Is there a Crohn’s cure? Can you stop taking your medication when feeling well? Getting the facts straight about Crohn’s disease can help you better manage the condition.
There’s no clear-cut path to treating Crohn’s disease. That’s because the chronic inflammatory bowel disease varies greatly from person to person.
Symptoms can run the gamut from mild to severe, says Edward Levine, MD, a gastroenterologist and associate clinical professor in gastroenterology, hepatology, and nutrition at the Ohio State University Wexner Medical Center in Columbus. And the response to treatment can vary just as widely. For these reasons, there’s a lot of confusion out there about Crohn’s disease treatments.
To make the best decisions about your care, it’s important to know what’s fact and what’s fiction when it comes to Crohn’s treatments. Start here.
1. There’s a Crohn’s disease cure: MYTH. “There are a number of medications and lifestyle changes that can benefit someone with Crohn’s, but there is no known cure,” says Dana J. Lukin, MD, PhD, an assistant professor at the Albert Einstein College of Medicine and director of the Einstein-Montefiore Program for Inflammatory Bowel Diseases in the Bronx, New York. According to the Crohn’s and Colitis Foundation of America (CCFA), research is underway to help us understand more about Crohn’s disease, help high-risk people prevent it, and ultimately find a cure.
2. Most people with Crohn’s disease will eventually require surgery: FACT.About 70 percent of people with Crohn’s will need surgery when medications no longer control symptoms, such as bleeding, nausea, weight loss, fever, and fatigue, or when they develop a fistula, fissure, or intestinal obstruction, according to the CCFA. Surgery typically involves removing the affected portion of the bowel. “Surgery does not mean your treatment has failed,” Dr. Levine says. “Surgery is part of your treatment.”
3. Early treatment is best: FACT. “The sooner a diagnosis is made, the better off you are,” Levine says. “That’s because some treatments, especially the biologic medications, are more effective the earlier you start on them.” Early treatment also helps you minimize the risks of complications, he adds.
4. You can stop taking your Crohn’s medication once you feel better: MYTH.“This is one of the hardest concepts for patients to grasp,” Levine says. Perhaps that’s because taking a medication every day can feel like a drag, especially when you’re in remission and symptom-free. But Crohn’s is a progressive condition, and its progress is more rapid in some patients than others. “If you stop taking your medication, it can lead to relapses in weeks or months in many patients,” Levine says. “You could get worse, and the risks of complications go back to where they were before you started on medication.” If you’re having issues with a Crohn’s medication, always talk to your doctor about making an adjustment before you stop taking it.
5. A tailored diet could be part of the plan: FACT. While there’s no “Crohn’s diet” that works for everyone, it can help to tailor what you eat to your specific needs, according to the CCFA. Keeping a food diary can help you see which foods tend to aggravate your condition—that way, you can steer clear of them. During flares, it may help to eat smaller meals throughout the day and skip fatty, greasy foods as well as foods that are high in fiber. If your doctor tells you that you have a narrowing in the part of your digestive tract called the ileum—which occurs in about two-thirds of people with small bowel Crohn’s disease—a low-fiber, low-residue diet may minimize your symptoms, says the CCFA. This diet excludes high-fiber foods such as raw fruits, vegetables, nuts, and seeds.
6. It’s safe to stay on steroids long-term: MYTH. There are two goals of treatment, says Saleem Desai, MD, a gastroenterologist with Providence Health in Northridge, California. One is to achieve remission—meaning you have no symptoms—and one is to maintain that remission and prevent flares. Your doctor may give you steroids to treat an acute flare because they’re fast-acting; most people feel better within a few days. However, whenever possible, steroids should not be used to maintain remission because of their long-term side effects, such as high blood pressure, high blood sugar, weakened bones, mood swings, insomnia, and weight gain. Talk to your doctor about when it’s safe to taper off steroids.
7. You must stop taking your medications while you are pregnant: MYTH.Babies born to pregnant women who took medications for their inflammatory bowel disease did not have a higher-than-average rate of congenital anomalies or infections, according to a study of more than 1,100 women published in August 2012 in Gastroenterology and Hepatology. It’s important to talk to your doctor about continuing your medications, especially in the first and second trimester, Dr. Lukin says. “Patients whose Crohn’s is not well controlled going into pregnancy may be at higher risk of complications,” he notes. “It is important that a woman with IBD see a high-risk obstetrician and that her treatment plan is individualized to her needs.”
An unusually warm fall, followed by winter’s relentless snowfalls and bitter cold temperatures that plagued many parts of the United States, have made for a pollen-packed spring.
If you’re one of the estimated 50 million Americans who have seasonal allergies, you can probably attest to a higher level of suffering this season compared to other years.The American College of Allergy, Asthma and Immunology (ACAAI) says we may be in the midst of one of the worst seasons ever for tree pollen.
Trees and flowers all seem to be blooming at once, and that means a sudden burst of different types of pollen at the same time. In my native New Jersey, we typically experience high tree pollen levels between March and May — particularly from birch, maple, box elder, oak, juniper, cedar, and pine trees. But this year’s colder spring temperatures mean the season may extend into the summer.
As a family doctor, I see several patients a day dealing with all kinds of allergies, not just related to pollen count. Food, pets, dust, medication, chemical, and mold allergens can make people equally miserable. If left untreated, allergens can wreak havoc on a person and affect your quality of life.
Surprising Allergy Symptoms
While many people living with allergies experience classic symptoms — sneezing, watery eyes and nose, itchy throat — there are many other less common symptoms that most people aren’t aware of. The overloading of mucus that comes with untreated allergies may invite lingering bacteria to flourish in the sinuses and make you feel miserable.
If you are experiencing any of these symptoms, they could be allergy related:
- Chronic fatigue
- Upper respiratory infection
- Sinus infection (sinusitis)
- Sleeping problems
- Difficulty concentrating
- Lack of exercise endurance
In fact, even healthcare professionals can fail to recognize these lesser known allergy symptoms. Resulting misdiagnoses can delay treatment and further weaken an already overloaded immune system.
4 Risks of Untreated Allergies
Your antibodies are fully aware that one or more allergens have invaded your body and are working overtime to keep them from slowing you down and making you sicker. But if the allergy isn’t treated, your immune system eventually wears down and the allergy has more power to ramp up symptoms to an even higher level.
When this happens, it can affect your daily life and ability to function. Here’s how:
- Chronic sleep issues. Dealing with issues such as chronic stuffy nasal congestion can lead to poor quality sleep, insomnia, or, in the worst-case scenario, sleep apnea, a chronic disease in which oxygen levels decrease during sleep to the point where your heart and your brain don’t get enough air to function properly.
- Infections and inflammation. Uncontrolled symptoms can eventually wear down the immune system and lead to more serious inflammatory problems such as eczema, sinusitis, asthma, ear infections, chronic migraines, and headaches.
- Decreased brain function. It’s hard to concentrate when you’re debilitated by allergy symptoms that inhibit cognitive skills. Chronic fatigue, memory problems, and difficulty concentrating and staying productive can affect work and school performance, and may even be dangerous for people driving or working in hazardous occupations.
- Mood disorders. Ongoing symptoms resulting in a lack of sleep or causing a person to not feel well may also trigger irritability and mood disorders, such as anxiety and depression — all of which can negatively affect your day-to-day functioning, your social life, your relationships, and your overall health.
How to Protect Yourself From Seasonal Allergy Misery
Before you attempt to self-diagnose and self-medicate with over-the-counter medication, see your family doctor to confirm an allergy diagnosis (which can usually be determined with a simple skin or blood test). If your tests come back positive, discuss the best medication regimen for you based on your allergens.
For many with seasonal allergies, avoidance of allergen triggers is the best defense. You canprotect yourself from the ravages of pollen by:
- Replacing furnace filters in your home
- Washing your hair every day
- Avoiding going outside between 5 a.m. and 10 a.m., when pollen counts are highest.
And next year, plan ahead. Begin taking your medication at the onset of the allergy season so you already have all “shields up” when the pollen lands on you. If you have severe allergies, visitPollen.com, enter your zip code, and get a reading of the day’s pollen levels before you leave the house.
Unquestionably, it’s been a long, hard winter for many of us, and it’s time to finally venture outside again. But you can’t enjoy spring and summer if you feel lousy. If you need help figuring out if allergies are ruining your day, talk to your doctor to discuss the best treatment options (such as oral medications like antihistamines), nasal sprays, eye drops, or allergy shots. Nip those allergies in the bud, so you can fully participate in the beauty of the season.
Robert Pedowitz, DO, serves as medical director of the Family Practice of CentraState Medical Center in Freehold, New Jersey. He is board certified in family medicine.
Flares are an unfortunate part of living with lupus, but lifestyle changes can reduce your risk of flares. Eating a healthy diet, exercising regularly, avoiding stress, and staying out of the sun will help.
One of the hardest things about living with systemic lupus is coping with unpredictability; if you have lupus, you will go through periods when your disease seems to be quiet and periods when it’s active and your symptoms worsen. These periods of feeling worse are known as lupus flares. Although there is no way you or your doctor can completely predict or prevent a lupus flare, you can identify and try to avoid known triggers to reduce your risk for flares. Making appropriate lifestyle changes can also help reduce your risk for a lupus flare.
“Some of the common triggers in systemic lupus are sunlight, infections, and stress,” says Amita Bishnoi, MD, a rheumatologist at Henry Ford Hospital in Detroit. Other common triggers include being overtired, starting or stopping medications, becoming pregnant, or undergoing any physical stress, such as surgery or an injury.
Lupus Flares and Lifestyle Changes
“The best thing you can do is live a healthy lifestyle,” says Ellen Ginzler, MD, a professor of medicine and chief of rheumatology at State University of New York Downstate Medical Center, in New York City. “Stay active, eat a healthy diet, stay out of the sun, and don’t smoke.”
Other things you can do include:
- Visit your doctor regularly. To maintain your health, make sure you stick to scheduled doctor visits and let your doctor know if symptoms seem to be getting worse.
- Get plenty of rest. Manage your schedule to avoid becoming overtired or overworked.
- Watch out for stress. Some stress is unavoidable, and having a chronic disease is stressful by itself, but it’s important for people with lupus to avoid putting themselves in stressful situations when possible. Learn some techniques that help you manage your stress. Meditation is an excellent way to reduce stress and decrease your risk for a lupus flare.
- Avoid physical stress. Regular exercise is a great way to stay strong and fit. If you need to undergo a procedure that will require recuperation time, schedule it when your lupus is not active. It’s best to wait to get pregnant until your doctor clears you for it, for the same reason.
- Avoid sunlight whenever possible. If you have to be in the sun, use a sunscreen with a high sun protection factor (like SPF 70) and wear protective clothing. Make sure your sunscreen protects against both UVA and UVB rays. Remember that halogen and fluorescent lights also give off ultraviolet light, so avoid prolonged exposure to them as well.
- Take your medications as prescribed. Never start or stop a medication without checking with your doctor first. Many medications, including some over-the-counter drugs, can trigger lupus flares. Some antibiotics in the sulfa family, for instance, increase sun sensitivity and may increase your risk for a flare. Talk to your doctor or pharmacist before taking any new medication, supplement, or herbal treatment.
- Be careful with certain foods and supplements. Avoid alfalfa sprouts, which contain a substance that may increase inflammation and trigger a flare. Some people may have a similar reaction to garlic, which is sometimes used as a health supplement. Other supplements that have been linked to lupus flares include melatonin, often used as a sleep aid, and echinacea, used to fight colds.
What Should You Do If You Sense a Lupus Flare Coming On?
Many people with lupus eventually become attuned to their body’s rhythms enough to sense when a possible flare is coming. At these times you can rest and use stress management techniques, but once actual symptoms of a flare begin, you shouldn’t try to handle it on your own. Some common flare symptoms include:
- Increased fatigue
- New or worsening rash
- Joint and muscle pain
- Headache or dizziness
- Sores or ulcers in the mouth
- Swelling in the legs
- Any new symptoms
When you think a flare is starting, it’s best to see your doctor as soon as possible.
The best way to manage lupus and avoid flares is to learn as much about your disease as you can and to follow these simple guidelines: Listen to your body, learn what your own triggers and early warning signs are, stick to your lupus treatment plan, and take good care of yourself.
Doctors prescribe more painkillers today than they ever have — writing three times as many prescriptions for opioids as they did 20 years ago, according to the Centers for Disease Control and Prevention (CDC).
Chronic pain is a significant problem affecting more than 100 million Americans, according to the National Institutes of Health (NIH). This puts doctors who treat pain in a tough spot. Opioids come with major side effects, including mental clouding, nausea, and the potential for respiratory depression, which can cause death. There is also a risk of developing a physical dependence on them.
To examine this issue, a group of panelists met in September 2014 at an NIH Pathways to Prevention workshop. They found that most studies on opioid painkillers for chronic pain were too short — some less than six weeks — and that there was evidence of increased risk for overdose and abuse.
“At the conclusion of the workshop, we called for further study of opioids in the treatment of chronic pain,” says David C. Steffens, MD, MHS, a professor and chair of psychiatry at the University of Connecticut Health Center School of Medicine who took part in the two-day workshop. “We hope those who prescribe these medications for acute pain, such as in the context of a work or sports injury, will be cautious about the number of pills they prescribe.”
Dr. Steffens and his fellow panelists also came to the conclusion that a large part of the problem is lack of knowledge on the best ways to treat pain, and a health care system that often defaults to the easiest, rather than the best solution.
Looking at the Person Behind the Pain
What do these findings mean for physicians who regularly prescribe opioid painkillers for chronic pain?
“They mean we are going to have to be much more thoughtful and creative about how we manage chronic pain,” says Gary Kaplan, DO, founder and medical director of the Kaplan Center for Integrative Medicine, and author of Total Recovery: Solving the Mystery of Chronic Pain and Depression. “We too often treat the thing and not the person.”
Dr. Kaplan also says the report shows the best use for opioid painkillers is for short-term pain, like post-surgical pain, and not chronic pain conditions.
Supporters of the findings also say the health care community needs to be more careful about which patients get prescriptions for narcotics.
“For people with addictive personalities, opioid painkillers can be very tempting,” says John Stamatos, MD, director of pain management services at Syosset Hospital in Syosset, New York. “The problem is the body gets tolerant to these medications, and patients require more and more over time. Unless we monitor patients closely, this can quickly get out of control.”
Related: 6 Cheap, Natural, and Quick Chronic Pain Remedies
But he points out that there are some patients who absolutely need opioid painkillers.
“If you have a patient who has had three back surgeries and is still miserable, what are you going to do with that patient — say, ‘Just deal with it’?” says Dr. Stamatos. “We can’t just leave these people to wait out their life with severe pain.”
To monitor his own patients, Stamatos observes how they function each day. “I look at whether patients are making it to work, exercising, taking care of their kids, and doing all the other things they need to do in their daily lives,” he says. “If they are just lying on the couch, they are clearly not using painkillers appropriately.”
A Different Approach to Pain Management
There are alternatives to opioids, including injections, muscle relaxants, or non-narcotic painkillers like non-steroidal anti-inflammatory medications (NSAIDs), Stamatos says.
“Science is also showing us that techniques such as acupuncture, meditation, and nutrition play a very important role in the management of chronic pain and are far too underutilized,” Kaplan says.
Exercise can also work wonders. “Physical activity helps strengthen the muscles around whatever is injured so you can get back to your life,” Stamatos says.
One takeaway from the NIH workshop on opioid painkillers is that doctors need to be careful, Kaplan says. “Physicians have been too quick to prescribe opioid painkillers,” he says. “We need a more thoughtful and comprehensive approach to the treatment of chronic pain.”
If you have difficulty remembering things, your mind may make the leap to Alzheimer’s disease – but that’s not the only cause of memory loss.
You can’t find your keys or you forget an appointment. For many people in middle age or older, simple acts of forgetfulness like these are scary because they raise the specter of Alzheimer’s disease.
But Alzheimer’s is not the only health issue that can lead to forgetfulness, which is often treatable if you know the cause, according to the National Institute on Aging. Memory loss can happen at any age and for a number of reasons.
“Patients might experience memory loss and describe their symptoms similarly, but a doctor can tease apart what parts of the brain are affected,” says Seth Gale, MD, a neurologist at Brigham and Women’s Hospital in Boston.
He points out things like polypharmacy (taking several medications), significant depression, and poor sleep that can lead to memory complaints. “When you drill down and find out what is actually happening with brain function, you can reassure someone. They have the capacity to learn and store information but because of their overloaded mental resources, they are having trouble,” says Dr. Gale.
Talk with your doctor about concerns you may have about your memory, so the condition responsible for your symptoms can be addressed. Discussing your symptoms and taking various tests, possibly including an MRI, may help your doctor determine what is affecting your memory, Gale says. In some cases, one or more of the following issues could play a role.
1. Sleep Apnea
This common but treatable sleep disorder causes breathing to stop briefly and frequently throughout the night. It is linked to memory loss and dementia, according to Constantine Lyketsos, MD, director of the Memory and Alzheimer’s Treatment Center at Johns Hopkins Medicine and professor and chair of psychiatry at Johns Hopkins Bayview. You might have sleep apnea if you wake up with a headache and have daytime fatigue — or if your partner complains of loud snoring.
When not treated, sleep apnea affects spatial navigational memory, found a study published in The Journal of Neuroscience. This type of memory includes being able to remember directions or where you put things like your keys. The research suggests that deep sleep, also known as rapid eye movement (REM) sleep, plays an important role in memory.
One explanation is that for people with sleep apnea, oxygen delivery to the brain is interrupted several hundred times during the night, explains Dr. Lyketsos. “The brain is stressed, so people wake up,” he says. The injury sleep apnea causes can show up as a variety of memory loss symptoms, he adds.
2. Silent Stroke
Obvious changes in the ability to think and move normally can come from strokesthat block major brain blood vessels, Gale says. Mild memory problems can also develop gradually after silent strokes that affect smaller blood vessels. These changes in brain function, which can range from mild to severe, are called vascular cognitive impairment.
The brain is especially vulnerable to blocked or reduced blood flow depriving it of oxygen and essential nutrients. People with memory loss are at greater risk for stroke. And forgetfulness may be an early warning sign of stroke, found a study published in the journal Stroke.
Memory loss could be a sign that your medication needs to be adjusted. Several types of drugs can affect memory, according to the U.S. Food and Drug Administration (FDA), including:
- sleeping pills
- anti-anxiety medications
- certain painkillers
- cholesterol-lowering medication
- diabetes medication
The FDA also cautions that cholesterol-lowering drugs known as statins could slightly increase the risk for reversible cognitive side effects. These include memory loss and confusion.
A commonly prescribed type 2 diabetes drug, metformin, has also been associated with memory problems. A study published in Diabetes Care found that people with diabetes who took the drug had worse cognitive performance than those who did not take it.
4. Nutritional Deficiency
A lack of sufficient B12, one of the B vitamins essential for normal nerve function, can lead to confusion and even dementia. Each day, you should get about 2.4 micrograms of B12 in your diet from natural sources like dairy products, meat, and fish, or from foods fortified with vitamin B12 — like fortified cereals.
Try our free online tool to plan healthy meals that will give you the vitamins you need.
5. Stress, Anxiety, and Depression
Significant stress or anxiety can lead to problems with attention and memory, cautions Lyketsos. This is particularly common among people who may be juggling home and work responsibilities and are not sleeping well. Usually, easing stress can improve memory, Lyketsos says.
Untreated chronic stress can lead to depression, which could also affect brain function, according to research published in the Journal of Pharmacy & BioAllied Sciences. A mood disorder may improve with medication and counseling, notes the National Institute on Aging.
Less Common Causes of Memory Loss
Other conditions that can lead to problems with memory include:
- Infection: Memory loss may be attributed to severe infection around the brain, including neurosyphilis, Gale says.
- Head injury: Symptoms of a mild brain injury may include confusion and trouble with memory and concentration, according to the U.S. National Institute of Neurological Disorders and Stroke.
- Tumors: Memory and the ability to process information may be affected by brain tumors, the American Brain Tumor Association says. In addition, treatments for a tumor can affect your memory, including brain surgery, chemo, or radiation therapy.
- Alcoholism, Substance Abuse: Both alcoholism and drug abuse can affect memory, says Lyketsos. A study published in Neurology found that men who drank heavily showed signs of mental decline one to six years earlier than light drinkers.
If you have depression, there is a good chance you smoke, too. Studies have shown that depression and smoking often go hand in hand. People with depression are not only more likely to smoke, but may also find it harder to quit smoking than those who are not depressed.
Researchers have long recognized that there is a link between smoking cigarettes and depression. It is still not entirely clear exactly how smoking and depression are related, but several theories may explain the link:
- Depression leads to smoking. It may be that people who are depressed turn to smoking, hoping to make themselves feel better and alleviate their depression symptoms.
- Smoking causes depression. Recent research suggests that an increased risk of depression is among the many negative effects of smoking, possibly because nicotine damages certain pathways in the brain that regulate mood. As a result, nicotine may trigger mood swings.
- A vicious cycle is at play. Other studies have suggested that smoking makes people more depressed and depression makes people turn to smoking — smoking and depression may actually perpetuate each other.
- There may be shared genetic triggers. It has also been proposed that certain genetic predispositions may increase both the risk of smoking and depression in some people.
Secondhand Smoke and Depression
People who don’t smoke, but who spend a lot of time around people who do, are at increased risk of smoking-related death and disease. This is significant, since so many people are exposed to secondhand smoke.
Now studies have shown that secondhand smoke exposure may also be linked to depression. One found that those who never smoked or smoked fewer than 100 cigarettes in their lifetime but lived with or worked around smokers were more likely to have major depression than non-smokers not exposed to secondhand smoke.
What This Means for You
If you have depression, smoking or exposure to secondhand smoke could make your symptoms worse. Likewise, if you’re a smoker, an increased risk of depression is one more reason you should try to stop smoking and avoid secondhand smoke exposure.
As most smokers know, however, quitting is easier said than done. For people already managing depression, giving up cigarettes can be even trickier, since stopping smoking can also trigger worsening symptoms of depression. Even so, these symptoms eventually pass and the health benefits of quitting clearly outweigh any downside. To get the help you need to quit smoking, don’t be afraid to tell your doctor and ask for suggestions.
Remember that it is completely natural to feel irritable and sad in the first days and weeks after you stop smoking. Also keep in mind that many smokers who have depression experience more severe nicotine withdrawal symptoms than those who don’t. But sticking with your plan and staying away from cigarettes is worth it — it will help you feel better in the long run and, ultimately, proud that you have conquered the challenging task of quitting smoking.
Most people feel better within a month after they stop smoking. If your feelings of sadness and depression are overwhelming or if your depression continues for more than a month, be sure to talk to your doctor.
The chronic pain and fatigue associated with lupus can affect more than your health; many patients find that their condition interferes with their sexual relationships, as well.
Reasons for that include lupus flare-ups, pain, fatigue, side effects from medication, and self-image issues. And that’s on top of the day-to-day responsibilities that come with having a chronic illness, as well as the routine tasks of life.
But don’t give up on your sex life. There are things you can do to make it more satisfying and keep that part of your relationship alive.
For many people with lupus, fatigue is the biggest roadblock to a healthy sexual relationship.
More than one-third of lupus patients have reported a decrease in desire for sexual intimacy, according to recent research conducted by Meenakshi Jolly, MD, medical adviser to the Lupus Foundation of America and director of the Rush Lupus Clinic at Rush University Medical Center in Chicago.
Nearly half of the women in Jolly’s study avoided sex because of lupus-related flares and up to 40% felt that their relationships were negatively affected by their disease.
“Patients with more active disease had more decline in their sexual drive,” Jolly says.
“It’s not like the desire isn’t there, but the energy isn’t. They want to do it, but physically, they can’t bring themselves to,” says social worker Jillian Rose, program manager of the Lupus Line/Charla de Lupus (Lupus Chat) programs at the Hospital for Special Surgery in New York.
Of course, many people with lupus are also dealing with the same responsibilities as people who don’t have chronic condition. And that can put their sex life on the back burner.
“Most fatigued women with lupus try to figure out how they’ll do everything they need to do – especially if they have children – and sex goes to the bottom of the list,” says licensed marriage and family therapist René Jones of Amherst, N.Y., who counsels many lupus patients and their partners.
Pain, Dryness, and Sensitivity
Lupus-related pain and sensitivity can be an issue in the bedroom. For instance, having sex in the missionary position gives some women with lupus hip pain. Others have vaginal dryness or very sensitive skin.
“If sex is painful from joint pain or dryness, it can feel more like a chore rather than a gift,” Jones says.
If that’s the case, it’s time to get creative. “Redefine what sex looks like for you as a couple,” Rose says. “Some women tell me they take two Tylenol half an hour before sex, or they have intercourse in the tub or on their sides. When they’re having a flare and can’t stand penetration, they can do more foreplay or oral sex.”
For specific logistical problems, there are often simple fixes, Jolly says. “If it’s hip pain,” she says, “different positions can help, like having the woman on top or side by side.”
Water-based lubricants can help with vaginal dryness and sensitivity.
“Some lupus patients are very sensitive; the skin rips easily, and they get very irritated,” Rose says. “Water-based lubricants help with friction and vaginal dryness, and they work with condoms.”
Being in touch with your body can help you figure out when the moment is right, says Marisa Zeppieri-Caruana of Fort Lauderdale, Fla., a lupus patient who serves on the board of the Lupus Foundation of America’s Southeast chapter.
“By the late afternoon, I need a nap due to exhaustion and fever, but afterward, I usually feel my best,” she says. “I try to schedule intimacy or sex then, when I have the most energy and feel refreshed. If actual sex isn’t in the cards due to a flare-up, sometimes my husband and I take a bubble bath. Massages can also be very intimate, and they’ve helped soothe my muscle and joint pain.”
Extra foreplay works wonders for many lupus patients.
“In general, women need foreplay in order to lubricate, so with lupus they may need a bit more,” Jones says. “I also recommend masturbation. Having an orgasm may reduce stress, pain, and fatigue, and it reminds women that sex can be fun and pleasurable.”
Drug Side Effects
Steroids can cause unwanted weight gain. Antidepressants can sometimes reduce your libido. Other medications may cause different problems, including vaginal dryness or a tendency toward yeast infections.
If troublesome side effects are affecting your ability to become intimate, tell your doctor at your next appointment.
“Reviewing your medication list with your physician or a pharmacist may help,” Jolly says. “They can print out a list of possible side effects, and in some cases, trying a different medication could be an answer.”
Some women with lupus may feel reluctant to have sex because they’re unhappy with their birth control options, since it’s commonly believed that all lupus patients should avoid birth control pills. But that may not be not necessary for every woman with lupus.
“A lot of lupus patients and doctors feel that birth control pills can’t be used by lupus patients, but it’s a subset of patients who have had blood clots,” Jolly says. “Talk to your doctor and ask if birth control pills with low estrogen or without estrogen are OK. Some patients get progesterone injections every three months. There are also IUDs that people can use.”
Some people with lupus develop a negative self-image because of disease-related weight gain or rashes, which make them feel less attractive.
“I have an extremely negative body image because I gained 70 pounds due to prednisone use for lupus, but my husband tells me he loves me just as I am and finds me sexy,” says Laurie Cook of Jamaica, N.Y. “We make love three or four times a week, and although I’m in pain a lot, we’re careful to keep our physical love alive and recognize the importance of this fine part of life.”
Telling your partner how lupus has changed your self-image may help. Sometimes, it may be as simple as speaking up for your own needs.
Many lupus patients, for example, need ample sleep to function properly, but getting enough rest can interfere with quality time or intimate moments together.
“Finding a man who lives a similar lifestyle and who accepts you and your lupus is the best way to have a happy relationship,” says lupus patient Gia Ricci of New York. “The happiest relationship I had was with a man who happened to need a lot of sleep and who respected my needs.”
Men With Lupus
Lupus is more common in women than in men. But men with lupus can experience many of the same sexual setbacks as women with lupus.
“Male lupus patients may also experience fatigue, pain in general, and pain in joints with sex, all of which may be associated with decreased libido,” Jolly says.
In addition, “some blood pressure medications may have an effect on erections in male lupus patients,” Jolly says.
“Some lupus medications can affect libido and cause erectile dysfunction; however, the major issues are pain and fatigue. They often find sex more of a task and feel very uncomfortable discussing this with their partners,” Rose says.
“For men with lupus, there’s a tremendous amount of shame around issues of sex and intimacy… the discomfort of admitting challenges in an area that they are traditionally expected to dominate,” Rose says. “I usually coach them [about] opening the lines of communication with their partners and helping them to find strategies to cope more effectively, like having sex at times of day when their pain is lowest, trying different positions to reduce pain, and different ways of being intimate other than intercourse, such as cuddling, massages, oral sex, and various body stimulations that they may derive a sense of pleasure from.”
Jolly recommends that men with lupus learn about their disease, and medication side effects. “They should be encouraged to discuss their sexual health with their doctors, so they can be counseled and referred for appropriate care,” Jolly says.
Talk About It
Does it seem like your partner is reluctant to initiate sex out of fear of hurting you? Are you reluctant to have intercourse because it’s painful? If lupus has changed the way you interact in the bedroom, it’s important to talk to your partner as soon as possible.
“The first thing I recommend is a conversation over dinner or a glass of wine, not in the bedroom,” Rose says. “Don’t wait until the resentment builds up; talk about the changes now. If you haven’t had sex in months because it’s painful, problem-solve to come up with things other than penetration to overcome the anxiety you feel about sex.”
Tell your doctor, too, if lupus is curbing your sex life.
“People with lupus can have a normal life, but you may have to bring it up with your doctor,” Jolly says. “We only get 20 minutes to see a patient, and physicians don’t think of sexual problems as routine; we think of blood pressure and obvious symptoms. But there are several things that can be done to improve sexual health, so don’t be embarrassed to ask for help.”
Meeting with a therapist – either alone or with your partner – may also help.
“A therapist should help the couple understand each other and work as a team,” Jones says. “There should be a discussion about what each person is losing because of the lupus and how they can comfort each other and rewrite their lives together. Maybe the way they make love changes. Maybe there’s more foreplay or masturbation. But making the decision together can be a bonding experience that should help them feel closer and want to share that closeness physically.”
If you have lactose intolerance, it means that your body has trouble breaking down lactose, the natural sugar in milk. You may be able to tolerate some dairy products, but you will also want to stick to a safe lactose intolerance diet. “Avoidance is the best treatment for lactose intolerance, but you need to be sure to get enough calcium in your diet,” says Amy E. Barto, MD, a gastroenterologist at the Lahey Clinic in Burlington, Mass. “You can do this by supplementing your diet with the right food choices.” Find out about the smart — and delicious — food swaps you can make that will help you avoid lactose intolerance symptoms like gas, bloating, and diarrhea.
Drink Milk Without the Lactose
If you like cow’s milk splashed in your cereal or served along with a plate of cookies, you can still include it in your lactose intolerance diet by buying milk that has lactase added to it. Lactase is the enzyme that breaks down the sugar in milk — the enzyme that you don’t make enough of if you have lactose intolerance. Lactase-added milk and milk products are available in most supermarkets. This type of food for lactose intolerance has all the nutrition of regular milk, but it may taste a little sweeter.
Try Soy Milk
The National Academy of Sciences recommends that both men and women 19 to 50 years old should get about 1,000 mg of calcium every day. That translates to about three glasses of milk a day. Since milk and other dairy products account for the majority of calcium in the typical American diet, what can you do if you have lactose intolerance? One option is soy milk fortified with calcium, which may have up to 500 mg of calcium in a serving. However, if your child has a milk allergy — which is different from lactose intolerance — he or she may also be allergic to soy milk. Avoid using soy milk as a substitute for anyone with a milk allergy.
Explore Other Kinds of Milk
Drinking goat, sheep, or buffalo milk will not help your symptoms because all milk from mammals contains lactose. There are, however, milks for a lactose intolerance diet if you don’t like soy milk and still enjoy milk in your morning cereal or coffee. These dairy-free foods typically don’t have natural calcium, but they do have lots of vitamins and antioxidants. Almond milk is loaded with magnesium and vitamin E. Rice milk has almost no saturated fat and plenty of vitamin B12. Coconut milk tastes creamy like cow’s milk, but one drawback is that it has a lot of saturated fat. Other vegetable milks include oat, hemp, and cashew. However, these alternatives to cow’s milk don’t work well as substitutes for cooking, such as in soups or desserts that call for dairy.
Eat Yogurt for Less Lactose
If you have lactose intolerance, the Dietary Guidelines for Americans recommends that you choose dairy products with less lactose, such as yogurt with active bacterial cultures. “Yogurt may cause less bloating because much of the lactose has already been broken down by its ‘good’ bacteria,” explains Dr. Barto. However, frozen yogurt does not have active cultures, so it may not fit into your lactose intolerance diet.
Fermented cheeses have less lactose than other dairy products, and you may be able to tolerate them in small amounts. They are worth including in your lactose intolerance diet because they are good sources of calcium and protein. Examples of hard or aged cheeses that are low in lactose are Swiss, Parmesan, and blue cheeses. These cheeses typically have less than 2 grams of lactose per ounce, compared with 11 grams in a cup of milk. Try simple cheese and crackers for a boost of calcium, or make these easyRoast Beef and Blue Cheese Spears for an elegant appetizer.
Substitute Sherbet for Ice Cream
If you crave ice cream for dessert, you might be able to substitute sherbet in your lactose intolerance diet. Sherbet does contain some dairy, but it’s a low-lactose food — one cup has about 4 to 6 grams of lactose, about the same amount as a cup of yogurt and half as much as a cup of ice cream. Sherbet is a good example of a hidden source of lactose because you probably don’t think of it as a dairy product. “Other hidden sources of lactose include soups, salad dressings, and processed breakfast foods,” says Barto. Be sure not to include too many of these foods in your diet on a given day, since doing so may bring on lactose intolerance symptoms. If you’re looking for a frozen dessert without any lactose, choose ices or sorbet, which are dairy-free foods.
Increase Dairy-Free Foods With Calcium
“If your lactose intolerance is severe and you need to avoid all dairy foods, you can get plenty of calcium from leafy green vegetables,” suggests Barto. Vegetables high in calcium include rhubarb, spinach, broccoli, and certain greens like kale. For example, one cup of cooked spinach has about 250 mg of calcium. Other foods for a lactose intolerance diet include pinto beans and calcium-fortified orange juice.
Go Fishing for Calcium-Rich Foods
“It’s important to remember that lactose intolerance increases with age,” says Barto. Unfortunately, you also need more calcium as you get older. The recommended daily intake of calcium for people over age 50 is 1,200 mg — which is more calcium than is recommended for a younger adult (1,000 mg). If you’re in this age group and have trouble tolerating dairy, you should take extra care to eat calcium-rich foods without dairy. One way is by eating plenty of seafood. Small fish with soft bones like sardines are especially high in calcium. For example, 3 ounces of sardines with bones serve up more than 300 mg. Other high-calcium fish to include in a lactose intolerance diet are salmon and tuna.
I am writing a series of blogs to help educate others and bring awareness to traumatic brain injuries (TBI).
1. Our brains no longer work the same.
We have cognitive deficiencies that don’t make sense, even to us. Some of us struggle to find the right word, while others can’t remember what they ate for breakfast. People who don’t understand, including some close to us, get annoyed with us and think we’re being “flaky” or not paying attention. Which couldn’t be further from the truth, we have to try even harder to pay attention to things because we know we have deficiencies.
Martha Gibbs from Richmond, VA, suffered a TBI in May of 2013 after the car she was a passenger in hit a tree at 50 mph. She sums up her “new brain” with these words:
Almost 2 years post-accident, I still suffer short-term memory loss and language/speech problems. I have learned to write everything down immediately or else it is more than likely that information is gone and cannot be retrieved. My brain sometimes does not allow my mouth to speak the words that I am trying to get out.
2. We suffer a great deal of fatigue.
We may seem “lazy” to those who don’t understand, but the reality is that our brains need a LOT more sleep than normal, healthy brains. We also have crazy sleep patterns, sometimes sleeping only three hours each night (those hours between 1 and 5 a.m. are very lonely when you’re wide awake) and at other times sleeping up to 14 hours each night (these nights are usually after exerting a lot of physical or mental energy).
Every single thing we do, whether physical or mental, takes a toll on our brain. The more we use it, the more it needs to rest. If we go out to a crowded restaurant with a lot of noise and stimulation, we may simply get overloaded and need to go home and rest. Even reading or watching tv causes our brains to fatigue.
Toni P from Alexandria, VA, has sustained multiple TBI’s from three auto accidents, her most recent one being in 2014. She sums up fatigue perfectly:
I love doing things others do, however my body does not appreciate the strain and causes me to ‘pay the price,’ which is something that others don’t see. I like to describe that my cognitive/physical energy is like a change jar. Everything I do costs a little something out of the jar. If I keep taking money out of the jar, without depositing anything back into the jar, eventually I run out of energy. I just don’t know when this will happen. Sometimes it’s from an activity that seemed very simple, but was more work then I intended. For me, like others with TBIs, I’m not always aware of it until after I’ve done too much.
3. We live with fear and anxiety.
Many of us live in a constant state of fear of hurting ourselves again. For myself personally, I have a fear of falling on the ice, and of hitting my head in general. I know I suffered a really hard blow to my head, and I am not sure exactly how much it can endure if I were to injure it again. I am deeply afraid that if it were to take another blow, I may not recover (ie, death) or I may find myself completely disabled. I am fortunate to have a great understanding of the Law of Attraction and am trying my hardest to change my fears into postive thoughts with the help of a therapist.
Others have a daily struggle of even trying to get out of bed in the morning. They are terrified of what might happen next to them. These are legitimate fears that many TBI survivors live with. For many, it manifests into anxiety. Some have such profound anxiety that they can hardly leave their home.
Jason Donarski-Wichlacz from Duluth, MN, received a TBI in December of 2014 after being kicked in the head by a patient in a behavioral health facility. He speaks of his struggles with anxiety:
I never had anxiety before, but now I have panic attacks everyday. Sometimes about my future and will I get better, will my wife leave me, am I still a good father. Other times it is because matching socks is overwhelming or someone ate the last peanut butter cup.
I startle and jump at almost everything. I can send my wife a text when she is in the room. I just sent the text, I know her phone is going to chime… Still I jump every time it chimes.
Grocery stores are terrifying. All the colors, the stimulation, and words everywhere. I get overwhelmed and can’t remember where anything is or what I came for.
4. We deal with chronic pain.
Many of us sustained multiple injuries in our accidents. Once the broken bones are healed, and the bruises and scars have faded, we still deal with a lot of chronic pain. For myself, I suffered a considerable amount of neck and chest damage. This pain is sometimes so bad that I am not able to get comfortable in bed to fall asleep. Others have constant migraines from hitting their head. For most of us, a change in weather wreaks all sort of havoc on our bodies.
Lynnika Butler, of Eureka, CA, fell on to concrete while having a seizure in 2011, fracturing her skull and resulting in a TBI. She speaks about her chronic migraine headaches (which are all too common for TBI survivors)
I never had migraines until I sustained a head injury. Now I have one, or sometimes a cluster of two or three, every few weeks. They also crop up when I am stressed or sleep deprived. Sometimes medication works like magic, but other times I have to wait out the pain. When the migraine is over, I am usually exhausted and spacey for a day or two.
5. We often feel isolated and alone.
Because of all the issues I stated above, we sometimes have a hard time leaving the house. Recently I attended a get together of friends at a restaurant. There were TVs all over the room, all on different channels. The lights were dim and there was a lot of buzz from all of the talking. I had a very hard time concentrating on what anyone at our table was saying, and the constantly changing lights on the TVs were just too much for me to bear. It was sensory stimulation overload. I lasted about two hours before I had to go home and collapse into bed. My friends don’t see that part. They don’t understand what it’s like. This is what causes many of us to feel so isolated and alone. The “invisible” aspect of what we deal with on a daily basis is a lonely struggle.
Kirsten Selberg from San Francisco, CA, fell while ice skating just over a year ago and sustained a TBI. She speaks to the feelings of depression and isolation so perfectly:
Even though my TBI was a ‘mild’ one, I found myself dealing with a depression that was two-fold. I was not only depressed because of my new mental and physical limitations, but also because many of my symptoms forced me to spend long periods of time self-isolating from the things — like social interactions — that would trigger problems for me. With TBI it is very easy to get mentally and emotionally turned inward, which is a very lonely place to be.
You cannot stop a seizure, but you can help the patient prevent serious injury.
Remain calm, and do not panic, then take the following actions:
- Wipe away any excess saliva to prevent obstruction of the airway. Do not put anything in the patient’s mouth. It is not true that people having seizures will swallow their tongues.
- Turn the patient gently on the side. Do not try to hold the patient down to prevent shaking.
- Rest the patient’s head on something flat and soft to protect it from banging on the floor and to support the neck.
- Move sharp objects out of the way to prevent injury.
Do not leave the patient alone. Someone nearby should call 911. Patients should be taken to an emergency room when:
- A first-time seizure occurs
- Any seizure lasts beyond 2 – 3 minutes
- The patient has been injured
- The patient is pregnant
- The patient has diabetes
- Parents, caregivers, or bystanders are at all uncertain
Not all patients with chronic epilepsy need to go to the hospital after a seizure. Hospitalization may not be necessary for patients whose seizures are not severe or repetitive, and who have no risk factors for complications. All patients or caregivers, however, should contact their doctors after a seizure occurs.