IBD Motherhood Unplugged: “I have IBD and so does my Mom”

In the spirit of Mother’s Day—today’s article celebrates mother and daughter duos with IBD. Rather than focusing on the hereditary factor of Crohn’s and ulcerative colitis, this story celebrates the camaraderie, bond, and connection created when a parent and child both share the same disease. While the chance of passing on IBD when one parent has Crohn’s and ulcerative is relatively low according to the Crohn’s and Colitis Foundation (between 5% and 20% of people with IBD have a first-degree relative, such as a parent, child, or sibling who has one of the disease), it happens. My hope is that if you dream of being a mom or a dad, you don’t rob yourself of going after that dream because of the fear of passing on your disease to offspring.

As a mom of two (soon to be three!), I am the only one with IBD in my entire extended family. But, I often worry and wonder if my Crohn’s will be passed on to my children. I know this is a common fear many in the community grapple with. Check out these thought-provoking and comforting firsthand accounts from 8 mother-daughter duos that show how families unite in their diagnosis and lift one another up.

Corri Gardner and her mom both have ulcerative colitis. Her mother’s father also had UC. Corri’s mom was diagnosed with IBD while she was pregnant with her. All she knows since being diagnosed herself is having her mom and grandpa to confide in through the ups and downs of the disease.

“My mom has always been there to validate my fears and feelings on such a deep level since she knows exactly what I’m going through. When I was diagnosed, she expressed how guilty she felt over and over again. I always assure her that I would much rather be on this earth, living with UC, than to not be here at all. If someone is hesitant about having children due to their IBD, I would urge them to not make life decisions based on fear.”

Camryn Asham and her mom both have Crohn’s. She says having a parent with IBD helped her feel less lonely and more understood when she was diagnosed. Like anyone with a chronic illness she’s gone through a range of emotions on her patient journey—everything from anger to grief.

“I’ve had the “why me” feeling, but deep down I know it’s not my mom’s fault and there is no one to blame. I know my mom has felt guilty watching me go through traumatic moments and all the ups and downs. I’ve been able to witness my mom get through the highs and lows of IBD, and that reassures me I can get through any flare up or procedure, too. I know I can always count on my mom for help and support when I don’t feel heard or understood.”

Rachel Martin and her mom both have Crohn’s disease. Her mom was diagnosed at age 14, she found out she had the same disease when she was 22. While the diagnosis was devastating for both, Rachel says she finds comfort in knowing that she has someone close to her who can relate.

“I do feel as though my mom feels guilty for passing Crohn’s. I have a twin sister who does not have Crohn’s and it has been hard seeing her live her life without going through everything that I have gone through. Never in my life would I wish this upon anyone, especially my sister, however I wish that I never had to go through this. I never exactly blamed my mom, but I have spent a lot of time wishing I “lucked out” like my sister did. I know that my mom feels bad that I have had a really hard time coping and accepting that I also have a chronic disease.”

Diagnosed prior to a parent

Mary Catherine Kirchgraber was diagnosed with Crohn’s when she was 10 in 2000. Her mom was diagnosed during a routine colonoscopy when she was 50-year-old in 2013. Since her mom served as her caregiver and advocate since she was a pediatric patient, it’s made for a unique journey and perspective. They both seek medical care through the same GI practice and have been on the same medications. Mary says it’s nice to have someone to commiserate with about frustrations with insurance, feeling poorly, side effects, and more.

“My mom is the toughest person I know and never complains, so she inspires me in a million different ways. I wish she didn’t have to struggle the way I have, but it’s nice to have someone to lean on and ask questions to. My mom has always been my advocate and greatest support. She fought for accommodations at school, taken me to Mayo Clinic, dealt with insurance, and taken me to every doctor appointment and specialist I’ve ever needed. She created binders of medical records for me and often reminds me of my own health history when I don’t remember things from when I was a kid. I am so lucky to have her on my team.”

Sharan Kaur was diagnosed with Crohn’s in 2002, her mom found out she had ulcerative colitis in 2017. She says prior to her mom’s diagnosis she felt alone dealing with the day to day struggles of IBD. Sharan says because of her knowledge and experience living with IBD, when her mom began to experience symptoms, she was able to push for their general practitioner to take action immediately and reach a diagnosis. She is grateful to have another family member who can grasp the severity of the disease and who understands how easy it is to go from feeling perfectly fine one day, to barely managing to get out of bed the next.

“I think we find strength in one another. For years, my mom supported me through my worst days and although she didn’t completely understand how things were before her diagnosis, the support was always there. Finding out she had UC broke my heart because she’s always been so active, truly a supermom. I realized then that this would have to change for her as she would probably go onto face the same daily struggles that I do with fatigue. As an adult I’m sure this change in lifestyle is much harder to accept than it was for me.”

Mary McCarthy was also diagnosed with Crohn’s at age 12 in 1995, her mom didn’t discover she had Crohn’s until 2015 when she was 62 (and her dad has UC!). IBD was foreign to the McCarthy family when Mary was diagnosed though. She says her mom had a difficult time coping with having a child with a chronic illness. Even though her mom was well-versed on IBD by the time of her own diagnosis, hearing the news was still difficult for her.

“We deal with it mostly through empathy and humor. Being able to talk openly about the emotional and physical aspects of the disease helps. My parents and I joke about how we are colonoscopy experts and have seen every gastroenterologist in the city of Chicago. My mom knows exactly what I need before colonoscopies, which is often to get some alone time and get in the zone. We laugh about it now. “Mom, I love you, but I gotta get in zone. You can wait in the waiting room now.” My mom has been there for ALL important moments in my IBD journey. We sometimes reminisce about the complete chaos we went through when I was 12. We may have IBD, but we know life must go on.”

Michelle Schienle and her mom were both diagnosed with Crohn’s in 2015, she was 23 her mom was 52. Michelle’s diagnosis was the catalyst for her mom to seek additional treatment from a new gastroenterologist. As we all know it can be challenging to articulate IBD symptoms to those who haven’t experienced them. Michelle knows she can always count on her mom no matter what she’s going through. Even though she doesn’t blame her mom for passing on IBD to her, she did get frustrated that she didn’t recognize the suffering earlier as a child because that was her mom’s “normal”, too.

“Since she was living her life that way, she thought my problems were “normal”, so I had to wait until I was old enough to advocate for myself to get the answers I needed. I wish she wouldn’t feel guilty for passing it on to me, because it’s not her fault. Seeing my mom push through gives me strength. I’ve seen firsthand how she’s successfully raised a family, had a great career, and traveled the world (all things I aspire to do!) and done it with IBD. It’s a relief not to have to explain the pain and worry in detail because we just know what the other is going through. As unfortunate as it is that we both are going through this, having my mom understand what I am feeling both physically and emotionally helps to validate it. If my children are to ever get IBD, I am now confident that I am in the best position to take care of them because I know what to watch out for and how to be proactive about treatment.”

History repeating itself

Both Ellen Jenkins and her mom were diagnosed with Crohn’s when they were 18 and freshman in college at the same school! Ellen says her mom still feels responsible for her being sick, even though she has never blamed her for IBD.

“Growing up and watching my mom live a normal life despite her IBD comforted me when I was diagnosed. I am so thankful to have someone who understands firsthand what I go through. Although no parent would choose to pass Crohn’s on to their child, IBD has made us closer. I have never been upset that I got it from my mom. Instead, I’m thankful to always have her as an advocate in my corner who truly understands the struggles.”

A heartfelt thank you

As an IBD mom, hearing these experiences and perspectives really puts my mind and heart at ease. As you can see, there’s a common thread throughout. Rather than blame their parent for passing on IBD, these young adults look to their parents as a pillar of strength, a source of understanding, and as partners in taking on their illness. Through the pain and suffering there is also gratitude, clarity, and unbelievable resilience. Just how you have grown and evolved as a person after your diagnosis and throughout your patient journey, your child will do the same.

Special thanks to everyone who made this story possible. Your words, your raw emotions, and your candidness are sure to help many and shed light on the incredible dynamic that is created when a parent and a child both battle IBD…no matter what age their diagnosis comes about.

45 years with Ulcerative Colitis: What a former pediatric patient wants you to know

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.

Nori Health helps IBD patients re-gain control: How you can get free early access

This article is sponsored by Nori Health. All thoughts and opinions shared are my own.

When Roeland Pater was diagnosed with Crohn’s disease nearly 20 years ago at age 19 there was a lot he didn’t realize and a lot he tried to ignore. He felt like he was on cruise control the first few years after surgery led him to remission. A few years later, his IBD took a turn and so did his perspective on his health.

“I started to realize that everything I did in life was impacting my disease. Suddenly, I couldn’t do whatever I wanted when I wanted. I became cautious of my actions and decisions. I tried to get a better grasp of how my IBD was impacting my life by receiving personalized care, but I was struggling trying to find a way to do that,” explained Roeland, Founder of Nori Health.

He noticed that during his medical treatment, he experienced a lack of support and education between hospital appointments, with little to no focus on quality of life or emphasis on how he was living day-to-day. Like many with IBD, this left Roeland feeling frustrated, misunderstood, and like there was no hope in controlling his condition.

The inspiration behind Nori Health

As a professional in the tech industry, this caused a proverbial light bulb to go off in Roeland’s head. He identified this massive gap in IBD care and decided to dedicate his life to solving the problem, with the goal of helping others. He recognized the need for a digital solution to help people like himself better manage and control their disease through daily behaviors. This is how the concept and mission for Nori Health was created. The company received an investment two years ago, which drove the concept into a real product and an app.

“Research shows that people living with a chronic inflammatory disease typically experience a 30% lower quality of life when compared to healthy individuals. Closing this gap is our mission. We believe this can be done by improving the understanding of the disease and its triggers through education and disease management. We aim to give patients in our program a sense of control over their disease management,” said Roeland.

How the Nori Health app works

The Nori Health app offers an 8-week program for IBD patients, guided by Nori, a digital coach. Through regular conversations (text-based—like WhatsApp) with Nori you receive personalized insights on factors that are proven to impact quality of life, and symptoms like pain and fatigue. These tips can be saved to your personal dashboard, and you can implement them into your daily routine, helping to keep your IBD under control.

“Most apps on the market are focused on a tracking model. This puts a lot of responsibility in the hands of the patient to monitor their daily activities and to discover patterns that might trigger symptoms. We changed this model around to best support the patients. Nori guides the patients through their health journey, with personalized, evidence-based factors. Nori provides the user with actionable tips that can be saved in the app, which can then be easily implemented into daily routines and lead to significant change,” said Roeland.

You can think of Nori as an artificial intelligence chat coach. You will work together to discover the lifestyle factors that impact how you feel and learn about simple changes you can make to gain more control of your disease. The end goal? To have less pain, more energy, and less strain on your mental health. Changes include everything from forming a new hydration routine, to talking to others about your condition, to reaching a point of acceptance of living with a chronic disease.

Main areas of focus include:

  • Stress
  • Hydration
  • Exercise
  • Diet
  • Mental Health
  • Pain
  • Low Energy
  • Sleep

“We would like to emphasize the importance of finishing the 8-week program. Just like taking a full course of antibiotics, the true benefit from the app comes from completing the entire course of the program,” said Roeland.

The app is not currently open to the public, but I’m excited to offer 100 of my Lights, Camera, Crohn’s readers direct early access!

Getting started:

  • Download the Nori Health app for iPhone here and Android access here.
  • During registration use access code TEST212 for free access to the full program. 
  • As you are given free access to the app, you will be asked to provide feedback on your progress (this is in-app, and anonymous). The Nori Health team will reach out to you by email to collect feedback about your experience as well.

Hopes for the future 

Nori Health is deeply rooted in recognizing the power of community. The program was not only developed by an IBD patient but created thanks to the input of more than 600 patients in England, Netherlands, Belgium, France, and beyond. By participating in this initial launch, you can continue to provide valued feedback and guidance so that the team at Nori Health can make the appropriate tweaks and further understand unmet needs. So far, the feedback has been overwhelmingly positive and has shown that patients can be supported throughout their patient journey—whether they are newly diagnosed or a veteran patient.

“We’ve seen an average of 34% improvement in daily management (diet, stress, and exercising on a daily basis) with people who completed the 8-week program,” said Roeland. “Half of the participants whose social lives were compromised due to symptoms, started to reconnect with friends and loved ones. These are the types of improvements and shifts we had aspired to see happen when we created the app.”

By working with patients like himself, Roeland says these valuable insights have changed Nori Health’s focus and influenced them to go much deeper into the factors that improve quality of life.

Working from home is more than a job perk for those with IBD

The COVID-19 pandemic has normalized talking about chronic illness in the workplace and shed light on not only what it means to be immunocompromised and how it impacts one’s quality of life, but also the benefits and possibilities that working from home provides for everyone involved.

Prior to the pandemic, asking to work from home or setting up accommodations with your boss looked different. It could feel a bit taboo. Maybe you worried how the rest of your team would perceive you as possibly getting special treatment. Maybe you didn’t want to appear as if you couldn’t keep up or do what was expected of everyone else. But one of the positives to come out of this crazy time is that the way we work and how we work has shifted.

I’ve been a freelancer/blogger and stay at home mom since I became a mom in March 2017. That being said I worked full-time in the TV news industry, at a PR agency, and in corporate America at a natural gas utility the first 12 years I had Crohn’s disease. I am well-versed in how to navigate those difficult conversations with your boss, how to balance your health and well-being with your career, and what it means to thrive professionally while making sure your health doesn’t take a hit.

An opportunity for change

If the past 13-plus months have shown us anything, it’s how adaptable and flexible work can be. Businesses and organizations have real-life intel now that can help guide what the future of working looks like, and how employees can best be supported, engaged, and accommodated.

The chronic illness community can use this time as a springboard into the future and communicate their needs and hopes moving forward. According to the CDC, nearly 60% of adults in the U.S. live with at least one chronic illness. Even though that’s a huge percentage, many leaders still don’t know how to properly support employees who fall into this category and those of us who live with a disease such as IBD often question our own abilities and what we’re able to bring to the table compared to our healthy co-workers and counterparts. Working from home through the pandemic has evened out that playing field.

Having the flexibility to work from your couch or run to your bathroom in the comfort of your home versus in the middle of a big work meeting with your peers makes a huge difference. Knowing that you can schedule meetings and availability around blood draws, appointments with specialists, scopes, infusions, etc. offers great flexibility in managing your illness and getting the job done without feeling guilty for taking care of yourself.

How to better understand and support employees

From a chronic illness perspective, we push ourselves in all aspects of life, even when we’re running on empty because we constantly fear being viewed as less than. There are many ways business leaders can better support employees who are taking on a disease like Crohn’s or ulcerative colitis.

As people with IBD we worry about how we’re perceived by others because of the stigma that surrounds chronic illness. There’s guilt. There’s fear of being considered lazy. There’s the worry about coworkers judging you and thinking you’re a complainer or weak, when in fact they may not be aware of your whole back story.

So how can we improve the support of our managers?

Initiate communication: Ask your boss about setting up a 15-minute monthly one-on-one touch base to discuss how you are feeling and if you need additional support. Talk about what the next month looks like as far as doctor’s appointments, labs, tests, etc. I personally always felt better supported and understood by sharing my health struggles with my coworkers—whether it was my co-anchor and meteorologist or the communications team at the company I worked at. When I was hospitalized (which happened on multiple occasions) or needed surgery, I would email the entire team and give them a heads up about what was going on, so they heard it from the “horse’s mouth” and not through office hearsay or gossip. By articulating your patient experience you give others a chance to be empathetic.

Make the invisible—visible: It can be easy for us to downplay our pain or put on a smile when we’re flaring to protect ourselves, even on Zoom calls! The unpredictability of IBD makes work-life a challenge because you can start the workday feeling energized and ready to take on the world and after lunch feel like you can’t even stand up straight and need to lie down. The constant uncertainty of when symptoms are going to strike can be debilitating in and of itself. By being open and transparent in these moments of struggle you help paint a clearer picture of what you’re experiencing for those who don’t live our reality. In corporate America, I used to sit in the boardroom and start a meeting by casually saying “I just want to let you know my Crohn’s is acting up. I’m in a lot of pain. It’s hard for me to sit up straight so I’m going to slouch a bit and I even had to undo my pants!” I approached those moments with humor, but moreso to take off my “mask of wellness” and be transparent that there was much more going on in my mind and body than just the presentation I was giving or listening to. I feel being honest like this made my co-workers helped us build a stronger relationship and rapport.

-Come up with a hybrid schedule: As the world starts to open and companies discuss what the future will look like as far as working from home or in the office, consider what it may look like to work a couple days a week doing each and finding balance. Working from home hasn’t been a detriment to productivity, if anything this time has proved how flexible we can all be in the face of adversity. By creating a space of support and understanding, everyone can be successful. Talk about the options available, your comfort level with returning to work in the office (especially if you’re immunocompromised or haven’t had a chance to be vaccinated), and what the expectations are moving forward.

Improve inclusiveness: When a business or organization makes employees feel embraced, regardless of their health struggles, it speaks volumes. Even those who are completely healthy should see this as a valued characteristic of their working environment—whether in person or virtual. Nobody knows when their life could take a turn for the worse or when an unforeseen health issue could pop up. For many in the chronic illness community, we went from being healthy to waking up with a disease that will be a part of us, always. It’s on leadership and Human Resources to ensure those with chronic illness are provided with the support they need.

Stop celebrating overwork: Touting the employee who works around the clock and answers emails at 2 a.m. sends the wrong message. Instead, find ways to commend employees for different reasons. There isn’t one set of parameters that makes someone a great employee. Having work-life balance and recognizing the importance of having time to decompress, put health first, and spend quality time with family, matters and says a great deal about leadership style. The number of hours worked doesn’t equate to the quality of work or one’s competence. The onus is often on the boss or leader to speak up and set these expectations. Being able to manage your team’s energy will keep morale in check and make employees feel appreciated and more invested in doing their best, because they have the energy to do so and aren’t ready to tap out at any given moment.

Remote work is more than a job perk

COVID has forced the conversation and illuminated the challenges those of us with chronic illness are up against when trying to balance our health, providing for ourselves and our families, and being an invaluable employee. Thanks to the pandemic, employers are now looking to re-evaluate what sick leave and disability policies look like, especially as they relate to working from home. Those of us with a chronic illness may finally feel like we’re on an equal playing field when it comes to job opportunities and not having to worry as much about our bodies cooperating so that we’re able to do it all.

The Patient Experience: What the IBD Community says about Entyvio

Starting a biologic or switching to a new one after a drug fails you is a stark reality for many with IBD.  I personally have been on the same biologic since July 2008. Lucky for me, my body hasn’t built up antibodies and it’s served me well in managing and treating my Crohn’s disease. Recently, a woman with Crohn’s disease private messaged me on Instagram. She’s been on Humira (adalimumab) since 2006, but she’s no longer responding to it. Her gastroenterologist has advised she start Entyvio (vedolizumab).

Like anyone who deals with a drug failing them, she’s reached a level of comfort giving herself injections and knowing the ins and outs of the medication she receives. Now, 15 years later, she feels a bit like a fish out of water trying to navigate a new biologic and all the unknowns that come along with that transition, especially because she hopes to start a family in the next year.

After hearing from her and wanting to help, I went out on a limb and shared the following on my Instastory—to try and comfort her as she embarks on this new chapter in her treatment. “Hey IBD fam! Let me know if you’re on Entyvio and what your experience on it has been thus far. Looking to get info for someone who has been on Humira since 2006 and is making the switch after losing response to it. Appreciate your help and insight.”

The overwhelming response from the community

Several people wrote me directly about their experience with Entyvio—everything from tips and tricks to minimize side effects to how Entyvio has improved their quality of life or been detrimental to it. The response truly blew me away. We all know, IBD presents uniquely in each of us. So, one person’s experience with a biologic (or anything for that matter in treating Crohn’s or ulcerative colitis) must be taken with a grain of salt. At the same time, there’s a sense of camaraderie in connecting with those who use or have experienced your same therapy.

Since I’ve never been on Entyvio, I learned a lot in the process…and wanted to share my findings from these direct message discussions with you. Entyvio is known for its low side effect profile, as it specifically targets the gut. My hope is that this will help alleviate people’s concerns and help educate the community, should Entyvio be offered up as a possible treatment plan presently or in the future for you. (NOTE: I am writing this on my own accord—with NO affiliation or guidance to pharma). This is strictly created from IBD patient experience.

Infusion: Dosing schedule + timing

Generally, the recommended dosage is a 30-minute intravenous infusion, every 8 weeks. Depending on a patient’s response, this can shift to every 6 weeks or even every 4.

“Been on Entyvio since it was approved by the FDA. It has been very helpful since it targets the gut. I am on supplemental IBD meds, but I like that it’s a fast infusion and has given me my life back. It’s the longest I’ve ever been on a biologic, too.”

“It’s about an hour total to get the IV, wait for the med to be mixed, and have the infusion. I am noticeably tired the day of the infusion, but then bounce back quickly by day two. No other side effects at all. Entyvio has been a lifesaver for me!”

While some people saw improvement after the loading doses, Entyvio is known to react slower than other biologics. While most of us are used to biologics taking 2-3 months to work their magic, several people stated their GI warned them ahead of time that Entyvio could take 8 months to a year to be fully effective.

Side effects: The consensus among those who responded

Headaches/Dehydration/Fatigue

“I take Tylenol and Benadryl at every infusion because I found when I didn’t, I ended up with really bad headaches. I seem to feel better if I exercise for a little bit after my infusion, like walk 20 minutes or do 20 minutes on a bike. Real slow and easy. I often feel tired that day and maybe the next day, but after that I’m pretty much golden.”

“A lot of people get headaches after the infusion—they think from dehydration, so it’s helpful to ask for an extra bag of saline fluids during the infusion.”

“My friend and I both get tired after our Entyvio infusions. We both need a good nap after and then we feel fine. Hydrating the day before, during, and right after the infusion helps a ton.”

Hair Loss/Growth

“I lost a LOT of my hair while on this and had to take a large amount of prednisone for almost a year to get back on track because this medication. Please do research on this one! I did not do much and read a lot of people lost almost all their hair. Thankfully, mine grew back while I was pregnant. It was a big bummer! I’m on Stelara now and it works just as well as Humira did for me before my response to it also declined.”

“Been on Entyvio about 2.5 years and it’s the only drug to get me into remission! Was on infliximab (Remicade) before and became allergic and lost response. Minimal side effects with the Entyvio as well! If anything, I just noticed my hair doesn’t really grow the same.”

Navigating infusions and life

While the shorter infusion time is a plus, nothing beats the convenience of an at-home injection. At the same time, several patients shared the benefit of setting up an at-home infusion, so that’s something to look into versus going into a medical facility to receive your medication.

“I have ulcerative colitis and I’ve been on Entyvio for almost a year now. It’s the first biologic I’ve been on and it has helped a little, but it hasn’t been able to heal my rectum at all. I’m in a teen support group and one of the group leaders has had the same experience. After the starter doses, I was on every 8 weeks, but my drug levels were too low, so we switched to every 6 weeks and that didn’t do anything either. Since my symptoms were increasing, I was moved to every 4 weeks as of November. I honestly wish I were on Humira or another at home injectable only because I’m 18 and want to have a normal life that isn’t tied to needing to be home or to go the hospital every month, but it is what it is. The infusions don’t take long, but I do come home and sleep for the rest of the day. I started a pediatric clinical trial about a month ago since the Entyvio isn’t doing enough, but I still have to stay on the Entyvio.”

Pregnancy and Breastfeeding

For guidance on pregnancy and breastfeeding in regards to Entyvio, you can find helpful information at the IBD Parenthood Project and through the PIANO registry study. You can also connect with IBD Moms and Mamas Facing Forward, social media communities comprised of women living your reality.

Prior to planning to conceive, it’s always a good idea to communicate your family planning goals and dreams with your care team. Let your GI and OB know that you’re hoping to get pregnant 6-plus months ahead of time, so they are clear on what your expectations are. That way, you can put your best care plan in place, especially as it comes to staying on top of managing your IBD while you bring a life into the world.

“It was the first biologic that actually showed healing on my colonoscopy. I was on Entyvio my whole pregnancy, and now I’m breastfeeding on it.”

“I have been on all biologics and have had the best response to Entyvio. It put me into a 3.5-year remission (my only remission ever) and allowed me to have my son. Unfortunately, it does not target perianal Crohn’s, so I have had issues over the last few years. After trying Stelara, I had to go back to Entyvio because it’s the only drug that treats my luminal Crohn’s. It really is an amazing drug. No side effects for me, and my immune system is stronger than it has ever been—on the other drugs, I caught a million colds and would get bronchitis and pneumonia several times a year. Since being on Entyvio, I think I’ve gotten a cold a year (maybe?!), it’s a dream!”

“I have been on Entyvio for about two years now and it has been lifechanging. In terms of my ulcerative colitis, it has been day and night, and it has even gotten me into remission! I do feel really tired after my infusion and a little bit into the next day, but since I only get them every 8 weeks, that is a side effect I am more than willing to take on! I was on Entyvio for my entire second pregnancy and that was a breeze compared to my first.”

Be a proactive patient

Like many biologics and prescription drugs, there is a patient savings program available that you’ll want to check out. Learn more about Entyvio Connect here.

Helpful Entyvio-Focused Facebook Communities

Several of the people who responded shared they’ve had positive experiences and found support in Facebook groups geared for those specifically on Entyvio. Check them out:

Entyvio Mommas

Entyvio Warriors

Thanks to everyone who went out of their way to share their experience and help a fellow IBD warrior in need. Having this type of intel is good as gold and extremely beneficial in empowering patients as they make drug and treatment choices.

IBD is Not Your Fault

You did nothing to cause your diagnosis or your disease. Read that again. It’s not your fault. No matter what you may see on social media or hear from friends or family, those of us with Inflammatory Bowel Disease did not live “incorrectly” or do anything damaging that “sparked” our chronic, autoimmune issues to come to life.

I was incredibly disheartened recently by a post on Instagram that in so many words claimed that bad habits in life led to a man’s Crohn’s disease. He made blanket statements about how medication and surgery are not necessary and that it just takes a long time and reflection to reverse the damage he caused on himself after years of smoking, binge drinking, etc. The post was not only on his own feed, but also shared by a community IBD page with more than 8,000 followers. After days of endless comments from those angered by his assertions and claims, the post was taken down and the patient “advocate” made his Instagram private, but the damage was already done.

Hold up—what’s with the blame game?!

You may wonder why patient advocates like me get their feathers ruffled by claims like this. I can tell you why. I, along with so many of my counterparts in the IBD community, work tirelessly to educate and inform not only those with Crohn’s and ulcerative colitis about the patient journey, but also caregivers and friends. When misinformation is disseminated it sets the clock back, bigtime. It further stigmatizes our illness, especially when the false statements are said by someone who lives with IBD. Not only does it hurt those grieving and trying to come to terms with their lifelong diagnosis, but it’s a direct attack on those diagnosed as pediatrics and those who did everything by the book (ate well, exercised, got lots of sleep, managed stress, etc.) and STILL got IBD.

If there was a magic bullet or diet that helped “cure” or manage all of us, we would do it. If there was a way to prevent IBD, people would do it. Crohn’s and ulcerative colitis aren’t like lung cancer, which is sometimes caused by smoking or diabetes which is sometimes caused by being overweight or liver disease which can be caused by excessive drinking. IBD is complicated and mysterious. There is not a behavior or habit that is associated with possibly “getting it” one day. The two known factors—hereditary and environmental—leave much to the imagination. I personally have no family history. I was a picture of health until the two months leading up to my Crohn’s diagnosis in July 2005. It felt as though a light switch went off and my world went from being healthy and able-bodied to being chronically ill.

You did nothing wrong

If you’re reading this and wondering what you did to cause your disease, the answer is nothing. If you’re reading this as a parent and feel as though you could have fed your child less processed food or breastfed them instead of giving formula or shouldn’t have had your child vaccinated, please stop believing that. I know we all want a reason. We all want answers and some clarity as to the why—but, at the end of the day, does it really matter? Focusing on the why doesn’t help us focus on the how. HOW are we going to get through this? HOW are we going to manage our disease and live a full life? HOW are we going to cope during flares and periods of remission? HOW are we going to navigate the unknown and thrive? HOW are we going to find the right treatment plan? HOW are we going to target our triggers and learn what to avoid? Focus on what you can tangibly do to improve your patient journey and less on the coulda, shoulda, woulda’s, because just like each case of IBD is unique, so is each back story.

Here I am as a little girl. Long before being diagnosed at age 21. This little girl did nothing to deserve or cause Crohn’s disease.

Stop the finger pointing and the blame game. Stop making the medical community out to be the bad guys and the adversary. Stop acting as though those who depend on medication and need surgery failed in any way.

Start collaborating with your care team and finding physicians who listen and genuinely care about the approach you wish to take to manage and treat your disease, while also understanding that a holistic and “med-free” approach may not be feasible for your type of disease process. Start getting involved and educating yourself about how IBD manifests and the complicated nature of not only Crohn’s and ulcerative colitis, but also the extraintestinal manifestations and mental health aspect that are often not talked about. Even if you’re on medication or have had surgery you can still take whatever measures make you feel better in a complementary way. It’s not all black and white. There’s so much gray area. You can be on a biologic and still try any “elimination diet” you’d like. It’s just a matter of doing what works best for you, without pointing the finger or demeaning others in our community. Start connecting with those who live your reality and lift you up, rather than make you feel like you’re taking the easy way out.

This is 21-year-old me. There were moments where I felt very sick while on this Spring Break trip my senior year of college in March 2005. I attributed the abdominal pain to traveling and eating different food in the Bahamas. Little did I know four short months later I’d receive my Crohn’s diagnosis.

I know that if my 21-year-old self came across posts on social media claiming I caused my Crohn’s and that I could “heal my gut” on my own, I may have believed it. I can tell you nearly 16 years into this, I know without a doubt that is not the case. I am not a failure for taking medication, needing surgery, or trusting my physicians. I credit my 5.5 years of remission to being a compliant, proactive patient who believes in science, educating myself on the facts, and realizing that this disease is bigger than me and a constant learning process. I don’t need to know my why because I’ve done a damn good job of discovering my how’s and you can, too.

He made me an IBD mom four years ago…here’s what I’ve learned

Four years ago, today, I became a mom. Our son Reid Robert was born and placed into my arms for the very first time. Like any parent, especially one with a chronic illness, those initial moments were emotional and overwhelming in the best way. A wave of relief rushed over me as I lied on the table after my scheduled c-section, grateful my body that had fought Crohn’s disease since 2005, had brought a perfectly healthy baby boy into this world. But I was also nervous about my abilities as an IBD mom and what the journey of parenthood would look like as I juggled taking care of myself and this tiny little human. How would my life with a chronic illness and as a mom play out?

Fast forward four years. I am now a mom of two, with a baby boy on the way (24 weeks tomorrow)! Over these last 1,460 days, I’ve learned and grown a great deal both personally and as an IBD patient. Today—I share that perspective and knowledge with you. Perspective and knowledge, I wish I had when I first became a mom and what I’m continuing to learn along the way.

  1. Fed is best. There is so much pressure on how women choose to feed their babies. It’s ridiculous. I breastfed Reid the first three days and he had formula from that point forward because I was nervous about my biologic. The second time around, I did more research, and chose to breastfeed my daughter. Our journey lasted for six months (my milk supply ran out once I got my period). I supplemented with formula. I’m hoping to nurse our final baby when he’s born in July. That being said—no matter what you choose, it’s your choice. Your baby will thrive. Don’t beat yourself up over it. Drown out the judgement and speak up if someone questions your decision for you and your baby. For me, breastfeeding is a labor of love. I’m not going to act like I enjoy it, because it was hard for me. It’s not something that comes natural for all, and that’s ok. No one is going to ask my kids when they are in elementary school or high school how they were fed or know the difference.
  2. What they see, doesn’t always hurt them. When you’re cowering on the toilet in pain and they’re watching with eyes that speak of concern. When you’re sitting on your couch about to do your injection. When you’re struggling to stand up straight because your abdominal pain is too much. Don’t shield them from your pain. That pain is part of your family story and it’s important you are honest and upfront. It’s those moments that shape their little hearts and their everchanging minds.
  3. Kids roll with the punches. Have to cancel plans or have a low-key day inside watching a movie instead of going for a walk or to the park? —that’s ok. Your children will feel loved and taken care of just the same. Kids are flexible. They don’t need to stick to a rigid schedule to be happy and fulfilled. At the end of the day, it’s your love and support that matters most.
  4. Innate empathy from a young age. With my oldest being four, I can’t tell you enough how many times I’ve been blown away by his empathetic heart. Before he was even two years old, he would kiss my thigh after my injection and walk up to me in the bathroom, give me a hug, and pat my arm or stomach to comfort me. Now, he asks me if I’m hurting or in pain. He knows mommy isn’t always healthy, but that she’s always strong and gets through it. That empathy goes far beyond me—I see it in the way he is with others and it makes my heart feel like it’s going to burst with pride. I credit that aspect of his personality to what he’s witnessed these first few years of life, and for that I’m grateful. I can guarantee you’ll see the same with your children.
  5. Greatest source of motivation. Even though I’ve been in remission since August 2015, my kids still serve as my greatest motivation on the difficult days with the disease. Whether it’s pain, prepping for a scope, or going through a procedure, I keep my eyes on the prize—them. Just thinking of them gets me through everything. They give me so much to fight for, day in and day out. It’s not just about me—it’s about all of us.
  6. The importance of communication. When you become a parent, communication becomes even more paramount in your relationship. If you don’t share when you’re struggling or symptomatic, your partner can’t offer the support you need. Even if you’re not in a full-blown flare, it’s beneficial for everyone involved (you, your partner, and your kid(s)) that you share when your IBD is causing you issues. I always text my husband when he’s at work or simply say, “I’m having a bad Crohn’s day” or if I’m in the bathroom for a long time after dinner while he’s trying to get the kids to bed …and that’s all it takes to get the message across.
  7. Asking for help doesn’t make you weak. You’ve probably heard the saying “it takes a village to raise a child” …and it really does. You are not failing or less than because you ask or help, need a break, or time for yourself. You will be a better mom if you take time for you. You’ll be better able to keep your disease in check if you have time to relax and de-stress. I’m not always the best when it comes to accepting or asking for help, but as I gear up for three babies four and under, I know I’m not going to be able to do it all on my own and that I’m going to need more out of my village.
  8. Your health can’t go on the backburner. When you’re a mom, your needs often go to the bottom of the totem pole. When you are an IBD mom, they can’t. While I used to try and “brave out” my symptoms until the last possible moment, as a mom, I’ve completely changed. After nearly 16 years living with Crohn’s, I know when my body is speaking to me and now, I listen and address what’s going on immediately. I credit being proactive and sharing with my GI when it feels like my remission may be in question for the reason why I’ve been able to stay in remission all this time. I’ve gone on bursts of steroids, had my trough levels checked for my biologic, and done fecal calprotectin tests through the years when needed. The last thing you want as a parent is to be hospitalized because of your IBD. To me—it’s inevitable. It’s not a matter of if it will happen, but when. But I do everything in my power to keep myself home and out of the hospital and will continue to do so until that’s no longer possible.
  9. Every “tummy ache” and loose stool from your child is not IBD. When my kids say they have a tummy ache or I seem to think they’re going to the bathroom more often one day than not, I’m immediately worried and concerned. Could it be IBD? Why are they feeling this way? Is it my fault? What do I need to watch out for? All the questions flood my mind and sometimes my emotions get the best of me. Then, my husband normally talks me down and says it’s probably nothing and I need to stop jumping to conclusions. He’s right. Chances are potty training could be causing tummy aches. Or maybe like the rest of the population, they are going more because of something they ate. The chance of passing along IBD to your child (when one parent has it) is only 2-9% (according to the Crohn’s and Colitis Foundation). Remember that.
  10. You are their hero. Of course, there are times I wish I wasn’t an IBD mom…and “just” a mom. At the same time, I credit my disease for much of my outlook on life and how it helps me cope with setbacks, but also celebrate what to many others may be the mundane. My kids don’t see me than less than. When they sit through doctor appointments in the stroller and blood draws, or watch me make faces drinking colonoscopy prep, or count to 10 while doing my shot before they go to bed, they simply see their mama. This is their normal—they don’t know anything different. When I talk to teenagers or young adults who grew up with a parent who has IBD, I always hear the same thing— ‘they are my hero’.

Along with being a hero to your little one(s)…you are also…

Someone who takes unpleasant moments in stride.

Someone who wears the title of “mama” with great pride.

Someone who will never stop fighting for the feel-good days.

Someone who doesn’t allow your illness to rob you or your child of joy.

Someone who goes after their dreams—like that of being a mom—even though your back story may be a bit more complicated.

Someone who is just as worthy as anyone to be a parent.

We’re four years in, Reid. Like everything in life, each moment—beautiful and challenging—is fleeting. Thank you for being patient with me, for understanding me, and for being a daily reminder that I’m so much more than my Crohn’s disease. Being your mom is my greatest title and has been the best chapter of my life story and patient journey thus far.

IBD Motherhood Unplugged: Exploring Natural Procreative Technology

Chronic illness can feel all-consuming, especially while you’re trying to balance work and your personal life. According to 32-year-old Allison Wade of Texas, living with ulcerative colitis since 2008 prepared her for the struggle of infertility after living through a four-year flare. Yes, you read that right. Allison was hopeful her and her husband, Nick, could begin their journey to growing their family. Unfortunately, just as she felt the relief of getting her IBD under control, she found out she would be dealing with another condition where there is not a “one size fits all solution.”

This edition of IBD Motherhood Unplugged looks at juggling the mental and emotional struggle of coping with and mourning your body failing you not only with ulcerative colitis, but also infertility, while also being your own advocate for your care plan. As Allison says the question of “WHY” she’s unable to achieve something that women have been doing forever, haunts her.

Allison is a healthcare worker. Her world came crashing down during the pandemic when she found out bringing a baby into this world would be more complicated than she ever thought.

“When I received news that I was in remission after the four-year flare, I was told we needed to get pregnant right away to capitalize on my IBD finally being under control. I underwent an HSG procedure to make sure that I didn’t have any adhesions or blockages in my fallopian tubes due to the chronic inflammation in my colon. We were told everything was normal,” explains Allison. “I also had blood work completed to ensure that I was truly ovulating and that was also normal. We tried for a year and were not successful.”

Allison and her husband met with a fertility specialist in April 2020. The nearest fertility specialist was two hours away, so they set up a telemedicine visit. During the initial consultation they were told it sounded like they were dealing with unexplained infertility.

“My cycles were like clockwork, I was getting positive ovulation tests, my hormone levels after ovulation suggested that I was truly ovulating, there was no reason as to why I had never seen two lines on a pregnancy test.”

The fertility game plan

Allison and Nick set up a game plan with their fertility team that involved three rounds of Intrauterine Insemination (IUI) plus Clomid. If she was not pregnant after that, the next step was IVF. Allison says she felt overwhelmed but was confident that they were going to be pregnant after the first month. Looking back, she says she was naïve to think that way.

“Emotionally, each month is a roller coaster that comes and goes quickly. Each month that passes you feel the gravity of emotions that come with each negative pregnancy test. Financially, it has been difficult because insurance does not cover my fertility treatments and rarely covers my medications. Let me just tell you that every ultrasound and every blood draw adds up. I have to remind myself regularly of how it will all be worthwhile in the end.”

Keeping stress in check

As anyone with IBD knows, managing stress is imperative for helping to keep symptoms at bay. Along with the worry about getting pregnant, Allison has the fear of flaring with her ulcerative colitis.

She explains, “The biggest area of stress has been managing all the appointments and arranging my work schedule on the days I have to unexpectedly drive to Houston for a 15-minute ultrasound. I am very lucky that my job has been understanding through this time.”

Not to mention she also has to take time away from work to receive her Remicade infusion.

“I would advise other IBD women to find ways to manage all the stress and emotions that come along with infertility and chronic illness. I highly recommend seeking counseling services. It is nice to have someone to talk to who is not emotionally involved in the outcome. It is a difficult time for all women, however when you also have IBD, I feel like you are now adding all these supplements, medications, and appointments to your existing list of treatments for your IBD. Find a way to organize everything so that you’re able to manage everything without getting too overwhelmed.”

Utilizing Natural Procreative Technology instead of IVF 

After two failed IUIs, Allison knew IVF was on the horizon. She didn’t feel as though all her concerns were being addressed or that her needs fit into the typical cookie cutter approach.

“I felt like we were being rushed to IVF without any real answers as to why my body was unable to conceive. My husband and I were not emotionally or financially prepared to begin the process of IVF, so we decided to get a second opinion and look at other options.”

This is where Natural Procreative Technology or NaPro comes into play. Allison liked that NaPro doctors look to diagnose the root cause of what is causing your infertility, in hopes that you can conceive naturally without the use of IUI or IVF. The success rates are comparable and often exceed those of IVF, without the increased risk of multiple pregnancies or birth defects.

The Creighton Model of FertilityCare System™(CrMS) is the method of observing and charting important biomarkers in the female cycle. The charting and observational work is the basis of evaluation and treatment in NaPro Technology. Allison has been charting her cycles for the last six months. 

“When I went to my first NaPro appointment, the doctor spent an hour talking to me in the office and my husband on Facetime. She answered every question and explained that she would be as aggressive as we wanted her to be,” says Allison. “She wanted me to chart my cycles and to get extensive blood work completed after ovulation to look at my hormone levels. She also spoke to me about diet, stress, activity levels, and she started me on several supplements. When I left that appointment, I was so happy because I felt like she was treating me holistically and was going to find the cause of my infertility.”

Keeping her eyes focused on the future

Allison is going to have exploratory surgery next month to look for scar tissue or adhesions that may be the result of chronic inflammation from her IBD, which could be contributing to her struggle to get pregnant. She is due for her Remicade the same week as her surgery, so she must push her infusion back until her incisions are healed. As a woman with IBD, going through infertility, this is the reality that is often not discussed or thought about.

“While I try to remain as optimistic as possible about creating a baby that is genetically ours and that I can carry, our hearts would definitely be open to both surrogacy and adoption. My dream has always been to be a mother and I will do everything that is possible to achieve that dream.”

Connect with Allison on Instagram: @al_avawade

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

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

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

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

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

The unforeseen miracles in the making

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

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

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

Preparing their hearts for something bigger

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

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

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

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

The blessing of Vivian Rose

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

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

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

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

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

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

The role of faith through IBD and infertility

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

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

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

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

Megan’s advice for IBD mamas in waiting

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

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

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

Connect with Megan on Instagram: @mrsmeggcape

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

She’s a physician in Ethiopia looking to pave the way for those with IBD. She understands the need because she was diagnosed with Crohn’s in August 2016 at age 22 while she was a fourth-year medical student. After suffering from debilitating symptoms for eight months, she finally received a diagnosis. Dr. Fasika Shimeles Teferra says in her home country and in developing countries, she had always been taught that inflammatory bowel disease was non-existent. She felt isolated and alone as she embarked on her journey with chronic illness. There were no resources. No support. She had no clue where to turn when it came to being understood and knowing how to navigate nutrition.

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

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

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

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

Holding onto new hope

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

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

Launching Crohn’s and Colitis Ethiopia to make a difference

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

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

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

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

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

Bringing IBD to Prime Time in Ethiopia

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

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

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

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

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

Email: fasikateferramd@gmail.com