The mental health burden of IBD and coping through community and therapy

When you live with chronic illness, you experience a wide range of emotions and personal experiences that shape you. Life can feel like an uncertain rollercoaster ride, you never know when the next twist or turn is going to happen. This week on Lights, Camera, Crohn’s, 21-year-old Parsa Iranmahboub, candidly shares the mental health burden that IBD brings upon a patient. Diagnosed with Crohn’s when he was only eight years old, Parsa shares the perspective of what it’s like to be a pediatric patient who has grown into adulthood. He’s currently a student at UCLA and the Education Chair for the Crohn’s and Colitis Foundation’s National Council of College Students.

Parsa explains the psychosocial component of life with Crohn’s disease and ulcerative colitis by breaking it down to anxiety, embarrassment, guilt, and loneliness. He recently spoke about this at the Crohn’s and Colitis Congress as well as on IBD Patient Insider and his powerful words resonated with me and I know they will with you, too. Here’s Parsa’s breakdown of the IBD patient experience:

Anxiety: Being a bathroom disease, there is often the anxiety of whether a patient has easy accessibility to a restroom when they are out. But there can also be anxiety related to a patient’s diet. When I was younger, I was placed on a low sodium diet due to one of my medications. If I wanted to eat out with family or friends, there would be this anxiety of whether I could even eat anything from the restaurant. There’s also the anxiety that stems from extra-intestinal manifestations. I have a history of developing fistulas. And during my sophomore year of college, my labs were not looking too good, I was flaring a little bit, and I began to worry if this meant I would develop another fistula. I began to wonder how I would deal with a fistula as a college student. How would another flare up affect my grades and my ability to get my work done? I lived in a communal style dorm, so how would a sitz bath even work? Essentially, with anxiety there can be this fear of the disease taking over my life and how can I constantly accommodate it.

Embarrassment: Embarrassment can arise in numerous forms. For one, there’s the poo taboo. But there can also be embarrassment from when you are flaring. From when you are losing weight, when you no longer look healthy, when you now look “sick.” There are the side effects from medications. From when you begin to gain weight, develop acne, and now have that dreaded moon face. Let’s not forget the impact of extra-intestinal manifestations. In 6th grade, I had surgery for a perianal fistula. After the surgery, I had to wear tighty whities with a maxi pad to help absorb the pus. It would be an understatement to describe how much I began to despise physical education. Not because I had to exercise and run around. No, I was always too active of a kid to hate PE. But because we had to change into our uniforms during the beginning of class. And I was embarrassed to be in the locker room. I was embarrassed that everyone else would look cool with their boxers, but here I was with my tighty whities and a maxi pad. And it might sound ridiculous, almost like a scene taken from the “Diary of the Wimpy Kid”, but to my sixth-grade self, looking cool and being like everyone else mattered.

Guilt: There is often the guilt of feeling like a burden for others. That others have to not only be flexible with you but that they need to make accommodations because of you. “Oh, you all want to go hiking, well I can’t because there’s no accessible bathroom.” “Oh, you all want to eat at this place, actually can we go somewhere else where I can better tolerate the food?” There can even be instances where you feel guilt for believing that you no longer are a good friend. That since you have to refuse to hang out with friends because of fatigue or pain, your friends probably think you simply don’t enjoy hanging out with them. But there can also be guilt from a non-compliant label. When I was younger, I would receive weekly injections. Soon, I began to throw up after every injection. My doctor switched me to the pill version, but it would still make me feel incredibly nauseous. So much so, that I would refuse to touch the pills. Instead, I would take the pill container, open the lid, slowly pour the pills into the lid, pour too many, attempt to pour the extra pills from the lid back to the container, and once again pour too many pills back. It was a whole process. But I simply refused to touch the pills.

Well, it shouldn’t be a surprise that eventually I became non-compliant. Consequently, I switched medications and soon developed acute pancreatitis. At the onset of my symptoms, I was out of the house and had to call my dad to pick me up because I was continuing to throw up blood. And in the car, I told him “Dad, I think I’m going to die.” Thankfully, it was an over exaggeration. But at that moment, it wasn’t.

Parsa with his parents.

Now that I reflect on the moment, not only do I feel guilty for putting myself through that situation, but for also putting my family through that. I can’t imagine being a father and hearing your son tell you those words. And all of this happened because I couldn’t get myself to take those stupid pills. So, not only was I labeled as a non-compliant patient, a patient who was too immature to take his medications, but I was now also a patient who had “hurt” his family.

Loneliness: IBD is an invisible disease. You might look at a person and not realize they are living with a chronic illness. The invisibility is both the disease’s blessing and curse. There have been so many instances where I’ve been happy to have the ability to put on a mask and pretend that everything is okay. That my friends and peers do not have to associate me with a “disease,” a connotation that I despise so much that I often introduce my chronic illness as Crohn’s and not Crohn’s disease. However, because of the invisibility, the disease can feel extremely isolating. You might not know anyone else who can relate to your experiences/feelings. In fact, despite being diagnosed at a young age, for almost a decade I refused to share my story with friends and those close to me. It wasn’t until I met an IBD patient for the first time who was my age that I began to realize the importance of a shared community.

Dr. Tiffany Taft , PsyD, MIS, a Research Assistant Professor at Northwestern University Feinberg School of Medicine, spoke alongside Parsa during that Crohn’s and Colitis panel about Mental Health as it relates to IBD. As a Crohn’s patient of 19 years herself, she offers a unique perspective for her patients. I asked her when an IBD patient expresses these feelings of anxiety, embarrassment, guilt, and loneliness how she helps people deal with the struggles.

“The first thing I do is simply listen and reflect to the person my understanding without advice or judgement. It’s important to let someone tell their story before interjecting with any sort of interpretation or the like. Then, I start with some education about how our thoughts affect how we feel and how we behave. And that these thoughts are often on autopilot or may feel like they’re on an infinite loop and impossible to turn off,” explained Dr. Taft. “My goal is to help the patient understand their thinking and learn to slow it down and take a step back from their thoughts to be able to evaluate them, and maybe either change them or not let them have as much power.”

She went on to say that from there her and her patients tie their thoughts into other symptoms like anxiety, shame, or guilt, to see patterns and opportunities for change.

“It’s not an easy process, but most people can succeed. Loneliness has been harder during the pandemic. Social distancing has created a lot of isolation without an easy solution. I encourage staying connected via video chat, texting, and social media (so long as it’s not stressful!) People say that online interactions aren’t as fulfilling, and that’s probably true. But if I shift my thoughts from this negative lens to a more positive perspective, then it can help offset some of that loneliness until we can all be together again.”

The Decision to Open Up

It takes time and patience for many of us to come to terms with our diagnosis and decide how we want to present our experience to the world. For both Parsa and me, it took us a decade to take off our proverbial masks and share our reality with those around us. Parsa says he decided to share his patient journey at the end of freshman year of college after he joined a research lab at the UCLA Center for Inflammatory Bowel Diseases. He met someone for the first time who was his age and had IBD.

“When I was talking with her, this sort of light bulb just sparked. I realized I could connect with this person in a way I couldn’t have connected with anyone else before. She truly understood the challenges I was facing or had faced. Not from a scientific or “oh, I see” perspective, but from a “oh, I know cause you’re not alone” perspective. This connection was essentially my first exposure to the IBD community, and slowly, I began to become more involved in the community.”

The Power of Connecting with the IBD Community

Parsa went from forming his first spin4 team to joining the National Council of College Leaders to becoming more involved with his local chapter in California. He then started a local support network for college students on the UCLA campus. His advice for patients and caregivers—find a support network within the IBD community.

Foundation of National Council of College Leaders (NCCL)—this group of college students from across the United States volunteers with the Foundation to provide a distinct voice for young adults with IBD. Members also connect on how IBD affects them as students, athletes, and partners in a relationship, the intersectionality that stems from a patient’s identity, and tips for having an ostomy bag, reducing stress through coping mechanisms, and applying for accommodations at school.

Parsa also co-founded IBDetermined at UCLA, a student organization geared towards providing a support network and advocacy-centered space for UCLA students with IBD.

“Even though there are some amazing national and local support groups, we noticed that there was a gap for local resources that focused specifically on the intersection between being a college student and an IBD patient. Hence, we wanted to create that more local space, where individuals could address their specific questions/concerns/thoughts relating to being an IBD college student at UCLA. It’s a space where our members can learn about accommodations that are available through our university’s Center for Accessible Education, can exchange tips and advice for navigating schoolwork and college life with IBD, can express their frustrations about the disease or the lack of university resources, and can share where the best and cleanest bathrooms are located on campus.”

Parsa says growing up with Crohn’s made him responsible at a young age. He learned about resilience. He learned to embrace the obstacles he has hurdled and to keep on pushing through even when he couldn’t immediately see the light at the end of the tunnel. Parsa says he learned to appreciate the time he felt healthy enough to live life not controlled by a chronic illness. Through the years he’s realized you can still be fortunate through a misfortune. This belief has given him a strong appreciation to make the most of the opportunities that come his way and refuse to take the easy way out.

Register NOW: IBD Insider Patient Education Program (January 30)

Calling all IBD patients and caretakers, the IBD Insider Patient Education Program is this Saturday (January 30) at 11 am CT. The virtual symposium will include IBD clinicians along with patient moderators. I’m excited to share I am one of three patients who will be speaking and sharing my experience during the live event.

The discussion will include updates from the Crohn’s and Colitis Congress, and we’ll talk about the following topics:

  • Getting the most out of your healthcare visit
  • Future therapies in IBD
  • Holistic Approach to IBD Care
  • Management of IBD Care during the COVID-19 pandemic

I’ll be teaming up with Dr. Brigid Boland, MD, Assistant Professor of Medicine, University of California, San Diego to talk about the future treatment of IBD. As someone who was diagnosed with Crohn’s nearly 16 years ago, it’s been extremely comforting to see how many therapies have become available since 2005 and all that is on the horizon. Below is a chart that was shared during the Crohn’s and Colitis Congress that shows all the therapies currently in research and clinical trials. When I started my biologic in 2008, I had two options. With each year that passes, we get closer to a cure and get more and more options to manage our disease if our current therapies fail us.

“I love the idea of designing a program with patient advocates where we are communicating to patients and their families about the latest breakthroughs in research and patient care. There’s never enough time in visits to talk about all the research going on that will impact their care now and in the future.  Ultimately, all the research and future therapies that are being studied are ways to improve patients quality of life and provide a lot of hope for everyone affected by IBD (patients, caregivers and providers),” said Dr. Boland.

As people living with a disease for which there is no cure, it’s in our best interest to stay up to date on all the latest happenings and developments. IBD can feel like a beast of a disease to be up against day after day. When you participate in learning opportunities like this that are right at the touch of your fingertips you empower yourself as you make decisions and grow through your patient journey. It’s like the education saying, “The More You Know.” As you make decisions about how you manage your Crohn’s and ulcerative colitis, as you take on flares from a hospital bed, as you navigate life milestones like career and family planning, having resources like this in your arsenal of knowledge will only help you advocate for yourself and collaborate with your care team.

It’s not too late to register! Click here to sign up and can’t wait to “see” you Saturday!

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

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.


Rolling up sleeves for a hopeful future: Immunocompromised healthcare workers with IBD share their vaccine experiences

Since the start of the pandemic, healthcare workers have carried the heaviest burden. Especially those who are immunocompromised while working in harm’s way. This week on Lights, Camera, Crohn’s you’ll hear from three healthcare workers with IBD who are immunocompromised and have received their first vaccine. It’s my hope that by hearing from these warriors firsthand that you’ll gain a sense of comfort, understanding, and perspective while also understanding the importance of debunking medical misinformation. Our IBD community is delicate and requires more expertise than simply listening to a family member or friend who “read something on the internet” or someone who has a cousin with Crohn’s (or now COVID).

Wearing several hats—IBD Mom and Relief Charge RN in COVID Unit

When Shermel Edwards-Maddox of Houston was diagnosed with Crohn’s disease in 2007 at age 24, little did she know that she’d one day lead the charge in a medical unit in the thick of a pandemic, while having two kids and a husband at home, while being on a biologic.

“It has been both physically, mentally, and emotionally draining. I imagine that every healthcare worker has been afraid however being immunocompromised has added an extra layer of fear. The emotional and mental exhaustion comes from the constant worry of “what if today is the day I catch COVID”? Every time I step onto the nursing unit, I’m aware that I could contract the virus. It’s very reminiscent of IBD and the worry of whether a flare is starting.”

Like many other healthcare workers (and the general population for that matter!), she says the roll out of the vaccine provided her with a sense of relief, but also an understanding about the importance of educating the public about the importance of getting vaccinated. As a nurse, she has a solid understanding of how clinical trials work and knows that more than 70,000 people received the vaccine between the Pfizer and Moderna trials. She was especially excited to receive the vaccine after it was found to be 95% effective. Shermel feels blessed to receive “0.3ml of hope” in a syringe and says many in her shoes feel like they just received their “second wind” after months of being beyond exhausted.

“It was quite emotional. I shed several tears in the days leading up to the vaccine. Those tears were in amazement of how grateful I am to be getting a vaccine that could spare me from this horrible virus that takes the lives of so many. When it came time for getting the vaccine, I felt pure excitement!”

Shermel’s only side effect she experienced was a sore arm, which is expected with any type of vaccine.

The COVID vaccine allows Shermel to not only protect herself but her husband, children, patients, and the community. It makes her feel hopeful to know her daughter will get to see her kindergarten teacher’s face without a mask and that her son will be able to attend his school graduation, free of social distancing. 

From an Ostomy Reversal in March to working as a clinical researcher

Caroline Perry also happens to live in Houston and after battling Crohn’s since the age of eight in 2000, she had an elective ostomy reversal surgery March 4th just as the pandemic was unfolding in the States. She takes Entyvio AND Stelara and says that even though she’s on two biologics, her physician had explained to her that both drugs have a relatively good safety profile. While she wasn’t overly nervous about contracting the virus more than the next person, she has been nervous about how her body would react to it.

As a clinical researcher, her boss, happens to be her gastroenterologist. Having her care team readily available and working alongside people she knows and trusts on both a personal and professional level has helped her cope through the pandemic immensely.

Prior to receiving the vaccine in December (2020), Caroline admits she had some initial concerns and brought them up to her doctor, which is what she recommends everyone does.

“Many people are getting all their information from the internet or by word of mouth and are neglecting to listen to our experts—some even mistrusting them. My doctor gave me lots of evidence on why she believes the vaccine is safe and debunked a lot of my fears, which I found out were fairly common questions or misconceptions regarding the vaccine. I got the information I needed to make an informed decision, and once I had all the information, I was no longer worried about getting the vaccine! I am much more concerned about getting COVID than any potential side effect of its vaccine.”

Caroline says she was so excited to receive the vaccine, not only for herself, but for all the healthcare workers that were in the room with her.

“Sitting in that chair, it hit me. I was really experiencing a significant piece of history and I will never forget the feeling of palpable relief in that room. As healthcare workers, we have heard nothing but bad news for so long, and the vaccine is a beacon and glimmer of hope, at the end of a very long tunnel.”

Due to the pandemic, Caroline and her fiancé canceled their wedding for the time being, but finally feel like they can breathe a sigh of relief. Her fiancé won’t be eligible to receive the vaccine until the last round is available, so until then, she says they will continue to practice COVID precautions and keep up to date with the latest data surrounding the vaccine.

After receiving the vaccine, Caroline still received her Entyvio that afternoon! Her only side effect, like Shermel, a sore arm. As of now, she’s working on COVID research in addition to her usual IBD research. Caroline says this past week was her first time working in the COVID ICU for a new clinical trial, and she felt a lot safer thanks to having the first vaccine.

Juggling Women’s Health while being a mom of 3

Janice Eisleben, a Women’s Health Nurse Practitioner in St. Louis, was diagnosed with Crohn’s in October 2017 while pregnant with her third child. She was initially on Humira, but started Stelara a year ago. Janice happens to work at the OB office I go to, so I know her personally and have experienced her amazing care through my own pregnancies. We connected immediately once we both discovered years ago that we were IBD moms on biologics.

She recalls how scary the onset of the pandemic was, between the limited information and the looming unknown. As a patient with IBD, on a biologic, she wasn’t sure what that ultimately meant for her well-being. When she found out the vaccine was going to start being available to healthcare workers, Janice says she was elated.

“I feel like the vaccine finally offers some level of comfort to healthcare workers who have literally been giving everything they have to take care of patients. And this is not limited to nurses and doctors! The hospital cannot run without the respiratory therapists, housekeepers, and maintenance staff—these people are truly the unsung heroes of this pandemic.”

Janice said she did not have concerns or worries about the vaccine because she had been following the clinical trials from the early stages. She says the energy she felt just standing in line to receive her vaccine was something she’ll always remember and that everyone there was beyond ready to take this next step.

“It was incredibly emotional. I honestly teared up when I received the email inviting me to schedule my appointment. I was so excited that the night before I had trouble sleeping—kind of like a kiddo who can’t sleep the night before Santa comes. This vaccine means so much for us. It means that maybe sooner than later I will feel more comfortable with my kids going back to school and participating in activities. It means that we have less worry about me bringing this virus home from work to our household, and less worry about me getting a severe case of this virus.”

She says she can completely understand why someone would be skeptical of the vaccine, but she encourages everyone to avoid the “Google trap” and to please contact your physicians/care providers to discuss it further. For anyone with IBD, Janice advises you to specifically contact your gastroenterologist. If there is anyone those of us with Crohn’s and ulcerative colitis should trust, it should be our GI!

Janice’s only side effect was also a sore arm, though she does anticipate more symptoms (low grade fever, aches, fatigue) after the second dose, because this was well documented in the trials.

Helpful Resources to Educate Yourself About IBD + COVID Vaccine

About IBD: Podcast Interview with Dr. David Rubin: A Key Opinion Leader in IBD Helps Patients Understand What to Expect with Vaccination

Crohn’s and Colitis Foundation: COVID-19 Vaccines: What IBD Patients & Caregivers Need to Know

“So, You Have An Ostomy: A Look Into Your Future and How to Support a Loved One—Part 4

For anyone with chronic illness, it’s safe to say living with a disease gives you perspective. Your patient experience and journey shapes you in ways you may never have imagined, until you’ve lived it—persevered—and can look back at all you’ve overcome to get to where you are today. In Part 4 (the final installment) of “So, You Have An Ostomy,” we dig deep into what ostomates wish they knew that they know now, how best family members and friends can offer support, and why some choose to show their ostomy and others do not.

Before we get started, here are links to:

Part 1: Coping with the Complexity

Part 2: Tips for Travel, Diet, and Bag Changes

Part 3: Recommendations for dating, intimacy, naming your stoma

What Ostomates Would Tell Themselves If They Could Go Back in Time

Brian Greenberg wants anyone who is contemplating getting an ostomy to know that life doesn’t end after surgery, it begins again. He says after being sick and thinking an ostomy would be worse, it gave him his life back. He went from being in bed and alone to being an Ironman and marrying the love of his life.

“There are a lot of ostomates out there and none of us are recreating the wheel. If you have a fear or question, chances are there is someone who already has created a solution. I went from being bedridden to completing a full 140.6-mile Ironman, which showed me anything is possible. My ostomy has allowed me to not only live a normal life, but a good life.”

Ashley Clark says she used to be scared to leave the house. Her ostomy has given her freedom that she never had before.

“Prior to my ostomy, I didn’t want to make new friends or spend time with people I wasn’t comfortable around, I had no energy and I felt like I was trapped inside this body that couldn’t do all the things my brain wanted to do. Since my ostomy, I feel like I’ve gotten myself back in a lot of ways. I make plans again and I travel and spend time with people I love. I don’t take life for granted.”

When Michel Johnson thinks about when he had an ostomy, he says it not only saved his life, but taught him to reframe the tough times. He believes he became a better person in many ways and that his level of gratitude and compassion for others grew exponentially. He’ll always remember when he had his first bag leak in public the first time he left the house after surgery.

“I was in at a grocery store and struggling to change my bag in the restroom. I got poop on my shirt. I was embarrassed. A lady noticed the supplies in my hand and the mess on my shirt when I went into the restroom. She told me she was a nurse. She had a store employee block the bathroom door and she came in to help me, even gave me her blouse to wear (she had a tank top on under her blouse). I cried and hugged her so tight. Couldn’t believe she was so sweet to me in my time of need. It’s moments like that, which change a person.”

Alison Rothbaum credits her ostomy for allowing her to be alive. She says she wouldn’t have made it beyond age 23 if she didn’t have her colectomy. Since surgery, she’s been able to travel, work, and actively participate in the lives of her nieces and nephews. She advises ostomates to cut themselves some slack and acknowledge how far you’ve come every step of the way.

“You’re learning a new lifestyle of personal care externally and recovering internally. There’ll be days you are so upset, and then there’s days you only remember you have an ostomy when you go to the bathroom. This new life may have not been what you had in mind years ago, it may not be ideal, but it’ll be ok.”

Gaylyn Henderson created Gutless and Glamorous, a non-profit organization, as a way to empower and uplift those living with chronic illness and to raise awareness and erase the misconceptions of living with an ostomy. She doesn’t want others to suffer because of the fear of being stigmatized; it’s her goal to eradicate the stigma.

“Through it all I have learned to remain constant in my beliefs and that is to not let the beliefs of others control how I view myself. I’ve learned the importance of loving myself and staying true to myself and knowing I am capable of overcoming anything. I’ve learned that one of life’s most rewarding challenges is to accept yourself for who you are and all that you are completely and consistently. I am so in love with my new body; my new body saved my life in more ways than one.”

Loved One or Friend an Ostomate? Here’s how you can offer support

Listen. Listen. And listen some more. And be there. You don’t have to know what to say, you don’t need to have the right words or give advice. Let your loved one or friend know they are not alone and don’t pretend to understand what your loved one is going through, because you simply can’t relate (unless you’re an ostomate yourself)! Ostomates say when they complain or having a hard day, they just want to be heard and believed.

Karin Thum says to find your tribe and love them hard, “It may be a friend, or maybe a family member. Someone who doesn’t have Crohn’s or ulcerative colitis may not fully understand. But the right support won’t try to understand. They’ll just want to be there for you.  Let them. It’s hard for those closest to us who love us to watch us go through what we do.

IBD mom and ostomate, Byrd Vihlen, recommends loved ones to ask questions and take the time to learn more about ostomies, the disease, and what this means going forward.

“This surgery is NOT A CURE. Knowing that you care enough to want to be educated means the world. I would also advise that going into surgery, the recovery could be very different than what is described by the doctors, prepare for that emotionally so you can better support your family/friend…and not put any extra unnecessary stress on them during a fragile time. Empathy goes a long way.”

Speaking of empathy, Tina Aswani Omprakash recalls how one of her friends once insisted on watching her change her ostomy bag. As first, Tina says she was freaking out saying no. But now, when she looks back, she realizes that was one of the most supportive experiences.

“She asked questions as I went along and was curious to understand how it worked and why people felt such a stigma around it. It made me feel like a human being and that someone actually cared and wanted to learn and support me. I’d say if you’re close family, be there when the ostomy nurse is teaching how to change the bag. Oftentimes, we are in such a rut and on painkillers that we have no idea what’s going on. Support us, ask questions, be there and take notes. It can only help.”

Kristina Schook, 24, of New York, was diagnosed with Crohn’s when she was eight. She needed an ostomy when she was in high school and says the entire experience was insanely hard on her. Her bag would constantly leak, and it messed with her self-confidence. She says she had to alter what sports she played because of the leakage, but is thankful she was never judged by her peers. When it comes to advice for family and friends, Kristina says, “Just let us rant if we are upset. Don’t tell us you understand because our intestine is literally out of our body. It’s extremely hard to deal with mentally. For me, reversal was a great option and I don’t regret it.”

Jordan Ditty says patience is key.

“This is a big change. There will be a lot of emotions around it whether it was planned and wanted, unexpected, or they were dreading it. Offer to sit with them while they change their bag, watch a movie together, bring them coffee, listen to their frustrations, hold them when they cry, they need your support. While at the same time don’t treat them any different, this ostomy did not change who they are as an individual.”

Lindsay Dickerson says if you care about someone with a digestive disability and ostomy, recognize the mental toll their patient experience can cause.

“We are shuffled from specialist to specialist, appointment to appointment. There are days we can’t function and (personally) I feel worthless as a friend, wife, mother, and person. Educate yourself on your loved one’s condition. Support them when they feel down. Help them understand it’s not their fault, even though we will feel like it is at times. On the days they need that extra help – give it to them. There are days we can’t do it all and need this help, it’s a lifetime condition. Empathy and love are what we need and the more you give of it the better.”

Showing Your Ostomy Bag to Others

Whether or not you choose to show your ostomy bag publicly is a very personal decision. Some people feel empowered by it, others prefer to be more discreet. You do you, boo boo.

Natasha Weinstein says sharing her ostomy with the world is so much fun. When she first got her ostomy, she would put duct tape all over the bag, thinking it would make it more “socially acceptable” for people to see. Then, she realized a few things.

“Number one—duct tape is uncomfortable. Number two—I was going through a lot of bags and duct just to go swimming, which made the bags heavy! Number three—the bags are already skin colored so what was I doing?! Once I got rid of the duct tape, everything got easier and all I had to do was choose my bathing suit of the day. Now it’s become routine to take a post-race photo with Ziggy out wearing my medal because we’re accomplishing and conquering life together.”

Tionna Forchion says being transparent about her life with an ostomy has been extremely fulfilling.

“I hid my bag from family and friends for many years and now I openly post pictures on social media showing my ostomy and it feels so empowering to show the love I have for myself in my entirety, and that includes my ostomy bag. It’s rewarding when other warriors on social media write me messages saying that me posting pics showing my bag has helped them embrace and love themselves flaws and all. That’s really why I do it, to inspire others to love everything about themselves and so other ostomates know they are not alone.”

Sahara Fleetwood-Beresford shares her ostomy with world so that people can see that it’s ok not to be like everyone else. She doesn’t feel embarrassed or ashamed and doesn’t think of her bag as an issue. “It is what it is—it’s part of me. The same as my moles, scars, stretch marks, etc.”

Speaking of scars (or battle wounds as I like to call them), Lindsay says, “I love showing off my ostomy.  I’ve had 14 surgeries in my lifetime at this point and the ostomy is a symbol of everything I’ve overcome and how I’ve taken the steps to improve my life for the better. All bodies come in different shapes, sizes, and abilities. I feel confident with my ostomy out and welcome anyone who has questions about it!

Payge Duerre says showing her ostomy doesn’t phase her anymore. She says it doesn’t make her feel empowered, either.

“I post for others. I show for others. I show and post because I’m 110% okay if I get hate or negative comments. I might cry if there are mean people, but I truly post and show my ostomy because I’m confident about it and hope to support others by doing so. My ostomy has completely changed my life for the better. There is no possible way I’d be this healthy version of me with my colon. I no longer shit my pants, I can travel more than five minutes away from the bathroom, I’m not missing every other day of work/school/events because of pain so immense I can’t get off the couch. I don’t have to spend an entire day every four weeks getting my infusions.”

Tina and many others I interviewed, choose not to show their ostomy or their stoma. But each ostomate said they respect the many people who do.

“I don’t feel that I need to show it to talk about it or to empower others. Culturally speaking, I think for me, it’s better left to the imagination. I do show what a stoma bag looks like and show different activities you can do with an ostomy but I think this is an individual’s choice to show or not to show and still feel empowered.”

When Life Comes Full Circle

Over the course of the past few weeks, I’ve had the privilege of connecting with more than 20 ostomates around the world who have candidly and whole-heartedly shared about their personal experience. As someone with Crohn’s who does not have an ostomy, I consider your ostomy a symbol of strength and survival. What each ostomate endures prior to surgery, through recovery, and in life, takes patience and perseverance. It takes strength from within. A strength I can’t even begin to fathom. Ostomies are a visible reminder of the often invisible battles those with IBD and other digestive diseases face while having chronic illness. It’s normal to grieve and be devastated. From what I’ve learned through these warriors, the best way to view life with an ostomy is to think of all the positive it will bring to your life and how it will improve your health and condition. Shifting your perspective and thinking of your ostomy as a gift rather than a curse seems to be the best medicine of all. Thank you for following along through this series. I hope you feel better educated about life with an ostomy and have learned something, I know I did!

Celebrating Ostomy Awareness Day (October 3rd, 2020)

This year marks the 10th Anniversary of National Ostomy Day. This day serves as an opportunity to spread awareness about ostomy surgery.

Twitter Chat (#ddhchat): Diet and Digestive Health Chat about Nutrition for the Ileostomy hosted by ostomate Tina Aswani Omprakash and Neha D. Shah, MPH, RD, CNSC, CHES Friday October 2 at 12 p.m. EDT.

Check out this Facebook Live hosted by United Ostomy Associations of America, Inc. at 12 p.m. EDT, October 3.

Run for Resilience Ostomy 5k (Virtual)—Saturday, October 3

Gali Health will be sharing videos from ostomates—connect with them (@GaliHealth) on Instagram, Twitter, and Facebook.

Helpful Resources:

Crohn’s and Colitis Foundation

United Ostomy Associations of America, Inc.

Ostomy Support Group Finder

The J-Pouch Group

WOCN: Wound, Ostomy, Continence Nurse Society

An Evening of Hope: What charity events mean as an IBD patient

There’s something special about sitting in a room with hundreds of people, all with the same goal and mission in mind—to fundraise and advance research for IBD. Over the weekend, my husband and I had the opportunity to attend the Mid-America chapter of the Crohn’s and Colitis Foundation’s “Evening of Hope” Gala in St. Louis.

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Christian and I both battle Crohn’s disease. 

As a patient, it’s difficult to articulate how it feels to attend charity events that revolve around IBD. It’s emotional. It’s uplifting. It’s bittersweet. It’s empowering.

In my 14-plus years living with Crohn’s, I spent so much of that time dealing with my disease in private—never wanting to be judged, never wanting sympathy or pity. When I started sharing my story publicly five years ago, and connecting with others who live my reality, a whole new world opened up. I realized how much support is available and how close knit the IBD community…or should I say family, really is.

The Gala was sold out. Last year the event raised $300,000—this year the hope was to meet or exceed that! That’s from one event in St. Louis—last year the Crohn’s and Colitis Foundation raised more than $80 million through memberships, fundraising events, sponsorships, and other programs.

My favorite moment of the night was listening to a fellow IBD mom and pediatrician speak about her journey with ulcerative colitis and how she’s managed to rise above and experience so much beauty in life, despite her diagnosis. As she spoke, a slideshow of photos of her three sons, traveling the world with her brought happy tears to my eyes. Her remarkable story and experience is one of many that serves as a reminder that just because you have IBD doesn’t mean it needs to hold you back from your dreams. She was diagnosed sophomore year of college, and still managed to become a doctor and have a family. B555E291-A329-4FF8-B7B3-AD7648C43500

Connecting with fellow friends, event organizers, and patients in person is a joyful occasion. I especially enjoyed the opportunity to connect with parents of children, teens, and college students who are taking on the disease. It’s my hope that events like this show them all the exciting research and hope that’s on the horizon for the future of care and treatment for IBD. Events like this are a reminder that it’s not a matter of “if” there will be a cure for Crohn’s and ulcerative colitis, but when.

IMG-3726If you’ve never attended a Crohn’s and Colitis Foundation event for your local chapter—whether it’s a patient symposium, an education event, a walk, or a Gala, I highly recommend you check them out. While it’s great to connect on social media or over the phone, nothing compares to physically being in the same room with people who are passionate about the same cause, who understand your reality, and are driven towards the same mission as you.

 

 

IBD on the College Campus: The Challenge of Academics

You’re sitting in class. The abdominal pain starts drowning out the words your professor is saying. You have the urge to go to the bathroom, but you’re embarrassed because you literally just got back to your seat from excusing yourself minutes before. You’re struggling. E85DEFFBEA08446AAED0650FA09CCB0DYour disease is making the simple task of sitting in class alongside your peers an ordeal. While you may feel alone in this moment, thousands of college students around the world living with IBD can relate to this overwhelming stress and strain.

When I put a call out on Twitter and asked the IBD community what worries and challenges impacted college students, here are some of the responses I received pertaining to academics:

“Trying to balance wanting to do well vs. taking care of myself. I would try to push past a flare to study or go to class and would end up in the hospital (15+ ER visits and 5-6 hospital stays). In the long run, pushing past it was not the best idea. IMG-0787Balance is key. Health comes first,” said Aaron Blocker, a Crohn’s patient and IBD advocate. “It sucks to have to pause college because of your health, but school will always be there, and your health is important for long-term success.”

Kristin Harris has ulcerative colitis, one of her biggest worries was offending teachers by leaving multiple times to go to the bathroom. “Knowing I may dash out of class gave me major anxiety. I always tried to secure a seat next to the door. I was terrified I’d have to run to the bathroom during a test and that made me so anxious—which only made my symptoms worse.”

The same can be said for Rasheed Clarke. He too lives with ulcerative colitis and is a vocal advocate in our community. “Biggest worry was making it through each class without having to scoot to the bathroom. Somehow, I managed to make my bathroom trips in between classes…most of the time. I also kept spare underwear with me in case of accidents, and let’s just say I’m glad I did.”

Breaking down your walls and being open with professors

Similar to personal relationships and friendships, those on campus can only offer support and help to you if they are aware you have IBD. By openly communicating with your school’s disability office and getting the proper accommodations in place, along with informing your professors, you set yourself up for greater success.

“The hardest part for me was sharing a letter written by my GI with my professors explaining my medical situation and requesting classroom accommodations. IMG-0789As a straight A student, now struggling to pass classes due to an awful flare, I was devastated that I needed to ask for help. I was appreciative of my professors’ extreme kindness and that I was granted accommodations (deadline extensions, attending a different lecture on bad days, rescheduling exams, etc). This was a profound moment that taught me it was okay to ask for help,” said ulcerative colitis patient and IBD advocate, Jenna Ziegler.

Alex Beaudoin was diagnosed with Crohn’s during her academic career. She learned the benefits of communicating with professors. “I was shocked at how understanding everyone was. IMG-0788Ask for extra time, ask for a note taker. Get in touch with your school’s office for those with disabilities. Access the support you need to be on equal ground.”

Key accommodations to discuss with your school’s disability office

As people living with IBD, most of us strive to overcome our personal limitations. At the same time, it’s important to understand your achievements and accomplishments are not diminished when you ask for help and assistance. If anything, accommodations will help you reach your goals and get to where you want to be.

According to Section 504 of the Rehabilitation Act of 1973 (as well as the Americans with Disabilities Act), public, government-funded institutions such as state and regional colleges and vocational programs, are required to make reasonable modifications and adaptations for students with disabilities that significantly impact their education, learning, or physical ability to participate in programs. Click here to learn more about disability services and your rights as an IBD patient. This pertains to all school-age children and adults, click here to check out the Crohn’s and Colitis Foundations Guide to Educational Equality.

I asked for disability accommodations which at my school, last one year and then you’re re-evaluated by their social worker for whatever your needs might be. For me, in writing-intensive classes, I was allowed extra time to submit papers. For classes with exams, I received extra time to complete the exam. IMG-7331I also can use the bathroom frequently without question, eat in class without any questions and I’m allowed more than the usual 2 absences allowed in most classes,” said Tina Aswani Omprakash, Crohn’s patient and IBD advocate. “If there are group projects and I can’t partake; I ask the professor if I can do something on my own.”

The Crohn’s and Colitis Foundation’s Mid-America Chapter is gearing up to a host a webinar tomorrow (Thursday, September 26, 2019) from 7-8 pm CT to address managing IBD while furthering your education along with finding the appropriate accommodations. Click here to register and stay tuned for Part Three of my series “IBD on the College Campus” next week.

My Cause My Cleats: How Chicago Bear Anthony Miller is Representing IBD

When Chicago Bear standout rookie wide receiver, Anthony Miller laces up his cleats to take on the Los Angeles Rams this Sunday, his cleats will tell a story. A story many may not be aware of. Anthony’s longtime girlfriend, Alexandra Pounders, has battled Crohn’s disease for nearly 10 years. She was diagnosed at age 14. IMG_4488

This Sunday (Dec. 9), Anthony will participate in the NFL’s My Cause My Cleats campaign, as a way to spread awareness for inflammatory bowel disease (IBD) and show support to his girlfriend. Anthony’s cleats will feature the Crohn’s and Colitis Foundation.

“Being able to bring awareness about IBD through football means a lot to me. When I wear these cleats against the Rams, I’m not only going to be representing my girlfriend Alexandra, but also the millions of people across the globe who suffer from this disease,” said Anthony.

This is the third year for the My Cause for Cleats effort. It’s a way for NFL players to take steps to visually show their support for causes near and dear to their hearts. Anthony and Alexandra have been together almost five years. Alexandra says Anthony has been there for her every step of the way, whether it’s attending doctor visits or motivating her to stay strong during setbacks.

“It feels amazing to know there is someone by my side who cares so much for me that they want to spread awareness about this illness. IMG_4487Anthony has seen me fight for so long. It makes me feel like I’m not going through this alone,” said Alexandra.

“We are thrilled to see several NFL players, including Anthony Miller, raise awareness of Crohn’s and colitis through this year’s My Cause My Cleats campaign,” said Michael Osso, President & CEO of the Crohn’s & Colitis Foundation. “More than 3 million Americans live with these diseases, and, like Anthony, even more are touched by them as loved ones of patients. Using their platform as professional athletes to speak out about Crohn’s and colitis not only helps educate the public about the seriousness of these diseases but also underscores how wide-reaching these diseases are and how important it is to have the support of loved ones.”

Alexandra’s advice to the IBD community is to put your personal needs first and try to keep stress to a minimum, while accepting support from others.

“Surround yourself amongst people who may not completely know what it feels like to be in your shoes, but people who are willing to be patient with you and love you on the days that aren’t so great. Focus on being the best possible you that you can be in every aspect…mentally, physically, emotionally and surround yourself amongst people who truly care about you, it’ll be so much easier to overcome the obstacles you face with this disease. Stay positive. Hold on tightly to your faith. And don’t let this disease define you,” said Alexandra.bears

Chicago is my hometown and where the majority of my family lives. As a Bears fan and as a Crohn’s disease patient advocate who was diagnosed in July 2005, seeing professional football players put causes like the Crohn’s and Colitis Foundation in the spotlight means a great deal. Check out the #mycausemycleats hashtag on social media to learn more about the cause.

6 ways to get involved in the IBD community: Advice from a fellow Crohn’s advocate

Social media often gets a bad rap. But, oftentimes in the advocacy and chronic illness space, it’s an incredible connector. A few years back over Facebook, I came to know Linde Parcelslinde Linde graduated from my high school and later moved to St. Louis. She currently resides in Atlanta, where she works for the CDC and does Policy work for the division of lab sciences.

We’re 11 years apart by age, but share many of the same experiences as women who battle Crohn’s disease. We’re both passionate about using our voice to show others they are not alone in their IBD journey. This week—Linde talks about the importance of standing tall, owning your illness and getting involved in your community to make a difference.

I was diagnosed with Crohn’s Disease at the age of six. Eighteen years ago, diagnosis was difficult for pediatric patients. After more than a year of tests and declining health, my family was given an answer and a lifelong commitment to caring for my Crohn’s Disease.

I’m 24 now. I just moved to a new city for my first full-time job. One of the first things I did when I moved was plug into the regional chapter of The Crohn’s and Colitis Foundation and see how I could get involved. Linde's story

I wasn’t always an advocate for Crohn’s and Colitis though. In fact, I never attended Camp Oasis because I wanted to go to “normal” camp where I wouldn’t be surrounded by reminders of my disease. I regret not experiencing Camp Oasis and making friends who “got me” when I was that age.

It took years to realize that sharing my story and spending time with people with inflammatory bowel disease (and their caregivers) could bring me so much peace, confidence, and ownership of every part of who I am, including how I was made.

Some people receive their diagnosis and jump into headfirst. They advocate fiercely for a cure any way they can. I’ve seen others resolve to live “normally” and spend many years outside of the IBD community, attempting to absorb the struggle and live their life without leaving a trace of disease.

With over 1.6 million people in the United States with IBD, and as one of the estimated 1 in 200 who have IBD, I would argue that with this diagnosis comes with a responsibility to advocate. For everyone with IBD, and selfishly for myself, I want better research. Better treatments. Better services. Better health.

And it’s not a lost cause.

Here are 6 things I’ve done to get involved that you can do too!

  1. Take Steps

These uplifting Crohn’s and Colitis Foundation charity walks happen throughout the year, all over the country. It’s a great way to rally your friends and family to take steps by your side to raise awareness and drive research.

2. Volunteer for fundraiser events through your regional Crohn’s and Colitis Foundation

I helped gather raffle baskets, advertise, and organize volunteers for the themed Trivia Night in St. Louis three years in a row with a great planning committee. I attended with my family and friends for the past three years!

3. Follow influencers on social media and leverage your own profiles to raise awareness!

Here are some of my favorite Instagram accounts to follow:

@CrohnsColitisFoundation (stay in the know)

@rockswithsass (crystals/mental wellness and proceeds go to The Foundation!)

@Natalieannhayden (of course!)–Thanks, Linde! 😉

@CrohnsCooking (recipes for IBD)

@ileostomy_crohn_princess (model and mom with an ileostomy)

4. You can be a listening ear or a venting pal –make your availability known if you’re comfortable with someone sharing your name with others who might want to talk. 

Some parents have referred me to their high school aged children with IBD or a friend of a friend. You can sit with someone during their Remicade treatment or Humira injection. A lot of college students and young professionals may not have family in town and it’s more tolerable with company. Try to be vulnerable. I openly talk about the realities of office life, dating, and farting, (yes, I just said all three of those things in one sentence).

5. Team Challenge! 

linde runI’m training for a half marathon and taking on the biggest fitness and fundraising goal of my life! I run every Saturday with Team Challenge ATL, they are the best!

You don’t have to raise thousands of dollars for research or share your most traumatic digestive adventure on social media…but for the sake of this community and for yourself, please own it. Own your patient journey in a way that furthers science and connects people. Because as much as I want to be your Crohn’s friend, I’d rather just be your friend 10 years from now.

You can connect with Linde on Instagram here: @thelindecity.

Linde is running the 2018 Savannah Rock N’ Roll Half Marathon November 3, for the Crohn’s and Colitis Foundation. She’s looking to raise $2,800. Click here to help her reach her goal!

Taking on IBD one step at a time: Getting empowered through Team Challenge

One of the many benefits of getting involved with the Crohn’s and Colitis Foundation is finding people locally who understand and live your reality. I became friends with a woman named Angie last year. facebook_1529431731870She’s a resilient person with a positive attitude. Her energy is contagious. This week, a guest post about her involvement with Team Challenge and how it’s enabled her to find community not just in St. Louis, but throughout the United States. I’ll allow Angie to take it away…

My journey began with inflammatory bowel disease began in April 2011. For me, symptoms went from non-existent to emergency surgery within a month of first waking up with cramps and diarrhea. I had been a healthy active person up to that point and I was a month shy of my 46th birthday.

I was first diagnosed with ulcerative colitis, but that diagnosis was later changed to Crohn’s disease. Due to reoccurring abscesses, my GI doctor ordered some additional tests that showed I have Crohn’s. When I was first diagnosed with IBD, I had never heard of Crohn’s disease. There was so much to learn and absorb, but I was so sick, it was hard to take it all in. My emergency surgery resulted in a total colectomy. I had a perforated bowel in 4 places. Once the surgeon opened me up, he discovered things were much worse than he expected and I had sepsis. Those early days in the hospital were hard, but I was committed to staying positive and hopeful.

One of my favorite ways to stay active had always been power walking. If I could walk somewhere vs getting in my car and driving there, that was my path of least resistance. So, getting to a point where I felt well enough to get back to exercising was a goal of mine. Ironically when I first asked my doctor when he thought I’d be well enough to power walk again, he recommend I not walk too far because he knew I’d probably need to use the restroom. In those first couple years living with Crohn’s, I was taking 20+ pills a day and probably using the restroom 30+ times a day. I was fragile and got short winded quickly, even walking to the corner in my neighborhood was a challenge.  I stayed hopeful that brighter days were ahead. I was very fortunate to have a very supportive group of friends and family around me.

Fast forward to the fall of 2015. I was feeling much stronger since being on Humira for about a year. facebook_1529431766690I saw a post on Facebook about Team Challenge and an upcoming Rock and Roll Marathon and Half Marathon that was taking place in February 2016 in New Orleans. I didn’t hesitate to sign up and commit to doing a Half Marathon and fundraising to find a cure for Crohn’s & Colitis. Almost immediately, one of my childhood girlfriends decided she was going to do the Half with me and she too joined Team Challenge. I’m not sure we knew what we were getting into, but we were 100 percent committed. Two ladies, soon to be 50, and neither had even done a 10K, let alone a Half Marathon! In full disclosure, we always knew we were going to walk, not run the Half. We might be crazy, but as they say, we were only “Half Crazy”!

Team Challenge has been one of the best decisions of my life. It has been a truly life changing experience. I am about to start training for my third Team Challenge race taking place in November in Savannah, GA. Team Challenge is a few hundred people who share one common goal, which is to find a cure for IBD. Once you sign up, you commit to a fundraising goal, but Team Challenge provides the coaching and training to not only complete the race, but to reach your goal and have fun along the way.

Race weekend is amazing! There are opportunities throughout the weekend to meet with your individual team, as well as the entire Team Challenge family. The night before the race there is an inspirational pasta dinner.

The evening is filled with tears of joy and we celebrate our combined mission of finding a cure. Some are parents running or walking for a child, some are friends and family running in memory of a loved one lost, and some are like me – a Crohn’s patient determined to not let Crohn’s hijack her life!

My advice to anyone looking to feel empowered against IBD would be to get involved with Team Challenge. I have made so many new friends and I’ve gained so much confidence through my involvement. I guarantee you’ll leave race weekend with a feeling of accomplishment and you’ll feel the love from the Team Challenge tribe that is now an extended family and support system of your own.

Click here to learn more about how you can get involved with Team Challenge.