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How Inflammatory Bowel Disease Can Affect the Eyes

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How Inflammatory Bowel Disease Can Affect the Eyes

About half of people who have inflammatory bowel disease (IBD) will also have related problems outside of the digestive system. For about 1 out of 10 people with IBD, these related problems will occur in the eyes either because of the disease or as complications of treatment. Treatment-related eye problems occur in about 1 of 20 people who are treated. Disease-related eye problems occur in about 1 of every 20 people with Crohn’s disease and about 1 of every 30 people with ulcerative colitis. Most eye conditions related to IBD are treatable and unlikely to cause sight loss, but a few (thankfully even less common) have a higher risk of sight loss.

It is important for people with IBD to be aware that eye conditions may be part of their IBD, see an eye doctor (ophthalmologist) regularly, and contact their health care team if they have any eye irritation, redness, or pain. Also, some medications used to treat IBD can affect the eyes. It is important to discuss possible side effects of any medication with the health care provider who prescribes it.

Types of IBD-Related Eye Conditions and Treatments

Keratopathy is the presence of white deposits on the outer layer of the eye. Keratopathy is not painful and does not threaten sight. Usually no treatment is needed.

Dry eyes can be caused by a lack of vitamin A deficiency that occurs in IBD, especially after bowel surgery. This condition is also called keratoconjunctivis sicca, sicca, or KCS. Low production of tears or high evaporation of tears make the eye dry, irritated, and more easily infected. If infection occurs, antibiotics may be needed. Symptoms of dry eye are treated with artificial tears and vitamin A supplements as pills or injections into a muscle are needed to correct lack of vitamin A, which is essential for health.

Episcleritis is a common eye condition that occurs in people with IBD. Tiny blood vessels in the outer coating of the white of the eye, called the episclera, become inflamed and that area becomes red and painful. When it happens, episcleritis tends to come and go with disease flares. Steroid eyedrops and creams that constrict the blood vessels in the eye are used to treat episcleritis when needed.

Uveitis is inflammation of the middle layer of the eye, called the uvea, which causes pain, blurred vision, sensitivity to light, and eye redness. Usually, uveitis improves as an IBD flare improves, but sometimes treatment is needed. Treatment consists of steroid creams and eyedrops, but injections may also be helpful. It is important to treat uveitis because without treatment glaucoma, a disease caused by increased pressure in the eye, can develop and ultimately lead to permanent vision loss.

Scleritis is rare but more serious—without treatment, scleritis can lead to permanent vision loss. In scleritis, inflammation of the the protective outer layer of the eye, called the sclera causes pain in the eye that spreads to the face and scalp and is usually worse at night. In all cases, treatment is necessary, usually with nonsteroidal oral anti-inflammatory drugs (NSAIDs). However, NSAIDs can worsen IBD and long-term steroid use has serious side effects. If scleritis continues or happens again, immune suppressants to treat both the scleritis and IBD may be needed.

Inflammation may also develop in the retina (the back of the eye) or the optic nerve, although this is very infrequent. Retinal and optic nerve inflammation causes visual disturbances and temporary to permanent vision loss. Anyone with visual disturbances should be seen in an emergency room the first time it occurs.

Medication-Related Eye Conditions in IBD

Some immune suppressants that are used to treat IBD can cause uveitis or optic nerve problems and blood clots in the blood vessels within the eye. If this occurs, the medicine used may need to be changed and steroids may have to be used to treat the uveitis. Methotrexate, a commonly used treatment for IBD, may lead to eye irritation. Steroid treatments can cause cataracts and open-angle glaucoma, which both have a risk of vision loss.

Conclusion

Although most eye problems that occur in people with IBD are easy to treat and do not have long-term risks, a few rare conditions can lead to loss of vision. Anyone with IBD who notices eye irritation or inflammation should talk to their health care providers right away. Seeing an eye doctor regularly is a good idea. Understanding the eye complications of IBD is important—it can lead to early diagnosis and successful treatment.

What You Need to Know About Complex Perianal Fistula If You Have Crohn’s Disease

There are multiple causes of perianal fistulas, including Crohn’s disease; this article covers complex perianal fistulas in people who also have Crohn’s disease.

What Is a Complex Perianal Fistula?

In Crohn’s disease—one of the two main types of inflammatory bowel disease (IBD)—the area around the anus (the perianal region) is affected frequently. About 1 of every 3 people with Crohn’s disease will have perianal symptoms at some point, including pain, bleeding, swelling, seepage of feces, discharge, constipation, and incontinence.

Perianal symptoms and problems can be caused by Crohn’s disease itself, a disease which causes open sores (called ulcers) in the lining of any part of the digestive tract. The symptoms of Crohn’s disease, including frequent, urgent bowel movements and chronic diarrhea, and some medications used to treat those symptoms can also stress and injure the perianal area and the sphincter muscle that opens and closes the anus so waste can be pushed out of the body. When an ulcer extends through the lining of the intestine into the perianal area, an abnormal connection like a tunnel (or tract) can sometimes form between the intestine and the other tissue, such as skin or the sphincter muscle or both. It is these tracts that are the fistulas, which are painful, easily infected, and usually require treatment.

A perianal fistula is considered “complex” if:

  1. a certain area or amount of sphincter muscle is involved,
  2. a fistula branches (has more than one place where it opens into muscle or skin),
  3. the tract is infected or has formed a pus-filled sac inside called an abscess, or
  4. if the rectum or vagina are involved.

Some guidelines also suggest that fistula in anyone with IBD, fecal incontinence, chronic diarrhea, or anorectal cancer should also be considered complex.

How Are Complex Fistulas Treated?

Today, there is no proven best-practice standard-of-care treatment for complex perianal fistulas, especially for people with Crohn’s disease. It is clear that care is improved when a stomach and intestine specialist (gastroenterologist) and a surgeon who specializes in surgery of the perianal area, colon, and rectum (colorectal surgeon) work as a team.

Choosing the treatment that is best for you can be done in a way that focuses on what you would like to achieve. It may be helpful to ask your health care team to explain what could happen in the best and worst cases for each of the treatments they suggest you consider. Knowing that the reality is likely to be somewhere in between best and worst, you can then compare treatments.

Medications

Perianal fistulas can be treated with antibiotics, immunosuppressants, and a newer class of drugs called TNF suppressors, which are considered biologic agents. The antibiotics metronidazole and ciprofloxacin have both been used to treat fistulas, and about 1 of 4 people who use these have some fistulas close after 6 to 8 weeks of using the antibiotics. Unfortunately, the fistulas often come back when a person stops taking the antibiotics. This is a problem because using antibiotics long-term can worsen Crohn’s disease.

Immunosuppressants are often used to treat Crohn’s disease and can also promote fistula closure. The immunosuppressant drugs azathioprine, methotrexate, cyclosporine A, and mycophenolate mofetil have been tested in very small numbers of patients for the treatment of fistulas. The TNF suppressors, including infliximab, adalimumab, or certolizumab reduced drainage from fistula in most people and closed fistula in about half of those who were treated. More recent studies suggest that combining antibiotics with immunosuppressants or TNF suppressors may be more successful than any singular drug type alone. In these studies, fistulas closed in about 3 out of 4 people.

Surgery

Although the medications discussed can reduce symptoms and close fistula for some people, these do not work in everyone and do not repair the tissue damage. That is, the fistula is closed, but the tract is still there. For complete repair and full control of any infections, surgical treatments are needed. There is no one type of surgery that is considered best for all complex fistula cases, and choosing a type of surgery depends on whether infection is present, where the fistula is, individual factors, and the surgeon’s experience.

The risks of surgical procedures are infection, fecal incontinence, and recurrence of the fistula. These risks are higher for people with Crohn’s disease because of the ongoing disease process that makes it more difficult for the perianal region to heal. Before any procedure, the exact path of the fistula is determined with MRI, ultrasound, or a physical examination (often under anesthesia to control pain).

A seton is a piece of surgical thread that’s left in the fistula for several weeks to keep it open (a technique first described by Hippocrates in ancient Greece). Leaving the thread in the fistula keeps it open, allowing it to drain and heal. Sometimes the thread is tied tightly or gradually tightened, making the tract smaller and smaller, eventually leading to full healing. A loose seton can be used as a long-term remedy as well. Using a loose seton with one of the biologic medications described in this article is more effective as a form of treatment and results in lower risk of recurrence than using the seton alone. This is one of the reasons why it is important to have a team approach to medical care that includes the gastroenterologist, surgeon, and you as essential team members.

In flap surgery, the fistula is cleaned out by the surgeon, and a piece of tissue from the rectum (the lowest part of the large intestine just above the anus) is used to cover the opening to the fistula. About 2 of every 3 people will have successful treatment with this method, although Crohn’s disease is considered a factor for a lower chance of success.

Fistulas can be filled with a “glue” made from proteins that tend to stick together. Success with the glue alone is uncommon, and often an additional plug made up of collagen and other biologic tissue can be used to plug the fistula. This tissue is then gradually absorbed, permanently closing the fistula. Approximately 1 of every 2 people have success with this method. Laser surgery has also been used to create scar tissue within the fistula and plug the opening. This has been successful in about 2 of every 3 people who had the surgery.

The LIFT procedure (ligation of the intersphincteric fistula tract) is used when a fistula passed through the sphincter muscle around the anus. The procedure is a treatment for fistulas that pass through the anal sphincter muscles, where a fistulotomy would be too risky. A cut is made above the fistula and a stitch is used to close each end. The fistula is then opened and washed out and can heal. For people with Crohn’s disease, the procedure is successful about 2 of 3 times that it is done. The risk of incontinence is much lower with the LIFT procedure than flap surgery.

Even with the best medical and surgical treatments, fistulas may not fully heal or may continue to recur. Sometimes an ostomy-and stoma-procedure is needed to divert feces from the anus. In this procedure, an opening is created in the abdomen and the large intestine is connected to it. Waste flows into a bag that must be emptied regularly. Every effort is made to make this a temporary solution, and the intestine can be reconnected after the anus has healed for most people. Some people, however, will need to use this as a permanent solution.

Using This Information

For many people, this information can be difficult to take in even after hearing or reading about it more than once and can cause stress, worry, and and fear. Remember that you are not alone. Support groups for people with Crohn’s disease and other resources are available. It is important to learn what you can and ask questions. Whenever possible, it is good to have health care from a team from different areas of medicine (multidisciplinary) who work together and may include a primary care provider, a gastroenterologist, a colorectal surgeon, and a social worker or psychologist. This model of care may make it possible for you to talk with and get to know a surgeon before you need to make decisions about surgery and also means that if and when surgery is needed, someone will be there for you.

If there is not a multidisciplinary care team available where you are, consider talking to your doctors and nurses about how likely it is that you will eventually need a surgery of one kind or another. Ask if there are surgeons who they typically send their patients to and when they do refer them out for surgery. Also, find out if you can meet and consult with some of these surgeons when you don’t need surgery so that you can have someone in place if surgery is ever needed in the future.

Except in cases of life-threatening emergencies, the choice of when to be referred for surgery is individual and can be made in consultation with your health care team. When symptoms are not well-controlled with medicine or are only partially controlled, you may decide that surgery is worth it for you. This can be an ongoing conversation with your team and is ultimately about what levels of pain and discomfort you are willing to tolerate and what quality of life means to you personally.

Relying on Experience

When choosing your health care team members—multidisciplinary or not—it is best to find people who have experience treating Crohn’s disease. This is especially true for surgeons. Whenever possible, choose a surgeon who has performed the surgery you are going to have multiple times. You should be able to get an answer easily to the question of how many times a surgeon has done the procedure each year to get a sense of their experience (more is better).

You can also rely on the experience of other people with Crohn’s disease by seeking out in-person and online support groups. Some helpful things that people have said about their surgeries include:

“Coming to terms with needing surgery is a process. Take time to find out what your needs are and to adjust physically and emotionally.”

“Learning from other people’s experiences was empowering for me even when their experiences were different from my own.”

“Hang in there, it is okay to not be okay some of the time.”

“Find a surgeon willing to adjust the plans according to what is most important to you.”

“Over time, surgery gave me a much better quality of life.”

Conclusion

Fistulas are a common complication of Crohn’s disease that are best treated with a combination of medication and surgery by a multidisciplinary team. Whenever possible, finding a team of people who will work with you as the most important team member and adapt treatment to your life goals is helpful. Learning from other people with Crohn’s disease who are considering or have experienced surgery can be an empowering way to come to terms with your needs and improve your quality of life.

Anal Fistula. Mayo Clinic. Published January 18, 2018. Accessed August 9, 2020. https://www.mayoclinic.org/diseases-conditions/anal-fistula/care-at-mayo-clinic/mac-20352874

Bolshinsky V, Church J. Management of Complex Anorectal and Perianal Crohn’s Disease. Clin Colon Rectal Surg. 2019;32(4):255-260. doi:10.1055/s-0039-1683907

Gold SL, Cohen-Mekelburg S, Schneider Y, Steinlauf A. Perianal fistulas in patients with Crohn’s disease, part 1: current medical management. Gastroenterol Hepatol (N Y). 2018;14(8):470-481.

Gold SL, Cohen-Mekelburg S, Schneider Y, Steinlauf A. Perianal fistulas in patients with Crohn’s disease, part 2: surgical, endoscopic, and future therapies. Gastroenterol Hepatol (NY). 2018;14(9):521-528.

Surgery for Crohn’s Disease. Crohn’s and Colitis Foundation. Accessed August 9, 2020. https://www.crohnscolitisfoundation.org/what-is-crohns-disease/treatment/surgery

Panes J, Reinisch W, Rupniewska E, et al. Burden and outcomes for complex perianal fistulas in Crohn’s disease: Systematic review. World J Gastroenterol. 2018;24(42):4821-4834. https://doi.org/10.3748/wjg.v24.i42.4821

Vogel JD, Johnson EK, Morris AM, et al. Clinical practice guideline for the management of anorectal abscess, fistula-in-ano, and rectovaginal fistula. Colon Rectum. 2016;59:1117-1133. https://doi.org/10.1097/DCR.0000000000000733

What is the Microbiome and Why Does it Matter for IBD?

A World With Microscopic Pets

We human beings provide homes for many organisms, and not just our beloved cats, dogs, birds, and lizards! We provide a home to trillions of microscopic organisms—the bacteria, viruses, and funguses (like yeast) that live in or on our bodies. It’s true that we often think of all microscopic organisms as disease-causing, dirty, and unwanted. Just look at all the antimicrobial soaps and sanitizers in the personal care aisle at the market.

As important as it is to wash our hands to prevent infection with harmful organisms—especially in the era of COVID-19—there are also other organisms that we need for our bodies to be healthy. A good way to understand this is to think about an unwanted side effect of many antibiotics—diarrhea. Antibiotics not only kill whatever germ making us sick, they also kill some of the bacteria in our gut that help us digest our food. When the balance of micro-organisms that is its own little world—the microbiome—is disturbed, that also causes disease. We need our littlest pets—the microscopic ones living on and in us too!

 

The Digestive System Microbiome

In our mouths, stomachs, intestines, there are more than 100 trillion different micro-organisms living in harmony together and with us, their host. These organisms help us get the nutrients we need from food and protect us, through our immune system, from microscopic invaders that cause disease. In that framework, it makes sense that infection of the gut involves malfunction of the microbiome. But what about diseases like inflammatory bowel disease (IBD) that are not infections? What is the role of the microbiome in those diseases?

The answer is that we are still not entirely sure. Research on the microbiome is pretty new. In 2008, only 500 or so research papers on the microbiome had been published; from 2009 to 2019 there were 15,000! There is still so much to learn about the trillions of organisms that call us home and the role of the microbiome in health and disease.

 

Theories of the Microbiome Role in Inflammatory Bowel Disease

A role for the microbiome in inflammatory bowel disease (IBD) was suggested as early as the 1950s when dietary treatments were being explored (which is still happening). The idea was that an imbalance of organisms in the gut (too much of one and too little of another, for example) was either caused by or causing the gut injuries that define IBD, creating a vicious cycle of injury-imbalance-injury.

Since then, several differences in the microbiomes of people with IBD have been identified. There are 8 groups of organisms in the microbiome found at higher levels in people with IBD, and microbiomes of people with IBD also change more often. It has also been shown that having a gut infection called gastroenteritis (commonly thought of as stomach flu or food poisoning) makes a person more likely to have IBD. On the other hand, being breast-fed as an infant, drinking unpasteurized milk, and eating pork—which all expose a person to a wider variety of micro-organisms—make a person less likely to develop IBD. Perhaps the strongest evidence for a role of the microbiome in IBD is that a type of bacteria that produces a natural anti-inflammatory agent is found in very low levels in IBD, and a fungus known to cause inflammation is found more often in people with IBD.

The pattern of IBD occurrence around the globe and where it has become more common over time follows the pattern of industrial development, which tends to increase use of antibiotics and other antimicrobials. This supports the hygiene hypothesis that suggests being exposed to too few micro-organisms in childhood inhibits the development of the immune system and therefore makes people more susceptible to IBD. Of course, industrial development brings many other changes that could also explain increases in IBD.

The most important thing to know about all these observations is that we don’t know yet these are causes or effects of IBD. Just as we can ask whether the chicken or the egg came first, so too we can ask, “which came first, the IBD or the microbiome differences?”

 

Why Does it Matter?

Understanding what causes a disease can help in understanding how to treat it so people with IBD can live better lives. But diseases like IBD that involve the environment (including the microbiome), a person’s genetics, and normal immune reactions gone wrong are still pretty tough for us to understand.

If we find out that imbalances in the microbiome really are the cause of IBD or that once it is affected a changed microbiome makes IBD keep happening, then treatments to adjust the microbiome could be effective.

Medicines and treatments have been successfully developed based on theories of what might be effective, however. So, it makes sense that treatments that target the microbiome in IBD are being developed and evaluated already. These include probiotic supplements, specific diets, and fecal transplants. Although all are being carefully tested, there is not enough evidence yet to say that any of these are truly effective for treating IBD.

 

What Can We Do with This Information Now?

Unfortunately, there is no clear answer to this question yet. If you have IBD, your microbiome may already be changed, but it also may not. It is important that people with IBD talk to their health care team before trying any new supplement, including probiotics, or diet. Even though most will not be harmful, some diets can cause malnutrition and other health problems. Probiotics also may not be harmful, but that really depends on what is in a particular supplement and what a specific individual’s needs are. In the meantime, there are effective treatments to help you control your IBD.

We encourage you to partner with your health care team to find the best options for you and advocate for more awareness, support, and research whenever you can.

 

Main source: Glassner KL, Abraham BP, Quigley EMM. The microbiome and inflammatory bowel disease. J Allergy Clin Immunol. 2020;145(1):16-27. doi:10.1016/j.jaci.2019.11.003

What is The Specific Carbohydrate Diet and Does it Really Work?

The specific carbohydrate diet (SCD), is a very strict diet that removes all grains and certain sugars from what a person eats. The diet was developed in the 1950s by Sidney Valentine Haas, MD who thought it might help with difficult-to-treat digestive (gastrointestinal) conditions, including celiac disease, inflammatory bowel disease (IBD), and irritable bowel syndrome (IBS).

The SCD became more well known in the 1990s when Elaine Gottschall, PhD published Breaking the Vicious Cycle: Intestinal Health Through Diet, which is her story of treating her daughter’s ulcerative colitis.

Today, evidence that the SCD really works is limited. However, as long as people make sure to get enough nutrients when they follow this diet, it is not harmful. Some medical centers have even started providing support for people with these conditions who want to follow the diet—understanding that many want to try everything they can to improve these often-debilitating conditions.

 

Why Limit Grains and Sugars?

Dr. Haas, who originated the diet, thought certain carbohydrates, lactose and sucrose, were used as fuel by an overly high number of bacteria and yeast in the intestines. It is normal and healthy to have those micro-organisms, considered the microbiome, in our gut. Dr. Haas believed that an imbalance—too many of one or more types of bacteria or yeast—caused damage to the gut, which then increased the population of the problematic organisms. More organisms would then lead to more damage, creating a cycle of yeast and bacterial growth and damage to the gut.

One of Dr. Haas’ patients in the 1960s was the daughter of Elaine Gottschall. After the diet worked for her daughter, Elaine went back to school and earned several scientific degrees including a doctorate in biochemistry. She wrote Breaking the Vicious Cycle: Intestinal Health Through Diet, which is how many people learned about the diet.

 

What Is the Evidence Today?

All of Dr. Haas’ work was done by observing what happened to the children he treated when they did or did not eat certain foods. He and the parents knew what dietary treatment each child received and so it is possible that what they saw was what they hoped to see and not a real effect. That is why it is important to do what are called blinded randomized controlled studies, but these are very difficult to do for dietary treatments because someone participating in a diet study can see what they eat. Also, it is not ethical for people to be made to stop other treatments to test another, so many people using the SCD are also taking medication for their condition, making it hard to know if the diet is having a true effect.

The studies that have been done in recent years have been small (7 to 50 participants each) and were done after people had already been using the diet. In those 6 studies, 75% of children and adults with inflammatory bowel disease (Crohn’s disease or ulcerative colitis) who used the SCD did have improvement of symptoms and decreases in inflammation. However, in all but 1 of these studies, the research was done after the fact, which reduces the quality of the evidence for the diet. There is not enough evidence to say that the diet works or doesn’t work at this time. Based on what we know now, the most accurate statement is that the SCD may be helpful for some people with IBD.

 

What Is Included in the Diet?

The SCD is more than limiting carbs or being on a low-carb diet. There are very few foods that can be eaten at the beginning of the diet and some foods should be eaten only when certain symptoms are not present. As a person has fewer symptoms, they may be able to add back some foods. The foods that are acceptable on the diet include the following.

  • Nonstarchy fresh and frozen vegetables
  • Fresh, raw, or dried fruits
  • Fresh or frozen meats, poultry, fish, and eggs
  • Natural cheeses (ricotta, mozzarella, cottage cheese, cream cheese, feta, homemade yogurt, and dry curd cottage cheese)
  • Apple cider
  • Fresh squeezed orange juice
  • Nuts (but not seeds)
  • Honey

Starchy vegetables, including potatoes, yams, parsnips, chickpeas, and beans are not allowed. No lunchmeat or processed meat can be eaten. Condiments like ketchup or mustard are not allowed, nor is chocolate or ice cream. No bread or grains of any kind are included in the SCD.

 

Consult Your Health Care Team

It might feel great for a person with IBD or IBS to feel that they can “cure themselves” by controlling what they eat but giving up so many foods can be very challenging especially because food labels are not always accurate. If a person is able to follow the SCD, there is also a risk of malnutrition and unwanted weight loss. Not getting enough nutrients can cause serious nerve, muscle, and other health problems that can be painful or life-threatening.

For anyone considering the SCD it is a good idea to consult with a nutritionist about how to prevent malnutrition and other problems while on the diet. If you’re considering this diet, talk with your health care provider first. Self-treating your condition or making changes to your treatment without shared decision making with your team may have serious consequences. Your doctor may be receptive to the idea of the diet as long as you consult with a nutritionist and continue to have your health monitored carefully.

10 Things You Should Never Say to Someone with Crohn’s Disease or Ulcerative Colitis

What Not to Say to People with Inflammatory Bowel Disease

If you live with a chronic illness, you know how difficult it can be to explain your condition to others. This may be especially true if you look healthy and your condition is largely invisible, like Crohn’s disease or ulcerative colitis tend to.

However, these two forms of inflammatory bowel disease (IBD) can be debilitating and might even lead to life-threatening complications, per the Mayo Clinic. Ulcerative colitis causes long-term inflammation and sores (or ulcers) in the innermost lining of the colon and rectum, while Crohn’s disease can cause inflammation anywhere in the lining of your digestive tract, which often spreads far into affected tissues.

These conditions may cause a wide range of symptoms, including severe diarrhea, bloody stool, abdominal pain and cramping, reduced appetite, fatigue, and unintended weight loss. People with inflammatory disease often require immunosuppressive medication to reduce inflammation in the digestive tract and control symptoms.

IBD shouldn’t be confused with irritable bowel syndrome (IBS), which affects the large intestine and can cause cramping, bloating, and a change in bowel habits. While IBS causes discomfort, it doesn’t cause inflammation and damage to the intestines, per the U.S. National Library of Medicine.

People with IBD may face uncomfortable or unintentionally hurtful questions from loved ones, acquaintances, and even complete strangers. While you might mean well when chatting with someone who has IBD, it can be easy to say something that comes across the wrong way.

“A lot of people underestimate the severity of inflammatory bowel disease, and I think it’s because patients who have it don’t necessarily have outward symptoms,” says Christine Bishara, MD, an internist with a focus on gut health and wellness medicine in New York City.

Here are 10 things you should avoid saying to someone who has inflammatory bowel disease, with some background on why they might hit the wrong note.

1. “I wish I lost weight as easily as you.”

This may be a tempting statement to make if you try to highlight the positive, but many patients with Crohn’s or ulcerative colitis don’t intentionally try to lose weight. They may have a poor appetite, issues with absorbing nutrients from food, or simply can’t tolerate most foods at times, and might even need to resort to liquid oral supplementation to get their nutrition, according to UCSF Health.

“I have a family member with Crohn’s disease, and someone said to her, ‘I wish I could have diarrhea all day as well so I could stay skinny,’” says Dr. Bishara. “But these patients frequently lose weight because they are nutritionally depleted from not being able to absorb nutrients due to inflammation.”

Commenting about weight loss or eating habits in general can also come off as suspicious or judgemental. Samantha R. is a 23-year-old in Los Angeles who works in marketing for the online pharmacy Honeybee Health, and she experienced that suspicion when she was diagnosed with ulcerative colitis at age 21.

“There have been periods where I couldn’t eat anything, and some people made comments that I was too concerned with losing weight or following a fad diet if I wasn’t eating at a meal,” she says. “It was really frustrating, because all I wanted was to be able to eat a normal meal, feel like I was full, and not throw up from it.”

On the other hand, corticosteroids like prednisone are anti-inflammatory drugs often prescribed to those with IBD that can cause someone to put on pounds.

“Prednisone is notorious for causing weight gain,” says Dr. Bishara. “It can cause your face to look a little bloated and full, like a moon-shaped face. People will comment on that and say, ‘Oh, your face looks chubbier!’ but it’s really a side effect of the medications the patient is on.”

In short: If you’re talking to someone with Crohn’s disease or ulcerative colitis, there’s no need to mention their weight unless they want to speak about it.

2. “You’re tired again today? Let’s go grab coffee!”

The fatigue that those with chronic illnesses like IBD face is very different from the way other people feel tired after a bad night’s sleep or staying up too late.

“At my worst, when I hadn’t yet managed my ulcerative colitis with medication, I had what felt like two hours of being awake each day before I was really struggling to push through the rest,” says Samantha. “It’s really difficult to explain fatigue to people who haven’t experienced it, and to describe what it feels like when your body is shutting down.”

People with IBD may need to rest often, which others may mistakenly interpret as being lazy or  skirting responsibilities.

“There was definitely a misconception that I was being lazy or that I wasn’t self-disciplined enough if I was napping instead of working,” says Samantha R. “Even when people like my professors were really understanding, it was hard for me to ask for accommodations. I had my own self-judgment and felt like I wasn’t trying hard enough.”

3. “C’mon, don’t be antisocial!”

On that note, fatigue and other symptoms may cause someone with IBD to skip out on social gatherings. People might feel uncomfortable going out if they know they can’t eat or they’re worried about access to a bathroom. Try not to question their reasons for staying home.

“I’m not being anti-social, I’m not being lazy, and I’m not a buzzkill,” says Samantha. “That was a stigma I faced as my friends were adjusting to the fact that I had this condition. I simply could not act like others my age, who were going to parties or pulling all-nighters for classes.”

Plus, the person with IBD may already feel down about missing an event without added pressure from friends and family.

“A lot of people would tell me, ‘Why are you acting so old?’” says Samantha. “That was frustrating to deal with because I already felt like I was missing out on a lot. I was already beating myself up for not pushing through more, especially before my diagnosis when I didn’t know what was happening.”

4. “Maybe you just worry too much.”

Up to 40 percent of patients with IBD experience abnormal levels of anxiety, according to a 2015 review in the journal Clinical and Experimental Gastroenterology. IBD disease activity is closely linked to psychological symptoms like anxiety, which tends to be observed more during flares of IBD patients.

This may be one reason other people often blame IBD symptoms on anxiety. However, these are two distinct and different conditions.

“I’ve had anxiety for a long time, so when I first started having ulcerative colitis symptoms, they were often dismissed as me just being anxious,” says Samantha R. “I dealt with symptoms for four months longer than I needed to because everyone told me I was being anxious. I started believing that and dismissed my symptoms as made-up, when they were 100 percent not.”

While stress and anxiety can contribute to flares of inflammatory bowel disease, they do not cause it.

5. “You should really try to go all-natural.”

Someone’s treatment plan is very specific to them and the severity of their IBD — and it’s a conversation that should be reserved for them and their doctor.

“Some people have really mild IBD that resolves with dietary measures, while others need immune-modulating medications,” says Dr. Bishara.

Try not to give unsolicited advice on someone’s treatment plan because they’ve likely already discussed several options with their doctors.

“I work at a pharmacy and I still have people telling me I’m poisoning my body with prescription medications, when it’s the only thing that got me into remission,” says Samantha.

6. “You’re still having those symptoms?”

Although treatment can help Crohn’s and colitis patients reach remission and avoid relapses for their best quality of life, there is no cure for IBD, according to the University of Chicago Medicine. Symptoms can come and go and it’s common to have long periods of “normal” health with periodic (and highly disruptive) flares.

“I was able to get into remission after a year of medication, but it’s hard to explain to people — especially those my age who usually don’t have long-term health problems — that this is something I’m going to have to take into account for the rest of my life,” says Samantha.

IBD patients often weigh the choices they make with potential outcomes, even if they seem well or aren’t experiencing symptoms.

“Every decision I make takes into account whether or not something could be too much stress for my body and push me out of remission,” says Samantha R. “I’m constantly having to make these calculations and cost-benefit analyses.”

7. “How did you get it?”

The exact cause of IBD is still unknown. While stress and diet were previously suspected, experts now know that these factors might aggravate IBD but don’t cause it, according to the Mayo Clinic. Genetics or an abnormal immune system response to an invading virus or bacterium could play a role, but more research is needed.

“I think the majority of the population doesn’t know what having IBD means from a histological point of view, and many people probably just think, ‘Oh, whatever, they have a sensitive stomach,’” says Dr. Bishara. “When really, you’re having an inflammatory response.”

Asking someone what caused their IBD can make them feel as though they did something to bring it upon themselves, which is never the case.

“Someone might say, ‘It’s because you were anxious all those years,’ or ‘You didn’t eat healthy enough,’” says Samantha R. “There’s a lot of judgment there. Trust me, the person with the diagnosis is already judging themselves, because they suddenly have very different capabilities than what they’re used to.”

8. “You don’t look that sick!”

While IBD doesn’t always lead to visible symptoms, it can cause serious complications.

“A lot of times people don’t think patients with IBD are as sick as they really are,” says Dr. Bishara. “I’ve had patients who needed to be hospitalized for dehydration and other severe symptoms, even if they don’t necessarily look that sick.”

Depending on how well you know the person you’re speaking to, they may be willing to explain some of their symptoms to you. However, be careful about how you approach the topic, because some statements can come off as accusatory.

“You can be sympathetic and say, ‘I’m so sorry to hear that — can you tell me a little more about your symptoms?’” says Dr. Bishara. “I would say the majority of patients are happy to explain that, but perhaps not when they’re approached in a manner that’s suspicious or accusatory of the fact that they don’t look sick.”

9. “I know how you feel — I’m lactose intolerant.” 

You may be trying to relate, but even two people with IBD may have completely different experiences from one another, let alone two people with different gastrointestinal conditions.

“Someone with lactose intolerance has a completely different reason for having diarrhea than someone who has IBD,” says Dr. Bishara. The same is true for people with irritable bowel syndrome (IBS) or other gastrointestinal digestive issues.

When you’re lactose intolerant, you’re unable to fully digest the sugar (lactose) in milk and may experience diarrhea, gas, and bloating after consuming dairy products. Although it’s uncomfortable, it’s usually harmless and can be treated with a low-lactose diet, per the Mayo Clinic.

Whether you have a lactose intolerance or are sensitive to another food, try not to compare your condition to someone else’s.

10. “My cousin’s friend cured herself with chamomile tea!”

People with IBD have heard about remedy after remedy from others, but they’ve likely already tried several treatment options.

“The severity of the disease varies between individuals, so what might work for one person might not necessarily work for another,” says Dr. Bishara. “People can feel like you’re trying to tell them they must not be doing the right thing if you give them unsolicited advice.”

It’s also important to keep in mind that while certain lifestyle habits might help reduce the inflammation that triggers symptoms, there is no magical cure for IBD.

“I can’t tell you how many times people have told me ‘I think you’re just not drinking enough water’ or ‘If you only meditated for five minutes every day, you wouldn’t have any of these symptoms,’” says Samantha. “People also tell me autoimmune conditions can be cured with the right all-natural diet, which is just scientifically wrong.”

What’s more, someone with IBD has likely already put a lot of time, energy, and effort into feeling better, and unsolicited recommendations can seem dismissive of that.

“There’s this assumption that I’m not doing everything I can,” says Samantha R. “It’s almost a little bit of judgment, as though I’m not trying hard enough to fix my ulcerative colitis. But I assure you, I don’t want to be dealing with this either.”

Banana AS, et al. Inflammatory bowel disease and anxiety: links, risks, and challenges faced. Clinical and Experimental Gastroenterology. March 23, 2015. doi: www.doi.org/10.2147/CEG.S57982.

 Inflammatory bowel disease (IBD). Mayo Clinic. March 3, 2020. https://www.mayoclinic.org/diseases-conditions/inflammatory-bowel-disease/symptoms-causes/syc-20353315.

Inflammatory Bowel Disease (IBD) Treatment. UChicagoMedicine. October 27, 2020. https://www.uchicagomedicine.org/conditions-services/inflammatory-bowel-disease/treatment.

Interview with Christine Bishara, MD, an internist with a focus on gut health and wellness medicine in New York City

Lactose Intolerance. Mayo Clinic. April 7, 2020. https://www.mayoclinic.org/diseases-conditions/lactose-intolerance/symptoms-causes/syc-20374232.

Nutrition Tips for Inflammatory Bowel Disease. UCSF Health. October 27, 2020. https://www.ucsfhealth.org/education/nutrition-tips-for-inflammatory-bowel-disease.

U.S. National Library of Medicine. Irritable Bowel Syndrome. October 27, 2020. https://medlineplus.gov/irritablebowelsyndrome.html.

86 Migraine: New Global Healthy Living Foundation Educational Campaign and Video Series Busts Myths About Migraine and Urges People to Take Back Control

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

 

UPPER NYACK, NY (November 18, 2020) – The Global Healthy Living Foundation (GHLF) today launched 86 Migraine, an educational campaign that encourages people living with migraine to discard, or 86, what they know about migraine. Migraine is a disabling, neurological disease that impacts more than 37 million Americans and four million will experience chronic migraine, consisting of attacks more than 15 days a month. Unfortunately, fewer than 50 percent of people who meet the criteria of the illness have ever been diagnosed. The 86 Migraine campaign includes educational articles, quizzes, and four new videos that depict the experience of migraine. For example, one of the videos rejects the idea that men can power through pain and, instead, encourages men seek support.

“Though women are disproportionately affected by migraine, men also experience painful and debilitating attacks, but are less likely to report them,” said Joseph Coe, MPA, a person living with migraine and the Director, Education and Digital Strategy, at GHLF and CreakyJoints. “In an effort to reach the entire community of people living with migraine, one of our 86 Migraine videos directly speaks to men’s experience of the disease to discourage suffering in silence and encourage having a conversation with their health care provider to identify a management strategy.”

Other campaign materials will debunk common myths about migraine, educate on traditional, complementary, and alternative therapies, and provide support. People living with migraine can download for free GHLF’s Migraine Patient Guidelines and/or Migraine Caregiver Guidelines. In addition, 86 Migraine will encourage people living with chronic migraine to join GHLF’s 50-State Network, which helps people living with chronic disease advocate for better access to care on the local, state, and federal level.

“It’s a myth that migraine is just a really bad headache. The multitude of symptoms that comprise an attack can derail your entire day and chronic attacks will diminish your quality of life. Our goal is to provide support to the people who live with migraine so that they are empowered to educate themselves and their loved ones about migraine, and then take action to determine their management strategy based on their goals,” said Louis Tharp executive director and co-founder of GHLF and CreakyJoints.

Visit http://86migraine.org/ to watch the videos and review educational materials.

86 Migraine is made possible with support from Amgen/Novartis and Eli Lilly.

About Global Healthy Living Foundation

The Global Healthy Living Foundation is a 501(c)(3) non-profit organization whose mission is to improve the quality of life for people living with chronic illnesses (such as arthritis, osteoporosis, migraine,  psoriasis, inflammatory bowel disease, and cardiovascular disease) by advocating for improved access to health care at the community, state, and federal levels, and amplifying education and awareness efforts within its social media framework. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the digital arthritis community for millions of arthritis patients and caregivers worldwide who seek education, support, activism, and patient-centered research through ArthritisPower® (ArthritisPower.org), the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions. GHLF also hosts PainSpot (PainSpot.org), a digital risk assessment tool for musculoskeletal conditions and injuries. Visit http://www.ghlf.orgfor more information.

Find us on social media:

Facebook: https://www.facebook.com/creakyjoints and https://www.facebook.com/GlobalHealthyLivingFoundation/

Twitter: @GHLForg, @CreakyJoints, #CreakyChats

Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp

TikTok: globalhealthylivingfnd

 

[i] Migraine.com https://migraine.com/migraine-statistics/ Last accessed on 11/6/2020

[ii] World Health Organization. https://www.who.int/news-room/fact-sheets/detail/headache-disorders Last accessed on 11/6/2020

5 Things Chronic Illness Patients Should Know About the ‘California v. Texas’ Supreme Court Hearing

Pre-Existing Health Condition

The Supreme Court will hear yet another lawsuit against the Affordable Care Act (ACA) starting today that could have major implications for patients with chronic conditions. The case is known as California v. Texas.

While the outcome of this case is important for all Americans, it’s particularly important if you have pre-existing conditions. Here’s what the Global Healthy Living Foundation and CreakyJoints patient community should know about the case and how its outcome could affect access to health care.

1. Protections for pre-existing conditions would be eliminated if the Court rules the ACA unconstitutional

A core component of the ACA is that it protects patients with pre-existing conditions from being discriminated against in the purchase of health care. Under the law, insurers can charge more for smokers, but not for those with pre-existing conditions. If the law is held unconstitutional this protection would disappear and anyone with a pre-existing condition — such as a chronic disease like rheumatoid arthritis — would be at risk of losing their health coverage or having the cost of their premiums dramatically raised.

Before the ACA, insurers could turn a person down for an individual policy or charge them more, based on their medical history. The nonpartisan Kaiser Family Foundation estimates that about 54 million working-age adults have health issues that would have made them “uninsurable” before former President Barack Obama’s signature law.  Tens of millions more have issues that could have led to higher premiums. Female gender was one, as insurers routinely charged women more.

And it’s likely that COVID-19 could become America’s newest pre-existing condition for the more than 10 million people who have tested positive so far. Under the ACA, a coronavirus case cannot be used to deny someone coverage or charge them more. If the ACA is gone, that becomes a real question.

2. The lawsuit was originally brought by the state of Texas and other Republican-led states against the United States

The Justice Department — under President Trump — is no longer defending the law in the Court. The defense of the law is being led by California, along with 20 other states. The House of Representatives has also entered the lawsuit in defense of the ACA.

3. “Severability” is the buzzword to know

The key legal argument for invalidating the law is the mandate requirement of the ACA. In 2010, Congress included a “mandate” to purchase health insurance, along with a penalty for those who failed to comply.

In 2017, Congress reduced the penalty to zero dollars, effectively getting rid of the mandate.

In an earlier ruling, the 5th Circuit majority agreed with Plaintiffs (led by Texas) that the elimination of the penalty made the individual mandate unconstitutional because it can no longer be justified as a tax.

The question is: If the individual mandate is deemed unconstitutional in the current case before the Supreme Court, does that make the entire ACA unconstitutional? It is possible that the Court will rule that the mandate is unconstitutional, but “sever” the remainder of the law, thus keeping the bulk of the ACA.

This would be reassuring news for people with pre-existing conditions as it would somewhat keep the status quo. The ACA law would survive without the mandate.

4. Welcome Justice Barrett

This is the most significant case that newly minted Supreme Court Justice Amy Coney Barrett will hear in her short tenure on the court. In her confirmation hearings last month, Barrett said there is a “presumption of severability” — giving hope to health care advocates that much of the law might remain even if the issue of the mandate is found unconstitutional.

5. A ruling on the case is not expected until next spring

So save your nail biting (if you even have nails left to bite at this point). And the House and Senate could always pass new legislation to address any changes in the ACA that would negatively affect people with pre-existing conditions. We’ll see about that.

Veterans Coping with Migraine: ‘I Started Getting Debilitating Migraine Attacks While Serving in the Gulf War — and They Never Went Away’

Veteran with Migraine Eula Moore-Marshall

This story was told to the Global Healthy Living Foundation by Eula Moore-Marshall, a 56-year-old veteran from Blue Island, Illinois, who started having migraine attacks during her time in the Gulf War. Head pain is one of several symptoms reported by veterans who served in the Gulf War, in what is commonly known as “Gulf War Syndrome” or “chronic multi-symptom illness.” This is Eula’s story with chronic migraine pain, and what she’s learned from her experience.

I joined the military in 1983 because I didn’t have enough money to finish college. About a year later, I went back to school — but I ended up spending 21 years in the military.

My job was as an army administrative specialist, which is basically like a clerk typist, in the 416th Engineer Command out of Darien, Illinois. I was in the reserves and also ended up training for nuclear biological chemical warfare.

Throughout my time in the military, I was able to do a lot of traveling. It was a great experience to go to different countries and see how other people lived. The places I visited included Germany, Honduras, Japan, Korea, Canada, and Italy.

Then, we were called to go to Saudi Arabia during the Gulf War. I was there for five and a half months. It was different from your regular training for war. You’re actually there in the conflict and always on guard.

It was a shock to the system going from training to real life — and to put what you had trained for through so many years into actual action.

When the Migraine Attacks Started

I had secret clearance and typed up contracts for different units that would come into Saudi Arabia in preparation for the conflict. I was in the nuclear, biological, and chemical warfare group, which was responsible for setting up a contamination village just in case we were hit with chemicals.

That’s when my migraine attacks started. It was December of 1990, and I never experienced head pain like that before. First I would get a sharp pain in the right front part of my head, like an ice pick headache. After that, my head would throb, and it was a nagging pain that wouldn’t go away.

It knocked me out to the point where I couldn’t do anything — I couldn’t see and couldn’t concentrate. I could be walking, talking, or working, and I’d have to stop in my tracks and close my eyes because it was so painful.

Each migraine attack would last for three to four days, and I had one 22 days out of the month.

How I Was Tested and Treated

I had tests done when I was in Saudi Arabia and when I returned home, but everything was normal. MRI and CAT scans gave no indication as to why I was having migraine attacks.

When I was in Saudi Arabia, I went to the sick hall and the doctors gave me pain medications called Midrin and Fiorinal (which is a narcotic and not legal here in the United States). While medication helped to shorten the duration of the migraine attack, it would make me really sleepy. Because of that, there were times when I could not take my medication and I had to suffer through the pain.

The sick hall doctors wrote a prescription for me to rest upon having the pain, but I wasn’t able to do that because it was wartime. The officers and the people I worked with would have a tendency to think I was trying to get out of work, but I wasn’t. It was just that painful.

There were times when I was typing in a MOPP suit (a chemical suit), with a gas mask and helmet. I’d be in excruciating pain with all of this equipment on.

At that time, I didn’t know of any triggers for my migraine attacks. It was so new to me that I didn’t know what triggers were, or even that I was experiencing chronic migraine. I didn’t know what was going on because I had never had pain like that before, and I didn’t have anyone to talk to about it.

Returning Home from War

After I returned home from the Gulf War on May 15, 1991, I still had migraine attacks three to four days a week. I would have such bad pain at nighttime that I couldn’t lie down. If I did, my head would throb and hurt even more, and then I’d have to get up to throw up.

Two nights out of the week, I was in the bathroom sitting next to the toilet. I would roll into a ball and sleep there, right on the floor.

Since I was back in reserve status at this time, I also held a full-time civilian job. The migraine attacks had gotten so bad that my eyesight left one day at work, and I couldn’t see anything. Everything went black. My supervisor and my coworker walked me to the bathroom and helped me into the stall. Once I sat on the toilet, my eyesight finally started to return.

Over the years, my neurologist would prescribe migraine medications like sumatriptan (Imitrex). The pill form didn’t do anything for me, so my doctor suggested that I try the shot form. Instead of making my migraine attack go away, the shot made it worse. It felt like my brain was trying to escape from my skull.

My civilian job ended up letting me go because my migraine disease kept me from working. Years after I was fired, I found out that because the chronic migraine happened to me when I was off at war, I was actually protected as a disabled veteran.

But at that point, I was too far beyond the statute of limitations to place a claim and try to get my job back.

I wound up getting another job working for the state of Illinois in the Department of Human Rights, but I ended up going on medical leave because my head was hurting so bad that I couldn’t go to work.

What My Life Is Like Now

Today, I still have migraine attacks three to four days per week. Most mornings, I wake up to a migraine attack. I make sure my 17-year-old son is getting prepared for his school through remote learning, and then I come back to my room and get back in bed with a pillow over my head. The TV is off, there’s no noise, and I just shut down completely.

My son is able to cook and do laundry for himself because over the years I taught him how to do those things when I couldn’t. At a certain point the migraine attacks would be so bad I’d just have to close my eyes and cry.

I no longer take Midrin because it’s not produced anymore. I have tried Botox, but it didn’t work for me. Over-the-counter pain relievers don’t work. I have tried acupuncture, which helped, but the pain would come back after a few days.

Right now I’m using Cefaly, which is a little sensor that sends electric pulses through your head. It tends to knock down the intensity a little bit, but I still have the pain.

A note from GHLF: Treating migraine disease can be complicated and what works or does not work for someone doesn’t mean it will work or not work for you. It’s important to discuss your individual situation with your health care provider.

This Is What I Want Others to Know

As soon as something starts going wrong with your body, do research on your symptoms. The more research you do, the better the communication between you and your doctor.

Also, know your triggers. I’ve since learned that weather is a trigger for me. I can pretty much predict that it’s going to rain because I’ll have aura or some type of a dull aching pain.

Finding groups of people you can talk to is very helpful. I found a chronic migraine awareness group on Facebook, and these women and some men were talking about their pain. I was like, “Oh my gosh, they’re experiencing the same thing I am!”

That’s helpful because you can otherwise feel so alone. You feel like no one can help you, and you can become depressed. You have to be careful and aware of certain mental changes — and know that there’s help out there.

I’ll put it this way: Having migraine attacks is a fight for your life. It has changed my life completely.

Virtual Patient Engagement During Worldwide Pandemic Produces Data Highlighting the Impact of COVID-19 on People Living with Rheumatic Disease

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

 

CreakyJoints® Research from the ArthritisPower® Research Registry Presented at the ACR Convergence 2020

UPPER NYACK, NY (November 2, 2020) – This week CreakyJoints®, the digital patient community for people with all forms of arthritis and part of the Global Healthy Living Foundation (GHLF), is presenting data collected during the worldwide COVID-19 pandemic that spotlights its impact on people living with chronic rheumatic diseases, reporting in part that many patients stopped their immunosuppressive medications without a recommendation from their doctor. The availability and integration of digital research tools, such as the ArthritisPower® Research Registry, combined with access to complementary physician and patient networks, resulted in CreakyJoints presenting more data at the American College of Rheumatology’s (ACR) annual meeting, ACR Convergence 2020, than at previous annual meetings, with two oral presentations and eight additional poster presentations.

In April 2020, CreakyJoints launched the Autoimmune COVID-19 Project, a longitudinal study for patients with arthritis, multiple sclerosis (MS), Crohn’s and colitis, and vasculitis to track the evolving impact of COVID-19 on patients living with these conditions. Data from the English and Spanish-language study informs some of the data being presented at the ACR Convergence 2020.

In the ArthritisPower study (n=1,517), Concerns and Behaviors of Patients with Common Autoimmune Rheumatic Diseases in the United States Early in the COVID-19 Pandemic, and a study using the identical survey (n=9,004) but conducted in partnership with the AARA multi-state rheumatology provider network, Concerns and Health-Related Behaviors During the COVID-19 Pandemic in Patients with or without Autoimmune Rheumatic Disease in a Large Physician Network, data shows that 10-15 percent of people living with autoimmune rheumatic disease interrupted their medication because of concerns directly related to the pandemic. In the ArthritisPower study, 14.9 percent stopped one of their medications, particularly those receiving biologics and with greater COVID-19 concerns. As reported by patients, most medication interruptions (78.7%) were not recommended by their physician.

“Rheumatologists and people living with autoimmune conditions have understandably been concerned about how autoimmune disease and immunosuppressive medications might affect susceptibility to COVID-19,” said lead study author Michael George, MD, MCSE, Assistant Professor of Medicine and Assistant Professor of Epidemiology in Biostatistics and Epidemiology at the Hospital of the University of Pennsylvania. “Our studies show that many patients living with autoimmune disease reacted to threat of COVID-19 by stopping one of their medications. At the same time, routine healthcare visits were interrupted for many patients making it harder for patients and providers to communicate. While guidelines from the American College of Rheumatology have emerged recommending that medications not be interrupted if patients are well, many patients may not be aware of these recommendations.”

Geography Impacted Healthcare Support

Another analysis of data from the AARA network, reported in Impact of COVID-19 on Missed/Cancelled Rheumatology Office Visits and Parenteral Immunosuppressive Medication, found that people with rheumatic disease frequently avoided office visits and laboratory testing, and experienced a reduced volume of immunomodulatory treatments.

Before the pandemic, 100 percent of return visits to healthcare providers were in-person. After March 15, return patient visits (mean 10,678/week) dropped to 70 percent, but were supplemented telemedicine visits (29.7%). However, even as telemedicine visits increased and office visit volume declined, the frequency of missed/cancelled in-person appointments also increased. For example, from March 23-28, 15 percent of all appointments were missed/cancelled overall, 17.9 percent for in-person visits vs. 5.1 percent for infusions (p< 0.0001). Patients with lower socioeconomic status (SES) had a 5-20 percent higher likelihood to miss/cancel office visits compared to those in the highest SES quintile.  Other factors associated with missing/cancelled office visits included greater driving distance to the rheumatologist office, female sex, smoking, comorbidities (e.g. anxiety, asthma, back pain, diabetes, fibromyalgia, GERD, sleep disorder) and region.

Dr. George added, “You might think that rural communities would have greater use of telehealth simply because practices are spread out geographically, but our study showed that people living in urban centers had greater concerns about COVID-19 given the population density and were more likely to make the switch the telehealth. Rheumatology practices in urban centers seem to have adapted to the pandemic fairly rapidly to maintain access to care.”

Digital Tools Increase Patient Adherence

In an oral presentation, CreakyJoints will summarize analysis of participant engagement and adherence from the Digital Tracking of Arthritis Longitudinally (DIGITAL) study, an ancillary study of the ArthritisPower® registry. The team characterized participating patients’ engagement, protocol adherence, and data completeness in an ongoing study in rheumatoid arthritis (RA). For at least 10 days of the 2-week Lead-In period, patients were required to electronically complete two daily single-item Pain and Fatigue numeric rating scales and also longer weekly sets of electronic patient-reported outcomes (ePROs). Those participants who successfully completed the Lead-In were mailed a smartwatch (Fitbit® Versa™) and study materials to then participate in the Main Study, which included automated and manual prompts to complete daily and weekly ePROs, wear the smartwatch and regularly sync it for the next 3 months. Researchers report in, Participant Engagement and Adherence in an ArthritisPower Real-World Study to Capture Smartwatch and Patient-Reported Outcome Data Among Rheumatoid Arthritis Patients, that a short lead-in period appears useful to identify patients most likely to engage in a longitudinal digital health study collecting data on a mobile app and was associated with subsequent patient adherence, and this adherence may vary by data collection platform.

“Given the availability of smart phones, smart watches and other digital devices, it’s important to understand patients’ willingness to engage in research with these devices as well as to confirm the completeness of the data,” said W. Benjamin Nowell, PhD, study author, Director of Patient-Centered Research at CreakyJoints, and principal investigator of ArthritisPower. “This study demonstrates that real-world studies involving passive data collection in RA are feasible and that they benefit from patient-centered implementation and design to minimize patient burden, promote longitudinal engagement and maximize adherence.”

This study is sponsored by Eli Lilly and Company.

·         Effects of the COVID-19 Pandemic on Patients Living with Vasculitis, Abstract 1416 (poster)

·         Treatment Decision Making Among Axial Spondyloarthritis Patients: Real-World Data from the ArthritisPower Registry, Abstract 0154 (poster)

·         Changes in Patient-Reported Outcome (PRO) Scores for Nausea and Fatigue Following Weekly Methotrexate Dose in a Real-World Sample of RA and PsA Patients in the ArthritisPower Registry, Abstract 0155 (poster)

·         Patient Perceptions of Fibromyalgia Symptoms and the Overlap with Axial Spondyloarthritis, Abstract 1316 (poster)

·         Stepping Up for Inflammatory Arthritis (SUFIA): A Pilot Trial to Test Behavioral Economics Strategy to Increase physical Activity in Inflammatory Arthritis, Abstract 0546 (poster)

·         Implementation of Web-Based Patient-Reported Outcome Measures (PROMs) in SLE Clinical Care: A Multi-Center Prospective Cohort Study, Abstract 1145 (poster)

Created by CreakyJoints®, ArthritisPower is the first-ever patient-centered research registry for joint, bone, inflammatory skin conditions, and arthritis and rheumatological manifestations of gastrointestinal-tract (GI) conditions. With more than 29,000 consented arthritis patients, the free ArthritisPower mobile and desktop application allows patients to track and share their symptoms and treatments while also participating in voluntary research studies in a secure and accessible manner. Results from ArthritisPower studies are frequently published in peer-reviewed journals and presented at medical meetings in the United States and around the world. ArthritisPower Patient Governors serve as gatekeepers for researchers who seek to access registry data or solicit the community to participate in unique, voluntary studies. ArthritisPower’s past participation in PCORnet®, the National Patient-Centered Clinical Research Network, was supported through multiyear, multimillion-dollar Patient-Centered Outcomes Research Institute funding awards [PPRN-1306-04811]. To learn more and join ArthritisPower, visit www.ArthritisPower.org

CreakyJoints is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients in English and Spanish through our popular social media channels, our websites www.CreakyJoints.org, www.creakyjoints.org.es/, www.creakyjoints.org.au, and the 50-State Network, which includes more than 1,500 trained volunteer patient, caregiver and healthcare activists.

As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org) with more than 29,000 consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints also publishes the popular “Raising the Voice of Patients” series, which are downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (PainSpot.org), a digital risk assessment tool for musculoskeletal conditions and injuries. For more information and to become a member (for free), visit www.CreakyJoints.org.

 

Find us on social media:

Facebook: https://www.facebook.com/creakyjoints and https://www.facebook.com/GlobalHealthyLivingFoundation/

Twitter: @GHLForg, @CreakyJoints, #CreakyChats

Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp

TikTok: globalhealthylivingfnd

A Dermatologist with Psoriasis Shares Her Top Home Remedies for Soothing Skin

Dermatologist with Psoriasis

If you live with psoriasis, you know the toll it can take on your everyday life. Beyond thick, scaly patches, you may experience itching, burning, soreness, swollen and stiff joints, and a number of other symptoms.

You’re certainly not alone: In the United States, psoriasis is a common autoimmune disease that affects more than 7 million adults, per a 2014 study in the Journal of the American Academy of Dermatology. However, that doesn’t stop misperceptions about the condition from running rampant.

“Some people can be mean about it, and even other doctors who are in other fields may not understand psoriasis, how to treat it, or what it’s like to live with it,” says Anna Chacon, MD, a board-certified dermatologist at Cleveland Clinic in Florida and expert medical writer for ZelenLife.com.

Dr. Chacon has psoriasis herself and has experienced scaling on her feet, hands, and scalp. She recalls an incident in which a surgery professor during her intern year of medical training incorrectly assumed that individuals with psoriasis (including herself and another team member) have an infection.

“A lot of people think psoriasis is an infection or that patients with psoriasis don’t have good hygiene, but psoriasis is an autoimmune inflammatory condition that causes scaling and thickening of the skin,” Dr. Chacon says. “It can happen to anyone.”

Because of the symptoms and misconceptions Dr. Chacon has experienced as a result of her psoriasis, she says she’s able to better connect with her psoriasis patients and provide her own best tips and remedies for them.

“It’s hard to live with psoriasis because it’s not only a visual ailment, but it also affects self-esteem and causes symptoms like itching, scaling, and joint pains,” says Dr. Chacon. “Having psoriasis myself definitely makes it easier to talk to patients, because I always remember my own experience and how I’ve felt.”

If you have psoriasis, it’s important to maintain a healthy lifestyle that includes eating healthy, exercising regularly, and managing stress. Although psoriasis is genetic, other factors can worsen it or trigger flares (like stress or illness), per the National Institutes of Health. Those with psoriasis are also more prone to psoriatic arthritis, cardiovascular problems, obesity, high blood pressure, and diabetes.

Talk to your dermatologist about a specific medical treatment plan for your particular type of psoriasis.

However, these tips from Dr. Chacon — which she regularly uses herself — may also help to soothe your skin along with medical treatment.

1. Shower with warm (not hot) water

People with psoriasis can also have aching joints, particularly if you have psoriatic arthritis. In fact, joint symptoms are sometimes early signs of psoriasis, according to the Mayo Clinic.

“I find that showering with warm water helps, as well as using warm compresses for joints,” says Dr. Chacon. “After being in the pool or the ocean, a quick shower right after is also really helpful for preventing flares that can be uncomfortable.”

While warm water may help sore joints, definitely avoid hot water, which can dry out your skin.

Other bathing tips for psoriasis-prone skin from the American Academy of Dermatology (AAD).

  • Take just one bath or shower per day
  • Keep baths to 15 minutes or less and showers to five minutes or less
  • Wash your skin very gently with your hands rather than a loofah or washcloth to prevent irritation

2. Add oil to your shower routine

Dr. Chacon also uses body oil in the shower, especially if she’s in a dry environment and doesn’t have time to moisturize afterward.

“I shower with body oil after lathering up with soap, which helps to moisturize my skin,” says Dr. Chacon. “Showering with body oil usually allows for more hydration. It’s also important not to overdo it with soap, which a lot of people are doing since we’re dealing with COVID-19.”

When possible, Dr. Chacon recommends also moisturizing immediately after your shower.

“That’s a good time to put on moisturizers or emollients because the skin is humid and retains the moisture,” says Dr. Chacon. (Moisturizers add moisture to the skin, while emollients soften the skin and are often an ingredient in moisturizers.)

In fact, the AAD recommends drying your skin gently by simply blotting it with a towel, leaving a little water so your skin remains damp.

Try it: Neutrogena Lightweight Body Oil, $14.97; Amazon.com

3. Moisturize with petroleum jelly

No need to break the bank on expensive moisturizers: Petroleum jelly (Vaseline) is Dr. Chacon’s top pick for soothing scaly and dry skin.

“It’s my favorite moisturizer and emollient in dermatology to recommend to everyone because it’s affordable, it’s found everywhere, and it comes in all kinds of sizes,” she says. “It helps to reduce scales and promote hydration by restoring the impaired skin barrier.”

You can even purchase small Vaseline travel jars that are easy to toss in a bag or keep in your car for on-the-go moisturizing.

“Although it is a thick, greasy emollient, Vaseline can and will moisturize anything,” says Dr. Chacon. “It also helps to prevent the embarrassing white scaling and dandruff that scatters on your clothing when you have psoriasis.”

Dr. Chacon says she manages the thick psoriasis plaques on her feet by applying Vaseline and then putting on a pair of cotton socks.

Other experts agree: Emollients like petroleum jelly should be used liberally and frequently to avoid skin dryness in those with psoriasis, per a 2017 review in the Indian Dermatology Online Journal. “Emollients form the backbone of therapy for psoriasis,” note the review authors. “They are a valuable first-line treatment because dry skin is common in psoriasis and adds to its irritability.”

Try it: Vaseline BlueSeal Series (Variety Pack), $9.92; Amazon.com

4. Use natural oils on your scalp

“The worst area where I have psoriasis is on the scalp, and it’s caused a lot of embarrassing dandruff, itching, and when it was poorly controlled, even hair loss,” says Dr. Chacon. “Natural oils like jojoba oil and coconut oil are helpful for reducing scales on the scalp.”

If you don’t want to feel too greasy on your way out the door, apply the oil to your scalp at bedtime. As a bonus, you may get an extra healing boost: Your skin actually does most of its repair work at night, Dr. Chacon adds.

Coal tar shampoo, often recommended for patients with psoriasis, can also be helpful for soothing scalp irritation. “Sometimes I mix it with regular shampoos and conditioners,” says Dr. Chacon.

Less expensive than most psoriasis treatments, coal tar can be used long-term to effectively treat plaque-type psoriasis, itch, and scaling. Dermatologists have been prescribing coal tar for more than a century to treat psoriasis — but some patients, like women who are pregnant or breastfeeding, should avoid it, per the AAD.

Try it: Organic Jojoba Oil, $9.99; Amazon.com

Try it: MG217 Psoriasis 3% Coal Tar Shampoo, $6.19; Amazon.com

5. Ask your dermatologist about salicylic acid

You may need prescription-strength salicylic acid to help remove psoriasis scales. Salicylic acid works by softening keratin, a structural protein in the skin.

“I use a 6 percent concentration of salicylic acid whenever I have a lot of rough scales on the feet that I want to tone down,” says Dr. Chacon. “However, it’s something that needs to be used in moderation, because it can make your skin sensitive and irritated by breaking down keratin.”

If you’d like to try an over-the-counter remedy for thick scales, CeraVe SA Lotion exfoliates with salicylic acid and lactic acid (which also breaks down keratin). Dr. Chacon also recommends Amlactin, which uses lactic acid to exfoliate tough skin.

Try it: CeraVe SA Cream, $19.97; Amazon.com

Try it: Amlactin Foot Repair Foot Cream Therapy, $7.79; Amazon.com

6. Get outside for sun and (if possible) sea

Because her psoriasis is “relatively under control,” Dr. Chacon uses mostly uses topical treatments at this time. “Sometimes I use a topical vitamin D ointment, however it is not practical or affordable for many patients because it is hard to find insurance coverage for this treatment,” she says.

That said, she also gets vitamin D and soothes psoriasis symptoms by spending time outside in the sun and sea. “I use phototherapy and balneotherapy [immersion in mineral water], mostly by going into the ocean,” says Dr. Chacon. “The combination of minerals, direct sunlight — with sun protection and sunscreen of course — is therapeutic and is feasible to do in a climate like the one in South Florida.”

Short exposure to sunlight or ultraviolet (UV) light may also help control psoriasis symptoms, according to Michigan Medicine. However, it’s important to avoid too much sun, which can damage the skin, cause skin cancer, and trigger flares of psoriasis if you get a sunburn.

Even if you don’t live by the ocean, you can soak to soothe your psoriasis in other ways. “I also like to use coal tar baths, a very old-school regimen,” says Dr. Chacon.

Some medical centers provide coal tar bath treatments, which may be paired with prescription phototherapy (light therapy), says Dr. Chacon. Talk to your dermatologist about which options are available to you.

The Importance of Medication for Psoriasis

For many psoriasis patients, home remedies and topical treatments are part of an overall treatment plan that includes medication to control the underlying cause of psoriasis: an overactive immune system.

Mild cases of psoriasis may respond to topic medication, such as steroid creams or other prescription creams.

But for moderate or severe cases of psoriasis, your dermatologist will likely recommend systemic medication. This means taking an oral pill or getting injections or infusions of medications to tamp down the overactive immune system that is causing psoriasis plaques.

“This is an individual decision that I usually make in conjunction with the patient’s needs and concerns about their quality of life,” says Dr. Chacon. “Most of it has to do with TBSA (total body surface area of involvement), presence of joint pains, and unresponsiveness to treatment. This is when I usually have a discussion about the possibility of including a systemic medication, whether it be an oral or injectable therapy for greater efficacy and better results.”

For Dr. Chacon, having experienced psoriasis herself shapes how she advises patients in finding the right medication.

“Going through dermatologic and medical conditions has undoubtedly made me a better, and more empathetic physician,” says Dr. Chacon. “I like to think it has made me relatable to others, and makes it easier to understand what it means to be in their shoes.”

8 Ways to Stop Baths and Showers From Worsening Your Psoriasis. American Academy of Dermatology. October 21, 2020. https://www.aad.org/public/diseases/psoriasis/skin-care/baths-showers.

Interview with Anna Chacon, MD, a board-certified dermatologist at Cleveland Clinic in Florida

Psoriasis. Mayo Clinic. May 2, 2020. https://www.mayoclinic.org/diseases-conditions/psoriasis/symptoms-causes/syc-20355840.

Psoriasis. Michigan Medicine. October 30, 2019. https://www.uofmhealth.org/health-library/hw58469.

Psoriasis. National Institute of Arthritis and Musculoskeletal and Skin Diseases. March 2017. https://www.niams.nih.gov/health-topics/psoriasis.

Psoriasis Treatment: Coal Tar. American Academy of Dermatology. October 21, 2020. https://www.aad.org/public/diseases/psoriasis/treatment/medications/coal-tar.

Rachakonda, TD et al. Psoriasis prevalence among adults in the United States. Journal of the American Academy of Dermatology. January 6, 2014. doi: https://doi.org/10.1016/j.jaad.2013.11.013.

Torsekar R, et al. Topical Therapies in Psoriasis. Indian Dermatology Online Journal. July-August 2017. doi: https://doi.org/10.4103/2229-5178.209622.