. "I don't have constipation. But go ahead and test it. Put some in water and watch it become tight, firm and gooey. Go ahead and leave a spoon in it."
Bulk-forming soluble fiber from psyllium is the major ingredient in Metamucil, Konsyl and other similar products. Psyllium also can be purchased in bulk as a powder or in bars. These fiber supplements can increase the consistency of the stool and increase the stool's transit time in the gut.
Lowe came to understand the concept of titrating, or finding the level of fiber that worked for him. He takes two tablespoons of this extra fiber in the morning and then again the evening. Each time he mixes it with 8 ounces of water. "It is not bad at all," says Lowe. "If I miss it, the next day or five hours later I will have a bout of diarrhea."
According to Dr. Anton, soluble fiber does not affect absorption of medications. Some wishing to be cautious take soluble fiber supplements an hour away from taking medications.
Watch What You Eat
Awareness of the amount of your water intake and its quality is important in order to manage diarrhea.
A dedicated water-drinker, Lowe says that he has called water manufacturers to check on the quality of its products. "Arrowhead assured me that Mountain Spring Water was filtered through reverse osmosis," he says.
If a manufacturer does not assure consumers about how their water is processed on the products' label, clients are encouraged to call them to clarify how the water is processed and to urge them to change their labeling to reflect the truth. Without a clear statement on the label of how the water is processed, any consumer who is immune-compromised cannot make a comfortable or informed purchase.
Lowe avoids electrolyte sports drinks, "except once in a while as a treat after a workout," he says. In doing Bio-electric Impedance Analysis (BIA), Lowe discovered that his body water was below normal, so he started to drink more water to restore his water intake to within normal limits.
Like many others who are careful about hydration, Lowe will choose soda that is in a can or a bottle over tap water or soda from a soda fountain. Lowe will even choose an occasional bottle or can of beer over tap water.
APLA's Nutrition & HIV Program recommends that HIV-infected men should drink at least 10 to 12 cups of safe water each day. Women should drink at least 9 to 11 cups. If you have diarrhea, you will need even more water than that to replace those extra losses.
Safe water also includes soups, fruit and vegetable juices, cow, soy and rice milks, sports drinks, electrolyte replacers and oral rehydration solutions.
Dehydration can be life-threatening. Danger signs of dehydration include a decrease in the amount of urine made, darkening of the urine's color, and skin that is dry, pale and lacks its usual elasticity.
Brian has come to recognize how serious food safety is if you want to avoid getting diarrhea in the first place. Food safety awareness is especially important during the holiday season.
"There is so much food lying out," says Lowe. "There is not much hope that it is really safe to eat. You have to wonder how long the food had been sitting there without adequate refrigeration. Before it got to the table how long it was sitting in some car before it got refrigerated? It is definitely harder to plan and maneuver through this period of time."
Know Your Foods
Avoiding certain foods and sampling others can help people with HIV manage diarrhea.
A report from the recent ICAAC found that a 500 mg calcium carbonate supplement taken twice a day was helpful in reducing loose stools associated with the protease inhibitor, nelfinavir (Viracept).
For many who avoid calcium-rich milk products altogether due to lactose, taking calcium supplements will serve two purposes. While in general 500 to 1,000 mg of calcium per day is within the recommended daily amount and should be OK, supplementation of anything should be cleared with your doctor before starting. Some non-dairy sources of calcium that can assist slowing stool transit time are salmon or sardines that contain bones, calcium-fortified orange juice or tofu (if the tofu has been preserved with a calcium solution).
Other foods that may help lengthen transit time, increase the consistency of stool, and decrease the number of stools passed per day are: bananas, rice, applesauce, pasta, boiled or baked potatoes without the skin, smooth peanut butter and yogurt. Look specifically for yogurt that contains live cultures.
Symptoms of gas, cramps, bloating and diarrhea may result from lactose intolerance. Ways to cope with lactose intolerance include omitting dairy products, eating only dairy products that have been pretreated with the lactose enzyme or taking the lactose enzyme when eating dairy products.
Some find that they are sensitive to the small amounts of lactose that are added to processed foods and even some drugs. These folks must become careful label readers, scouring the list of ingredients of all meds and foods. Whey, lactose, nonfat milk solids, buttermilk, malted milk, margarine, and sweet or sour cream are ingredients that may cause problems for those who are intolerant to lactose. Lactose may also be added to some breads, dry cereals, cookies, instant cereals, instant soups, breakfast drinks and milk chocolate.
Ask your pharmacist and doctor if lactose is a filler in any of the medications you are taking.
Caffeine speeds up the intestine track and stimulates the lower colon to signal it to evacuate its contents. Caffeine is in coffee, colas and teas and in some medications, like some forms of aspirin for example. Limiting or eliminating caffeinated products can dramatically reduce the amount of loose stools some people experience.
Insoluble fiber, mostly skins and seeds of fruits, vegetables and whole grains, should be reduced or avoided when diarrhea is a problem. Gassy foods also should be carefully considered as problematic. These foods may be exacerbating diarrhea: beans, broccoli, cauliflower, cabbage, green leafy vegetables, Brussels sprouts and spicy foods.
Be wary of prunes, rhubarb, figs, real licorice, blueberries and other foods recognized as "natural laxatives."
Olestra and Olean pose an especially troubling problem. Not only do these products cause "anal leakage" in healthy individuals, but they also reduce the absorption of fat-soluble vitamins (A, D, E and K). Foods that contain these substances are items that any person living with HIV should simply avoid.
Trial and Error
Observe what and how much you are eating and when you experience diarrhea. Using trial and error, identify foods that are a problem for you.
As Lowe suggested, find the amount of a problematic food you can tolerate and adjust your portions accordingly. Maybe you can eat a little of that problem food, just not too much. Only you will become the expert on how much of some food or drink is too much for you.
As you experiment by adding some foods to your diet and reducing or eliminating others, be careful to maintain variety. Even when you have diarrhea, the basic principles of nutrition remain true.
Marcy Fenton, M.S., R.D., is AIDS Project Los Angeles' HIV nutrition advocate. She can be reached at mfenton@APLA.org or by calling (323) 993-1612.