Health
Advice for Managing Everyday Challenges of Crohn’s
Crohn’s disease can be unpredictable. But you can still thrive while you handle your condition. The key is to take charge of the details. That will really help you deal with flares and symptoms that are out of your control.
A flare, or “flare-up,” means the reappearance of symptoms. Symptoms of Crohn’s vary more widely than many other diseases, but with your doctor and past experience as your guides, you should be able to make a list of things to look for. Some more common symptoms include:
- Use acetaminophen (Tylenol) to manage pain (especially if you notice problems with NSAIDs).
- Use over-the-counter meds (Imodium, Pepto-Bismol) to manage your diarrhea (But always check with your doctor before you start).
- Use a moist towelette/wipe instead of bathroom tissue to lessen irritation after you go to the bathroom.
- If possible, use a hand sprayer in the shower or use a special “perianal” cleaner designed for the delicate skin of your anus.
- Use an all-purpose skin cream (Vitamin A&D ointment, Desitin) at night to lessen itchy skin around the anus.
- Bathe in warm saltwater or use a sitz bath to relieve pain from an anal fissure or fistula.
- Use over-the-counter mouth rinses to help with mouth ulcers or canker sores.
- Rest sore joints or use moist heat. Ask your doc about range-of-motion exercises.
Call your doctor as soon as you notice symptoms of a flare-up. They will likely want to test to see if your flare is from inflammation in the intestines or something else like scar tissue, infection, or problems with medication.
Plus, the quicker you check in, the more likely you’ll be to figure out just what triggered the flare. This could help you and your doctor treat your symptoms before they get out of hand and possibly prevent future flares.
It’s not always clear what causes a Crohn’s flare, but there are some common factors that seem to trigger or worsen symptoms:
- Missed Crohn’s medication
- Wrong dose of Crohn’s medication
- Smoking
- Stress
- Use of nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen (Advil, Motrin, Nuprin), or naproxen (Aleve)
- Antibiotics
- Diet (see below)
Because Crohn’s involves your digestive system, the foods you choose can have a big impact on your well-being. Still, you shouldn’t let fear of eating the wrong thing paralyze you, says Colleen Webb, a registered dietitian nutritionist. She’s also a clinical nutritionist at Weill Cornell Medicine.
Rather than focusing on individual foods, think big picture. “If most of your foods are whole foods — instead of foods from packages with lots of ingredients — then usually you don’t have to worry as much about everything else,” Webb says. “If 75% of the time you’re sticking to a nice anti-inflammatory diet, then that’s one of the best things you can do for yourself.”
Vern Laine, of Surrey, British Columbia, has had Crohn’s disease for more than 30 years. His advice to the newly diagnosed? Track what happens in the toilet after your meals.
“Keep a diary of what you eat throughout the day and record the results — type of bowel movement (watery, thick, blood), level of pain, et cetera,” he says. “From this, you’ll discover what you can tolerate.” Be sure to have a dietitian and nutritionist on board. Then you’ll have expert advice as you develop your diet.
Specific guidelines to keep in mind before you munch include:
Be fiber smart. Roughage doesn’t play nice with Crohn’s. But don’t abandon fiber. “If people are told ‘no fiber,’ then typically they steer clear of all fruits, vegetables, nuts, and seeds. And then what does that leave them with? A highly processed-foods diet, which is not going to get anybody feeling better,” Webb says. Make your fiber belly-friendly by blending, cooking, and peeling fruits and veggies before eating them.
Hydrate. Everyone’s bodies work better when they get enough water. But when you have Crohn’s, your bathroom habits mean you’re typically losing more fluids than the average person. Staying hydrated is a must. “Hydration is absolutely necessary to make sure that everything moves through the way that it should,” Webb says. Her rule of thumb: Take your weight in pounds and divide by two. That’s how many ounces of water Webb advises you should try to have every day.
Be careful when eating out. The best way to head off food-related symptoms is to cook your own food rather than risking it with a restaurant’s fare. But if and when you do dine out:
- Call ahead. Don’t wait until you’re seated at the table to crack open a menu for the first time. Most places post their menus online, or you can call before you go and ask about their dishes.
- Order last. If the thought of being in the spotlight at the table makes you anxious, let everyone else order their food first. “Your family and friends can go back to their conversation and you can just have the waiter’s ear,” Webb says. Going last also means your server is more likely to remember any special requests.
- Play it safe. Laine says menus in restaurants tend to have more on them that you can’t eat than what you can. “Stick to what you know, even if it’s just an appetizer,” he says. Usually even the trendiest restaurants will have basics you can fall back on like a baked potato or sweet potato. But if they don’t, go for the choice that plays nice with a Crohn’s digestive system. “Choose simple bland foods that are roasted, steamed, or baked — not fried — and ask for sauces on the side,” Webb says.
You may not know when symptoms will strike, but you can arm yourself with tools for success in any situation, including when you’re at work or away from home.
Find a facility. If bathroom access when you’re out and about makes you anxious, ask your doctor about registering for a “restroom card” to carry in your wallet.
“It lets you get into any disabled restroom that’s available,” Carol Leslie says. She’s an occupational therapist and certified wellness coach who works specifically with people dealing with gastrointestinal disorders.
Take advantage of technology, too. Smartphone apps like Where to Wee, Flushd, and Bathroom Scout can help you find a bathroom wherever you are.
Bring it up with your boss. Sit down with your supervisor after your diagnosis to talk about how Crohn’s may affect you in the workplace. “If they’re amenable, that’s great, but if they’re not, be sure you know your rights,” Leslie says.
Crohn’s falls under the Americans with Disabilities Act. This means you’re legally protected from penalty if you need to ask for accommodations like frequent trips to the bathroom.
Be travel savvy. Carry along any supplies you might need like extra clothes or wipes when you’ll be away from home for a while. “Road travel is easier than flying because there are places you can stop to use the washroom. But even then, I restrict my food intake,” Laine says. If he does eat or drink, Laine says he sticks with peanut butter and water.
Good Crohn’s management includes treating the disease — with medication and the right foods — and taking care of your overall wellness, including your emotional health. “When you’re panicked or highly anxious, you produce a ton of adrenaline and cortisol, and so the gut gets triggered,” Leslie says.
Keeping stress levels low helps your immune system work better and keeps bowel symptoms at bay. Ways you can do that include:
Pace yourself. It can be tempting to go into overdrive to make up for work or time lost during a flare, but that can set you up for a stress cycle, Leslie says. “As an OT, I talk a lot about energy conservation with people — how to pace activities, simplify your work, and get jobs done with less energy.” Ask for help from loved ones, or find an occupational therapist who can show you how to avoid the “all-or-nothing” mentality.
Do things you love. Love crocheting? Bowling? Coffee with friends? Prioritize them. “Your passions are not something you get to after everything else is attended to,” Leslie says. “They’re part of your management plan.”
Seek out support. The Crohn’s & Colitis Foundation can point you in the direction of a support group in your area where you can connect with others who have Crohn’s. If one-on-one is more your style, partner with someone who will hold you accountable and give you encouragement when you need it. “Pull in a buddy you can check in with, almost like a mentor,” Leslie say. “Tell them what you eat, how much water you’re drinking, what exercising you’re doing so you can get an ‘atta boy’ or ‘atta girl’ from a friend.”
Claim your Crohn’s. It’s inevitable — your condition will likely come up in conversation when you’re not expecting it. Have a script ready when it does, Leslie says. “Train people how to respond to you,” she says. Be matter-of-fact, assertive, and calm. Above all, don’t apologize. “That sends a message that you’re a problem, and you’re definitely not a problem — you’re human.”
May 10, 2024 – When we’re young, we take our macula for granted. At the center of our retina – the deepest layer of the eye that’s chock-full of photoreceptors and that confers color to our world – the macula is like a high-resolution camera. As light hits our eyes, the retina’s macula recasts our world in a bloom of color with astoundingly high visual sharpness.
But as you age, your vision dulls. What once stood out sharply becomes foggy, like condensation on a windowpane. After some time, a coal-black smudge or cloudy circular area begins to affect your central vision.
This effective blind spot widens over time if left untreated. What remains is a “macular hole” in the center of your retina.
This unfortunate series of events marks the advanced stage of age-related macular degeneration, a dangerous retinal disease that affects about 20 million people in the U.S., and nearly 200 million people worldwide.
And it’s not getting better. Estimates are that by 2040, the disease may affect nearly 300 million people worldwide. We are very limited in our ability to treat or prevent it. Read on for what to know.
First, What Causes Age-Related Macular Degeneration?
AMD’s causes are varied, and whether it will affect you is mostly determined by age and genetics, said Marco Alejandro Gonzalez, MD, an ophthalmologist and vitreoretinal specialist in Delray Beach, FL.
Because of the different cocktails that we have in terms of our genetic makeup, some people’s photoreceptor cells in the macula “basically start to shut down,” he said.
AMD’s development involves over 30 genes, and if you have a first-degree relative – parent, sibling, child – who has the disease, you’re three times more likely to get it, too.
Gonzalez explained how the expected rise to 300 million cases by 2040 is due mostly to improved diagnostic tools, along with the fact that the world is getting older and living longer. (Usually, an optometrist can detect signs of AMD during a routine eye exam.)
Eye experts still struggle to stop AMD’s most harmful sign – the cause of those muddy, milky, or even coal-colored circles in your central vision: geographic atrophy.
Geographic atrophy can occur in either of the two forms of age-related AMD: “dry” AMD and “wet” AMD.
Nearly every case of AMD begins as the dry kind, affecting 80% to 90% of AMD patients.
Retinal disease expert Tiarnán Keenan, MD, PhD, offered a vivid image of geographic atrophy for those who have dry AMD.
“As time passes, the circular patches of GA expand like a brushfire, taking more and more vision with it, often to the point of legal blindness,” he said.
A researcher in the Division of Epidemiology and Clinical Applications at the National Eye Institute, Keenan recently led a study that tested the efficacy of the antibiotic minocycline in slowing geographic atrophy expansion in dry AMD. The study operated on the grounds that the body’s immune system could be at play in developing the disease.
When your body’s immune system is overactive, microglial cells (central nervous system immune cells) can get into the sub-retinal space and possibly eat away at the macula and its sensitive photoreceptors.
Though minocycline had been shown to reduce inflammation and microglial activity in the eye in diabetic retinopathy, it didn’t slow the expansion of geographic atrophy or vision loss in patients with dry AMD during Keenan’s study.
When asked if microglial activity could have very little to do with the atrophy expansion, Keenan said it’s something to consider: “Maybe microglia are just there as bystanders clearing up the debris … so inhibiting them is less likely to slow down progression.”
In future drug trials, “maybe it’s possible the minocycline or another approach to target microglia would be helpful, but it would be needed in combination with some other therapy and be ineffective by itself,” he said.
Two Sides of the Same Disease
In dry AMD, Gonzalez compares macular degeneration to the loss of pixels on a screen. “Some of those pixels burn out … and that’s the way you lose vision classically in the dry form.”
Wet AMD is a more progressive form of the disease. It causes abrupt vision loss due to abnormal blood vessel growth.
“If you don’t treat wet AMD quickly, it’s game over,” warned Gonzalez. “Wet macular degeneration is the quicker process of vision loss because these blood vessels wreak havoc.” These new blood vessels bleed, causing fluid to build in the macula, which ultimately leads to scarring.
Gonzalez shed light on why wet AMD develops. “The wet form, for some reason, is the body’s last-ditch effort to try to kind of ‘help’ a dying macula. … When these blood vessels start to grow under the retina, they quickly destroy the architecture of the macula.”
Stopping the Bleeding in Wet AMD
Though wet AMD is rarer, it’s more treatable than dry AMD. Signs and symptoms can be eased with various therapies injected into the eye.
Putting it simply, Gonzalez said these therapies to treat wet AMD “all basically do the same thing. They make these new blood vessels regress temporarily before they cause damage to the macula.”
The injected medication clears away those blood vessels and restores the architecture of the macula. People can recover some vision in this way, but it’s only a temporary tune-up, and shots must be given as often as once a month.
“Degeneration of the cells is still the main problem. You’re not stopping that. But degeneration itself is a lot slower than actual vision loss associated with these blood vessels.”
The Struggle in Developing New Treatments
According to Keenan, “nobody has been able to stop geographic atrophy from happening” in either form of AMD. “So, that’s the main work in the field with trials.”
In December 2023, the FDA approved two new drugs: Syfovre and Izervay, both of which only slow geographic atrophy. Degeneration still happens, regardless.
Keenan explained how these two new drugs are “complement inhibitors … given by injection into the eye once a month or so.”
“Complement” refers to the body’s complement pathway, a trigger that activates a cascade of proteins in enhancing immune response.
Clinical trials showed Syfovre slowing the rate of geographic atrophy by up to 22% over 2 years, and Izervay up to 14% over 1 year.
Though these drugs are a new weapon against this troublesome affliction, they aren’t without their complications.
“Anytime you give an injection in the eye, there’s always the risk of an infection because you’re introducing something from the outside. So that’s the biggest risk,” explained Gonzalez.
An infection is uncommon, but potentially devastating, as you can lose your eye altogether. There’s also the chance of a damaging reaction to the shot.
“You have to pick and choose your patients,” said Gonzalez. “Not everybody is a good candidate for those new shots … and the patient is never going to see better. … It’s a harder sell than the ones for wet AMD.”
A Common Protective Measure
Keenan and Gonzalez both have a fair degree of confidence in reducing the risk of AMD with vitamin therapy.
As a bit of background on how vitamins were found to act as a sort of preventive measure, Gonzalez said, “In the early and late ‘90s, there were series of studies which were called the age-related eye disease studies.” These are now referred to as AREDS 1 and AREDS 2.
Researchers proved that a certain cocktail of vitamins slowed down degeneration. The most is a combo of antioxidants: vitamins C and E and lutein and zeaxanthin, all of which are in the AREDS 2 formula.
People who took these vitamins had a lower chance of losing their vision over the next 2 to 5 years. “[The combo] seems to be complementary and additive … with a combined treatment effect of 55% to 60%, an excellent safety record, and very low cost,” Keenan said.
Gonzalez recommends the AREDS 2 formula of vitamins to every patient of his. “It’s such an easy thing to take, and the downside is minimal.”
Unfortunately, if your genes make you more likely to have the condition, a change in diet or vitamin use could have no effect.
Dire? Possibly. But not all is lost in this fight.
Vigilance with AMD and What to Do Next if You’re Diagnosed
Gonzalez is adamant in educating his patients before time has run out on treating AMD. Recognition is key. “The most common reason a lot of these people get to me ‘too late’ is they don’t realize there’s a problem.”
He explained a typical scenario: “Let’s say you have macular degeneration in both eyes at different stages. One of your eyes starts developing wet macular degeneration … so the better eye takes over and you may not notice there’s a problem.”
Even after a patient is diagnosed with AMD, they usually see a specialist only twice a year. Gonzalez often tells his patients to cover one of their eyes to make sure their vision is intact in both eyes. “You’ll be able to pick up on subtle differences” in each eye, he said.
This type of self-care and vigilance can be the difference between successfully living with and treating the disease for the rest of your life, and trying to get help when it’s simply too late.
For wet AMD, as mentioned before, a round of injections is basically what everyone does. Without quick, invasive treatment, the point of no return approaches rapidly.
May 16, 2024 – Multiple U.S. agencies are working to contain the recent bird flu outbreak among cattle to prevent further spread to humans (beyond one case reported in early April) and use what we learned before, during, and after the COVID-19 pandemic to keep farm workers and the general public safe.
Fingers crossed, the bird flu will be contained and peter out. Or the outbreak could continue to spread among dairy cattle and other animals, threatening the health and livelihoods of farmers and others who work with livestock.
Or the virus could change in a way that makes it easier to infect and spread among people. If this happens, the worst-case scenario could be a new influenza pandemic.
With so many unknowns, WebMD brought together experts from four federal agencies to talk prevention, monitoring, and what the “what ifs” of bird flu might look like.
Communication with the public “about what we know, what we don’t know, and ways you and your family can stay safe is a priority for us at CDC,” said Nirav D. Shah, MD, JD, the CDC’s principal deputy director. “We at the federal level are responding, and we want the public to be following along.”
People should consult the websites for the CDC, FDA, U.S. Department of Agriculture (USDA), and the Administration for Strategic Preparedness and Response (ASPR) for updates.
It is essential to not only stay informed, but to seek trusted sources of information, Shah said during “Bird Flu 2024 – What You Need to Know,” an online briefing jointly sponsored by the CDC and WebMD.
An ‘Experimental Hamburger’
If one take-home message emerged from the event, it was that the threat to the general public remains low.
The retail milk supply is safe, although consuming raw or unpasteurized milk is not recommended. “While commercial milk supply is safe, we strongly advise against drinking raw milk,” said Donald A. Prater, DVM, acting director for the FDA’s Center for Food Safety and Applied Nutrition.
As for other foods, thoroughly cooked eggs are less risky than raw eggs, and the nation’s beef supply remains free of the virus as well.
For years, federal inspectors have purchased and tested meat at retail stores, said Eric Deeble, DVM, USDA deputy assistant secretary for the Office of Congressional Relations. So far, H5N1, the virus behind bird flu, has not been detected in beef.
The USDA took testing a step further and recently cooked ground beef from dairy cows in their lab. Using what Deeble described as an “experimental hamburger,” the agency showed cooking beef to 165 F or higher kills the virus if it ever becomes necessary.
The federal government now requires all cattle be tested and be free of bird flu virus before crossing any state lines. The government is also reimbursing farmers for veterinary care and loss of business related to the outbreak, and supply personal protective equipment (PPE) like gloves, masks, and face shields to workers.
Vaccination Not Recommended Now
Federal scientists know enough about H5N1 virus to create vaccines against it quickly if the need arises. It’s more about planning ahead at this point. “Vaccines are not part of our response right now,” said David Boucher, PhD, director of infectious diseases preparedness and response at the Administration for Strategic Preparedness and Response.
If the virus changes and becomes a bigger threat to people, “we have the building blocks to produce a vaccine,” Boucher added.
An event attendee asked if the seasonal flu shot offers any protection. “Unfortunately, the flu shot you got last year does not provide great protection from the avian flu,” Shah responded. “It might do a little bit … but that is the vaccine for seasonal flu. This is something more novel.”
Treatments Stockpiled and Ready
Antiviral medications, which if given early in the course of bird flu infection could shorten the severity or duration of illness, are available now, Shah said. The dairy farmer who was infected with bird flu earlier this year responded to oseltamivir (Tamiflu) treatment, for example.
When it comes to bird flu symptoms, the fact that the only infected person reported so far this year developed pink eye, also known as conjunctivitis, is interesting, Shah said. Officials would have expected to see more typical seasonal flu symptoms, he added.
“Influenza is not a new virus,” Boucher said. “With this strain of influenza, we are not seeing any genetic markers associated with resistance to antivirals. That means the antivirals we take for seasonal influenza would also be available if needed to treat H5N1.”
ASPR has stockpiled Tamiflu and three other antivirals. “We do have tens of millions of courses that can be distributed around the country if we need them,” he added.
“Influenza is an enemy we know well,” Boucher said. That is why “we have antivirals ready to go now and many types of PPE.”
Science in Action
The feds intend to stay on the case. They will continue to monitor emergency department visits, lab test orders, and wastewater samples for any changes suggesting a human pandemic risk is growing.
“While we’ve learned a great deal, there are still many things we do not know,” Deeble said.
Shah added, “As in any outbreak, this is an evolving situation and things can change. What you are seeing now is science in action.”
For the latest updates on bird flu in the United States, visit the CDC’s H5N1 Bird Flu: Current Situation Summary website.
May 16, 2024 – Multiple U.S. agencies are working to contain the recent bird flu outbreak among cattle to prevent further spread to humans (beyond one case reported in early April) and use what we learned before, during, and after the COVID-19 pandemic to keep farm workers and the general public safe.
Fingers crossed, the bird flu will be contained and peter out. Or the outbreak could continue to spread among dairy cattle and other animals, threatening the health and livelihoods of farmers and others who work with livestock.
Or the virus could change in a way that makes it easier to infect and spread among people. If this happens, the worst-case scenario could be a new influenza pandemic.
With so many unknowns, WebMD brought together experts from four federal agencies to talk prevention, monitoring, and what the “what ifs” of bird flu might look like.
Communication with the public “about what we know, what we don’t know, and ways you and your family can stay safe is a priority for us at CDC,” said Nirav D. Shah, MD, JD, the CDC’s principal deputy director. “We at the federal level are responding, and we want the public to be following along.”
People should consult the websites for the CDC, FDA, U.S. Department of Agriculture (USDA), and the Administration for Strategic Preparedness and Response (ASPR) for updates.
It is essential to not only stay informed, but to seek trusted sources of information, Shah said during “Bird Flu 2024 – What You Need to Know,” an online briefing jointly sponsored by the CDC and WebMD.
An ‘Experimental Hamburger’
If one take-home message emerged from the event, it was that the threat to the general public remains low.
The retail milk supply is safe, although consuming raw or unpasteurized milk is not recommended. “While commercial milk supply is safe, we strongly advise against drinking raw milk,” said Donald A. Prater, DVM, acting director for the FDA’s Center for Food Safety and Applied Nutrition.
As for other foods, thoroughly cooked eggs are less risky than raw eggs, and the nation’s beef supply remains free of the virus as well.
For years, federal inspectors have purchased and tested meat at retail stores, said Eric Deeble, DVM, USDA deputy assistant secretary for the Office of Congressional Relations. So far, H5N1, the virus behind bird flu, has not been detected in beef.
The USDA took testing a step further and recently cooked ground beef from dairy cows in their lab. Using what Deeble described as an “experimental hamburger,” the agency showed cooking beef to 165 F or higher kills the virus if it ever becomes necessary.
The federal government now requires all cattle be tested and be free of bird flu virus before crossing any state lines. The government is also reimbursing farmers for veterinary care and loss of business related to the outbreak, and supply personal protective equipment (PPE) like gloves, masks, and face shields to workers.
Vaccination Not Recommended Now
Federal scientists know enough about H5N1 virus to create vaccines against it quickly if the need arises. It’s more about planning ahead at this point. “Vaccines are not part of our response right now,” said David Boucher, PhD, director of infectious diseases preparedness and response at the Administration for Strategic Preparedness and Response.
If the virus changes and becomes a bigger threat to people, “we have the building blocks to produce a vaccine,” Boucher added.
An event attendee asked if the seasonal flu shot offers any protection. “Unfortunately, the flu shot you got last year does not provide great protection from the avian flu,” Shah responded. “It might do a little bit … but that is the vaccine for seasonal flu. This is something more novel.”
Treatments Stockpiled and Ready
Antiviral medications, which if given early in the course of bird flu infection could shorten the severity or duration of illness, are available now, Shah said. The dairy farmer who was infected with bird flu earlier this year responded to oseltamivir (Tamiflu) treatment, for example.
When it comes to bird flu symptoms, the fact that the only infected person reported so far this year developed pink eye, also known as conjunctivitis, is interesting, Shah said. Officials would have expected to see more typical seasonal flu symptoms, he added.
“Influenza is not a new virus,” Boucher said. “With this strain of influenza, we are not seeing any genetic markers associated with resistance to antivirals. That means the antivirals we take for seasonal influenza would also be available if needed to treat H5N1.”
ASPR has stockpiled Tamiflu and three other antivirals. “We do have tens of millions of courses that can be distributed around the country if we need them,” he added.
“Influenza is an enemy we know well,” Boucher said. That is why “we have antivirals ready to go now and many types of PPE.”
Science in Action
The feds intend to stay on the case. They will continue to monitor emergency department visits, lab test orders, and wastewater samples for any changes suggesting a human pandemic risk is growing.
“While we’ve learned a great deal, there are still many things we do not know,” Deeble said.
Shah added, “As in any outbreak, this is an evolving situation and things can change. What you are seeing now is science in action.”
For the latest updates on bird flu in the United States, visit the CDC’s H5N1 Bird Flu: Current Situation Summary website.
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