Tag: IBD awareness

The Power of Community in IBD: What New Research Reveals About Connection, Stigma, and Support

Leave a comment

Community and chronic illness can be thought of as a beautiful tapestry. Our lives and experiences, while unique, become intertwined, and once we recognize we don’t have to embark on the isolating journey alone, we are forever changed. We are so much stronger together. Johnson & Johnson’s published White Paper developed through IBD Social Circle entitled, “The Power of Community in Inflammatory Bowel Disease: Coming Together to Reduce physical and psychosocial impacts” highlights key touchpoints of the patient and caregiver experience and shows the ripple effect of Inflammatory Bowel Disease and how complexity and intricacies of Crohn’s and ulcerative colitis reach far beyond the gut. IBD impacts our careers, our relationships, our identities, our mental and emotional health, and it often dictates how our life stories unfold.

This week on Lights, Camera, Crohn’s, I’ll walk you through the valuable insights from the white paper and show what the research uncovered when it comes to stigma, mental health, online communities, and more. You’ll hear heartfelt reactions from IBD patients and caregivers about the findings and hear what two leading gastroenterologists have to say about the research.

Leaning on the lifeline of community

Jessie Magaro was diagnosed with IBD when she was 15 years old. Her reaction to the white paper speaks volumes.

“I was almost in tears reading this research. When I was first diagnosed as a child, there was no readily accessible community to lean on. It was isolating, depressing, and incredibly lonely. But when my disease returned in adulthood after years of remission, I realized the world had changed,” she recalls. “Suddenly, there was visibility. People sharing their stories openly online, entire communities forming on social media. For the first time, I could connect with others who were like-minded and like-bodied, people who understood my fears, my choices, and my fight.”

That connection wasn’t just comforting; it was lifesaving. It became essential to Jessie’s mental health and gave her the strength to make the hard, necessary decisions about her body and her health that helped her survive.

The white paper digs deep into how and why patients and caregivers crave additional information and resources within the IBD community. According to the survey, “Nearly all people with IBD (95%) are looking for IBD information and resources beyond what their physician provides or discusses with them.” The survey found:

  • 42% of people with IBD have participated in online IBD support groups
  • 37% have engaged with social media forums or group chats on platforms like Facebook and Reddit
  • 28% have followed influencers who share their IBD journey on social media platforms.

Dr. Jami A. Kinnucan, MD, is an IBD specialist at the Mayo Clinic Florida. She says, “This research is profoundly impactful for the IBD community, as it highlights many of the challenges that patients experience but often do not share with friends, family, or even their healthcare team. It opens the door for important conversations within the IBD community and reinforces the need for clinicians to explore the broader effects of disease beyond physical symptoms.”

The pediatric caregiver perspective

Cindy Hancock’s daughter was diagnosed with Crohn’s at age eight, she tells me if there can be a “best” part of being an IBD caregiver, it is “absolutely the online community she’s been so grateful to find and learn from.”

As a result of how heavily her and her daughter have leaned on and benefited from the support of others who “get” the reality of life with IBD, Cindy was not surprised by the findings of this white paper that highlight the power of community.

“The courage to seek out a second opinion, and bring info shared by the second-opinion gastroenterologist to our established gastroenterologist? CHECK. Information about how to interpret iron blood work that helped me advocate for transformational care for my daughter, CHECK. Learning what intestinal ultrasound is, and why it presents an amazing opportunity for IBD care and joining forces with other patients to informally advocate for its increased usage in the U.S., CHECK. Anecdotes about drug interactions via lived experiences of other people with IBD, CHECK. Recommendations about favorite heating pads, CHECK. Learning from another Crohnie that gummy bears who aren’t red or purple are part of a colonoscopy prep diet, CHECK!! I could go on and on all day!” says Cindy.

She feels fortunate that her daughter has a good team of physicians, and they always seek their opinions first of course. But Cindy feels the tidbits they’ve gleaned from the IBD community online are what have transformed her daughter’s quality of life with Crohn’s. “The impact is incalculable.”

Cindy credits patient advocates for helping guide healthcare decisions, saying “the IBD community is akin to a warm blanket. We very rarely interact with people in the “real” world who live with IBD, but every day we get to interact virtually with people just like us who understand this life… and that sense of community is priceless.”

Bridget Brown’s daughter was diagnosed with Crohn’s two years ago when she was eight. She says, “Humans are built for connection—but when you’re handed a diagnosis that isn’t widely understood, it can feel incredibly isolating. Most families reach an IBD diagnosis after some really dark, confusing months and years. The IBD community brings the light back in.”

She says as a parent, hearing other people’s stories and experiences is everything.

“I don’t know what it feels like to live inside my daughter’s body, but the insight gathered from the online IBD community helps me support her better. There’s real strength in shared stories, and there is nothing more valuable than being heard from someone who truly gets it.”

Dr. Hilary Michel, MD is a pediatric gastroenterologist at Nationwide Children’s Hospital in Ohio. She says in reading this white paper she could not help but think about how the concepts also apply to children and adolescents with IBD.

“In addition to physical symptoms, youth with IBD are also at increased risk for anxiety and depression and school absenteeism. In a period of life characterized by marked changes in development, independence, and relationships, the diagnosis of a chronic disease like IBD can be incredibly impactful,” says Dr. Michel. “Access to the IBD community for education and support is likely to be equally as important to young people with IBD and already exists in formats including in person and online groups, advocacy efforts, and camps, such as Camp Oasis. Just knowing they are not alone with IBD is so powerful. Additional attention should be paid to privacy and safety concerns when developing interventions for young people.”

Dr. Michel also feels support for parents and caregivers of youth with IBD is essential.

“Parents are at risk for missed work themselves and experience immense guilt and stress related to caring for their child. Connecting with other parents who have “been there,” sharing tips and tricks to navigate their journey, or simply having a listening ear can go so far in allowing parents to feel supported.”

The Power of the IBD Social Circle: A Veteran’s Perspective 

Suzy Burnett is an IBD mom of three and blogger at Crohnie Mommy was diagnosed with Crohn’s in 2008. She says when the white paper was published, she read, and re-read, the IBD Social Circle’s latest report.

“The first reading left me stunned by the raw reality encapsulated in the statistics. The second reading became a series of nods: “Yes, that’s me,” I found myself thinking with every single finding. I found the white paper to be fascinating, maddening, raw, and often heartbreaking. Mostly, because I have personally walked down, or known someone in the IBD community who has walked down, every single path described. Simply put, this report is SPOT ON.”

Suzy says her own patient experience deeply resonated with the segment that focused on the critical role our community plays in every aspect of life with IBD: from the shock of diagnosis and the struggle with relationships to the relentless search for answers and navigating new medications.

The Birth of a Community

“When I was first diagnosed, Crohn’s disease was relatively unknown. The internet was not the wealth of knowledge it is today,” explains Suzy. “I was handed a packet of paper, told there was no cure, and left to grapple with denial, depression, and severe flares for years.”

As Suzy grappled with her disease and the years ticked on by, she felt as though the IBD community was born.

“Or we all simply started emerging from the woodwork, bloggers, patient advocates, and a growing number of patients sharing their stories. It felt as if we made an invisible pact: to stick together, stay strong, and fight for each other. It felt like a window of hope opened: I found others. Others like me.””

Suzy says the research done in this report should be shared with every newly diagnosed patient and every “old veteran”.

“We are IBD warriors, and this white paper embodies that truth to the core. It is an invaluable resource for all who suffer from IBD, as well as for the caregivers and family members who stand by their side.”

Recognizing the importance of treating the whole self

Katie Connelly has lived with Crohn’s disease for more than 20 years. She says hearing that patients are afraid to share their emotional burdens with their HCPs is defeating and eye-opening.

“As someone who is lucky enough to have one of those GI specialists who sees me as a whole person, it is imperative that I let her know how I am feeling about my quality of life. It helps her gauge where I am both physically and emotionally with the treatments I am on,” she shares. “With the mind/gut connection being such a real thing, it needs to be instilled in every HCP’s practice to inquire on how their patients feel in life. The responsibility cannot always fall to the patient to disclose everything.” 

As a woman living with perianal fistulizing Crohn’s disease, Katie knows firsthand how isolating and complicated the patient journey can be. She credits the patient community for helping her cope and get educated about the questions she has had about intimacy and sexual dysfunction.

“I have had fistula for six years now and have both dated and ended up married while living with them. It has been far from easy, and there is a lack of understanding and communication around it. I hope to start bringing up my own sexual experiences and helpful tips through my own community, Badass with a Bad Ass in hopes to help lower those numbers. I just want us all to feel less isolated in this.”

Being wary of misinformation shared online and in person

Kelly Dwyer says she’s benefited from both in person and online IBD communities over the many, many years of living with her disease. While she’s grateful for community support, she believes misinformation is one of the greatest threats to IBD patients.

“When I attended my first support group after I was diagnosed, I found a community of people who were anti-biologic and unsupportive of many questions I had about treatments and medical care for IBDers. I was so dismayed to see that they were the only in-person support community in one of the US’s largest metropolitan areas, and promoting non-science backed theories of IBD care,” recalls Kelly. “Commitment to strict content moderation and upholding science-backed information is one of the reasons that support communities affiliated with national IBD organizations are an essential part of IBD care and connection.”

While she agrees the online community is beneficial, she also wants patients and caregivers to always have their guard up and be aware of the misinformation and opportunists who go after vulnerable IBDers by attempting to spread fake cures and push “snake-oil” treatment to a make a quick buck.

“As with many chronic illness communities, the newly diagnosed are uniquely susceptible to bad actors because of the desperation and grief that comes with being diagnosed with this incurable, devastating disease,” says Kelly.

While she believes many patient advocates seek to promote accurate and data-driven information, such as advocates like Tina Aswani-Omprakash and Brooke Abbott Abron who are cited in this study, Kelly wants to warn others that just as many others are publicly sharing their support for dangerous treatments, unregulated supplements, and potentially harmful lifestyle and diet choices.

“National organizations, physicians, patient advocates, and support communities like IBD Social Circle are doing their best to create easily accessible, data-driven, and science-backed resources for education for IBDers at all levels of managing their disease, and from diverse cultural and racial backgrounds. Making sure these resources speak loudly and spread far online will be a vital step to combatting the harms of misinformation. We all need to do as much as we can to educate and inoculate fellow IBDers against the dangers of anti-science rhetoric,” advises Kelly.

The financial trade-off and workplace woes with IBD

Ian Goldstein has lived with Crohn’s since 16 years old. The white paper’s discussion on disclosing diagnosis in the workplace and requesting accommodations hit home for him.

“I was fearful of mentioning my disease on job interviews and at work because I did not know if my co-workers would view me differently, if they would think I was less equipped for my role or more expendable. For a long time, I had to get weekly iron infusions, and I don’t know if my employer didn’t like that I worked remotely because of this, says Ian.

The white paper highlights a 2024 survey from the Crohn’s & Colitis Foundation that found more than 40% of people with IBD have made significant financial trade-offs to afford their healthcare, including giving up vacations or major household purchases, increasing credit card debt, and cutting back on essential items such as food, clothing, and basic household items.

“YES! 1000% YES. If I ever take a vacation, it is a weekend trip upstate because I need to make sure I have money set aside to afford my one thousand dollar a month health insurance premium in addition to the deductible and copay costs. If healthcare didn’t cost so much, my life would look quite different,” says Ian.

Everything from career impact to diet resonated with Ian. The focus in the research on foods and beverages that are staples for most but may be on the list of foods people with IBD should avoid (such as fried or greasy foods, spicy foods, sugar-sweetened drinks, and whole-fat dairy). Ian believes it’s important that people understand that it is not just the “unhealthy” or “junk” foods that can exacerbate symptoms.

“For 10 years I avoided vegetables and nuts completely because they put me at risk of having a bowel obstruction. The same foods that would make me healthy could also send me to hospital,” explains Ian.

Falling back on community for overall well-being and treatment decisions

The white paper highlights that, through IBD community engagement and support, patients have reported positive impacts on:

Physical well-being and treatment decisions

  • 39% reported that it has helped them identify ways to make improvements in their physical health and well-being
  • 39% learned how to improve their ability to communicate with their HCPs
  • 39% became more informed about IBD treatment options, including different treatment options they did not know about before
  • 32% learned how to better advocate for themselves with their HCPs

Ian couldn’t agree more, “Community has been a game changer for me. Because of two friends I met from social media, I learned about an amazing surgeon in New York who did an outstanding job with me in 2025, and I haven’t felt this good in years.”

He puts on comedy shows in New York centered around healthcare and because of one show called, “The Autoimmune Saloon,” Ian crossed paths with an audience member who mentioned Intestinal Ultrasound. “No doctor had ever mentioned it to me, but this random audience member did. Because of her, I’m able to get this test, which is much less invasive and informative when it comes to my Crohn’s. This is how community makes an impact: we teach others what we know, things that doctors may never think to tell us.”

Facing the music and fighting the stigma across all races and cultures

According to the white paper, up to 84% of adults with IBD feel that there is perceived disease-related stigma against them, which results in social stereotypes making them seem unreliable or antisocial.

IBD has historically affected White populations at a higher prevalence than other groups; however, the research shows the incidence of IBD is increasing in all races and ethnicities across the US, including in people who are Black, Hispanic, Latino, and East or Southeast Asian. Research also suggests that Black, Asian, and Hispanic individuals with IBD may have a higher incidence of more severe disease.

Kimberly Hooks says, as a Black woman living with IBD, she knows exactly what it feels like to be dismissed, overlooked, and told that her symptoms didn’t fit the picture.

“I was diagnosed late, and even after that, there were delays in getting the medication I truly needed for my severe Ulcerative Colitis. That delay cost me my colon. My story isn’t unique; it reflects what so many Black and Brown patients experience when our pain is minimized or our symptoms aren’t taken seriously,” Kimberly shares. “That’s why this research matters so much. It confirms what we’ve been living. IBD does not discriminate, and our communities are being affected at rapidly increasing rates. This is why I advocate, because visibility saves lives, and every person deserves to be heard, believed, and treated with quality care.”

Kimberly went on to say how incredibly grateful she is for the IBD Social Circle creating a safe space for patient voices and grounding this work in real lived experiences.

“Partnering with advocates to highlight our real stories and pairing those stories with research exploring the physical and psychosocial factors impacting patient care is powerful. It shows the benefits of community and how connection can support people with IBD in every part of their disease management. This kind of work gives me hope. When patients and community come together, we don’t just raise awareness, we help shape a better, more equitable future for everyone living with IBD,” she says.

Acknowledging the struggles IBD can present in motherhood and beyond

As a patient leader and an IBD mom of two small kids, Michelle Pickens appreciates the white paper for a multitude of reasons, especially the notion that we can appear “fine” even while we’re struggling. She also valued the discussion around the wide range of symptoms patients face and how this variability can delay diagnosis and access to support.

“That “in-between” period—when someone is sick but unsure where they fit or where to turn—is incredibly challenging. You experience symptoms consistent with IBD, yet you don’t quite feel part of that community without a formal diagnosis,” Michelle explains.

The section of the white paper on remission really resonated with Michelle. There is often an expectation that once you begin treatment, you will immediately feel better, but that is not always the case. She says it’s important to acknowledge the need for community support when clinical measures indicate remission, but physical symptoms persist.

“I was glad to see the impact on the family unit addressed, especially in areas such as domestic responsibilities and parenting. These are areas where I personally struggle at times. In the workplace, accommodations can be requested to help manage IBD symptoms, but parenting offers no such structure,” Michelle shares. “As a mother, it can be difficult to find someone who can step in and keep things running the way you would, so the responsibilities often fall back on you, even when you’re unwell. This contributes to significant “mom guilt,” and while mom communities exist, the parenting experiences of those without chronic illness differ greatly from my own.”

Addressing mental health struggles

The white paper reveals that more than half (52%) of people with IBD consider the impact of IBD on their mental well-being as negative. Other research studies have shown that individuals also experience depression and anxiety—with as many as 40% and 30%, respectively, experiencing these comorbidities, even while in remission.

The body image issues that stem from IBD such as weight loss, hair loss, steroid-related weight gain, ostomy bags, fistula, and other extraintestinal manifestations make life feel like a minefield. We are constantly up against the unpredictable nature of living with a disease that can rear its ugly head at any given moment. We are constantly forced to pivot and make decisions that often have a direct impact on our overall body image. I remember when I was in college (prior to my Crohn’s diagnosis) that I loved being on camera, working in TV news. Fast forward to five months post-graduation and three months post-diagnosis, and I was mortified anytime anyone tried to take a picture of me. Looking in a mirror was a stark reminder of what I was now and what I used to be.

These photos were taken 3 months apart. Pre-diagnosis and while on 22 pills a day.

Please know that if you struggle with this, you are not alone. As the white paper notes, “as many as 75% of women and 50% of men experience body image issues because of their IBD.”

Final thoughts

This white paper is a gift to the IBD community. As someone who was diagnosed with Crohn’s in 2005, I would have given anything to have a resource like this at my fingertips to validate my struggles and recognize my fears. We are at a pivotal point in patient advocacy and leadership where we can help shape the future of what it means to live with IBD and thrive despite the dark days.

Dr. Matthew Ciorba, MD, a gastroenterologist at Wash U in St. Louis says, “This work offers patient-identified, doctor-approved insight. It brings together perspectives that clinicians alone often cannot fully grasp. The document fills a unique niche in the IBD space. It bridges the lived experience of patients with the expertise of leading clinician advocates. There is truly nothing else quite like it.”

Our community, everyone from patients to caregivers, and medical providers, is so unique. For many of us, these connections and friendships (whether online or in person) have helped us to reclaim a sense of purpose within our disease journeys. My hope is that medical providers and GI psychologists use this research to empower and educate the community by providing this incredible research to patients and caregivers.

Check out the Executive Summary of the White Paper

For Patient/Caregivers

For HCPs

How to be your own best advocate during infusions

Leave a comment

You’re told by your gastroenterologist you need a biologic to treat your IBD and that medication is received through infusion. Thoughts race through your mind–what’s it going to be like hooked up to an IV receiving your medicine? It’s completely normal to feel anxious, nervous, and uncertain. I’ve done self-injections since 2008, and never have needed to receive my medication through infusion, but I know that’s not the case for many.

This week on Lights, Camera, Crohn’s we hear from patient advocate Jenna Ziegler. Jenna was diagnosed with ulcerative colitis in 2014 and has recently added enteropathic arthritis and a rare autoimmune non-alcohol-related liver disease called primary sclerosing cholangitis (PSC) to the list.

Over the years, Jenna has learned how to prepare for infusions so that she can walk into the outpatient center with confidence. Check out her empowering tips for doing so—whether your infusions are at a medical center or at home!

Do Your Prep Work

  • Know if you’ll be given Benadryl. Some biologics require pre-medications that help prevent adverse reactions. These meds may include Tylenol, prednisone, or Benadryl. Find out ahead of time if you’ll be given Benadryl. Knowing you’ll be sleepy at and after your infusion can help you decide if you’ll need a driver and if you need to make arrangements for the rest of your day.
  • Plan out the rest of your day. You may be tired after your infusion—especially if you’re given Benadryl! Weeks before your infusion, make proper post-infusion arrangements .Maybe you’ll want to take the day off work or arrange for childcare so you can take a long nap or reschedule that evening’s outing to another day. Jenna encourages you to schedule time in your calendar to recuperate after the infusion.
  • Know your dosing and required blood work. By knowing your dose and what labs that will be drawn, you’ll feel more in control of your day. Ask your doctor for your dose and what (if any) labs the nurse will draw at your infusion. Then, when you arrive, you can double check that these things are correct.

The Day Before Your Infusion

The day before your infusion is critical: make sure you’re drinking enough water! 

“Infusions require IVs, so it may ease your nerves to do everything in your power to make your veins as plump and visible as possible. I drink one gallon of water the day before my infusion. I chug 32 ounces every three hours and set reminders to keep me accountable. When I do this, my infusion nurse almost always gets my IV in with one poke! Also, a nurse told me that sodium retains water, so eating salty snacks the day before will also help keep water in your veins. Of course, run this by your doctor first!”

The Day Of your Infusion

Today’s the day! Here are three tips to help remove some of those infusion-day nerves.

1. Eat a proper meal. The day of your infusion, you want to fuel your body with healthy foods. This means a balanced meal with both protein and carbs. This is especially important if you’ll receive Benadryl or get blood drawn! 

2. Dress in layers. One of the best things you can do for yourself is make sure you’re comfortable for your infusion. 

“I find infusion centers very cold, so I suggest you dress in layers—just make sure you choose something where your veins are easily accessible. I tend to wear warm shoes, comfy pants, a long-sleeved shirt over a tank top, and a sweatshirt. Cozy and practical!”

3. Bring entertainment. Different biologic infusions vary in length, so if you’ll be there for a while, bring something to keep you entertained! Some of Jenna’s personal favorites are: books, journal, laptop, headphones, and snacks. If you receive home infusions, be sure to gather your supplies by your couch or the location in your house where you plan to receive the medication.

At Your Infusion

When you arrive at your infusion center, you’ll check in, probably sign some forms, and your nurse will show you to your chair. It’s okay if you’re feeling nervous. But remember, as the patient, you are empowered. Here are Jenna’s top tips to ease your nerves.

  • Ask for a warm blanket and pillow. Not only will this help you get comfortable, but placing a warm blanket over your arm will help prepare your vein for the IV.
  • Tell the nurse which arm/vein you prefer. Don’t be afraid to tell your nurse which vein you want them to poke. They’ll probably ask, but if they don’t, don’t be afraid to voice your preference.
  • Take your Benadryl slowly. If Benadryl is one of your pre-meds, they’ll probably either give you a pill or push it through your IV. If it’s via IV, ask the nurse to go slowly. Pushing the syringe too fast may make you feel lightheaded or nauseous. Again, don’t be afraid to speak up.
  • Confirm the info on your medication bag is correct. When the nurse is hooking your medication bag to your IV, it may make you feel better to see the label for yourself. Ask the nurse to show it to you, and you can personally ensure it has the correct patient name, medication, and dose. 

After Your Infusion

You did it! Your infusion is over. Best of all, you’ve already planned out the rest of your day, so now you don’t have to stress about your to-do list. 

“I encourage you to listen to your body—you might want to take a nap, take a hot bath, or have a relaxing night in with your family and pizza delivery. You’ve had a long day and you deserve to destress and relax.”

Remember, You Are Empowered

Over time, getting your infusions will become easier. Normal. Routine. And, one day, maybe even relaxing.

“I would have never thought that I’d find peace in my infusion days—these days that once made me nervous and stressed. But I now see my infusion days as relaxing, self-care days. This will come with time, and it starts with one thing: remembering that you are strong, empowered, and your own best advocate.”

Connect with Jenna:

Website

Instagram

Facebook

Twitter

59 marathons and counting: How this IBD warrior perseveres despite her disease

Leave a comment

When you think of a marathon runner what words come to mind? Grit, resilience, drive, focus, strength…the list goes on. Michelle Ladonne, 34, of Massachusetts, isn’t your typical long-distance runner. Not only was she diagnosed with Crohn’s disease in 2010, but she’s also managed to participate in 59 marathons in 35 states and 3 continents. Yeah. You read that correctly. Incredible, isn’t it?!

Like many of us, Michelle is the first person in her family to be diagnosed with IBD. When she was told she had Crohn’s, she frantically started Googling from her hospital bed. All she remembers hearing the doctor saying are “lifelong” and “no known cure”. She was certain she’d been handed a death sentence. Her life, at age 23, flashed before her eyes.

Going the distance

As time passed, Michelle learned how to listen to her body better. She says she’s become better at determining whether pain is a “routine Crohn’s symptom” or an acute issue that needs immediate medical attention. Finding the balance of when to push through and when to rest has enabled her to feel more in control of her life and her disease.

“I used to think that the ideal was to never let Crohn’s hold me back from reaching my dreams, or to not let Crohn’s become an excuse. But the reality is that I live with a chronic condition, and despite all the determination and effort in the world, sometimes Crohn’s wins, and I need to be ok with backing off, resting, and focusing on my health,” Michelle explains.

She admits—she doesn’t always listen to her body. She’s ran some races while in the middle of a flare or not long after a hospital discharge.

“I think with experience – both with running and managing Crohn’s symptoms – I’ve learned when I can push through the symptoms, or when I will make things worse if I don’t back off. I try to listen to my body and accept that sometimes not running is the safest and healthiest choice – whether that means skipping a training day, missing a race, or twice coming to that realization mid-race and walking off the course.”

A team effort between care team and patient

Michelle recalls her experience running in the 2018 Berlin Marathon while in the middle of a Crohn’s flare, about a month after being hospitalized. She says her GI was not overly excited about the idea of her traveling out of the country to run a full marathon.

“My abdominal pain wasn’t well controlled, and I was underweight after having been on a liquid diet for several weeks. But my GI knew how important it was to me and supported me. I started the race knowing that if I didn’t feel well, I could slow down or walk, and worst case, I would stop. I started at a conservative pace and focused on hydrating and tuning into how my body felt.  I remember seeing my friend cheering at mile 16, and I ran into her arms and exclaimed, “I am doing it!  I’m going to finish this!” 

Crossing that finish line felt like the biggest victory for Michelle. Right after finishing the race, she texted her GI doctor a photo wearing a medal and thanked him for his support. True to form, Michelle’s GI reminded her that beer is a clear liquid, and since she was in Germany, she should have one to celebrate! 

Persevering through Crohn’s and running

Michelle says having the mindset to persevere through life with Crohn’s and running marathons is similar. She says there’s an adage in marathon running, “when your legs can’t run anymore, run with your heart.”

“Miles 20-26.2 of a marathon bring some of the most brutal pain and physical exhaustion imaginable. At that point, you learn to trust that you are strong enough, tough enough, and brave enough to keep moving forward. You learn to push on when you feel like giving up, because forward is the only option,” says Michelle. 

During a recent 22-day hospitalization, she was in more pain than ever before. COVID visitor restrictions left her feeling lonely, anxious, and afraid. She had to draw upon that same reserve of mental strength as at mile 20 of the marathon. She was physically and mentally spent but knew that digging deep and pushing forward was the only option.

“Just like in running marathons, I had to trust in my experience; I had overcome other challenging situations when I wasn’t sure that I could, and this was just one more challenge that I would eventually overcome.”

Michelle’s advice for fellow IBD runners

  • Figure out how nutrition factors into your running – specifically what you eat and drink before you run. It can be different for everyone. Some of it is trial and error. If running a shorter distance, Michelle doesn’t eat 2-3 hours prior. For longer distances, fueling becomes more important, so she’ll eat something soft and “safe”, like white toast with peanut butter and honey.
  • Plan your route in advance and evaluate the bathroom options.  For longer runs, particularly if you are flaring, try to be strategic about running in locations with bathrooms. Think about local parks, gas stations or fast-food places (support those businesses after your run!).  In a pinch, construction porta-potties work, too. 
  • Don’t perseverate on the bad runs. You’ll have them – the days where everything hurts, you are exhausted, and it’s just a miserable kind of slog. Choose to celebrate the victory of having made it out the door. Know that just like Crohn’s, the bad days happen, but so do the really good ones, and that’s what makes it all worthwhile. 

Not allowing Crohn’s to keep her on the sidelines

Michelle is grateful she’s able to run, and do what she loves, despite her disease. She knows not everyone with IBD is able to be physically active. While Crohn’s has sidelined her at times, it’s never completely robbed her of her passion or changed her focus. On the difficult days, Crohn’s has made her even more appreciative of running and the gift that it is to her.

“On the days when I don’t feel like running – it’s too cold, too hot, too rainy – I remind myself that I don’t “have” to run, but I “get” to run.  Not everyone is so lucky, and I don’t take that for granted. Having Crohn’s, it is easy for me to think of my body as somehow broken or defective. Running has helped me to appreciate that my body is capable of some amazing things.  Running has taught me to focus less on what my body looks like (the weight fluctuations of flares and steroids can be tough!) and more on what my body is capable of.”

Taking steps to control fatigue

Even though Michelle clearly has magnificent endurance and strength, it doesn’t mean she isn’t familiar with fatigue and that makes even the most basic daily tasks feel insurmountable. If she’s feeling that overwhelming sense of fatigue, she’ll skip a run or lay on the couch with a heating pad and watch Netflix like the rest of us. At the same time, she says it’s important to distinguish between physical fatigue and just not feeling motivated to go for a run. She tries not to let her Crohn’s become an easy out during the long Massachusetts winters, or in the pouring pain, or even after a long day of work.

She currently takes 6MP and is on Entyvio every six weeks to manage her IBD.

Running goals now and in the future

Since 2016, Michelle has been focused on running a marathon in each of the 50 states. COVID put a hold on that goal, but she hopes to get back to traveling soon so she can cross the finish lines in every state.

“During COVID, since I couldn’t travel, I started focusing on running every street in the towns south of Boston. So far, I’ve finished 11 towns and over 4,000 streets. I have enjoyed exploring so many interesting places close to home and seeing all the history in southeastern Massachusetts. I am toying with a goal of running all the streets in Boston – I think that may need to happen!”

Michelle has also been checking off all the Marathon Majors—New York, Chicago, Boston, and Berlin.

She underwent a hemicolectomy—the removal of a portion of her large and small intestines in March 2021 and was readmitted two weeks after surgery with blood clots in her abdomen. At that point, she was diagnosed with a clotting disorder, in addition to endometriosis in her bowel. After 22 days in the hospital, and six weeks off from running so she could heal, she’s started to slowly build her mileage back up as she regains her strength. Michelle ran a 5K a few weeks ago and is running a half marathon later this month. Her main goal—to run the London Marathon in October, and potentially a few other fall marathons. Once she finishes London—she’s planning a trip to Tokyo to complete the Majors.

Michelle enjoys sharing her patient journey—the ups and downs, the blood, sweat, and tears, and everything in between, in hopes her experiences might help others feel less alone and to know that anything is possible.  From weeks in the hospital to completing a 100-mile ultramarathon, she’s done it all, all while living with Crohn’s disease.

Connect with Michelle on Instagram: @run4life262

IBD Motherhood Unplugged: Taking on the trials of Crohn’s, infertility, and adoption

Leave a comment

When Megan Cape of Georgia was diagnosed with Crohn’s disease in January 2004 at the age of 14, she didn’t know what the future would hold in terms of pregnancy and motherhood. After years of doctors dismissing her excruciating pain as a stomach bug or a reaction to stress, she finally received an answer. During her initial hospitalization, she had an abscess the size of a softball in her abdomen that was pushing on her spine. She was also going septic. She was rushed to surgery where surgeons removed the abscess and part of her intestine, ultimately saving her life.

Fast forward to her college years and Megan met the love of her life and future husband, Colton. She studied to be a Child Life Specialist, a career near and dear to her heart since she spent so much time in and out of the hospital growing up. One of her worst flares happened on graduation day. She was able to muster up the strength to walk across the stage and grab her diploma, but then had to be carried to the car. That week—CT scans shows she had five strictures (narrowing in the intestine which doesn’t allow food to pass through). At this point, her wedding was less than a month away. Her care team delayed surgery so that she would be able to walk down the aisle. 

“On the day of my wedding, I couldn’t even take a bite of food because the pain was so intense. After our wedding and honeymoon, my health declined quickly and got to the point where I couldn’t keep water down. I was throwing up all day and night and my family was taking turns staying up with me. I had at least one ER visit a week, but, somehow, the doctors kept missing how bad things were and would send me home,” said Megan.

She ultimately landed in the hospital for five weeks, as a 23-year-old newlywed. At the time, she wasn’t thinking about children. Megan was focused on getting better and placed faith in God’s hands that when the time would be right, she would be a mom. That was until she went into her GI doctor following the hospitalization and her second surgery. There, she was told she would never have children. Megan was devastated, as you can imagine. This week’s IBD Motherhood Unplugged sheds light on navigating this heartbreaking realization and how adoption changed Megan and her husband’s lives in the most beautiful way.

The unforeseen miracles in the making

Much to Megan’s surprise, three years into their marriage, she got pregnant the first month her and her husband started trying. Unfortunately, they lost that baby. Heartbroken as they were, they were hopeful they’d get their rainbow baby. Each time, getting pregnant happened easily, but time after time, they miscarried.

“Interestingly, God laid adoption on my heart at such a young age. I always knew I wanted to be a wife and a mom, and I always saw myself adopting. But I still felt so many emotions, wondering if and when it would ever be my turn to carry a baby.”

After four miscarriages, they decided to seek guidance from fertility specialists. It was determined that because of Megan’s Crohn’s and past surgeries, the embryos weren’t attaching correctly to her uterus and blood clots were forming, causing her to miscarry. Her physicians believed IVF was her only option, and she was ready to jump in with both feet. Megan and Colton went through all the testing and blood work, but everything came to halt when her doctor conveyed his worries about complications with egg retrieval and such in Crohn’s patients. Megan said the unknown of how her body would respond to IVF in addition to the daunting cost of it all, caused them to re-think their approach to family planning.

Preparing their hearts for something bigger

While in waiting, Megan feels God kept bringing amazing adoption stories in front of her. Stories that reminded her of when she was a little girl and told herself that would be part of her family one day.

“After years of TTC (trying to conceive) and miscarriages, I approached my husband and brought up adoption. I was truly shocked by his response because, without any hesitation, he said, “Let’s do it!” We both had an amazing peace about it and quickly began the adoption process. We had no idea what all goes into adoption and, woah, it’s a lot!”

Megan says adoption was the best and hardest thing they’ve ever done. She credits much of their “success story” to their amazing support system of family and friends who rallied around them to help raise money, to encourage them through the journey, to let them cry on hard days, and celebrate the exciting milestones.

“Nine months into the adoption process, and a month after being an ‘active’ waiting family, we got the call. A birth mom had picked us! She fell in love with us, our story, and our family after looking at our profile book. We were going to have a daughter in 3 short months!” Megan did not include that she had Crohn’s in their adoption profile book, but shared she was unable to have children. 

The blessing of Vivian Rose

Megan and her Colton’s daughter, Vivian Rose, was born October 14th, 2019. She is the answer to years and years of prayer, their miracle baby, and the light of their lives.

“Managing a chronic illness when you’re a mom is definitely hard at times! Thankfully, my Crohn’s has been under control since Viv was born and I’ve just had a few bad days here and there. Because of COVID-19, my husband has been working from home for the last year. So, on my hard days, he will take Vivian for a few hours to run errands and such so I can rest,” says Megan. “I definitely think it takes a village to raise kids in general, but, even more so, when you have IBD.”

Since becoming a mom, Megan has taken her health more seriously.

“I don’t ever want Viv to say, “Ugh. My mom is sick again.” And I don’t ever want to miss out on her day-to-day life because I’m not feeling well – as unrealistic as that may be! I have been much more intentional about eating foods that make me feel well and give me energy. I also make sure to listen to my body more and I try not to push myself as much as I always have!”

The main IBD-related symptom Megan has struggled with recently is fatigue—the kind of fatigue where you feel like you could sleep for two weeks straight and still wake up tired. 

“I get frustrated with myself, sometimes, because I don’t have the amount of energy other mamas do, but I do my best and I know that’s all I can do.”

The role of faith through IBD and infertility

Megan says she never questioned God’s plans for her life when she was diagnosed with Crohn’s during her teenage years, but infertility made her do so.

“It was, truly, the loneliest and darkest point of my entire life. I had a constant ache in my heart and the sadness I felt was unreal. As one friend after another told me they were pregnant, I felt like I couldn’t breathe. I was so happy for everyone around me, but it did make it that much harder. I felt so left out and so alone. I remember, so clearly, God speaking two things to me during this time: The age 29 and the thought that I wasn’t going to be left out.”

Megan wishes she could go back in time and tell her 26-year-old self what she knows now. 

“I wish I could tell her that everything is going to be okay. I wish I could tell her that 29 is the age she will become a mama to the most perfect baby girl. I wish I could tell her that God has big plans for her family, and he has not forgotten about her, but that His timing is perfect.”

Megan’s advice for IBD mamas in waiting

Megan’s best advice—do not give up. Lean into your spouse because they are not only serving as a caregiver for your IBD, but they are also hurting about the struggle to have a family. If you become an adoptive family, you’ll see that your child is handpicked for you and that the make-up of your family will be knit exactly how it was meant to be.

“We would love to give Viv a sibling, but, at this point, we are just enjoying our girl and soaking up every minute with her! Adoption doesn’t cure infertility – meaning that it is still hard sometimes that we can’t just decide to give Viv a sibling and do so easily! And I will never have a big belly or carry a baby to term. But that’s okay! If God calls us to adopt again, we will do so. We may even go the surrogacy route or Vivi may be an only child. I know, if God wants us to grow our family, it will be made obvious and we will trust Him and follow His lead.”

Megan says she refuses to allow her Crohn’s disease to define her, even though it’s dictated and shaped much of her life journey. Her IBD is the reason she can’t have kids. The reason adoption was laid on her heart at a young age. The reason she’s mom to Vivian Rose. The reason she’s disciplined. The reason she chose her college major. The reason her faith and her marriage are so strong. And the reason she has the perspective and maturity to understand that despite the setbacks and trials placed before her, she still lives a blessed life that she is grateful for.

Connect with Megan on Instagram: @mrsmeggcape

How a physician with Crohn’s in Ethiopia is helping others with IBD cope

1 Comment

She’s a physician in Ethiopia looking to pave the way for those with IBD. She understands the need because she was diagnosed with Crohn’s in August 2017 at age 22 while she was a fourth-year medical student. After suffering from debilitating symptoms for eight months, she finally received a diagnosis. Dr. Fasika Shimeles Teferra says in her home country and in developing countries, she had always been taught that inflammatory bowel disease was non-existent. She felt isolated and alone as she embarked on her journey with chronic illness. There were no resources. No support. She had no clue where to turn when it came to being understood and knowing how to navigate nutrition.

In her school of medicine, an IBD diagnosis was morbid. She was told if she continued to learn about her illness, she’d die from the stress.

“Despite my medical background, I expected death to be imminent. The breaking point which later turned out to be a turning point for me, was when I was suffering from ovarian cyst torsion, explained Dr. Teferra. “Even though I was in remission at the time, every OBGYN who saw me in the ER refused to operate on me. One doctor refused to operate on me because I’m a “complicated patient with IBD”. He wanted to wait to see if pain meds will help solve it.”

Luckily, one doctor decided to operate on her, but unfortunately, she lost her left fallopian tube and ovary in the process. At age 23, she lost half her chance of being able to conceive a child. Her Crohn’s relapsed a few weeks later and depression set in. (Note: Luckily, she is due with her first child in June!)

“I went to my doctor and told him I was quitting med school (I was 5th year at the time and just starting my medical internship). But what he said changed me forever and made me feel less alone. He told me he was treating multiple IBD cases and that my disease was much more common in Ethiopia than most thought. He also told me Crohn’s was manageable with medication.”

Holding onto new hope

With a renewed sense of hope, Dr. Teferra started advocating for herself and looking for local support groups to connect with others who lived with IBD. The problem—she couldn’t find any! She joined a Facebook group based in the United States and recognized the need for support in Ethiopia.

“I reached out to a couple of gastroenterologists here in Addis and told them I wanted to start a support group in Amharic focusing on sharing experiences, supporting one another. My hope was to help others who were struggling with coping with their diagnosis. I thought sharing my story would make a difference in someone’s life.”

Launching Crohn’s and Colitis Ethiopia to make a difference

After speaking with multiple doctors, Dr. Teferra decided to start an organization that would not only focus on support groups, but also advocacy work for policy makers. The last published data on IBD in Ethiopia dates back to 1990s! She recognized this lapse in research led to major gaps in treatment for IBD patients. This inspired her to launch Crohn’s and Colitis Organization Ethiopia in January 2020. When the COVID-19 pandemic hit in March 2020, it put everything on hold as the world stood at a standstill.

Even though the organization exists, Dr. Teferra is struggling to garner participation in support groups, because sadly the stigma of IBD leaves many in Ethiopia to suffer in silence and shame. She says fellow IBD patients prefer to communicate directly with her, so she has taken it upon herself to meet them and their families to better explain their condition and how to live a full life with it.

“I try and explain to the patient and their family how they can best take care of themselves and how family members can offer compassionate and empathetic support along the way,” said Dr. Teferra. “Many people discontinue their medication the moment they experience a side effect. I’m also passionate about discussing family planning and breastfeeding. Because of my medical background, I am able to give reliable information about IBD and I am able to use my story to guide the narrative.”

Dr. Teferra also has a registered dietitian who serves as a board member for Crohn’s and Colitis Organization Ethiopia. The nutritionist can provide guidance about how to enjoy Ethiopian cuisine and manage diet in the context of cultural foods.

But Dr. Teferra is only one person and can’t address the growing need for support and care. Even though local gastroenterologists have her contact information, and she tries to meet with as many people as possible, as you can imagine, it gets to be a lot.

Bringing IBD to Prime Time in Ethiopia

During an interview about COVID-19 on national television in Ethiopia, Dr. Teferra took it upon herself to also speak about IBD.

“Since it was Primetime, I was able to reach multiple people at once and I was able to send out the message that those with IBD are not alone. I plan to use such platforms to continue to share facts about IBD and that it does exist in Addis. In the meantime, I am working hard to find a researcher who can work on this with us. We cannot challenge policy makers without evidence, and we cannot change the minds of the medical community without research.”

Dr. Teferra says gastroenterologists in Ethiopia can testify that IBD cases are increasing daily. There is lack of medicine, lack of education, and lack of understanding. Many patients struggle to afford medication and choose to discontinue it because of lack of availability.

Overall, Dr. Teferra main mission with Crohn’s and Colitis Organization Ethiopia is to improve the quality of life and health literacy of people living with IBD in Ethiopia and provide the patient community with a better understanding of their condition by empowering them to take charge of their own health.

Connect with Dr. Fasika Shimeles Teferra on Twitter: @DrFasika.

Email: fasikateferramd@gmail.com

Public Policy Advocacy—Pandemic Style: How one IBD volunteer has redirected his efforts to social media

Leave a comment

He’s not your typical IBD advocate. He doesn’t have Crohn’s or ulcerative colitis himself, but he’s extremely passionate about supporting the patient community, spreading awareness, and making a difference. John Peters’ wife, Katherine, was diagnosed with Crohn’s when she was 12. John met her when she was 21. They dated 4 years and just got married in April. As they dated and got to know one another, he had a front row seat to the challenges IBD brings about in a person’s life. Ironically, John’s brother, Bobby, was diagnosed with ulcerative colitis this past year.

John and his brother, Bobby

Connecting with the Crohn’s & Colitis Foundation

When John met Katherine, he remembers how she was a volunteer at Camp Oasis.

“I remember her coming back from camp and telling me what a rewarding and inspirational experience it was. I signed up the next year because I wanted to learn more about Katherine’s illness, while contributing to a good cause. As I reflect on my experience at Camp Oasis now, I feel like it enabled me to develop a deeper appreciation for the courage those with IBD bestow.”

John sees volunteering as a win-win, not only does it give him an inside look at IBD, but also allows him and his wife to spend quality time together. Out of all the volunteering he’s participated in, Camp Oasis takes the cake.

“The campers love sharing stores about IBD, and every camper feels connected to everyone around them. They don’t need to feel embarrassed because everyone at Camp understands first-hand (or through loved ones) the challenges that having IBD brings. It’s a pretty amazing atmosphere to be a part of and the experience has given me a different level of empathy for those who live with Crohn’s and ulcerative colitis.”

From Camp Oasis to Day on the Hill

Day on the Hill is the Crohn’s & Colitis Foundation’s annual two-day event, where volunteers from across the nation meet in Washington, DC to talk with their legislators about policies that directly impact the IBD community.

Because of COVID-19, last year, the Foundation took Day on the Hill virtual, hosting virtual advocacy trainings and organizing conference calls with Members of Congress, their staff, and Foundation volunteers. Plans for 2021 have not been announced yet.

“Day on the Hill has been my most educational experience with Crohn’s and Colitis Foundation so far. I was unaware of what legislative action could do or how much it can affect an IBD patient. My mission is to inform as many people as possible about what legislation can help IBD patients and how to advocate for it. The more people who advocate, the greater the chance for change,” says John.

John with his wife, Katherine, at the Capitol for Day on the Hill

There are two main bills volunteers have been focusing on:

Safe Step Act—This bill would reform the practice of step therapy, which requires patients to try “insurer-preferred” medications before a more ideal medication recommended by the physician. The hope is to create a more transparent and expeditious appeals process.

Medical Nutrition Equity Act—Insurance companies and other healthcare programs would be required to cover necessary foods prescribed by the physician.

“We also petitioned Congress members to join the Congressional Crohn’s and Colitis Caucus which endorses IBD healthcare protections and IBD research.”

How to get involved

John says Day on the Hill is truly a one-of-a-kind experience. He recommends anyone who may be interested to take the leap and apply to participate.

“Our day was mostly speaking with Congress members’ staff and explaining what we are petitioning for (see the bills above). I was on a team of five volunteers and each one had a chance to share how the proposed legislation affects their daily lives. It was incredible to see how just one bill in Congress can have resonating effects on so many people.”

John’s advice—to contact your local congressional representatives and discuss these bills. Click here to find out who your local representatives are. Every single person who advocates for these bills gets us one step closer to getting them passed in Congress.

Taking Public Policy Advocacy a step further

As John juggles being a full-time medical student, a newlywed, and navigating the pandemic, he’s decided to create Facebook and Instagram groups solely dedicated to educating our community about IBD legislation.

He recently launched the following social media pages:

Facebook: Crohn’s and Colitis Legislative Advocacy

Instagram: @ccla_ig

Give the pages a follow and stay up to date on all the latest IBD political news. It’s important to note John created these social media pages on his own and they are not affiliated with the Crohn’s & Colitis Foundation.

Advocacy doesn’t happen only during Day on the Hill, it’s important to join the Foundation’s Advocacy Network to receive alerts around times of action. You can do so by visiting here.

Four Things People with IBD Wish Healthy People Knew

1 Comment

If you live with chronic illness, you may often find you sugarcoat your struggles. For 26-year-old Marissa Spratley of Maryland, this is nothing new. She battles Crohn’s disease, psoriatic arthritis, ankylosing spondylitis, and interstitial cystitis. She manages her conditions with Stelara and sulfasalazine. This week she openly shares what she wishes healthy people knew about life with IBD. I’ll let her take it away.

In the chronic illness community we all know how incredibly difficult it is to have Inflammatory Bowel Disease (IBD), or any other chronic illness. We know what it feels like to get hit with a wave of fatigue so hard you have to lay down immediately. We know what it feels like when our gut is on fire from something we ate. We know what it feels like to have nausea so badly all we can do is curl up in a ball on the bathroom floor and cry. We know these things, yet when we communicate with a healthy able-bodied person, we downplay our struggles and pain. 

Why are we afraid to be honest about how much pain we’re in on a daily basis? Is it because we don’t want to make others feel bad for us? Is it because we don’t want to show weakness? Or maybe it’s because we feel like by explaining how much we suffer on a regular basis, people might know the truth about us. That even though we are incredibly resilient, we live a hard life. We struggle and we cry and we ache and there are days where we wish IBD didn’t exist at all.

The truth is, hell yeah we are strong. But we are also weak, and we are tired. We are exhausted from always having to be strong in the face of pain. We are sick of having to downplay our symptoms and our suffering to make the healthy, able-bodied people around us feel less uncomfortable. We are tired of saying, “I’m good,” when someone asks how we’re doing and we really want to say “I feel like death.” 

So, in the spirit of honesty and opening up to the very ableist world around us about what it’s like to live with IBD, here are four things people with IBD wish healthy people knew.

  1. There are days when it hurts just to breathe. 

No, I am not being overdramatic. Yes, IBD affects more than just your gut. There are days when we wake up and everything about us aches. The way I describe it, is that I feel like I just got hit by a bus. My whole body aches deep in my bones, and it can take me an hour just to get out of bed and stand up straight. Those days are some of the hardest because on the outside we look perfectly normal. Please remember that not all illnesses are visible to the eye.

  1. Good intent doesn’t always mean good impact.

We know you’re just trying to help when you make suggestions about things we could do to try to feel better. But the truth is, we know our bodies better than anyone else, and trust us when we say — if there was something we could do to make us feel better, we’d do it. When you comment about things we should try (like juicing or yoga or going paleo), it makes us feel like you think we aren’t doing enough to feel better. Our healing and health are our business, and while we know you care, if we want your help or advice, we’ll ask for it. We appreciate you understanding this.

  1. Having a chronic illness is really hard on our mental health.

IBD is hard, period. Folks with chronic illnesses not only have to struggle with our physical health, but IBD also has a huge impact on our mental health. Being chronically ill makes you question a lot about yourself — Am I a burden to those around me? Am I worthy if I can’t work? Does my chronic illness make me hard to love? It also makes you question a lot about your worth — Am I lesser than because I can’t work as long as healthy people? Will employers not want to hire me? Do I bring enough to a relationship? These are all real questions I’ve asked myself at one time or another, and I can guarantee they are things other chronically ill folks have thought about as well. The way that IBD can affect your mental health is one of the most challenging parts of being chronically ill, because it is not talked about. So, what can you do to help us with our mental health? You can remind us we are inherently worthy, no matter how “productive” we are. You can remind us that you love us for who we are in our hearts, and not what we can do with our bodies. That means more to us than we can even put into words.

  1. Ableism affects the chronically ill, too.

Many people with IBD and chronic illnesses struggle to claim themselves as disabled, and this is something I could go on a tangent about. But here’s what you need to know: IBD affects our bodies in ways that make us less able, or disabled. The truth is, in the able-bodied centric society we live in, we believe it is offensive to call someone disabled because it means they can’t do something. However, to the actual disabled folks in our community, it is not offensive at all. We own the fact that we can’t use non-handicapped restroom stalls or walk up stairs. We are not afraid to say that there are tasks we cannot do as chronically ill, disabled individuals. It is our ableist society who thinks the term disabled is offensive. It is the ableist mindset that believes by saying someone can’t do something, we are being hurtful. Because to the chronically ill and disabled community, we know that our disabilities do not affect our worth. We know that our health does not affect our worth. But now we need you to know that, too.

To all my IBD and chronic illness folks: I see you, and I hear you. I hope that the next time you have a conversation with someone and you want to be real about how much it truly sucks sometimes, you can send them this article.

To the healthy, able-bodied folks reading this article, thank you for showing up and reading to the end. I hope you learned something new about how to better support your loved ones with IBD or chronic illness.

Connect with Marissa on Instagram: @mindbodycrohns

How Crohn’s Disease Inspired Ted Fleming to Create Partake Brewing

Leave a comment

Ted Fleming of Calgary gave up alcohol more than a decade ago to keep his IBD symptoms and disease activity under control. He was diagnosed with Crohn’s disease in 2005, at age 25. Ted says he not only missed the taste of beer, but discovering new beers. Even more than that, he found he missed the social connection that comes with sharing a drink with a colleague after a hard day’s work, cracking a beer with the guys after hockey, and joining in to celebrate special occasions.

A friend suggested he try non-alcoholic beer. Ted says the problem is most tasted awful and there was almost nothing on the market in terms of variety. It was at that point Ted decided to launch Partake Brewing. His hope—to bring all things that make craft beer great to non-alcoholic beer drinkers including taste, variety, authenticity, creativity, and passion. Now 42, Ted, is a shining example of someone whose career path evolved because of and was inspired by his IBD.

I was intrigued by his patient journey and how he got to where he is today. Here’s his Lights, Camera, Crohn’s interview:

NH: How has your patient journey with Crohn’s disease the last 15-plus years helped you create a successful business?

TF: “The discipline around my own personal health has helped me as a business owner to set priorities and largely keep to those priorities. There are many distractions and potential paths to go down as an early stage business so planning and having the discipline to stick to the plan over the long-haul are critically important.”

NH: How do you manage your IBD (medication/lifestyle wise)?

TF: “Regular exercise, medication (Humira), dietary changes (limited red meat, no uncooked veggies, no alcohol), get enough sleep, and be social.”

NH: What advice do you have for those who are worried about finding a career path they’re passionate about while juggling their IBD?

TF: “I am fortunate to have had some long periods of remission, but early on I struggled and that impacted my journey to find a career that was rewarding in ways important to me. Being willing to try new things is a good way to test interests, but with IBD, we don’t always feel up to it… so knowing when to say no and being ok with that is a necessary skill that takes practice.”

NH: How do you navigate the stress associated with running a business and managing your Crohn’s?

TF: “Managing stress has been an important part of my journey and I find that when I do start to have trouble with my Crohn’s, stress is usually one of the triggers. We each manage stress differently so finding what works best for you is important and integrating regular stress relief and stress avoidance into your daily routine can pay huge dividends. Besides avoiding alcohol, I have adopted better sleeping habits, exercise regularly, plan to socialize directly with people, and largely refrain from using social media.”

NH: What type of feedback have you received from customers? Any IBD folks reach out and thank you for creating this?

TF: “We are so lucky to have some of the best fans in the world, our consumers are incredibly passionate about our beer and our mission. We get emails regularly from consumers from all walks of life who are grateful to have the opportunity to enjoy a great beer no matter what their reason for partaking. The IBD community has really rallied around us and I am incredibly grateful and humbled by their outpouring of support. It was this feedback, particularly in the early stages of the business, that helped us push through the inevitable challenges of running a startup and to this day gives us a powerful purpose.”

NH: What sets your non-alcoholic beer apart from the rest?

TF: “Partake Brewing’s beer is crafted with international award-winning recipes, is incredibly delicious, and is only 10-30 calories per can. Our beer is also brewed with four simple ingredients but is packed full of flavor. When I started Partake Brewing, I wanted to not only brew a great beer but I also wanted to bring a variety of great beers to the non-alcoholic market so anyone can Partake on their own terms.”

NH: How/where can people get their hands on Partake?

TF: “You can find Partake Brewing on shelves across Canada and the USA, but you can also have it delivered straight to your door from DrinkPartake.com. In Canada, you can find us at major retailers such as Safeway/Sobeys, Loblaws, Atlantic Superstore, Great Canadian Superstore, and the LCBO as well as many others. In the US, we are sold at Total Wine & More and select Whole Foods.”

Connect with Partake Brewing

Instagram: @partakebrewing

Facebook and Twitter: @DrinkPartake

Why IBD Forces You to Take Off the Rose-Colored Glasses and See Clearly

1 Comment

I remember the first time I put glasses on in fourth grade and no longer saw the world unclearly. I can still recall the first time I wore contacts sophomore year of high school and experienced how crisp life is supposed to look. Prior to glasses and corrective lenses, I thought my vision was how everyone else saw. I recently came across a discussion on Twitter by Jessica Caron (ChronicallyJess) about how you would describe your IBD journey at the beginning—in one word. One woman, Emily Morgan (@EmMorgan27) replied with the word blurry.

That response got me thinking. It’s spot on for so many reasons. Take yourself back in time to the first week you were diagnosed with Crohn’s or ulcerative colitis and the clarity you’ve gained and continue to gain with each year that passes.

When I was diagnosed with Crohn’s in July 2005 at age 21, I remember sitting almost stoically in my hospital bed because I was so overwhelmed by not only what the next day or week would bring, but the next hour. All my plans, all my goals, all my dreams that were once crystal clear became incredibly hazy. The thought of thinking beyond that moment almost made me feel dizzy with dread.

What does this new world of chronic illness look like?

What would be possible with IBD? Who am I now? How has my identity shifted? Where do I go from here? What will my friends think? What will future employers think? What’s it like to be on medication for the rest of my life? Will anyone ever love me? The list goes on. The vision that I had the first 21 years of my life was forever tainted.

But as the years rolled by, I came to realize the rose-colored glasses I wore prior to diagnosis didn’t give me that clear of a reality about not only my own life, but those around me. Prior to Crohn’s I just expected everything to go my way. Prior to Crohn’s I felt invincible. Prior to Crohn’s I didn’t think twice about my health and what a gift it was.

Now life is anything but blurry

Looking back over the past 15 years, my vision of life with Crohn’s is anything but blurry. As I grew older and more mature, this disease of mine made me see the world clearer than I had ever before. The darkest days have led me to the brightest, shining moments. Nothing is taken for granted. Nothing is expected, but rather overly appreciated. This disease forced me to see the strength inside myself and the resilience that I never knew existed. This disease has demanded a lot out of me and still does, but it’s enabled me to discover a newfound gratitude for life’s simplicities and provided me with superhero strength vision of who is genuinely in my life, and who is not.

It’s gotten to the point where I don’t even know if I would have been the same adult if I never got Crohn’s. My IBD is not my identity, it’s only a part of who I am. Now I credit not only my contacts, but my Crohn’s, for improving my vision.

Living life unapologetically as a Black woman with Crohn’s disease

Leave a comment

When Melodie Blackwell was initially diagnosed with Crohn’s disease in October 2018, she felt alone. Not because of how isolating IBD can be, but because she couldn’t find many people who were speaking about their journey from the perspective of what it’s like to be a Black or Brown woman in the IBD community. JPixStudio-8924 copy

“When I looked for information from the IBD organizations, I felt like there was little to no one who looked like me. Sometimes, and history shows this, we can’t be unapologetic about being a person of color. We must tell our stories in a way that seems more digestible to White America. When I started sharing my journey, I wanted to reach those in the minority community from various walks of life who felt isolated or alone, to let them know they weren’t by themselves and there is a space where they belong. With my non-profit Color of Crohn’s and Chronic Illness (COCCI), I believe that’s what I have been able to do,” says Melodie. 

Dealing with feeling “uninvited”

As a wife, mom, entrepreneur, Black woman, and Crohn’s warrior; Melodie’s view of the IBD community has multiple perspectives. At this time, inclusion and diversity isn’t one that’s at the top of the list. “In order for any organization to be inclusive, they have to have to have a deeper understanding of a community. And when it comes to those who are in the Black community, most people don’t go where they don’t feel invited. Where does that thought process come from? Let’s talk about history and “whites only” venues, seating on the back of the bus, segregation ending less than 100 years ago, and the Tuskegee Experiment to name a few things. Many of us still have family members who can discuss all of the aforementioned like it happened yesterday.” IMG_4657

When it comes to Melodie’s thoughts on not feeling invited, “I am fine with that, because personally, I go where I am not invited. Not having an invitation doesn’t mean that I don’t belong. But as a culture, that’s not a resounding thought process. I know that that can seem odd, it’s a systemic issue. If you don’t know the culture, cultural differences, and historical oppression, you won’t understand that. There are some deeply rooted healthcare adversities – they live on today.”

Leading up to her diagnosis and even today, Melodie has dealt with ignorant physicians along the way. Her Crohn’s presented differently than most. It started with random body parts swelling. She had a doctor tell her she just needed to “squeeze those parts to help the blood flow”. She’s had doctors display their implicit bias and not listen…which resulted in abscesses bursting in her colon and emergency surgery.

Health equity isn’t given, it’s fought for

It’s the inequity that has inspired Melodie to go above and beyond and amplify her voice to show others they can do the same. She launched Color of Crohn’s and Chronic Illness (COCCI) to help lift people up and let them know they aren’t alone and they didn’t choose the challenges before them. She’s received countless messages from people embarrassed about their symptoms. Melodie is driven to show there’s no reason to feel ashamed about your IBD and she’s focused on creating a space that feels safe to get answers and receive help physically and mentally. IMG_1783

“I want to empower people of color and beyond, to take control of their healthcare and not feel like they are a victim. I want them to have the resources that they need. I want COCCI to be readily available to help them find doctors, learn more about healthcare, provide a safe space to express their thoughts, help them advocate/lobby for their needs – I want health equity and to decrease the undeniable disparities in this community.”

Don’t be afraid to live

As an IBD mom and patient advocate, Melodie’s main advice is to live. IBD and chronic illness causes all of us to make changes and adjustments throughout the process, but we are still here, and we still can have full lives.

“Some days will be tougher than others, but a mindset that says, “I choose Life” every single day, will change your life in the absolute best way,” says Melodie. “You set your limitations, and you determine your victories; don’t let IBD take that away from you.”

You can follow Melodie and COCCI on Instagram:

@melodienblackwell

@colorofcci

Check out her website