Please enable JS

4 Letters Changed My Life: A GHLF Patient Advocate Shares Her Migraine Treatment Story

News

4 Letters Changed My Life: A GHLF Patient Advocate Shares Her Migraine Treatment Story

Migraine Advocacy Texas Drug Utilization Review

Being a member of the Global Healthy Living Foundation’s 50-State Network, our grassroots patient advocacy group, means speaking up when given the opportunity. Migraine advocate and 50-State Network member JP Summers did just that when she provided virtual testimony during a recent meeting of the Texas Drug Utilization Review Board (DURB). JP shared her story to help other Texans with migraine disease get access to better treatments — a new class of medication that JP says gave her back a normal life.

Below is her testimony.

***

My name is JP Summers and I live in Comal County. Thank you for the opportunity to share my story and for making it possible for me to share it virtually. I know everyone is busy and there is a lot you have to cover, so I will be short. I was alerted to this opportunity to share my experience living with migraine by the Global Healthy Living Foundation’s 50-State Network, who was informed of it through their participation in the Headache and Migraine Policy Forum.

The Global Healthy Living Foundation is a 501(c)(3) nonprofit whose mission is to help people with chronic disease live healthier and happier lives. I am a volunteer GHLF advocate. They have not provided me compensation for my time, testimony, or expenses.

I’m no stranger to health issues. I had heart failure six times. Yes, six times. Each of those times I recovered in a few days then returned back to my daily routine of being a social media and marketing coordinator and a single mom to two teenagers.

I also live with chronic migraine. Thinking about these two conditions, I have found it much harder to find ways to treat my chronic migraine. For those of you who don’t know the definition of chronic migraine, it is having more than 15 headache days a month. And unfortunately, there weren’t treatments that worked to reduce those days for me until 2018.

From the ages of 10 to 43 I tried dozens of different treatments and combinations of treatments. My life and career went on hold at the age of 35. Nothing seemed to work, and I ended up in the emergency room a lot, which meant I couldn’t be there for my family.

My kids mean the world to me. Migraine was making it so I wasn’t able to be a present mom. This tortured me.

But then advancements in migraine treatment happened. I was able to get on new migraine medication, a class of drugs called CGRPs [calcitonin gene-related peptide inhibitors] that are being discussed here today. Those four little letters “C-G-R-P” gave me life back. My kids got their mom back. I was able to go back to work again after taking a five-year absence.

I got my life back.

The pain and symptoms of migraine — throbbing head pain, unrelentless nausea, and sensitivity to lights, sounds, and smells — is not something I would wish on my worst enemy. Even my neurologist noted how debilitating my symptoms were for me and suspended my driving privileges for two years, which ultimately led to losing my job.

As a patient advocate, I hear the stories of people suffering with migraine, of having life put on hold. When you consider access to migraine treatments, I want you to think of me and all those who can’t be here today to tell their stoies. Think about a loved one or colleague who may have migraine.

My ask is simple. Please maintain and, if possible, expand access to these migraine treatments.

All Texans who live with migraine deserve access to the class of treatments that gave me life back.  Thank you.

***

Want to Get More Involved with Patient Advocacy?

The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.

We’re Not Anti-Vaxxers, We’re Traumatized: Here’s How to Build COVID-19 Vaccine Trust with People of Color

Learn more about our FREE COVID-19 Patient Support Program for chronic illness patients and their loved ones.

COVID-19 Vaccine Hesitancy in Black and Communities of Color

Now that the U.S. has multiple COVID-19 vaccine options and has been administering them for weeks, public health officials are facing a not very surprising problem: People of color are hesitant about getting it. And so far, the proof is in the pudding: Black people are getting vaccinated at lower rates than white people.

According to an analysis by Kaiser Health News of states that have released their vaccination data by race, “Black Americans are getting COVID vaccinations at dramatically lower rates than white Americans in the first weeks of the chaotic rollout.” In some places, white people are getting vaccinated at two to three times higher the rate of Black people.

In a December poll from the Kaiser Family Foundation, 35 percent of Black adults said they would probably or definitely not get a COVID-19 vaccine. Of course, this is even more concerning because people of color in the U.S. are dying from the coronavirus at nearly three times the rate of white Americans.

So, what’s happening here? Ask a lot of Black people and you’ll get a lot of answers, but here’s my perspective as a Black woman who has been a chronic illness and disability patient advocate for many years.

First, let’s just say this. Generally speaking, Black people are not anti-vaxxers. We may be vaccine hesitant, and the difference matters. In order to improve COVID-19 vaccination in people of color, we must understand the difference between these groups.

The Anti-vaxx Movement Is White Privilege

Over the past decade or so, most of us have become aware to some degree of the anti-vaxxer movement. The term “refers to people who disagree with the use of vaccines for a variety of reasons.”

You can read more here about the movement and how it got started, but it a lot of it has to do with people believing misinformation about vaccine dangers and not wanting infringements on their right to choose whether or not to vaccinate their children.

Social media groups and ill-informed proclamations from celebrities pushed the anti-vaxxer movement into the spotlight. Unfounded fears about vaccines triggering autism fanned the fire, despite virtually every single major trusted public health institution in the U.S. saying and proving that they don’t.

In my opinion, the anti-vaxxer movement is a powerful example of white privilege.

Data has shown that college-educated white women are more likely to be anti-vaxxers. Parents of color aren’t under the misguided notion that they can get away with raising their children however they want. They are aware that this is a great way to bring Child Protective Services into your life and possibly lose custody of your children.

If our kids’ doctors tell us to vaccinate our children, we do it. If our kids’ schools won’t let them attend unless they’re vaccinated, we follow the rules, we don’t fight them.

In contrast, the issue of COVID-19 vaccine hesitancy in people of color is very different.

It’s not about being trendy. It’s not act of anti-socialism. It’s not about cherry-picking which misinformed bloggers, celebrities, or “medical experts” you choose to “believe.”

Vaccine Hesitancy Is a Trust Problem

While there’s no single reason (or, for that matter, solution) for COVID-19 vaccine hesitancy in the Black community, the overarching problem is trust, or rather, a lack of trust.

All the theories about the causes of vaccine hesitancy have one common root: hundreds of years of people of color being unable to trust our government, especially when it comes to health and science.

Old trauma that persists to this day is not easily overcome.

As Karen Attiah wrote in the Washington Post: “Vaccines in vials are no good unless people take them. That requires trust on the part of patients, and therein lies the problem. For many Black Americans, generations of systemic medical racism and predatory experimentation on Black bodies have generated deep distrust of a system that was never built to serve them.”

The very system of vaccine development — which involves stages of clinical trials in which volunteers consent to participate in an experiment with an unknown outcome — is dependent on patients’ trust. And if patients of color were able to trust their doctors, medical institutions, or the government, clear answers from these sources would resolve this vaccine hesitancy problem.

However, disabled people and people of color (in particular Black people), have only to look to their lived experiences and the history of this nation to be supplied with endless reasons not to entrust their well-being to those who have previously abused them.

In ways that are both obvious and subtle, we are still being mistreated by this system that we are supposed to trust — whether we even know it or not.

In discussions about the Black community’s mistrust of the medical system, examples like Henrietta Lacks (a Black woman whose cancer cells were used for decades of medical research without her consent) and the Tuskegee experiments (in which Black men with syphilis were intentionally denied treatment so doctors could study the progression of the disease) come up over and over.

But this is just the tip of the iceberg. Maybe shady and highly unethical experiments are a thing of the past, but current racial disparities in health care are certainly not helping to improve our trust in the system.

To this day, misinformation perpetuates racism in medicine. For an easy recap, check out this episode of Last Week Tonight, which addresses the false claims that Black people have thicker skin, a higher pain tolerance, less sensitive nerve endings, different blood coagulation rates, and more.

And data doesn’t lie. Black babies have more than twice the risk of dying in their first of year of life as white infants, new research shows. Black people are almost three times more likely to die from asthma-related causes than white people, according to the U.S. Department of Health and Human Services Office of Minority Health. A new American Cancer Society report says that Black patients have the highest death rate and shortest survival of any racial/ethnic group in the US for most cancers.

And in a recent — and very relevant — example, a paper in a major medical journal showed that pulse oximeters (a tool that clips on to your fingertip to measure blood oxygen levels) can provide misleading results in Black people. This can lead people to think their blood oxygen levels are higher (read: healthier) than they actually are.

Pulse oximeters were not on my everyday radar before the COVID-19 pandemic, when everyone started Amazon Priming them to their homes to be able to check on their breathing when infected with the coronavirus. And we’re just finding out that they may be less accurate in Black people?

Is the disparity in COVID infections and deaths for Black people supposed to increase our trust?

Is the fact that Black people make up a large proportion of essential workers (and don’t receive hazard pay) supposed to increase our trust?

To Build Trust, Pass the Mic

All of these examples have everything to do with how communities of color think about the COVID-19 vaccine. Racial bias is still a fact of the U.S. health care system — and addressing its many facets is one way to start building back trust.

But this takes time. Years. Decades. So how do you repair the trust between the communities of color and the powers that be in time to get the COVID-19 vaccine distributed now?

To put it simply … You can’t.

However, I’ve been paying attention to Black doctors on Twitter who have been doing their part to come up with ideas and solutions, including panels where Black doctors answer questions and provide trusted information about COVID-19 and the vaccine for these communities.

Check out Cleavon Gilman, MD; Uche Blackstock, MD; or Brittani James, MD to get started.

In early December, Dr. James tweeted a practical proposal for a solution.

“As a Black woman and frontline physician currently caring for patients with and without COVID on Chicago’s South Side, here is what will ACTUALLY work in my view,” tweeted Dr. James, who works at the University of Illinois College of Medicine.

“First, we need to admit that white people and the government have little to no credibility in the average Black person’s eyes. That’s not a debate. That’s a forgone conclusion. What’s more, there is not enough time to correct that perception before this vaccine comes live,” she continued.

“If health systems, the government and providers *really* want Black people to take this vaccine, you all better start passing the mic and passing the power to act to Black and brown people,” she concluded, calling for a solution to empower people of color — from academics to grassroots organizers to church leaders — the platform, resources, and money to address the issue of vaccine hesitancy in communities directly.

Investing in Our Future

The burden simply can’t rest on them, however.

Repairing the medical system by identifying and eliminating racism and disparities is the ultimate goal, and we must act now.

This is not just about getting COVID-19 vaccines in Black arms in 2021. This is about every year that we will have a COVID and flu season in the future. This experience could make us a healthier and more unified nation, but only if we handle it correctly.

Only if we deal with anti-vaxxers with an unrelenting dedication to science, truth, and enforcing penalties as needed.

Only if we see our government and health care system demonstrate that they truly care about the health of every American equally, including every BIPOC, LGBTQ, disabled, or elderly American.

Only if our elected officials demonstrate an earnest dedication to help us bring about quality universal health care for all.

I believe this trust can be regained, but it demands a solid investment in and attention to communities of color. We need to work toward a future that values and uplifts the lived experienced of those most who are most marginalized.

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.

Attiah K. The health-care system has failed Black Americans. No wonder many are hesistant about a vaccine. The Washington Post. November 24, 2020. https://www.washingtonpost.com/opinions/2020/11/24/health-care-system-has-failed-black-americans-no-wonder-many-are-hesitant-about-vaccine.

Asthma and African Americans. U.S. Department of Health and Human Services Office of Minority Health. https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlid=15.

Bias In Medicine: Last Week Tonight with John Oliver (HBO). YouTube. August 19, 2019. https://www.youtube.com/watch?v=TATSAHJKRd8.

Cancer Facts & Figures for African Americans 2019-2021. American Cancer Society. 2019. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/cancer-facts-and-figures-for-african-americans-2019-2021.pdf.

Driscoll A, et al. Effects of Changes in Maternal Age Distribution and Maternal Age-specific Infant Mortality Rates on Infant Mortality Trends: United States, 2000–2017. National Vital Statistics Reports. U.S. Department of Health and Human Services. June 25, 2020. https://www.cdc.gov/nchs/data/nvsr/nvsr69/NVSR-69-05-508.pdf.

‘Henrietta Lacks’: A Donor’s Immortal Legacy. NPR. February 2, 2010. https://www.npr.org/2010/02/02/123232331/henrietta-lacks-a-donors-immortal-legacy.

 Kandola A. What is an anti-vaxxer? Medical News Today. November 4, 2020. https://www.medicalnewstoday.com/articles/anti-vaxxer.

Lubrano A. Anti-vaccine parents are often white, college-educated, ‘Whole Foods moms.’ The Philadelphia Inquirer. April 10, 2019. https://www.inquirer.com/news/middle-class-working-class-vaccine-anti-vaxxers-measles-cdc-20190410.html.

Nix E. Tuskegee Experiment: The Infamous Syphilis Study. History. December 15, 2020. https://www.history.com/news/the-infamous-40-year-tuskegee-study.

Recht H, et al. Black Americans Are Getting Vaccinated at Lower Rates Than White Americans. Kaiser Health News. January 17, 2021. https://khn.org/news/article/black-americans-are-getting-vaccinated-at-lower-rates-than-white-americans.

Sjoding MW, et al. Racial Bias in Pulse Oximetry Measurement. The New England Journal of Medicine. December 17, 2020. Doi: https://doi.org/10.1056/NEJMc2029240.

Global Healthy Living Foundation Awards Grant to Chronic Migraine Awareness, Inc. to Support Migraine Education and Awareness

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

 

UPPER NYACK, NY (January 13, 2021)Global Healthy Living Foundation (GHLF), a patient-centered non-profit organization whose mission is to improve the quality of life for people with chronic illness, today announced that the organization awarded a $10,000.00 grant to Chronic Migraine Awareness, Inc. (CMA), a 501(c)3 organization, to support 2021 programming that will extend their existing ARMS program (Advocates Removing Migraine Stigma) from migraine patients to care partners and create virtual connection events for participants.

“We’re very excited to partner with GHLF to extend the reach of our ARMS program, which is proven to empower people with chronic migraine disease to advocate for themselves and help end migraine stigma through community outreach and education,” said Jeannette Rotondi, LSW, CCTP, Acting Executive Director, Chronic Migraine Awareness, Inc.

“The Global Healthy Living Foundation prioritizes building bridges between people living with chronic diseases, like migraine. We look forward to continuing our work with Chronic Migraine Awareness, an organization that works tirelessly to support the migraine community by providing hope and support,” said Louis Tharp, Executive Director and Cofounder of Global Healthy Living Foundation.

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) Research Registry. In response to the COVID-19 pandemic, GHLF started a Patient Support Program, informed by a patient counsel comprised of people living with a wide range of chronic illnesses, that now serves more than 30,000 people. Via CreakyJoints, GHLF also hosts PainSpot (PainSpot.org), a digital risk assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org) for telehealth and virtual care support. Visit www.GHLF.org for more information.

Find us online:

Global Healthy Living Foundation: www.ghlf.org

CreakyJoints: www.CreakyJoints.org

CreakyJoints Español: https://creakyjoints.org.es

CreakyJoints Australia: www.creakyjoints.org.au

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

Twitter: @GHLForg, @CreakyJoints, #CreakyChats

Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp

TikTok: globalhealthylivingfnd

LinkedIn: linkedin.com/company/ghlf

Thiopurine Medications Are Linked with Risk of Severe COVID-19 in Inflammatory Bowel Disease Patients

Inflammatory Bowel Disease and COVID-19

As the COVID-19 pandemic continues, there’s still a lot to learn about which types of underlying health issues — and medications associated with those health issues — affect the risk for severe illness and death among people who contract the coronavirus. A new study in the journal Gut may provide a clue, at least among people with inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis.

In the study, IBD patients who took thiopurines (such as azathioprine, or Imuran) were more likely to develop severe COVID-19 as were patients taking thiopurines in addition to anti-tumor necrosis factor (TNF) biologic medications, such as adalimumab (Humira). But TNF blockers were not linked with an increased risk. Thiopurines are drugs that reduce inflammation by damping down the exaggerated immune response that helps drive IBD.

Doctors have been concerned that immunosuppressant drugs may elevate the risk for severe COVID-19, defined as being admitted to the hospital, needing a mechanical ventilator, or dying.

The researchers based their findings on information from the Surveillance Epidemiology of Coronavirus Under Research Exclusion for Inflammatory Bowel Disease (SECURE-IBD), a database specifically launched to look at COVID-19 outcomes in IBD patients.

In a previous analysis of SECURE-IBD, the same authors found that IBD patients taking corticosteroids or mesalamine/sulfasalazine were also at a heightened risk of severe COVID-19 illness. Both mesalamine (Asacol and other brand names) and sulfasalazine (Azulfidine) belong to the class of drugs known as aminosalicylates, which are different from thiopurines. They work by reducing inflammation in the intestine.

For this study, the authors revisited the same dataset, looking at nearly 1,500 IBD cases from 47 countries. Overall, almost 8 percent (112 patients) developed severe COVID-19. Compared with people taking TNF antagonists alone, those treated with only thiopurine had a fourfold greater risk of severe COVID-19, as did people taking combination TNF antagonists and thiopurine. This suggests that thiopurines were driving the elevated risk.

As the authors state, “This is in line with previous studies that have observed a higher risk of viral infections in patients treated with thiopurines alone or in combination with TNF antagonists.”

TNF antagonists might even be protective against severe COVID-19 precisely because they curb levels of TNF, the authors state. “Higher baseline TNF levels have been associated with an increased risk of death in COVID-19, and the use of TNF antagonists as a COVID-19 treatment has been advocated by some experts in order to blunt the robust inflammatory response seen in severe disease,” the authors write. The authors didn’t find any notable differences between different classes of biologic drugs.

Most of the patients in the study who developed severe illness (79 percent) were over the age of 50, which makes it difficult to extrapolate the findings to a younger age set. Having other chronic health conditions and being treated with corticosteroids were also associated with a greater likelihood of severe disease.

The findings could mean that certain high-risk patients with IBD who are in stable remission with combination TNF antagonist/thiopurine therapy may be able to discontinue the thiopurine, at least while the pandemic continues to rage. This might include patients who are older and/or have multiple other health conditions that are associated with poor COVID-19 outcomes. This wouldn’t be necessary in younger patients with no other risk factors for severe COVID-19.

The finding could help guide decisions on treating IBD during this pandemic.

“Treatment of IBD has always involved balancing benefits and harms of treatment and the disease itself,” study senior author Michael D Kappelman, MD, associate professor of pediatrics at the University of North Carolina at Chapel Hill School of Medicine tells MedPage Today. “COVID plays a minor role in my balancing the benefits and risks, with the corollary that IBD should play a minor role in decisions about returning to work, school, etc.”

Get Free Coronavirus Support for Chronic Illness Patients

Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now.

Ungaro, RC, et al. Effect of IBD medications on COVID-19 outcomes: results from an international registry. Gut. November 19, 2020. doi: https://doi.org/10.1136/gutjnl-2020-322539.

Walsh N. IBD and COVID-19: Who Is at Risk? MedPage Today. December 12, 2020. https://www.medpagetoday.com/meetingcoverage/aibd/90185.

CreakyJoints Launches The Gout Show, a New Podcast Series and Educational Campaign

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

 

It is estimated that nearly 4 percent of the U.S. population (or 9.2 million people) are living with gout, a form of arthritis that causes severe, sudden attacks of inflammation, often in the toe joints or other large joints. Attacks occur following an overproduction of urate in the blood (known as hyperuricemia), which causes uric acid crystals to build up in the joints and trigger debilitating pain. Gout is a genetic condition. While more men than women get gout, anyone is susceptible if their body doesn’t properly break down uric acid before it crystallizes in the joints.

“The good news is that gout is highly treatable, but in order to address it with our patients, they have to recognize their symptoms and report them to their doctor,” said Payam Shakouri, MD, a nephrologist with Advanced Kidney Care of Hudson Valley in New York and a medical adviser to CreakyJoints. ““Not only can gout be disabling disruptive to a person’s quality of life, but it can cause serious damage to joints, bones and organs. I’m pleased to contribute advice on The Gout Show and encourage people living with gout to listen to the series and report any symptoms they might have to their health-provider team.”

The Gout Show also includes expert advice from Theodore R. Fields, MD, a rheumatologist at the Hospital for Special Surgery and Professor of Clinical Medicine at Weill Cornell Medical College in New York City.

While physicians guide the science of the podcast, patients drive the narrative. “I was surprised when — at age 32 — I was diagnosed with gout after experiencing pain in my knee. I thought it was a simple running injury that I could rehab, and I mistakenly thought gout started just in the big toe,” said Ashley Newton, a CreakyJoints member who shares her gout story in episode one of The Gout Show. “As I’ve learned more about gout, I’ve prioritized keeping up with my treatments, tracking my symptoms in CreakyJoints’ ArthritisPower® Research Registry, and sharing what I know about gout with other people in the event they may be experiencing symptoms that need to be reported to a doctor.”

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 CreakyJoints.org, CreakyJoints.org.es, CreakyJoints.org.au, and the 50-State Network, which includes more than 1,500 trained volunteer patient, caregiver, and health care 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, and eRheum (eRheum.org) for telehealth and virtual care support. For more information and to become a member (for free), visit CreakyJoints.org.

Find us on social media:

Facebook: facebook.com/CreakyJoints and facebook.com/GlobalHealthyLivingFoundation

Twitter: @GHLForg, @CreakyJoints, #CreakyChats

Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp

YouTube: youtube.com/user/CreakyJointsInc

TikTok: globalhealthylivingfnd

LinkedIn: linkedin.com/company/ghlf

CreakyJoints Launches eRheum.org to Educate Patients on Getting the Most from their Telehealth Appointment

Provider Groups Adopt Platform for their Patient Communities

 

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Jessica Daitch

Phone: 917-816-6712

Email: [email protected]

UPPER NYACK, NY (December 4, 2020) – CreakyJoints®, the digital arthritis community for patients and caregivers worldwide and part of the Global Healthy Living Foundation (GHLF), today announced the launch of eRheum.org, a new digital destination to help patients get the most from their telehealth appointment. Data presented at the 2020 ACR Convergence by CreakyJoints from our ArthritisPower supported Autoimmune COVID-19 Project showed that as the pandemic ramped up (post-March 15, 2020) return patient appointments dropped and telehealth visits increased, but not enough to overcome the frequency of missed/cancelled in-person appointments. This is a problem because disruptions in rheumatology care slow the rate at which patients can be diagnosed and treated, adversely affecting health outcomes and chronic disease management. Optimizing the availability and effectiveness of telehealth appointments will help with continuity of care.

“After consulting with rheumatologists and speaking with our patient members, we recognized the urgent need to help patients understand how to access telehealth and make the most of their virtual appointment,” said Louis Tharp, executive director and  co-founder of CreakyJoints and the Global Healthy Living Foundation. “Written in patient-friendly language, eRheum defines telehealth and how rheumatologists utilize it, provides patients with access to difference video conferencing portals to try with their physician, and explains how to make the most of your limited face-to-face time with your physician during the appointment itself.”

 

Taking Advantage of Telehealth

In May of 2020, GHLF asked its chronic disease patient community to rate their experience with telehealth over the previous two months on a scale of 1-10 (where 10 = excellent experience). Seventy-three percent of respondents said they have used telehealth in the past two months and of those who have used it, they rated with experience as eight. Given the positive response, CreakyJoints built eRheum.org with arthritis patient input and then shared it with provider groups to encourage them to share it with patients in their care. In addition to the main portal, eRheum has been adopted and co-branded by the Association of Women in Rheumatology (AWIR) and the Rheumatology Nurses Society™ (RNS).

“We’ve taught our patients who are on immunosuppressants for so long to avoid communicable diseases, particularly during flu season. This pandemic has really affected their willingness to venture out of their homes, even to medical appointments. Understandably, those with chronic diseases like inflammatory arthritis, who also already belong to a group with some of the highest risks for COVID-19 serious complications, such as blacks, Hispanics, the elderly, or those who are overweight, are most reluctant to venture out,” said RNS President Cathy Patty-Resk, MSN, RN-BC, CPNP-PC. ”We introduced eRheum to our nurses and advanced practice providers in our organization because we want to continue to be the resource they need for their patients. The tools available on eRheum promote confidence in patients to ask their questions to get the care they need to continue effectively managing their condition.”

“AWIR is dedicated to improving the health of all patients with rheumatic diseases and bridging the gaps experienced by patients from diverse backgrounds. Virtual care allows us to bring our caring to our patients wherever they are, and wherever we are. We embrace this initiative to optimize care for our patients,” said Grace C Wright M.D. PhD., President of AWIR.

 

Understanding Telehealth Best Practices

Recently, the University of Alabama at Birmingham announced that the university and collaborators such as Cedars-Sinai Medical Center and CreakyJoints and its ArthritisPower® Research Registry received a two-year, $400,000 grant from the American College of Rheumatology’s Rheumatology Research Foundation to support telehealth-delivered healthcare. The Telehealth-delivered Healthcare to Improve Care (THRIVE) project’s primary investigator, Swamy Venuturupalli, M.D., is the recipient of this year’s ACR’s Norman B. Gaylis, M.D., Clinical Research Award, and the study is slated to begin in January of 2021.

THRIVE seeks to evaluate the quality of telehealth services when provided to a rheumatology patient in their home and deliver recommendations for physicians about best practices regarding what telehealth-related care delivery should include, how to deliver it, and how to standardize high quality care. It will produce a peer-reviewed white paper that describes those best practices. Overall, the goal is to expand the impact of rheumatology by increasing patient access to care, especially among those marginalized or most at risk by the COVID-19 pandemic. CreakyJoints will produce a patient-facing training video that will show rheumatoid arthritis (RA) patients how to perform joint self-assessment and compare its accuracy with an in-person clinician joint exam (the gold standard).

“Telehealth offers patients the flexibility they need to stay in contact with their doctors, but this works only when both parties understand how to get the most out of the appointment,” said W. Benjamin Nowell, PhD., Director, Patient-Centered Research at CreakyJoints, principal investigator of the ArthritisPower Research Registry, and a co-investigator of the THRIVE study. “Telehealth in rheumatology has some unique features and this study is an important complement to eRheum as it enables us to further enhance the telehealth tools and education we offer to rheumatologists and people living with arthritis. Ultimately, we want to do all we can to ensure productive and satisfying telehealth appointments for arthritis patients and their doctors.”

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

LinkedIn: https://www.linkedin.com/company/ghlf/

What’s the Difference Between IBS and IBD?

It can be easy to confuse irritable bowel syndrome (IBS) with inflammatory bowel disease (IBD). Both are common chronic diseases with symptoms of abdominal pain and chronic (long-lasting) diarrhea or chronic constipation that can start at any age. Another thing the two conditions have in common is that we don’t know yet what causes either disease. It is also possible for a person to have both IBS and IBD.

Both IBS and IBD can cause severe abdominal pain, social discomfort, difficulty with work and other public situations, and even work loss. As described below, IBD also has other symptoms that can cause additional problems.

It is important to know the differences between these two conditions because treatments for each are very different, ranging from adjusting diets for IBS to using immune therapy or surgery for IBD.

Inflammatory Bowel Disease Is a Condition of Structural Damage from Inflammation

IBD in itself can be confusing because it’s an umbrella term for two distinct diseases: ulcerative colitis, which affects only the lining of the large intestine or colon, and Crohn’s disease, which can affect any part of the gut—from the mouth to the anus. Both types of IBD, ulcerative colitis and Crohn’s disease cause physical damage to the gut that can been seen with an x-ray or endoscopy (using a camera to look inside the gut from the mouth or anus) or during surgery.

The damage caused by IBD can lead to severe symptoms, including fever, weight loss, lack of energy, joint pain (arthritis), skin rashes (dermatitis), and sore red eyes. These symptoms occur because IBD is an autoimmune disease, which means that the immune system is overactive and attacking the body. Right now, we don’t know which comes first, damage in the gut that causes immune overactivity or the reverse; it’s a bit like the question of which came first—the chicken or the egg. What is important to understand is that the immune system and gut damage occur in a cycle and that the overactivity of the immune system also causes symptoms outside of the gut. The immune system responds as if there were an infection, causing symptoms similar to infection, like fever, weight loss, lack of energy, joint pain (arthritis), skin rashes (dermatitis), and eye inflammation.

In IBD, there might also be bleeding in the intestines that can result in iron-deficiency anemia (low blood iron). Structural damage can also result in ulcers (open sores) from mouth to anus, fistulas (abnormal connection of tissue between two body parts), abscesses, scarring, bowel damage, liver damage, severe dehydration, or malnutrition.

Irritable Bowel Syndrome is a Condition Without Structural Damage or Inflammation

In IBS, no physical damage can be seen with imaging studies (x-rays or endoscopy). The symptoms of discomfort, pain, and diarrhea without damage are the only way to know a person has IBS, which can make it more difficult to understand. The absence of physical damage doesn’t mean that it doesn’t make it difficult to function, which is why IBS is sometimes called a functional disorder.

Because the immune system is not involved in IBS, the other, sometimes more serious, symptoms of IBD do not occur. That doesn’t mean that the symptoms are not a problem or that someone with IBS does not need medical care, although almost half of people with IBS do not seek care.

Diagnosis of Inflammatory Bowel Disease and Irritable Bowel Syndrome

Anyone with symptoms of IBD or IBS or any lasting change in their bowel habits should see their primary care provider, and possibly a gastroenterologist (a specialist in diseases of the gut) doctor to get help and make sure no other serious disease, such as colon cancer, is present.

To diagnose IBS or IBD, a doctor should ask many questions about the pain, discomfort, and problems with bowel movements. A doctor may need to order blood and stool testing, radiological imaging such as x-rays, CT or MRI, or an endoscopy exam to make sure no other disease is present, and to see if there is structural damage that occurs with IBD.

Treatments Are Different

Treating Inflammatory Bowel Disease

Treatments for IBD include anti-inflammatory drugs and immune system suppressants, many of which can have serious side effects and so should not be used to treat IBS.

People with IBD may also need anti-diarrhea medicines, pain relievers (but not those in the NSAID [nonsteroidal anti-inflammatory drugs] class like Advil or Aleve as they can make symptoms worse), and vitamin and iron supplements. In IBD it is also sometimes necessary to get nutrients by feeding tube or intravenously (putting nutrient fluid into a vein) so that the gut can rest and heal.

Some people with IBD will need surgical treatment, which is also not appropriate for IBS. Removing part of the intestines or bowel can cure ulcerative colitis and reduce the severity and spread of Crohn’s disease.

Treating Irritable Bowel Syndrome

For both IBS and IBD, changes in diet that eliminate foods that are more likely to cause gas or diarrhea can be helpful. For IBD, however, this will not be enough to prevent damage and other treatments will be needed.

When dietary changes are not enough to control symptoms of IBS, anti-diarrhea medications and laxatives can help with the symptoms of IBS. Sometimes, drugs to relieve gut spasms will be prescribed. Drugs that treat other types of neurologic pain and also depression may also be helpful. There are other treatments that relax the colon, stop muscle contractions of the bowel, or change fluid balance in the colon. Most of these have serious risks and side effects, however, so they are used only in severe cases of IBS that do not respond to other treatments.

Conclusion

Although IBS and IBD have some symptoms in common and can both affect peoples’ quality of life significantly, they are very different conditions with different treatments and different likelihoods of serious problems. As an autoimmune disease, IBD involves much more than the gut and can cause serious complications. Changes in diet can be helpful for both conditions, but this is rarely enough for IBD. Treatment of IBD usually requires drugs with serious side effects (anti-inflammatories and immune suppressants) and often surgery is needed. In contrast, it is common for IBS to be controlled with dietary changes alone.

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