Month: June 2023

Wearable Devices and IBD: Hear one woman’s experience as a citizen scientist

Leave a comment

Raise your hand if you’ve ever been blindsided by an IBD flare. My Crohn’s has landed me in the hospital with zero warning on several occasions. The unpredictability of IBD is a huge challenge we all face. But what if a wearable device could signal when our disease course is going off the tracks? What if we had warnings long before we were face to face with our next flare?

An ongoing “Stress in Crohn’s” study out of Mt. Sinai’s IBD Center in New York and The John Radcliffe Infirmary/Oxford University in the United Kingdom has been investigating this since February 2021, with the help of 200 participants. The study wrapped up in June 2022 and was conducted in partnership with 4YouandMe and funded by a grant from The Leona M. and Harry B. Helmsley Charitable Trust to 4YouandMe.

The goal? To empower those with Crohn’s to monitor stress responses and early signs of impending illness worsening in between clinic visits, while providing a means to navigate life and mitigate the consequences stress has on our disease journey. While stress has long been known to somehow affect our IBD, the details of the relationship are poorly understood.

This week on Lights, Camera, Crohn’s we hear from an IBD mom and educator who recently participated in the Stress in Crohn’s study in hopes of taking action to help advance our knowledge of diseases like Crohn’s and ulcerative colitis.

The mission of the Stress in Crohn’s study

Wearables such as smart rings, smart watches, and smart scales, along with our phones, can collect information emanating from us. They can record our physiology and our routines that we are learning to weave together into “clinical symptoms”- such as fatigue, sleep, and stress.

“The main mission of 4YouandMe (nonprofit) is to empower individuals to navigate their own health by using wearables and apps while sharing their own health related data and insights for the benefit of all. This desire was birthed after working at Apple on their Special Projects team and grew out of asking “why can’t the data that emanates from each of us come back and help each person improve their health on a daily basis”,” said Stephen Friend, President 4YouandMe(nonprofit) , Visiting Professor of Connected Medicine, Oxford University.

Tina Aswani-Omprakash, MPH, Wearables Research Coordinator at Mount Sinai’s Susan & Leonard Feinstein IBD Center & Patient Advocate/Founder of the blog ‘Own Your Crohn’s’ says the promise of wearable devices in the prediction of IBD flares and drug response is real and something she’s excited about.

“As we know, IBD can be a progressive disease and it is important to shut down inflammation quickly to prevent complications. The wearable studies at Mount Sinai’s Susan & Leonard Feinstein IBD Center are looking to develop algorithms using measures such as heart rate variability, sleep duration & quality, essentially autonomic/ parasympathetic nervous system fluctuations via data collected through wearable devices. The hope is to help predict IBD flares and showcase drug response utilizing wearable device signatures,” said Tina.

Meet Nicole, Stress in Crohn’s study participant

Nicole Pavlin became a patient at the Mount Sinai IBD Center in New York and received an official diagnosis of Crohn’s disease of the ileum and jejunum in 2021, but her symptoms began more than 16 years prior. At the time Nicole was just beginning her teaching career and she was focused on raising her family. Once Nicole received her IBD diagnosis, she would often search GI research publications to better understand Crohn’s, along with the treatments and procedures available to patients.

“By educating myself about the disease, I’ve been able to communicate more efficiently with my healthcare team and advocate for my needs. The opportunity to participate in IBD research is always exciting to me, especially since the results could potentially help patients in the future,” said Nicole.

Nicole chose to participate in the “Stress in Crohn’s Study” from July 2021 to May 2022, which captured a period of time when her IBD symptoms took a turn for the worse. Nicole had bowel resection surgery that involved the removal of 6 inches of her ileum, including her Meckel’s diverticulum.

Getting recruited for the Stress in Crohn’s study

You may be wondering how Nicole got involved with this study. A Clinical Research Coordinator from the Mt. Sinai IBD Center reached out to Nicole to see if she’d be interested in participating. The researcher told her digital devices were being used to learn the relationship between Crohn’s disease symptoms and stress to try and predict the onset of flares.

“I was given detailed information about the study and instructions on downloading the app. The researchers provided me with an Oura ring, an Empatica EMBRACE wristband, and a Bodyport scale. I completed various surveys and tasks within the Stress Study app each day. Whenever I had a bowel movement, I would note the characteristics of the stool on the Pooply app based on the Bristol stool scale. The Rescue Time app was optional, and I chose not to use that one,” Nicole explained.

Daily points were awarded for wearing the Oura ring and Empatica wristband, using the Bodyport scale, answering survey questions, and completing tasks on the study app. Nicole received extra “boost points” for using the devices multiple days in a row.

“Every two weeks I gained points for completing a video diary and a cognition task. About five times during the study, I completed a Calprotectin stool sample at home through the IBDoc app. I had a support team and check-in calls each month to answer questions about my mental health and medications. There was also a study visit every three months to complete additional surveys about my health and Crohn’s disease.”

By the end of the study, Nicole earned more than 20,000 points for completing these tasks and eventually received 5 stars for being a “Groundbreaking Contributor” to science. She says the point system was a big motivator and a fun challenge. The study lasted 9 months. Nicole was compensated $400, and she got to keep the Oura ring.

Wearables provide a “new voice of objective data”

Up till now, those with chronic diseases have had to use their memory and feelings to convey their diseases. The wearables offer a new voice of objective data for themselves and for their physicians about what precisely occurred.

“In this study of Crohn’s disease, we were more interested in unlocking the link between stress and flares in Crohn’s. This is part of a larger set of feasibility studies to build for individuals a “Stress Load Navigator” for we note a tight connection between not just inflammatory bowel disease, but also diseases as diverse as diabetes, heart attacks, arthritis and even Alzheimer’s,” said Dr. Friend.

Marco Altini, Founder of HRV4Training, advisor at Oura, and Guest Lecturer at VU Amsterdam, says recent advancements in wearable technology are making it possible to move away from the lab and monitor our physiology continuously, in real life, when and where it really matters.

“In the context of many chronic conditions, the ability to monitor our own, individual changes in resting physiology over long periods of time, and in relation to symptoms or other makers, could finally help us better manage our health,” said Marco.Devices such as the Oura ring can monitor accurately resting heart rate and heart rate variability over time. These signals are tightly coupled to our stress response, which is often an important part of the picture when managing our health.

Participating in research as an IBD mom

Since there is a genetic component to IBD, Nicole says she worries that her children could show signs of the disease in the future. She’s been very open with her children about the challenges she’s faced with the disease.

“I want to model resilience for them so they can see how to navigate difficult situations. By participating in research, I want to show them that we have a chance to use these challenges to help others and make a difference in the future.”

Nicole says it’s encouraging that wearable devices could potentially predict the onset of flares, which might offer faster treatment to prevent the escalation of inflammation and disease progression.

The importance of contributing to IBD research

Nicole’s hope is that by sharing her experience, it will inspire others to participate in IBD research and encourage more funding for these types of initiatives.

“Our research contributions as chronic illness patients have so much potential to benefit others in the future.  This study was fascinating, and it was truly a pleasure to participate in the research.”

She says by taking the daily surveys and performing the tasks, it made her feel like someone was paying attention to her struggles.

“It gave me an incentive to be strong, thinking that my challenges could be helpful to IBD research!”

Nicole’s final thoughts on wearable devices

  • Wearable devices present a great opportunity for patients to monitor their health and provide feedback to healthcare professionals. “Since the study, I’ve continued to wear the Oura ring, and it’s been especially helpful to follow my progress as I rebuild and strengthen my body. Each morning I can check my readiness level to see how my heart has recovered from various activity levels. My sleep analysis has also been helpful for establishing a healthy sleep routine.”
  • The Oura ring has captured periods of strain on my body, and I can often tell when I’m getting sick with slight elevations in body temperature and resting heart rate.  “During my Covid infection, the ring app even showed a fever spike along with elevated heart rate. I’ve also been able to monitor episodes of tachycardia with the help of the Oura ring and a KardiaMobile device, which is a single-lead portable EKG connected to a phone app. In addition, we have a pulse oximeter at home to monitor heart rate and oxygen saturation.”
  • With so much information to collect on our health, these devices can be overwhelming and anxiety provoking. “During the study, I was constantly monitoring my symptoms which led to a hyperfocus on my disease. Weighing myself each day also contributed to anxiety. Each time my weight dropped a little bit, I got worried and discouraged. The constant focus on weight can also contribute to issues with body image, and I’ve since decided to just weigh myself at medical appointments. For anyone considering wearable devices, it’s very important to keep moderation in mind.”

When we step out into the world, we need navigation tools. The same goes with wearable technologies. Soon, we’ll be able to use the data taken directly from our own bodies, during our day-to-day lives, to follow what is happening and help us to better navigate our own health paths. According to Dr. Friend, last year almost half of American adults were wearing some form of smart watch, and as of Spring 2022 more than 90% of smart watch users state they use health related apps to follow their health. 

Interested in becoming a citizen scientist like Nicole? Learn about additional research opportunities:

Wearable devices:

Current IBD Forecast research (ehive studies) 

Other Opportunities:

Crohn’s & Colitis Foundation

Contact a Clinical Research Coordinator at a Hospital, University, or IBD Center

Patient-Centered Outcomes Research Institute (PCORI)

In the future, Nicole plans to contribute to the Mount Sinai Million Health Discoveries Program which aims to understand how to treat different diseases in patients of all races, ages, and genders.  She has also been invited to collaborate with Nutritional Therapy for IBD whose mission is to improve the lives and outcomes of patients with Crohn’s disease and ulcerative colitis through evidence-based nutrition.

Closing thoughts

The information collected from wearables can be a gamechanger for us as patients. Many of us call our doctors or go to the ER based on symptoms, but if we have remote monitoring via such devices, we could perhaps prevent this disease from spiraling. Kudos to Nicole and the many other research participants who are helping to push the needle and change the future of what it means to live with IBD.

“To me, that’s not just hope. That’s the future of managing this disease better and truly owning our Crohn’s or ulcerative colitis,” said Tina.

Connect with Nicole on Instagram: @nicolepavlin2

Connect with Tina on Instagram: @ownyourcrohns

Opening doors and breaking down barriers for the LGBTQIA+ IBD Community

Leave a comment

Healthcare for those with IBD in the LGBTQIA+ community looks a bit different. IBD often affects young adults, many of whom are just beginning to become comfortable in their sexuality and gender identity. This can be especially hard for LGBTQIA+ folks, who have already had to work through stigma and discrimination, and then have the additional burden of a new diagnosis of IBD. The LGBTQIA+ community is a big, diverse group of people and each person is unique.

This Pride Month on Lights, Camera, Crohn’s a close look at the most common concerns and patient experiences, helpful guidance to support the LGBTQIA+ community, tips for finding and communicating with your care team about your sexual orientation, and exciting news about how the University of California-San Francisco Medical Center is working to provide a safe space for patients.

You may not be aware that IBD symptoms can affect sexual function, colectomy and J-pouch surgeries can impact receptive anal sex, transgender people with active pelvic inflammation may have issues undergoing bottom surgery as part of gender affirming, and much more. The mere act of communicating with your care team can be an overwhelming and daunting experience.

Coming soon: An IBD Clinic specifically serving the LGBTQIA+community

Dr. Justin Field, MD, University of California, San Francisco, is passionate about supporting IBD patients who are part of the LGBTQIA+ community, as a gay man himself, he’s on the forefront of making the UCSF Medical Center one of the first in the country to have an IBD clinic geared towards treating IBD in the LGBTQIA+ community.

Currently there are two other clinics in the U.S. that specialize in treating LGBTQIA+ IBD patients, the Mayo Clinic in Rochester, Minnesota, run by Dr. Victor Chedid and Capital Digestive Care in Washington D.C. Dr. Jessica Korman, MD, specializes in LGBTQIA+ patients with all GI issues, including IBD. She also does anal cancer screenings.

“The clinic at UCSF is set to open this Fall and will offer comprehensive IBD care to anyone who is interested and will be a safe and inclusive environment where everyone involved in patient care will have special training in the unique needs and concerns of LGBTQIA+ patients. The clinic will offer screening for anal cancer, which is increased in patients with IBD, in men who have sex with men (MSM), patients living with HIV, those who have receptive anal sex, patients with prior cervical or vaginal cancers, and in those on long term immunosuppression,” said Dr. Field.

The clinic will also offer coordination between Gastroenterology and other specialties such as Colorectal Surgery and Transgender Care. For people who are interested, UCSF will offer the ability to participate in research that adds to the knowledge base about the unique needs of LGBTQIA+ people who have IBD.

“This clinic came from the realization that LGBTQIA+ folks often have unique needs that aren’t always addressed in other traditional settings. Also, patients often feel hesitant to fully discuss their sexual orientation and gender identity with healthcare providers due to fear of stigmatization or being treated differently. I wanted to create a safe space where patients can feel comfortable and empowered to be open with their healthcare team, and where they can receive the relevant expertise to meet their needs,” says Dr. Field.

Because LGBTQIA+ people have so often been left out of research (by not including sexual and gender diverse identities in research studies), having a dedicated LGBTQIA+ IBD clinic helps improve medical knowledge about how IBD affects LGBTQIA+ individuals, by allowing more patients to choose to participate in research.

“I have received incredible support from the University of California – San Francisco to start the clinic. The clinic continues to be a work in progress, and I’m continuing to seek out a wide variety of patient and provider input to ensure the clinic effectively serves the community,” explained Dr. Field.

Living with the stigma of IBD and being LGBTQIA+

CC Springhetti was diagnosed with ulcerative colitis when she was 12. She’s has an ileostomy and says sometimes she jokes that the universe keeps punishing her with stigmatized labels.

“I’m a woman, gay, AND I have a disability now?! In all seriousness, I try to view all my labels as gifts. They each make me who I am, and though it’s taken me some time to get to this point, I’ve learned to be proud of who I am and what I have. I know that sharing my life helps normalize and de-stigmatize IBD and queerness. Representation is so important, and being able to show up exactly as I am to show that you can be queer with IBD and still live a full life is a precious gift I have been given.”

CC and her wife share their life online and have been the target of extreme hate and prejudice. They’re received hundreds of threats.

“It can be draining to keep up with the amount of comment/message removal needed to keep our internet pages safe for young viewers and it’s incredibly disheartening on a regular basis. I sometimes give myself several days away from social media just to clear my mind – the hate and threats cause so much stress, and it can be difficult to separate internet life from real life. Those of us with IBD know how stress can affect our bodies, so this is a constant issue I am still working through every day.”

CC says when she’s admitted to the hospital, she’s dealt with the stress of her partner not being taken seriously of being allowed to make big decisions during emergency situations.

“We live in the south in the United States – it sometimes can be difficult for us to know who is able to separate their work life from their personal beliefs. When you’re in a hospital setting there really is no knowing, and this is something we always try to stay vigilant about and are very communicative with our care teams about what our needs and wishes are.”

The impact of IBD on sexual function

Brad Levy started to experience IBD symptoms in January 2022. He was diagnosed with Crohn’s the following month. His dad has ulcerative colitis, which sped up the diagnosis process significantly. Along with having Crohn’s Brad is a married gay man and a dad. Shortly after his diagnosis, Brad started to worry about how his disease would impact not only his life in general, but his intimacy with his husband.

Dr. Field explains why IBD can have such a big impact on the sex lives of LGBTQIA+ people.

“Receptive anal sex is an important part of sexuality for both LGBTQIA+ and non-LGBTQIA+ people but is especially important in this community. IBD often involves inflammation around the anus or in the rectum and this can make sex difficult or painful. For transgender folks, active inflammation in the pelvic area can affect their ability to undergo gender affirming surgery, so it’s especially important to address any pelvic inflammation.”

Brad says, “There is some shared stigma around IBD and being a gay receptive partner. Specifically, within the gay community there can often be some unrealistic expectations about how “cleaned” out you should be before engaging in receptive sex. The reality is though that shit happens, quite literally. The shame and judgment around a critical and natural bodily function such as elimination needs to end.”

Overcoming the fear of judgement and finding a care team you can openly communicate with

Talking about sex, sexual orientation, and gender identity can be scary as a patient, because often those in the LGBTQIA+ community have prior experiences telling people about their sexual orientation or gender identity which may have been met with rejection or judgement.

“Historically, the medical community has treated the LGBTQIA+ community poorly and considered LGBTQIA+ identities as pathologic. This historical context is important because there are very logical reasons patients aren’t comfortable talking about this with their doctors. In some areas, it truly isn’t safe for LGBTQIA+ individuals, especially the trans and non-binary community,” said Dr. Field.

Now more than ever, there are lots of affirming healthcare providers. Individual providers and practices can take measures to ensure a LGBTQIA+-friendly healthcare setting (For example, by following these recommendations put forward by the American Medical Association.

Demonstrating to patients that they are in a safe space to talk about their sexuality or gender identity can go a long way in facilitating sensitive conversations. Providers can seek additional education on sexual health in gender and sexual minority patients, so that they feel more capable of addressing the needs of the IBD community.

Dr. Fields says, “Providers should know it’s ok to make mistakes when it comes to addressing diverse sexual orientations and gender identities. What’s most important is that we acknowledge the mistake, apologize, and move on.”

CC is a firm believer that your doctor should be someone you never lie to. Honesty will help you navigate problems and solutions in a sensitive manner.

“I remember I was nervous to share with my gastroenterologist that I was gay. Whenever I referred to my partner and he responded back to me with questions or comments, he would always say “boyfriend” or refer to my partner as “he”. It felt scary to correct him (especially after all of these years) so I just didn’t. I was nervous it would embarrass him or make him feel silly, and I always want to protect people from that when I don’t feel they deserve it,” she said.

Then one day, CC was at a different doctor and she made sure to share to share that she was married to a woman and had been in a same-sex relationship exclusively for a number of years.

“I had this doctor add this information to the top of my medical chart. Now when I go to any doctor and they pull up my chart, they can see that I’m gay and can provide sensitivity to me in that way when speaking to me.”

Seeking out LGBTQIA+ affirming healthcare providers

Patients can feel empowered to seek out LGBTQIA+ affirming healthcare providers like Dr. Field.

  • Find providers with a special interest in LGBTQIA+ health. Patients can also look at lists such as the LGBTQIA+ Healthcare Directory.
  • Patients should feel empowered to be their own advocate. It’s a patient’s right to have their sexual health needs met and to receive care that is affirming of all genders.
  • Patients can bring a list of items that they want to discuss to a visit, and it’s best to mention those at the beginning of a visit to help set the agenda. It’s also always ok to seek a second opinion if you feel like your provider hasn’t gotten a satisfactory answer to your questions or if you feel another provider perspective would be helpful.

“Having a GI doctor you trust and feel comfortable enough to discuss your sexuality with is so important. When having receptive anal sex, things happen sometimes, such as tears, and you want to be able to talk with your GI doc openly so you can triage whether something is related to your IBD or not,” said Brad.

Additional IBD screenings for the LGBTQIA+ community

According to Dr. Field, men who have sex with men that are living with HIV should be screened for anal cancer.

“Other at-risk groups for anal cancer are men who have sex with men over age 40, people with prior cervical or vulvovaginal squamous cell cancer, patients that have receptive anal intercourse, and those with multiple sexual partners,” he said.

The risk of anal cancer is increased in patients with IBD, and doctors are continuing to learn more about this risk through ongoing research studies. Screening for anal cancer is with a rectal exam and a swab of the anal canal, called an anal pap smear. If these are abnormal, they must be followed by a procedure called a High Resolution Anoscopy, which is the best test for detecting anal cancer and its precursor.

“Anal cancer is caused by HPV, and there is a vaccine against HPV. Anybody who has not received the HPV vaccine, regardless of age or gender, can talk to their doctor about HPV vaccination. Currently, the CDC recommends HPV vaccination regardless of gender up to age 26 to prevent HPV related cancers, and the vaccine can be given up to age 45 on a case-by-case basis, if it’s felt it would benefit,” said Dr. Field.

Brad lives in the Chicago suburbs. As a result, he says the attitudes towards the LGBTQIA+ community are generally that of acceptance and love.

“I have always had a gay primary care physician because I want to make sure I am comfortable discussing any health issues with them. My GI is also aware of my sexuality, and we’ve had candid conversations about what intimacy looks like during a flare and what vaccines I should consider. For example, my GI recommended I receive the Gardasil HPV vaccine based on my sexuality and increased risk.”

Other cancer screenings to keep in mind are Colon cancer screening for all patients, Cervical cancer screening for patients who have a cervix, and skin cancer screening for all patients who have received immunomodulators, small molecules, and biologics.

“Much of the existing research on things like sexual health and surgery in IBD didn’t ask participants about their gender identity, sexual orientation, or typical sexual practices. This can leave both patients and providers at a loss for answers to sexual concerns,” said Dr. Field.

More and more, sexuality and gender identity are being included in research studies, and this will paint a clearer picture about how many LGBTQIA+ people are impacted by IBD, and how the course or experience of IBD is similar or different between LGBTQIA+ and non-LGBTQIA+ individuals.

Juggling a love life and fatherhood with IBD

Brad and his husband have been together for 13 years, so luckily communicating about his IBD has come easy.

“But I can recognize for others, in shorter relationships or dating, this isn’t always the case. All I can recommend is transparency and having a partner you feel you can be honest with. There will be times (such as a flare) where intimacy will look different. You want your partner to know that it’s because of your IBD activity and not because of them or some issue with your relationship,” said Brad.

As the years go by, Brad says the more authentically he lives, the happier he is. For him, that means living as an out gay man who has an amazing family. It also means living with Crohn’s disease, Anxiety, and Depression. Brad is open about his health struggles with family, friends, and close colleagues/bosses. He says transparency has served him and his relationships well.

As an IBD Dad to a five-year-old girl who is on the spectrum, Brad says focusing on self-care to help manage stress makes all the difference.

“Focusing on self-care enables me to show up as an active and healthy dad. My self-care includes hopping on my Peloton (#ThatDadBrad for the Peloton readers), bi-weekly therapy, monthly massages, and getting my nails professionally done. While not all these activities are for everyone, I strongly encourage folks to pour into their own cup or put on their own mask first. You can’t fully show up for you me kids and your family if you’re not grounded and the healthiest version of yourself, whatever that looks like for you.”

Brad wants to reiterate that his experience as a cis gay white man is “only one voice (and a privileged one at that) out of the vast and vibrant LGBTQIA+ community.” You can connect with Brad on Instagram at: @bssl.

CC says there are a number of ways our IBD community can show support. You can follow CC on Instagram at: @ccspringhetti.

“We’re all human, and I would encourage the IBD community just like I would encourage any community to show your support during Pride month and all year long through any means appropriate for your situation. Support LGBTQIA+ owned businesses, hang a Pride/Progress flag, post your support on social media, or even attend your local Pride events! If you’re ever looking to support a good LGBTQIA+ charity, I always suggest The Trevor Project.”

Certain roadblocks and issues that are a concern to one person, may not bother another. Just like every IBD patient, regardless of sexuality, the experience is unique. We all need to feel seen, understood, and respected, as one united IBD family.

Dr. Field’s views are his own and do not represent the University of California San Francisco.