This post is sponsored by the Autoimmune Association. All thoughts and opinions shared are my own.
An educated patient is an empowered patient. Over the weekend the Autoimmune Association presented its Inaugural Autoimmune Summit that aimed to do just that. The virtual two-day event featured 23 educational sessions and more than 50 autoimmune experts including physicians, nurses, policy experts, and of course, patient advocates.
The Summit covered a wide variety of important topics that impact patients and caregivers who live with autoimmune conditions. I had the opportunity to moderate a panel discussion about fertility, family planning, and pregnancy alongside Dr. Marla Dubinsky, Chief of Pediatric Gastroenterology at Mount Sinai and Co-Director of the Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center and Mariah Leach, a mom of three who lives with Rheumatoid Arthritis and Founder of Mamas Facing Forward. As an IBD mom of three chidren myself, I’m extremely passionate about sharing guidance and support for fellow women on this subject.
During the discussion, Dr. Dubinsky touched on many aspects of the journey to motherhood and beyond with IBD, but one comment she made resonated with me. She said the greatest gift a woman can give their child, is to stay on their medication, and allow their baby to thrive in an uninflamed environment. As someone who needed and depended on my biologic with all three of my pregnancies that comforted me greatly and really struck a chord.
Other topics of discussion during the Summit included tips and tricks for managing multiple specialists to clinical trials, health equity, advocating on Capitol Hill, and complementary medicine.
A dream come true
Lilly Stairs, Vice Chair of the Board of the Autoimmune Association and Summit Lead, lives with Crohn’s disease and arthritis. As a patient advocate, she understands the vital importance of providing those who live with chronic health conditions to share their voice and articulate their needs and struggles.
“It has been a dream of mine and the Autoimmune Association’s to plan an event that unites community members from across autoimmune conditions. Our patient odysseys share deeply rooted similarities. By coming together, we can accelerate autoimmune education, awareness, advocacy, treatment, and someday, cures.”
Goals of the Summit
The goals for the Summit were three-fold. Organizers and presenters like myself hope you walked away feeling connected to people across the patient community, while learning tangible tips for managing your autoimmune conditions. Lastly, the hope is that attendees and Summit participants feel energized and excited about what the bright future holds for those living with autoimmune diseases.
Lilly went on to say, “Events like the Autoimmune Summit are essential engagements for patients and caregivers to participate in. These events provide tools to navigate life with chronic illness and empower patients with the knowledge they need to be “CEO, secretary, and treasurer of your care” as Hetlena Johnson, Lupus Patient Advocate so eloquently stated in the Managing Multiple Autoimmune Conditions panel.”
Events like this are a reminder that we are not alone in our journeys. Even though chronic illness can be extremely isolating, events like the Autoimmune Summit offer the opportunity for connection that often feels like much needed chicken soup for the soul. The camaraderie that is possible even though Zoom has a lasting impact on helping to lift the burden and self-doubt many patients face.
From the Speakers
Tina Aswani Omprakesh participated in a panel on complementary medicine and autoimmunity. As an ostomate who juggles Crohn’s disease, Gastroparesis, and IBS, she knows firsthand how imperative it is to take on illness with multiple approaches.
“This is an important subject that’s often not discussed in the autoimmune space. The reality is that many patients are thinking about exploring it but don’t know how to navigate it in a way that can help complement their existing therapies. These conversations are essential to proliferate both credible information and sources of complementary therapies so patients can truly live their best lives possible.”
Molly Schreiber lives with Type 1 Diabetes, Rheumatoid Arthritis, and POTS. During the Summit, she spoke about what it’s like to manage multiple autoimmune conditions.
“Anytime I can share my story, my hope is that attendees feel less alone in their battle with chronic illness. We may have different health conditions, but our fight is often the same—pain management, medical providers who listen, and affordable medications we can easily obtain.”
Alisha Bridges is a patient advocate who lives with Psoriasis. She participated in a breakout session geared towards dermatology. She says having the chance to speak at the Autoimmune Summit was an honor.
“I hope my story helped viewers to better understand the unique challenges of living with psoriasis as a woman of color especially in the clinical trials sphere. These conversations are imperative to elicit change for better care of patients of all backgrounds.”
It’s our hope attendees discovered tips for managing autoimmune disease from patient advocates like myself who understand your reality, while also learning about the latest research and future treatments on the horizon.
Did you miss tuning into the first-ever Autoimmune Summit? No worries! All the presentations were recorded and will be shared in the weeks ahead. I’ll be sure to share the Fertility, Family Planning, and Pregnancy discussion I was a part of on my social media channels as soon as the video becomes available.
Thank you to all who tuned in, to all who participated, to the organizers, like Lilly, and the generous sponsors who made this happen. It’s amazing to see what’s possible when patients have a proverbial seat at the table alongside medical professionals and digital health companies. Our voices matter and time and time again we’re being heard loud and clear.
It’s safe to say IBD mom, Amanda Pennewell, is grateful she’s days away from welcoming baby number four into the world. Despite being fully vaccinated, she came down with COVID when she was 34 weeks pregnant. Amanda was diagnosed with Crohn’s disease 20 years ago when she was only 8 years old.
Amanda is no stranger to being on a biologic during pregnancy. She was on Humira with her twins and over the course of the last two years she was on Stelara with her second pregnancy and her current one. It’s one thing to be an immunocompromised pregnant woman, I can attest from personal experience, it’s extremely worrisome when living through a pandemic and worrying about your IBD and the possibility of COVID turning your life and that of your unborn child upside down.
Coming Down with COVID
One second Amanda’s oldest daughter, Brooklyn, was at a friend’s birthday party being her energetic, sweet, self and when they arrived home, she laid down on the couch and said she was freezing. Brooklyn had a low-grade fever. A few days prior her 17-month-old, Caroline, also had a fever.
“I didn’t think anything of it until a friend from school called to tell me her son tested positive for COVID after being seen for a low-grade fever that lasted six hours or so. My husband went to get some at home rapid tests from Walgreens. It was late, and I was supposed to have him help me with my Stelara injection that night. I figured I needed to wait until I could contact my GI doctor to inject if it was positive. It was.”
Amanda was in a state of shock. Her and her husband had both been fully vaccinated for months. At the same time, given the nature of mom life, once her daughter tested positive, she felt it was inevitable she would, too.
Navigating a biologic, pregnancy, and COVID
When Amanda’s GI heard she had COVID, she recommended she delay her Stelara injection for the time being to see how she did during the quarantine period. Amanda’s initial symptoms were a sore throat and a headache.
“I kept in touch daily with my GI doctor and her nurse via phone and email. They were very worried about me—especially because I was about 34 weeks pregnant. I ended up waiting two weeks after my daughter and I tested positive before I did my Stelara injection. I had been symptom-free for a week at that point, and they knew I would be okay to inject then.”
Along with herself and her daughter, Amanda’s husband and dad also tested positive. But Amanda says out of everyone in their inner circle, she felt the worst.
“My symptom list continued to grow each day. The first day the sore throat and headache were my only symptoms. I then developed a cough and muscle soreness and pain. I took about four-six baths/showers each day and took Tylenol to remain functional. I had extreme fatigue and ordered a pulse oximeter to monitor my oxygen level. I had a low-grade fever. I also lost my smell and started to lose my taste. My OB doctor had called me and said I was eligible for a monoclonal antibody infusion, and they would recommend it for me since I also have Crohn’s disease.”
Amanda took a few days to think it over and discussed the infusion with her GI, who recommended she receive it as well. After getting the 30-minute antibody infusion, Amanda felt worse. Her fever spiked and she was shaking. Luckily, by the evening she turned the corner and started feeling significantly better.
Advice for Fellow IBD Moms
COVID caused Amanda to miss one of her high-risk ultrasounds, but she was able to get a scan at 36 weeks. She’s grateful baby girl is looking great and measuring right on target despite all she’s been through during this pregnancy.
“My advice to fellow pregnant IBD moms would be to stay in close contact with all of your doctors, even if you think they can’t help you. I normally just try to keep my primary and my GI doctor informed when I’m sick with something, but since I had to cancel my OB appointment, they knew I was exposed and then knew, I was positive. They were the ones able to set up the infusion for me. Had I not called, I wouldn’t have known about the infusion and that it was available for me. I don’t want to think about what could’ve happened if I hadn’t had that option.”
Amanda is hopeful her daughter will come into the world with solid antibodies given that she was pregnant with her when she received her second Pfizer vaccine, plus the fact she had COVID and received the monoclonal antibody infusion.
There’s more than meets the eye when you’re watching a Chicago Dogs baseball game. Outfielder Brennan Metzger was diagnosed with ulcerative colitis when he was 19 and later re-diagnosed with Crohn’s disease at age 24.
He’s now 31-years-old and didn’t allow IBD to steal his dreams of playing in the big leagues. Unfortunately, his most challenging flare-up happened the first summer he was a professional baseball player. Brennan was drafted by the San Francisco Giants in 2012 after graduating from Long Beach State University. He ended up playing for the Giants until 2015, but his health was not cooperating during that time.
“The flare ups are very difficult, and unfortunately for me it cost me a year and half of my career, but more importantly it almost cost me my life. I needed a total of six surgeries and had a total removal of my large intestines. I’m currently on Remicade and thankfully it is keeping me in remission,” explained Brennan.
His advice for young athletes with IBD—to stay positive and continue to treat your body right despite the uphill battle. Brennan says the struggles with Crohn’s motivate him.
“When I am symptomatic and need to play, I get as much rest as possible, and compete to the best of my abilities. Now, my Crohn’s is just a piece of adversity that I do my best to accept and play through.”
Coping With Life as a Former Ostomate and Current J-Poucher
Brennan had an ileostomy for nine months. Once his body healed from the j pouch construction, his surgeon was able to perform an ileostomy take down and re loop his small intestine back inside his body.
“That was a tough time for me. I went through the struggle in the beginning of not being able to look at it, let alone change my ostomy bag. Once the unfamiliarity of the situation passed dealing with life with an ileostomy got better.”
At that point, Brennan learned to adjust. He reached a sense of acceptance knowing that it was necessary for him to endure this so he could get better. The fact that his ostomy was temporary helped him cope.
“To anybody that is adjusting to life with an ileostomy, don’t let the fact that you are different and have an ostomy bag hold you back from being you. If anything, it makes you unique and tougher than most. You’re a fighter, so keep fighting.”
Brennan is passionate about connecting with as many people in the IBD community as he can. He knows firsthand how lonely and isolating Crohn’s and ulcerative colitis can be, so anytime he can be a source of comfort or a role model for others, he jumps at the opportunity.
Choosing to Play Through the Pandemic
Deciding to play baseball as an immunocompromised player was nerve-wracking to say the least. Brennan says he realized he had two options—live in fear or live his life to the fullest. As a vaccinated ball player, he felt getting the jab allowed him to have some control and not let uncontrollable circumstances affect him.
“I chose not to live in fear and to compete because baseball in the summer presents a sense of normalcy and I think the world needed something to look forward to amongst all the negativity. I am still cautious and try to live healthy and do all the things to keep myself from getting sick. I look at the situation as being cautious, but not fearful.”
When traveling due to baseball, he makes sure to have a roll of Charmin ultra-soft toilet paper handy, because you just never know when you may need to go to the bathroom.
“I always search for the healthier options when it comes to diet. Sometimes it’s difficult and I just have to roll with the punches and accept that I may be taking a few more trips to the bathroom.”
How the Chicago Dogs Step Up to the Plate
The Chicago Dogs baseball team is part of the American Association of Independent Professional Baseball. Brennan is grateful for the organization and his teammates for never making him feel like a burden or less than because of his illness.
“The Chicago Dogs have been incredibly accommodating to my circumstances in having to deal with Crohn’s. They have been able to provide me with comfortable living arrangements and are understanding that there are times where I need to go about my typical workday a little differently than others.”
Brennan’s attitude on and off the field go hand in hand. He tries his best to focus on being positive, having fun, and being present in the moments provided by feel-good days. He loves connecting with others in the IBD community over social media, don’t hesitate to connect with him. Here’s how you can do so:
There’s power in surrendering to your IBD. It takes time to reach that mindset and it’s something author and patient advocate Christine Rich eloquently explains in her debut book, “Chronic”. Christine reached out to me when she was doing the initial writing research and we hit it off instantaneously. There’s something magical about connecting with strangers who understand your reality. You may be thousands of miles apart, with different back stories, but the common thread of life with chronic illness makes you feel seen, understood, and like lifelong friends.
Christine, now a 41-year-old married mom of two, was diagnosed with Crohn’s when she was in high school. It took time and struggle for her to truly process all she endured and reach the point where she is today.
“Many of us are taught to smile, be grateful, and make everyone else feel all comfy and cozy at the expense of our own comfort and well-being. The problem with these types of expectations is that they are lies that create loneliness and rage that eventually turn women against themselves and their potential.”
This quote really spoke to me. Having an invisible illness like Crohn’s disease, one of my biggest struggles in my 16-plus years since diagnosis has been feeling comfortable with making those around me know how uncomfortable I am in any given moment. It often feels a lot easier to just put a fake smile on and pretend you’re not in pain. But, in doing so, we are only hurting ourselves and deepening our personal struggles.
Advocate for and take care of your body
Christine’s powerful journey exemplifies all the work and personal development it takes to discover self-acceptance, grieve the loss of the former you, ask for help, and feel empowered. She speaks of the trajectory we all go on from the point of diagnosis to becoming a “veteran” patient years later. Take a moment to think of how you have personally transformed since you were told you had IBD. That transformation is one that takes a great deal of time and personal growth, but once you come out on the other side you won’t look back aside from reflecting on how far you’ve come.
“When I walked in for my outpatient procedure that warm July morning, I was arrogant, afraid, angry, and emotionally incompetent. When I walked out (well, wheeled out is more like it) I was humbled, vulnerable and awake in a way I had never been before in my adult life.”
This quote paints the picture of what life is like with flare ups that result in hospitalization and how we evolve through the setbacks. Often those in our lives think we’re “all healed” the moment we cross through the hospital doors, when in actuality the healing process is something, we’re constantly going and growing through.
Thinking of your body as an ally, not an enemy
One of my favorite chapters in “Chronic” is Chapter 14—The 4th F. Christine’s words and experiences really resonated with me.
“After working through the peak of my resistance, denial and rage I realized I had made an enemy out of my body for far too long. I had turned my back on her for being different. She wasn’t broken. I wasn’t broken. We were both sad and not fully aware of the other. I needed to learn how to stop fleeing and fighting my body…I needed to befriend it.”
She goes on to explain how altering her perception of the way she looks at her body and thinks about it, has shifted her entire life experience, and brought her to where she is today.
“I was faced with a choice: continue to carry this anger and self-hatred until it sunk my health, my marriage and my self completely, or decide to feel it all and acknowledge that my body is not and never was an apology, enemy or failure.”
Rather than our community thinking of Crohn’s and ulcerative colitis as a villain trying to destroy it, Christine asks what if we treated our chronic illness as a small child seeking love and attention?
“What if I could make friends with my body? Love her and care for her like I do my own children.”
In my own personal experience with Crohn’s, I’ve also learned to be in-tune to the subtle signs my body is trying to communicate through symptoms. Rather than constantly shutting that communication out and trying to push it to the back of my mind, like I did in my 20’s, now, I listen closely. That voice is part of a constant inner conversation that is part of every hour of every day of my life. Even in remission—each choice, each decision I make, has my Crohn’s in mind. Because as an IBD mom of three, my disease impacts a lot more than “just” me.
“Although I would never be able to control the circumstance of my diagnosis, I could control my perception and reaction to it. I could start telling the truth. I could stop punishing myself.”
This is so important. Even though we were all powerless over receiving our diagnoses, we’re not powerless in how we choose to live life after our diagnosis. The unpredictability of the disease may make us feel like we’re constantly on edge, spiraling out of control, but by being proactive rather than reactionary and by making efforts to manage our disease on every level (physical, emotional, and mental) we set ourselves up for a much-improved quality of life. IBD doesn’t have to be the headliner of our lives, it can be more of a footnote.
There’s no fixed end point with chronic illness
Christine says her therapist tells her to go to her 17-year-old newly diagnosed self as her current 41-year-old self and hold her hand. Tell her it’s not her fault. She goes on to explain how there’s no fixed end point with chronic illness and that the collective power of patients in the IBD community must discuss the mental anguish that’s often brushed under the rug.
“For the life of me I can’t figure out why mental health screenings aren’t standard practice of care. They test and screen us for everything else. They test our blood and our stool. They examine our rectums and colons. They poke and prod us top to bottom…they examine everything but our minds.”
She calls on all of us to be “chronic truth tellers”—which I love. The more doctors hear the same message over and over again directly from patients, the better chance we have to impact change. This takes effort and a heightened sense of vulnerability on our parts, but reaps endless benefits. We can’t take care of our whole self by simply focusing on the physical manifestations of our illness.
In “Chronic” one of my favorite lines is when Christine recalls how one of her yoga teachers once said, “what we resist—persists.” In IBD terms—every time we resist telling our care team, loved ones or friends about symptoms and struggles, things will only snowball and get worse.
“In order to advocate for ourselves we must also be chronically curious about ourselves. Being chronically curious about yourself starts with a clear understanding of what makes you feel good and whole.”
The overarching theme in this remarkable and must-read book are to keep showing up for yourself every day. Stop running away from the discomfort. Acknowledge it, explore it, and feel it—all of it—the good, the bad, the embarrassing. Christine Rich started out as a stranger on the phone with a dream of becoming an IBD patient advocate and published author. Not only did she accomplish all the above, but she did so in a way that even her personal experiences will feel like something you can relate to and grow from. As a fellow woman with IBD I stand up and give her a round of applause and a big hug for so bravely and candidly speaking the words so many before her felt too silenced and worried to share. Bravo, bravo, bravo.
This post is sponsored by Naturally Free from IBD—all thoughts and opinions are my own.
She’s a doctor with IBD who says her call to medicine began from her own hospital bed. Dr. Christina Campbell, DO, Certified Functional Medicine Physician, Board Certified Emergency Medicine was diagnosed with Crohn’s disease 40 years ago when she was only 12 years old. She’s utilized her own personal struggles and setbacks to guide the way she treats patients and helps others in our community. Through her own journey, she says many doctors left her feeling frightened, unmotivated, even angry. Christina learned early on about the importance of bed-side manner, compassionate care, and the gift of not only listening, but hearing what a patient is expressing. Her overarching goal—to be a physician who inspires faith, confidence, and a will to fight within her patients.
She’s dedicated her life’s work to facilitating and growing the value of a patient-physician partnership rather than what she calls a “DOCtatorship.” Christina believes that a personalized approach to health works better than recipe medicine, meaning she’s passionate about finding the root cause of disease and improving underlying health and the body’s biochemistry by intervening at the level of the root cause, through a functional medicine approach. Before we dig into the amazing work she’s doing, let’s take a walk down memory lane to see how Christina got to the point where she is today.
Christina’s Journey with Crohn’s
A diagnosis of IBD in 1983 looked a lot different than present day—and not for the better. When she was 14 years old, Christina faced a near death experience from extensive bleeding and lesions from her mouth to her anus. Her gastroenterologist said she had one of the worst cases of IBD he had ever seen and shared her case at global medical conferences and in case studies. Christina was averse to undergoing a complete colectomy and colostomy, so she underwent six months of bowel rest (nothing by mouth). She received all hydration and nutrition through an IV in her veins around her heart called a Hickman catheter. At the time, the only medications available for Crohn’s were Sulfasalazine and Prednisone. Can you imagine?!
Since her diagnosis, Christina has been on many different medications through the years (Asacol, Delzicol, Sulfasalazine, any number of antibiotics, steroids, Toradol, Tylenol, Tylenol #3, Vicodin, Percocet, Compazine, Phenergan, Tigan, Tagamet, Pepcid, Bentyl.) When the first biologic was approved for treatment of Crohn’s (Remicade in 1998), she was in remission and graduating from medical school.
“My personal story is fraught with difficulties and each of my struggles has blessed me with a deep understanding of others and the ability to empathize and connect with patients. I have learned how to listen and really hear what they are saying. I have learned the power of creating a therapeutic partnership. My goal for each of my health participants is to match their lifespan to their health span. Quality of life alongside quantity of life is key. My personal journey has taught me that it only takes one step in a new direction to change the entire path of one’s life. It has also shown me the power of understanding your personal timeline. Looking back at our past journey helps us to understand the path that has led us to where we are,” Christina explains.
The Power of Responding to the Root Cause
Before Christina knew how to treat root cause issues and was solely utilizing conventional medicine, she says her immune system remained dysregulated. She was treating her symptoms with medications that acted like band-aides without addressing the cause.
“My functional medicine training has taught me the value of information and the concept that many with the same diagnosis may have completely different root causes. Utilizing detailed functional labs to discover altered biochemistry is an incredible tool to getting things back on track. These labs are not used in conventional medicine where the focus is on illness, not on wellness. It is a completely different perspective, which makes all the difference in helping someone find not just improved health, but optimal wellness.”
When it comes to discovering optimal wellness, Christina says this includes investigating genetics, epigenetics, metabolomics, oxidative stress, cellular energy and mitochondrial health, detoxification pathways, gut health and microbiome imbalances, inflammatory factors, and so much more.
“Once we uncover this information, we can begin to make changes personalized to your life, your body, your biochemistry, your genetics, your mind, and your spirit. Patience and grace with oneself are paramount to health as are understanding and forgiveness.”
The Transcend 3-step signature program
Christina works with IBD patients through her 3-step signature process to discover the root cause of symptoms, intervene at that level, revitalize health, and teach people how to maintain and excel for the rest of their lives. She uses natural and lifestyle interventions to create a personalized program which improves the health participant’s innate healing abilities to reverse symptoms, decrease pain, and improve all aspects of their lives.
“My Transcend program is my signature 3-step process which guides you through your precision blueprint for regenerating a healthy, joyful, vital you! This program is the culmination of 23 + years of medical expertise and 40 years’ experience as a Crohn’s disease patient. It is my passion project to help as many IBD patients as I can! I am on a mission to change the medical approach to Crohn’s and UC leading to fewer surgeries, stopping the path to health decline and disability by finding and fixing the root cause. We will Transcend IBD together living healthy vibrant lives.”
The process begins with uncovering your health history and detailing your timeline. Next, Christina works with patients to order specialized cutting-edge functional lab studies to help pinpoint where the most critical areas of intervention are needed. The third step is the Excel phase where you learn how to maintain these changes and continue to progress over time.
Christina is hosting an online Zoom webinarSeptember 1 at 7pm EST. By attending this webinar, you will learn three secrets for managing IBD and have an opportunity to ask questions. Tickets are $9.95 and limited in number. Get your ticket today!
Ready to Make a Change?
Set up an initial consultation here for men and here for women. Use coupon code Natalie20 for 20% off any time in 2021. HSA/FSA are applicable. This consultation is the first step to discovery. During this consultation you will discuss your body’s problematic areas as well as the areas where you are succeeding based on extensive intake paperwork and a 60-minute consultation. Potential interventions will be discussed, labs will be ordered, and a personalized care plan will be created.
Christina says, “I provide options for anyone who meets with me. However, I do not invite everyone into my signature 3-step Transcend program. It is important that we both feel we are a fit to work together to make this program successful. You must be ready to make the necessary changes and be open to new information. You must focus on progress and commit to never letting your self-doubt stop you from having what you want. There is hope! You can change your health and life for the better.”
Imagine having a dad who’s a gastroenterologist and a husband who is a GI fellow… and having Crohn’s disease. For 32-year-old, Lauren Gregory, that’s her reality. She was diagnosed with Crohn’s in 2008. Lauren is also a doctor herself and an IBD mom! When she’s not taking care of pediatric patients in the hospital, she’s enjoying time at home with her husband, Martin, and 6-month-old son, Connor. In light of Father’s Day, this week on Lights, Camera, Crohn’s, we share about how the most important men in Lauren’s life have helped her cope and overcome challenges IBD has presented along the way.
Through the eyes of Lauren’s dad
Late one night during Lauren’s college sophomore Christmas vacation from college, her mom called her dad with words he will never forget. She said, “Lauren is having terrible abdominal pain and is on the floor.” After a quick exam and seeing how tender and distended her abdomen were, he knew it was time to head to the closest emergency room. A CT scan showed massive gastric dilation and small bowel thickening. The surgeon was called, and he agreed it was likely Crohn’s.
Lauren was discharged home on a liquid diet with outpatient GI follow up after New Year’s. Unfortunately, her concerning symptoms persisted and her dad called a friend who was a gastroenterologist. He directly admitted her.
“When Lauren was admitted to Barnes Jewish Hospital in St. Louis while in college at Wash U, her then boyfriend (now husband) sat by her bedside for days as she underwent scopes and a small bowel series. We knew he was a keeper then. As parents we always worry about our children. As a gastroenterologist, we may worry more when our children have GI issues. We are fortunate to have connections in GI which allowed Lauren to have prompt evaluation and ultimately a great outcome,” said Dr. Bruce Waldholtz.
Navigating love and IBD
Lauren met Martin in college. At the time, he knew he wanted to be a doctor, but he did not know what he wanted to specialize in. During internal medicine residency, Martin was torn between cardiology and gastroenterology. He ended up choosing GI and is about to start a one-year fellowship to get extra training in IBD and nutrition. (Small World Fun Fact: He is part of the same GI practice I go to in St. Louis!)
Martin says Lauren inspired him to choose gastroenterology and specifically focus on inflammatory bowel disease.
“Watching her go through what she did at such an important time in her life was inspiring. I was so grateful to her doctors taking such good care of her. I wanted to be like them. I wanted to help people like her succeed in living a rich, enjoyable, and rewarding life. “
Lauren feels incredibly lucky to have found someone as supportive as her husband. A month after they started dating, she was hospitalized with a partial small bowel obstruction. The fact he didn’t leave her side throughout that vulnerable and scary experience meant a lot to her.
When Lauren was hospitalized for one week during her fourth year of medical school, Martin was going through his second year of internal medicine residency. They were married, but in a long-distance relationship at the time.
“During residency you can’t just take days off, and it is challenging to find coverage. Because of this I did not expect him to be able to visit, but he somehow did. This flare occurred as I was transitioning from Humira to Stelara. I have been extremely fortunate to have stayed in remission since then (2017).
How personal life impacts professional life
“Without question Lauren makes me a better doctor, especially with taking care of IBD patients. I can understand the anxiety behind the questions they have about medications and what to expect because we went through the same thing as a family,” said Martin.
Lauren says her IBD has given her a unique outlook in how she cares for patients as well.
“My experiences with Crohn’s have made me more empathetic towards my patients, and now that I am a mom, I have much for empathy for my patients’ parents. Spending extra time with patients is not always easy given that I work mostly in the emergency room, but I make a point to take the time to listen to my patients and their parents’ concerns and provide reassurance when appropriate. In my marriage, my husband answers my medical questions and has a realistic perspective of what patients go through.”
Gratitude for her dad and husband
“I realize how fortunate I am to have a father (and now a husband too) who is a gastroenterologist who can answer my questions and to help me navigate our healthcare system, especially insurance! When my gastroenterologist decided I needed to start a biologic, and recommended Remicade, my dad pushed for Humira so that I wouldn’t have to worry about scheduling infusions around my college class schedule or worrying about transportation when I didn’t have a car. At the time I had no understanding of how having a chronic disease would affect my life.”
She’s an IBD mom who plays touch football and touch rugby in Australia (think rugby—for those in the United States, in touch rugby she kicks the ball). Diagnosed with Crohn’s disease five years ago, she’s thrilled to have reached remission. Bec Simson is a 33-year-old IBD warrior adamant about not letting anything stop her from pursuing what she hopes to achieve. Even though her disease has sidelined her through the years, motherhood and staying active through sports is a reminder of all she’s capable of.
“Some weeks it can be hard to find the time and energy to exercise. I play touch football competitively and socially– it’s like rugby but without the tackling. I play three times a week and then on the weekends I like to do my own fitness to keep up my strength, speed, and agility. I enjoy playing touch football because I use it to catch up with my friends – seeing my mates gives me the motivation to get up off the couch and exercise.”
Getting up off the couch and having not only the motivation to move, but also the energy, can be especially challenging when you live with IBD. Bec’s biggest challenge is trying to juggle work as a teacher, her athletic commitments, and life with her son Jackson, while also trying to find time to rest in between.
“Being on immune suppressants and having a toddler who is almost 2.5 has been hard because he brings home many illnesses from daycare which I usually end up getting as well. Some days I am so rundown I just don’t have the energy to keep up with him, but I wouldn’t have it any other way. Jackson always knows how to make me smile.”
Reflecting on pregnancy with Crohn’s
Bec had a rough go of it with her pregnancy. Her Crohn’s flared multiple times throughout, resulting in three visits to the hospital due to severe vomiting and diarrhea. She was put on a course of steroids for each flare, which led to her son growing much faster and bigger than expected.
“Ultimately, I had to be induced two weeks early due to Jackson’s size. After 16 hours of labor, I had an emergency c-section. My incision from my c-section ended up bursting open while I was recovering in the hospital after delivery. An ultrasound showed my bowel was so inflamed, it had pushed through my internal stiches and formed a hernia that was sticking out of my stomach. I was rushed to emergency surgery that same day.”
Fast forward to present day and Bec is in remission. Her colonoscopy last month showed no signs of inflammation or ulcers. She credits this to Stelara (Ustekinumab), which she started this past October. So far, the biologic has helped control her disease and improve her quality of life.
Down the road, if she’s still in remission, Bec is hopeful she’ll be able to have another child.
The benefit of a supportive partner
Bec is grateful for her supportive partner, Nick, who happens to play in the AFL (Australian Football). Not only is he empathetic about her battle with Crohn’s, but serves as someone who keeps her accountable with her workouts and is also passionate about staying in shape.
“We motivate one another to complete work outs and then reward ourselves with food and drink later! When I was younger, I used to overdo my training and push my body to its limit. I became burnt out, rundown, sick, and injured. My main piece of advice for the IBD community is to listen to your body and don’t be afraid to stop and take a break. Rest is just as important as training.”
Managing IBD and competitive sports
Bec says her Crohn’s disease often makes her anxious while she’s on the field.
“I had our State of Origin for ‘Touch Rugby League’ which attracted quite an audience and it was also being live streamed for everyone to see. I was extremely anxious leading into that tournament because I was worried about pooping my pants in the middle of the game and it leaking through my bike pants! I took some Imodium before my game, so thankfully that didn’t happen! However, I felt like I couldn’t play to my potential because I wasn’t feeling my best.”
While she feels fortunate to be in remission, she’s also realistic. She knows the symptoms and flares could return at any moment—and that it’s not a matter of if, but when.
“Sometimes I can be hard on myself when it comes to sport, but I just try and remind myself that I’m a 33-year-old mum with a chronic illness and I am grateful I’m still able to run around the touch field at my age. I can’t change things out of my control, all I can do is just go out there and give it my best shot.”
Follow Bec’s journey on Instagram: becs_IBD_journey
It was the first biologic created to treat Crohn’s disease (and later ulcerative colitis). Remicade (Infliximab) was approved by the FDA in 1998 for Crohn’s and 2005 for UC. The medication set the stage for a new way of treating and targeting IBD. A lot has changed in the last 23 years when it comes to treating IBD with biologics (Crohn’s and Colitis Foundation Biologic Fact Sheet). As patients we’re “lucky” that more options are available, and several medications are on the horizon. But Remicade remains a tried-and-true treatment option for IBD patients.
A few weeks back, I shared an article on my blog entitled, “The Patient Experience: What The IBD Community Says About Entyvio.” The article featured viewpoints, experiences, and tips/tricks from several people with IBD who are currently taking Entyvio or have in the past. That article and this one have NO affiliation or guidance from pharma. This is strictly created from the IBD patient experience.
The discussion on Entyvio was well-received and from there, I decided to do an exposé if you will, about other biologics, too. When I was told I needed to start a biologic while lying in a hospital bed in 2008, my mind was racing. I felt like I had nowhere to turn. There were only two options at the time. I didn’t know what resource to trust or where to go for information. My hope is that these articles help comfort you as you make these important, lifechanging health decisions, and alleviate a bit of the fear associated with being on a biologic drug long-term. Use these candid quotes to serve as your roadmap to navigate the unknown.
Before we dig deep into Remicade from the patient and caregiver perspective—a reminder that much like the way IBD presents and manifests in each of us, each person’s experience with biologics is unique to them. Remember that your experience could be better and could be worse.
What does anti-TNF mean?
Each biologic is associated as a class of drug. Remicade is an anti-TNF, meaning that the medication blocks a protein in your immune system called TNF-alpha. That protein can cause inflammation in your body. People with IBD produce too much TNF-alpha, which can cause our immune systems to mistakenly attack cells in the GI tract. Anti-TNF biologics work to regulate this protein in our bodies.
The Patient Voice
In this article you’ll hear from those who just started Remicade in the last week to someone who has been receiving infusions for 21 years! Thanks to each and every person who offered input, I wasn’t able to feature everyone’s perspective, but your narrative helped guide this piece.
Amanda Rowe started Remicade nine months ago. She was hesitant to start a biologic, but ever since taking the plunge, she hasn’t looked back.
“I haven’t had any issues. I get pre-meds of Benadryl and Solumedrol because I got slightly itchy during one infusion. It’s a nice quiet time to sleep or I bring my phone and earbuds and watch a show. It’s 2 hours where I get a break from hearing, “Mom, I need…” I currently have no active disease after being in a bad flare for two years. I flared that long because I was afraid of starting a biologic. My GI explained everything to me and calmed my fears about possible side effects and I finally agreed. I just wish I would have started Remicade sooner, so I could have felt the way I do now.”
Phylicia Petit has Crohn’s and has been receiving Remicade infusions since she was a teenager 11 years ago, she’s grateful the biologic has worked well for her.
“I’ve had a dosage increase and have added mesalamine for better inflammation control. Other than those changes, I’ve been relatively symptom-free, which is a major blessing! I would highly recommend having home health do your infusions. I haven’t had to take off work for my infusions and it’s so nice to be in the comfort of my home…especially with COVID! It’s also cheaper for insurance. I use Janssen Care Path for financial help. It helps to cover your infusion costs. I fortunately have never had any side effects.”
IBD is a family affair for Kara Cady. She has ulcerative colitis; her dad was diagnosed with Crohn’s as a teen and her little sister was recently diagnosed with UC. She just started Remicade last week.
“I’m still on the loading doses. The infusion process is long! It’s about 3 hours for me. I am able to get mine at my GI’s office. I can bring my laptop and work from there. I was super nervous for my initial dose, but my main “issues” are feeling tired, and having a headache and sore throat after. I’m looking forward to getting on my regular Remicade schedule, as I’ve been in flare for about 6 months.”
Laura Steiner is a nurse practitioner with ulcerative colitis who has depended on Remicade for over seven years.
“I have had to increase my dosage and shorten the interval but continue to stay in remission while on it. I’m usually wiped out the day of and the day after. I get my infusions on Fridays, so I have the weekend to recover. The only downside is many major insurance companies are forcing patients to switch to biosimilars, so after 62 doses of Remicade, my next infusion in June will be Inflectra. I’m hoping it will work equally as well.”
Laura is not alone in this fear and dealing with barriers to care and insurance coverage is a reality for many. While working on this article, a social worker from an insurance company reached out to me and said in the last week alone she’s dealt with several cases of people who have had their Remicade denied. She’s helping them through appeals. Until you’re a person who is dependent on a medication for improved quality of life, where timing is of the essence for receiving it, it’s difficult to grasp the magnitude and the pressure of not being able to receive your medication when you need it and risking a flare spiraling out of control or losing your remission.
Meg Bender-Stephanski was on Remicade to treat her Crohn’s for about a year and half. It worked well for her, but she says the infusions were not only inconvenient but costly, so she ended up switching biologics.
“I was going to college in Oregon while my main insurance was based in California, and the out of pocket costs the first few infusions in Oregon were around $18,000. It ended up being cheaper for me to fly home every 8 weeks for an infusion than it was to receive it in Oregon! I also really wanted to study abroad, and it was incredibly difficult to figure out the logistics. Remicade did work well for me and sometimes I have regrets for switching off it for personal reasons.”
Advice for Infusion Days
Kelly Dwyer was diagnosed with Crohn’s in 2018, but experienced symptoms for several years prior. She has great advice for gearing up for infusion day and beyond.
Take along a caregiver for your first infusion, if you can, just in case you have a reaction.
Make sure you make a plan for pre-meds or no pre-meds with your GI before you go to the infusion center, so you don’t get surprised by their policies. Kelly takes Zyrtec the night before, so she doesn’t get drowsy and Tylenol right before the infusion to alleviate the headaches she gets towards the end of an infusion.
The first few infusions should be slow infusions, to make sure you don’t have a reaction. Kelly has continued to receive hers at a slow rate (2-2.5 hours) because her blood pressure tends to bottom out when the Remicade is pushed to a higher rate. But for many, a higher rate works and helps the infusion go quicker.
Switch arms and spots for your IV. Kelly says she saves her “big veins” for times when the nurses need to do a blood draw before the infusion and have to use a larger gauge needle.
Hydrate well the morning of the infusion and bring along a heating pad, as it may help to wrap it around your arm if you’re dehydrated before the IV is started.
Openly communicate with your infusion nurses. Let them know if you feel weird or off in any way. Nurses have seen it all and can be very reassuring and helpful, but you need to give them feedback so they can help you and act right away if you’re starting to feel poorly.
Your reaction one day may be different the next. Kelly says she doesn’t have consistent reactions each time, so it’s important to be vigilant and always be prepared to expect the unexpected.
For Kelly, she doesn’t start to feel the effects of Remicade for a few hours after the infusion. She gradually starts to feel more and more grumpy and tired. She gets a very particular kind of fatigue the day of her infusion. She says it’s a very numbing, all-encompassing, tiring feeling.
Be aware of what dosage you’ve been prescribed. Understand there are several variables that your GI can change if the Remicade isn’t working immediately or enough. The interval time between infusions can be shortened, and/or the concentration of the medication can be increased.
Remicade is often given with other immunomodulators, like Methotrexate. Talk with your GI about scheduling and timing for the infusions with your other medications.
If you’re just getting started on a biologic, your GI will likely tell you to get vaccinated for Shingles and Pneumonia before starting. You’ll also need to do an annual TB test.
Kelly also advises patients to be aware of insurance companies in the United States. Like we touched on at the start of this article, she says many are requiring people to switch from the brand name Remicade to a biosimilar of Infliximab.
“I’m making the switch over at my next infusion in July and my GI and I agreed that we felt confident on the data out of Europe about the efficacy of biosimilars. I recommend everyone with IBD to do their own research and have this conversation with your GI. Be proactive and prepared to discuss options when the time comes with your insurance company.”
Balancing the Logistics of Infusions and Work/Life
Megan Alloway has counted on Remicade to keep her Crohn’s under control for 21 years. She prefers to get her infusions on Friday so she can use the weekends to recoup because it makes her so exhausted.
“While Remicade has been a blessing to me for over two decades, it feels like every time I turn around, it’s time for another infusion.”
An OBGYN with Crohn’s who wished to remain anonymous, has been on Remicade since she was 18. She’s now 35 and still receives her infusions every six weeks. She credits Remicade for giving her a full quality of life and enabling her to stay out of the hospital.
“Since starting Remicade, I have been able to finish college, med school, and residency with my symptoms under control. I’ve stayed out the hospital ever since I started Remicade. My main complaint is how long the infusions take. Different infusion centers have different protocols and requirements, but usually mine take over two hours. It’s annoying to find that kind of time on a weekday and be able to take care of my own patients, but I have to do it for my health.”
Heather Richter agrees the time an infusion takes can be inconvenient, but she’s learned to make the most of the “me” time as an IBD mom with Crohn’s disease.
“I’ve learned to embrace the “alone” time. Be persistent at your infusions and if something seems off to you, speak up and make sure you feel like you’re being listened to. My infusion nurse gives me Benadryl and Tylenol beforehand, so if I have the kids taken care of, I find it helpful to nap and rest afterwards.”
Kristi Reppel has been taking on Crohn’s for 18 years. She received Remicade from December 2005 until August 2011. She switched biologics for a lifestyle change and started Cimzia in September 2016. She ended up back on Remicade in December 2016. She currently received 7.5 mg/k every 4 weeks instead of the typical 6-8 weeks.
“This biologic works for me. It gets me in remission and keeps me there. I am a lot less symptomatic, thanks to my medicine. The bad part of all this is my veins are scarring over because I only have a few good ones and those are almost gone. The post infusion exhaustion and headache can also be a lot. As an attorney, finding the time to sit through an infusion and schedule it around court room hearings can be rough. I cannot recommend enough about the importance of hydrating with water that has electrolytes like Smart Water around infusion day. It’s made a big difference for me!”
Linde Joy Parcels says Remicade allowed her to reach remission in high school. She had swollen and painful joints, and after starting the biologic, she experienced a complete transformation.
“Unfortunately, I metabolized Remicade too quickly and had to transition to Humira after one year. I loved getting to take a day off school while on Remicade and spent my infusions relaxing with my mom watching soap operas. That was the silver lining for me!”
The Caregiver Perspective—from a wife to moms of pediatric patients
Remicade has been a lifesaver for Rebecca Kaplan’s husband. Before starting a biologic, she says his Crohn’s was not well-controlled. He was on one medication, going to the bathroom 25-30 times a day. By the time her husband started Remicade, the damage had already been done and was irreversible, so they didn’t see the true impact of the biologic until after he had bowel resection surgery.
He’s been on Remicade for 11 years this summer and in that time, he’s been able to graduate with a master’s degree, work full time, work out, play softball, and attend family functions. He’s also put on close to 45 pounds and gone from malnourished and underweight to thriving.
“Remicade isn’t picture perfect – the few days after his infusion I like to say he becomes a toddler who can’t control their emotions. He’s extremely irritable and says it feels like his brain is on fire. He gets sinus infections more often than before (and apparently that’s not uncommon when you are on a biologic), and he still has some symptoms from time to time. But his last colonoscopy showed that he is in deep remission, and I know that he wouldn’t have achieved that without being on Remicade.”
Alexia Anastasia’s 11-year-old daughter started Remicade in February. The list of side effects and hearing a horror story from a friend who “had a friend who had a stroke” made her a nervous wreck. Ultimately, she looked at the research and the long history of pediatric use of Remicade and felt she was making the right decision alongside her daughter’s GI.
“It’s been a game changer. We learned quickly my daughter needs it every 4 weeks after trying to go for 6 weeks. I’m so grateful it seems to be working. Her fecal calprotectin is almost normal from originally being 3,460. Her inflammatory markers are back to normal. I just hope it keeps working and the side effects remain minimal. It’s been a challenging 5 months with this new diagnosis. Now that I can reflect, I’m grateful my daughter’s GI pushed for us to start a biologic immediately. My daughter was withering away before my eyes and now she is back on track.”
Beth Otto-Stapleton’s daughter Penny started on Remicade when she was diagnosed with Crohn’s disease in January 2017 at age four. She was given two infusions a few days apart while hospitalized during her first flare. Unfortunately, that is when Penny suffered heart damage and was diagnosed with heart failure because of the Remicade.
“She now does Vedolizumab infusions instead because it is a different class of biologic. We are thankful as a pediatric patient, Penny can go to a Children’s Hospital for treatments…it keeps the hard parts of the disease there and keeps our home a safe/comfy space. The great part about the infusions is that we also get blood work done and get instant feedback. I always ask the infusion nurse to give her an extra bag of fluids so she’s well hydrated.”
Dermatological Side Effects
While talking with patients about their Remicade experience, skin issues came up in a few conversations.
Remicade was the first biologic Dana Drengler tried. She says it worked the best and the longest for her. She was in full remission and lived a normal life while on it. Unfortunately, after about 3 years in, she started to develop red spots on her lower legs. They looked like broken blood vessels at first, but then started to spread and get larger, eventually turning into deep and painful ulcers.
“The ulcers covered my lower legs and became super painful, to the point where I couldn’t walk some days. It stumped my doctors, and they only thing they could think of was that it was a reaction to Remicade. They had me stop taking it and within a few months, my legs started to heal. I still have scars 5 years later!”
Mia Frakes has been using Remicade to control her Crohn’s inflammation since 2017, overall, she feels the medication does the trick, but she has what she calls the “oddest side effect”.
“I’ve been dealing with extremely red, dry, and flaky skin in strange areas like behind my ears and my belly button. My GI says she has seen this dry skin in other patients, too. I have to go to the dermatologist, and they give me topical medication to put on the dry areas, which seems to help.”
Madelynn Jessberger was diagnosed with Crohn’s in 2008, she’s been on Remicade the last three years. She was receiving infusions prior to getting her colon removed and was put back on the biologic after. Aside from some aches and tiredness after infusions, she also developed a rash.
“I developed psoriasis all over my body and my GI is unsure if it’s a side effect, a separate autoimmune disease, or an extra intestinal manifestation of Crohn’s. I manage the rash with thick creams and topical medicine from my dermatologist. Everyone is different, this is just my experience.”
Pregnancy + Motherhood and Remicade
Alyssa Leggett started Remicade in August 2018. At first, she was getting infusions every 8 weeks. Then, in 2019, two weeks before an infusion she started feeling fatigued and was dealing with urgency, pain, and diarrhea. Because of those symptoms, her infusions were moved to every 6 weeks.
“After I gave birth, my doctor wanted to switch me to the rapid rate infusion. I’ve been doing those since November 2020. They’re about an hour shorter and I don’t have any side effects from them. I feel like I can have a more stable life. I still get symptoms from time to time, but I attribute that to the food I eat. Thanks to Remicade, I reached remission and had a healthy, full-term pregnancy.”
Allie Heiman is grateful for how Remicade has helped prepare her body for motherhood.
“I haven’t had any side effects from Remicade and have found the infusion to be easiest in my hand with only minor bruising the next day or two. I started in March 2020 and was cleared to start trying for pregnancy in December 2020. After 13 years of negative scope results and being told I was not healthy enough for pregnancy, I could not be more thrilled with the outcome. I am hopeful to be a mom in the future, and grateful that Remicade made that a possibility with Crohn’s.”
Tayler Jansen is an IBD mom of two. “Remicade has been amazing! Remicade and Imuran have kept me in remission for the past 9 years and enabled me to have two healthy pregnancies.”
Shakila Almirantearena has identical 5-year-old twin girls. She was diagnosed with Crohn’s shortly after they were born and is currently in remission. Along with Remicade, she takes Methotrexate.
“I take Tylenol and Claritin at the infusion center to prevent any rash, etc. I usually take the whole day off work and really allow my body to rest. I haven’t had any major side effects. I’m usually tired the next few days and sometimes get a headache the day after my infusion, but Tylenol helps alleviate any pain.”
Christine Renee has had Crohn’s for 20 years, she’s a mom of two teens and a teacher.
“Remicade was a game changer for me compared to the previous meds I was on. I eventually developed antibodies to it, and it wasn’t as effective. My tips for those getting started are to not be afraid. I was so nervous about starting a biologic, but after the way I was feeling and the tests that my doctor performed, I knew it was the right thing to do. I started Stelara a few days ago and I’m hoping for similar results.”
Hydrate well the day before, day of, and day after.
Remember your headphones or AirPods so you can drown out the noise and watch a movie or show. Noise canceling headphones for the win!
Pack games and books to pass the time or your laptop so you can work.
Have someone else drive you when possible, in case you are drowsy from the Benadryl.
Pack snacks and drinks. Many infusion centers will also have this available for you.
Have a sweater or blanket!
Lauren Hopkins has been on Remicade well over a decade and receives what’s considered a “double dose” every 5 weeks. She’s found her sweet spot and has been able to maintain remission. She says, “Refrigerated Remicade mixed with room temperature saline feels COLD pumping into your veins. It shouldn’t hurt, so if it does, say something to your nurse so they can fix your IV.”
Have the Infusion Nurse run saline before and after your infusion to help with headaches.
Be your own best advocate. Speak up to your care team if something feels off, if your symptoms are persisting, or if you’re dealing with side effects that make your life challenging.
Remember if a biologic fails—it’s not on you, you didn’t fail anything, the drug failed you.
When Campbell Dwyer was three years old, her health took a turn for the worse. She was diagnosed with Hirschsprung disease, a rare congenital disease that affects the colon and intestinal motility. She underwent three surgeries by the time she was four.
Her life began with two colostomies before she transitioned to a permanent ileostomy in her thirties. After her 10th surgery, she joined several online support groups geared for those with ostomies. To her surprise, she discovered there were many children who had ostomies.
After doing research, Campbell was shocked about the lack of literary support for children coping and coming to terms with ostomy life. She decided to change that by creating a book series called “My Silly Illy”.
“I want children to understand having an ostomy does not define them. It is simply a piece of them that contributes to their individuality. My hope is that this book will help teach inclusion and acceptance.”
Her thought-provoking, heartwarming, and humorous story aims to help children understand what is happening with their bodies and how to thrive with their new appendage.
The only constant in life is change
Throughout her lifetime of coping with Hirschsprung disease, overcoming numerous surgeries, and transitioning from a state of merely existing to living. Campbell says she welcomed each high and low as part of her transformation.
“Making the decision to write this book series has been my greatest personal success yet. I have confidence that my personal battles with an invisible disease and life with an ostomy will encourage and motivate those younger than me and promote strength to their families. I can finally see that nearly forty years ago, my future was being purposefully designed to make a difference in the world.”
Bringing My Silly Illy to life
Talented illustrator, Ana-Maria Cosma, took Campbell’s vision, thoughts, and scribbles, and brought them to life with the hope of creating a life-changing and eye-opening literary experience for many.
“My vision for this book is that the ostomy will be portrayed to each child as their personal superhero. The last page of the book has a faceless child, this is by design. The child can draw their face, or the loved one can cut out a picture and place it on the spot. There are also fun hairstyles that can be cut out. I want children to see themselves in each page of this book; to see themselves enjoying their favorite foods, traveling, and playing.”
Gearing up for a hospital tours
In the months ahead, Campbell plans to visit children’s hospitals around the United States, as well as bookstores. She’ll be hosting book readings, signings, and round table discussions with families and children coming to terms with ostomy life. Her goal is to champion pediatric ostomy patients and help their loved ones and parents understand what the child may not be able to communicate.
You can order “My Silly Illy” in the following places:
Being diagnosed with IBD as a pediatric patient looked different in the 1970’s. For 54-year-old Brett L., the start of his patient journey began when he was only nine. The year was 1976. He started experiencing fevers, bloody diarrhea, vomiting, and abdominal pain. As he puts it—the symptoms started a year-long quest to find an answer. A quest that involved frustratingly long waits at doctor offices, endless tests, and medical trials. He was ultimately diagnosed with acute ulcerative colitis at the age of 10. Now, in 2021, Brett has unique insight and perspective to share with our community.
Patient “Number 1”
As you can imagine, Brett spent many years on high dose steroid and sulfur pills. The side effects of the steroids (moon face, weight gain, bloating, mood swings, and ravenous hunger, etc.) added insult to injury. From 7th through 9th grade, Brett missed nearly 60 days of school each year due to severe flare ups and hospitalizations. By the time he was 13, Brett’s parents were desperate for a cure as his condition worsened. With no relief from traditional medicine, they sought out additional care from holistic doctors, nutritionists, even an angel healer at one point! Nothing helped to manage Brett’s IBD.
“In 1981, I was 14. I’d been battling debilitating and severe flare ups that made me so weak I had to crawl to the bathroom or walk doubled over in pain. Each hospitalization was taking its toll. Over the years, though I was growing, I had lost 30 pounds. It was at this point that my doctor proposed something that had never been performed on a pediatric IBD patient—a total colectomy and “pull through” operation that would leave me fully reconnected and waiting for the ileostomy closure…allowing me to eventually go the bathroom normally again after a recovery period of a year or so. It was risky surgery back then. But not having it was a risk too. I agreed, and we went ahead with the surgery.” said Brett.
Brett was deemed “patient number 1” for this pediatric procedure and his case study was published in medical journals. To this day he remembers waking up from surgery in the pediatric ICU at Westchester County Medical Center in Valhalla, NY. He recalls counting 18 tubes and lines connected to his body and thinking that he couldn’t believe he chose to do this to himself. The surgery lasted 14.5 hours and the incision ran from his pubic bone to his sternum—the entire length of his abdomen.
Living with an ileostomy as a teen
“I learned to manage the ileostomy with some upsetting and messy mishaps at the very beginning. And in class sometimes the stoma would make embarrassing sounds. I learned to feel it coming and cover it with my hand to quiet it. But without a colon, I was now a healthy 14-year-old. The doctors said that upon examining what was left of my colon, they estimated I had about two weeks left before a fatal perforation,” said Brett.
A year later his ileostomy was reversed, and he was able to go to the bathroom “normally”, again. While he’s grateful for this—it hasn’t been all sunshine and rainbows. Brett says he initially had an abscess at the closure of the stoma. Ever since, he has gone to the bathroom more than normal people. In recent years Brett developed a challenging case of chronic pouchitis that at its worst caused pain and had him going 20-30 times a night.
The good news is that “after about 4 years of this, I finally seem to have treated and solved it myself, with psyllium husk powder at breakfast and lunch times, and 3 Lomotil pills with dinner. I’ve also reduced fluid intake during meals and become more careful about not overeating. I learned some of this in my online research about immediate post-op colectomy patients. The doctors had a hard time helping me with this, but I seem to have resolved it myself.”
From past to present
Today, Brett is a healthy 54-year-old man and his pouchitis has never been more under control. Through all the ups and downs with IBD, he’s lived a fulfilling life as a professional singer, and as an executive of multiple companies.
“In my career I’ve been an investigator, a head of marketing and sales, I’ve grown startup companies, and have traveled the world for business and pleasure. I’ve earned an advanced degree from an ivy league school, and I have an amazing 16-year-old daughter who is a gifted, performing singer-songwriter in her own right.”
Brett believes his ulcerative colitis has made him more appreciative of life and the little things.
“I have always been that person who lingers over sunsets, gazes at the moon, and stops and notices the teeny flowers poking through the cracks in the sidewalk, or street art, and the coincidental things one comes across as noteworthy or remarkable. I notice and really drink in the happy, good moments because I know what it’s like to not be able to be out and experience these things. I know I am fortunate to be here to tell my story.”
Here are some helpful nuggets of knowledge Brett would like both those with IBD and their caregivers to know:
Don’t let fear of IBD stop you from living your life and having fun, or asking that person out, or going out with friends, when you are feeling well. As soon as I was feeling well enough to get back out there after a flare up, I lived life to the fullest and played like every other kid. You deserve to be there just as much as every other kid, teen, or adult does. When you are feeling well, try to make the most of that wellness, and not let the fear of what might happen stop you from living.
You are not “less than”, because you have an illness. In fact, you may even have an added level of maturity because of your illness that others do not, because of your need to contend with it, and interact more with adults and medical professionals and present your situation to them in a coherent and meaningful way. Look for the silver linings in everything. Notice the small pleasures, they help you get through the down times.
To parents—your child is a survivor. It takes a lot to keep them down. They will have ups and downs with their IBD. But 2021 is the best time ever to have to live with this diagnosis. Current treatments and even surgeries have changed the game and the patient experience, for the better and the future is even more promising. IBD can be traumatic. Children and adults can benefit from seeing a therapist to help cope with the lifelong nature and complications of the disease.