Pregnant with #3 and excited to share more news with you!

Well, the cat’s out of the bag. I’m 14 weeks pregnant (tomorrow) with a baby BOY! We will be family of five in mid-July. Since as long as I’ve remembered, I’ve envisioned my life with three children, I just never thought it would happen in the middle of a pandemic! Bobby and I feel extremely fortunate with all the outpouring of love, support, and congratulations during this exciting time for our family. As an IBD mom, I feel constant gratitude that my remission has held strong these 5-plus years and enabled me to have healthy, uneventful pregnancies. So far, out of all four of my pregnancies (miscarried between Reid and Sophia), this one has been my “easiest”. Aside from too many migraines to count, the nausea and fatigue in the first trimester were minimal and I feel great most days.

While I plan to be transparent and share content over the next six months about my experience being a high-risk pregnancy during these crazy pandemic times, I also want you to know I’m cognizant of the fact that pregnancy announcements, and pictures of baby bumps can be a trigger for our community. I am empathetic to the fact that family planning can look differently for those of us with Crohn’s and ulcerative colitis. Because of this—I’m excited to announce I’ll be launching a special series on Lights, Camera, Crohn’s entitled “IBD Motherhood Unplugged”.

IBD Motherhood Unplugged topics will include (but are not limited to):

  • The decision not to have children due to IBD
  • Being told you can’t carry a child and coping with that loss
  • Adoption
  • Surrogacy
  • Infertility
  • IBD pregnancy after loss
  • Single parenting with IBD
  • Biologics and pregnancy/breastfeeding
  • The list goes on…

If you want to share your experience of navigating family planning or motherhood with IBD, please reach out. I already have several women lined up, ready and willing to share their personal journeys. I’m anxious to share their brave and resilient words with you.

My advocacy focus has always been to be the voice I so desperately needed to hear upon diagnosis and through all of life’s milestones. I want you to feel seen. I want you to feel heard. I also want you to remain hopeful that pregnancy and motherhood is possible for most women with IBD, we all just get there in different ways.

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

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

John and his brother, Bobby

Connecting with the Crohn’s & Colitis Foundation

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

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

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

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

From Camp Oasis to Day on the Hill

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

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

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

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

There are two main bills volunteers have been focusing on:

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

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

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

How to get involved

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

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

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

Taking Public Policy Advocacy a step further

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

He recently launched the following social media pages:

Facebook: Crohn’s and Colitis Legislative Advocacy

Instagram: @ccla_ig

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Juggling Women’s Health while being a mom of 3

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

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

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

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

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

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

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

Helpful Resources to Educate Yourself About IBD + COVID Vaccine

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

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

My wishes for the IBD community in 2021

It’s no surprise 2020 was a dumpster fire for many reasons. It was a year of challenges, struggles, worries, frustrations, loneliness, and sadness for many. I don’t expect things to drastically change in 2021, as we’re still in the thick of the pandemic, but I do have some wishes for the IBD community as a whole as we look to the future and beyond. 

I hope you…

*Live in the moment. Rather than get lost in the past and the way things used to be or where you could be or what could happen, focus on the now and the beauty that is still around us.

*Advocate for yourself. Use your voice and speak up about how IBD impacts your health, what changes need to be made in your care, and what you need to thrive. 

*Don’t use social media as a crutch. While social media can be an incredible connector, especially as we stay home and remain socially distant, try not to base your reality off of it. It’s a highlight reel. You know which accounts and which posts cause you to feel a certain way. Protect your mental health and overall well-being by limiting the amount of time you spend on social channels.

*Go after that job, love interest, dream of having a child. Stop thinking you don’t deserve or aren’t capable of achieving your goals because of your chronic illness. The path to reaching the goal may have some detours or look different to you than expected, but go for the gusto. 

*Be proactive with managing your health. Stay on top of all medical appointments, despite the pandemic. As chronic illness patients it’s imperative we manage our care and make it a priority. Leave no stone unturned. Give yourself peace of mind by knowing you did all you could to give yourself the best quality of life.

*Have the hard conversations. Confrontation and difficult talks aren’t anyone’s favorite, but the longer you let something stew, the worse it’s going to be on everyone involved. Internalized stress will only exacerbate your symptoms.

*Celebrate the small victories. These are difficult times, make sure you stop to realize all you are doing and all you’re going through. You may feel stagnant or like you’re not accomplishing much, but each day you’re learning something, growing,  and brightening someone’s day without even knowing it. 

*Get outside more. Fresh air does a world of good. Even in the winter months, when it’s cold, bundle up and try and go for a short walk for a change of scenery. Clear your mind and take in your surroundings. 

*Stop feeling guilty for saying no. This entire pandemic our community has had to feel like the “bad guys” by saying “no” to social gatherings and functions. If you have to second guess something or if a decision doesn’t sit well with you, trust your gut. Don’t worry about disappointing anyone but yourself. Your health and well-being comes first. If someone wants to judge how you manage your safety, let them.

*Are mindful of what gives you energy and what zaps it from you. Focus on the people and activities in your life that make you feel refreshed, alive, and at home. Not everyone is going to love you, not everyone is going to mesh with you, don’t force it. Love the people who love you hard and don’t worry about the rest. 

*Stop the comparison game and focus on all you bring to the world as an individual, despite your illness. Rather than feel like peers have what you need whether relationship wise, lifestyle wise, etc…know that nobody’s life is perfect. Everyone has their own struggles. Chances are you just don’t know about them. Practice gratitude and mindfulness exercises to keep yourself grounded. 

In many ways our IBD has prepared us for coping with and handling with much of this pandemic. Despite the unknown before us, have confidence better times are ahead. With the vaccine available, hope is on the horizon.

Fears from the frontlines: How an ICU nurse with Crohn’s takes on COVID

She’s an ICU nurse who’s been braving COVID since the start of the pandemic and she has quite the story to tell. Abigail Norville, of St. Louis, is not only on the frontlines as a healthcare worker, but she also has Crohn’s disease and is immunocompromised from her medication. In mid-November, Abigail tested positive for COVID. This week on Lights, Camera, Crohn’s, she shares her unique journey through the pandemic and what she wants others to know.

Abigail’s IBD diagnosis story

Diagnosed with Crohn’s at age 16 in 2013, she remembers falling asleep in class everyday and experiencing abdominal pain that would keep her up at night. Teachers started giving her detentions for sleeping in class. After a few detentions, she started excusing herself from class so she could go into the bathroom, set a 10-minute alarm on her phone, and lay her head against the stall wall so she could rest and not get in trouble. Along with that, she dropped 32 pounds in one month.

At the start of her patient journey, Abigail was treated with steroids such as prednisone and budesonide, without a maintenance therapy in place. Before starting biologics, she was also put on Apriso, Lialda, Asacol, and Pentasa. When these medications didn’t cut it, she started Remicade treatments.

“The infliximab infusions greatly improved the disease presence in my intestines, but I was unfortunately experiencing new chronic joint pain, extreme fatigue, and skin rashes. At the time I assumed these were side effects from treatments. I told myself to “pick my poison” and I could keep my intestines or experience these unpleasant symptoms, so I of course continued with the infliximab infusions,” said Abigail.

Unfortunately, after a few years, a rheumatologist diagnosed her with drug induced lupus (infliximab induced lupus), and she was immediately taken off Remicade.

She started Entyvio in early 2020 while working in a COVID ICU and had to hold off the infusions due to the nature of the loading doses. Fast forward to today (Dec. 2020), and she has now finished her loading doses, in conjunction with prednisone and sulfasalazine daily.

Since diagnosis, Abigail has endured three surgeries and countless scopes.

Working in the ICU during COVID while taking on Crohn’s

Abigail currently works in a medical/pulmonary ICU and treats patients with multiple life-threatening comorbidities. Unfortunately for her, this is her first job. She’s a brand-new ICU nurse. While she could have thrown all her years of education and desire to be a nurse out the window to avoid the pandemic, she feels being a nurse is more than a job, it’s an obligation. Her GI told her she was his first patient to request a note to “continue to work” rather than asking for a note to stay home.

“When the pandemic started, many of us thought this would last a few months and we could return to the previous way of life by the end of the year. I remember having a conference call on a Sunday night with my manager stating we were the official COVID unit. I didn’t realize the depth of this pandemic until every nurse and physician stood in a circle one day and agreed that there was no emergency in a pandemic, and we were to always protect ourselves with PPE. Everybody around me was scared but… what were we to do? This was our job. We have bills to pay,” said Abigail.

Abigail recalls how her anxiety regarding her own immunocompromised conditions worsened as she witnessed her patients struggle with COVID and learned of nurses moving into hotels and dorm rooms to protect their families.

“My physician advised me to find a new job, but this was my first nursing job, and I did not want to burn a bridge early in my career. When we intubated my first COVID patient for her to be placed on a ventilator, she made me agree to call her daughter and repeatedly told me she was scared. When this patient did not make it and we continued to see death from COVID, I was worrying myself sick over my own health. The nurses around me were also scared, were quarantining from their families, and I felt out of place saying I needed to work elsewhere when they were also risking their lives.”

Ultimately, Abigail’s GI said she could hold off on receiving her loading doses of Entyvio, but that she would need to start steroids, again. She worked in the COVID unit, taking high dose steroids. Despite this, she was losing weight from the physical labor of working the COVID floor and the worry she felt about how her Crohn’s would act up if she ate while at work.

“I was working and not eating to ensure I did not have to leave a COVID room abruptly to be sick in the bathroom, when most patients were extremely unstable. Time did not permit you to think of your own health when your patient was dying. There were times I found myself in a COVID room for hours and would come out of the room sweating through my scrubs, wanting to pass out, and reminding myself I really needed to eat some food. My Crohn’s symptoms were worsening and my inability to care for myself was impacting the severity of these symptoms. I told myself I had to find a new job that allowed me to start my Entyvio treatments, even if I did not want to. If I do not care for myself, I cannot care for my patients.”

Abigail ended up switching jobs in June and started working at a different St. Louis hospital. Unfortunately, dodging the bullet of treating COVID patients was short-lived in the ICU and she inevitably was back to square one. At this point, she made the decision to start her Entyvio loading doses. She personally felt that no matter what unit she was working on, she was at risk working as a nurse.

Testing positive for COVID

Abigail tested positive for COVID in November. She wasn’t too surprised. Her symptoms pointed right to it. She was scared her chronic conditions would impact how severe her case would be and says she was anxious throughout her quarantine. She landed in the ER once, but luckily was ok and made a full recovery.

“The pain and suffering are real, whether you experience it or not. Watching people die with no loved ones present is happening every day. It’s on us to realize our lives are not the center of the universe. Just because you are not experiencing the effects of the virus, doesn’t mean it is not serious. I don’t know how to explain for people they should care for other people.”

How IBD shaped her career path

Abigail says she’s unsure if she would have ever become a nurse if she did not have IBD.

“My time as a patient has allowed me to understand what it is like to be the patient in a hospital bed, giving me a deep sense of empathy. While I have never found myself in the condition most of my critically ill patients are in, I remind myself that it could be me or a loved one in this hospital bed every day.”

Abigail told herself after her Crohn’s diagnosis that she may have Crohn’s disease, but it does not have her.

“There have been moments where I felt the disease definitely owned me, but ultimately reminding myself that this disease does not define who I am creates a sense of motivation to become who I want despite my health obstacles.”

As of now, Abigail has not received the COVID vaccine as a frontline ICU nurse in St. Louis. She’s anxious to get her first dose as the pandemic battle rages on.

Sticking to your guns: How to Speak up During Blood Draws and IVs

All it takes is one experience to alter how you respond and react to the way you receive medical care. For me, it was July 2008. I was getting admitted for an abscess the size of a tennis ball in my small intestine. No one could start my IV. I was in excruciating pain. It took eight tries to get an IV going. EIGHT tries. It was so emotional…and aggravating. It took two nurses, a rapid response nurse, and finally an anesthesiologist to get the job done. For many in the IBD community, we have medical PTSD. A term not to be taken lightly. It’s moments like the one I mentioned before that have scarred me in a way that impacts every single IV I receive. I get anxious, my mind reverts to the past trauma, and I don’t trust that the person taking care of me will be able to get me in one stick.

While this may not be fair to the medical professional, in my 15-plus years with Crohn’s, I can attest to the fact that no matter how many times you say, “you have bad veins” or that you’re a “tough stick”, you’re typically told “it will be fine” and that they “hear that all the time.”

This week—I offer up some tips for communicating your needs when getting blood draws and IVs. Sometimes it can be overwhelming when you feel as though your fears or worries are being downplayed. You may not want to be “that patient”—the one who speaks up and demands the care they deserve but are scared to ask for. This also goes for parents who are watching as their child may be stuck over and over and over again, and not knowing when the right time is to speak up and say something.

  1. Ask for a butterfly needle for blood draws. As soon as you sit down to get your blood drawn, casually say you have tiny veins, and a butterfly works best. If the phlebotomist says you don’t need one (yes this happens)—say you have IBD and get blood draws all the time and know what works best for you, especially considering the number of vials that are generally taken in one sitting.
  2. Give each person two tries. Once I experienced eight tries for an IV, I instituted this rule for my care from that point forward. I usually tell the nurse/phlebotomist nicely at the start that I give each person two tries, and after that someone else must try me. If they successfully give me an IV in one try, I make sure to give them kudos and thank them.
  3. Know your spots. If you have bad veins like me, you know where your “good vein” is. If the antecubital is not working, go for one in your hand. If it’s an IV, try and do your non-dominant hand, as the placement can be challenging if it’s in for multiple days.
  4. Ask the medical professional to break out the vein finder. This can save everyone (not just the patient) some time and energy. This has worked wonders on me in the past to help healthcare professionals locate and access which vein is best to go for. It’s completely painless. It’s like x-ray vision that shines light under your skin and shows the veins below.
  5. Take advantage of numbing cream for pediatric patients (adults can also ask!) While the cream can be great for taking away the sting of the needle, it’s important to keep in mind it can take 30 minutes to activate (which feels like an eternity while mid-flare) and can also make the patient more anxious as they wait. The medicine is also known to shrink the vein underneath as well, which can make getting the IV started a little more challenging. You may consider putting a lidocaine cream on at home before you head to the hospital if you have some available.
  6. Be hydrated and warm. If you anticipate the need for an IV, try and drink as much water as you can ahead of time. Have a heating pad or warm pack placed on your veins. Even putting the warmed-up hospital blankets around your arm prior to the stick can help get you prepped.
  7. Breathe deeply. Try not to watch the needle going in. Focus on a focal point on the wall or go to your happy place to distract yourself from the initial prick of the needle.

The most important thing of all is to be your own best advocate. Don’t worry about hurting feelings or coming off as high maintenance. Offer up as much intel you can in a constructive and calm way as possible. Once you’re diagnosed with IBD and experience the hospitalizations, scopes, surgeries, scans, and lab work, you become a “professional” at being a patient and knowing your body. Unless you use your voice and communicate your needs, they may not be met. Rather than thinking of those caring for you as instilling pain or as the adversary, it’s in our best interest to work together as a team with our physicians and nurses so they can provide the best possible care and so we can build a long-lasting relationship based on trust, rather than fear.

For parents, try and stay as calm as possible and allow the medical professionals to work their magic in distracting your child and making them feel safe and at ease. Your stress level and energy (both positive and negative) will reflect onto your child. If you feel your child is being given the best possible care, try and go with the flow as much as possible. You’ll know when and if you need to speak up. Know that your child is watching. Be tactful, confident, kind, and direct if you believe something different needs to be done or tried. You are your child’s voice piece.

Through the years, whether it’s in the ER or getting a blood draw, the moment I say “I have Crohn’s disease” it’s like I just dropped major street cred. Medical professionals know when you have IBD you have to be tough as nails, you don’t have any other choice. So, when you say that—be confident that when you offer up advice pertaining to IVs and blood draws you have that going for you.

Clinical Trials: How the IBD Community Can Drive Breakthrough Research

Clinical trials are the backbone of medical breakthroughs and the lifeblood for the future of treating diseases like Crohn’s and ulcerative colitis. When I started on my biologic treatment in July 2008 to get my Crohn’s disease under control, there were only two treatment options on the market. Fast forward to 2020, and now there are 12 biologic treatment options for IBD. This is all thanks in part to clinical trials. This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about the importance of clinical trials. I am passionate about educating others on this topic with the hopes of raising awareness about the power of breakthrough research.

It’s promising and hopeful to know that as we speak, according to ClinicalTrial.gov, there are thousands of clinical trials geared towards IBD research underway around the world! Despite the pandemic, recruitment and patient enrollment for clinical trials are still underway. While there may be 12 biologic treatment options on the market, there are still so many patients who build up antibodies to every drug they try and have nowhere to turn. The Crohn’s and Colitis Foundation finds one-third of patients do not respond to initial IBD treatments. It’s imperative more options become available for our community not only now, but in the future.

Talk it out with your care team

By communicating with your gastroenterologist, you can learn more about the options available and how to find a clinical trial that is tailored to you and fits your needs. By participating, you can help shape the treatment landscape for the future and have a hand in pioneering innovative therapies. Some patients may shy away from clinical trials, thinking they’d be a guinea pig, while others are desperate to improve their quality of life and weigh the benefits as being greater than the risks. It all comes down to the patient population being better informed of what it’s like to be a clinical trial participant and how safety is paramount.

Understanding the safety measures to protect clinical trial participants

Prior to a clinical trial starting, it’s important to understand there are a lot of hoops to jump through. When it gets to the point where patients like you and me participate, the research process on the new treatment has already been going on for more than a decade. According to Clara Health, first the treatment is tested in lab cells and animal studies. Then, the Food and Drug Administration (FDA) gets involved and must give its stamp of approval for a clinical trial to get underway.

Clinical trial participants can have peace of mind knowing they’ll receive top notch medical attention from start to finish and be observed for any potential safety concerns. Every single potential side effect is documented and shared by the study team so that all participants are aware of any new risks, benefits, or side effects that are discovered during the trial.

When you think of participating in a clinical trial it’s empowering to know you are not only possibly helping yourself, but the entire IBD community. The future of how our disease is managed and treated depends on patients like us to step up to the plate. New treatments and therapies are dependent on us. Treatments can’t be created without us. So often the “what if” looms over our heads as IBD patients, in a negative way. With clinical trials, the “what if” signifies endless possibilities, hope, change, and breakthroughs that could ultimately shift and inspire what the future of care looks like for not only us but future generations who will be up against the beast that is Crohn’s and ulcerative colitis.

The Crohn’s and Colitis Foundation has many resources dedicated to this topic that are sure to put your mind at ease.

To learn more about clinical trials head to Clara Health’s website.

Building Body Composition and Maintaining Weight While Battling IBD

For many of us, when we’re initially diagnosed with IBD or when we flare, we experience weight fluctuations. The number on the scale may plummet during times when eating anything hurts or seems to make symptoms worse. The number on the scale may skyrocket when we’re on prednisone and not only retaining fluid, but also wanting to eat everything in sight.

Andrew Jagim, PhD, CSCS*D, CISSN was diagnosed with ulcerative colitis in 2014 after being infected with an intestinal parasite (Giardia). He managed to remain in remission for a few years until things went downhill quickly at the end of 2016. He dropped 50 pounds over the course of 3-4 months, was going to the bathroom 15-plus times a day, was running constant fevers, severely fatigued, anemic, and had little appetite. In the spring of 2017, after two weeks on TPN and several days in the hospital, he decided that a sub-total colectomy was his best option at the time. Since then, Andrew’s battle has been a rollercoaster of ups and downs, resulting in 12 colorectal surgeries.

Sports and fitness have always been a huge part of Andrew’s life—so much so, that he made a career out of it. He has a doctorate in exercise physiology, is a certified strength & conditioning specialist and a certified sports nutritionist, so he has an extensive background when it comes to understanding the important roles of exercise and nutrition for health and performance.

“Throughout my life, a large part of my identity has always been tied to my physical appearance. I’ve always been known as someone who is athletic, big, and strong with a high state of fitness. I struggled immensely during my flares and surgery recoveries when I couldn’t work out, when I looked sick or couldn’t stop losing weight. It was like I was losing a sense of who I was and who I identified with. When I looked it the mirror, it pained me to see my hard-earned muscle just “falling off” when I was too sick or weak to workout. However, I have always been determined to rebuild my body and regain what I lost.”

This week on Lights, Camera, Crohn’s—a look at the impact disease flares and surgeries can have on body composition, and how you can try and counteract the changes through diet and exercise.

A cornerstone of the disease itself is a high state of inflammation – most of which is centralized to the gut; however, this can also have systemic effects thereby resulting in widespread joint pain, fatigue and even a state of anabolic resistance within muscle tissue. Essentially, this makes it challenging to maintain or increase muscle mass during a period of high disease activity. This can be coupled with a reduction in appetite which can exacerbate body weight loss and muscle loss.

Surgeries can range from minimally invasive procedures to treat a fistula to much larger and complex operations such as removal of sections of the bowel and placement of a stoma for an ostomy. Depending on the magnitude of the surgery, patients often must modify diet and physical activity based on the recommendations of the surgeon.

These modifications will likely lead to decrements in body weight, muscle, strength, and endurance in the short-term; especially individuals who may have been highly active prior to the surgery. However, in patients who may be extremely ill at the time of surgery, the procedure may help them regain lost weight and strength as their body may finally be able to heal and recover from the inflammatory cascade brought on by IBD.

The Case Study Andrew Conducted

A year and a half after Andrew’s colectomy, he decided to schedule the second step for the J-pouch procedure. However, prior to, he decided to take advantage of this unique opportunity and conduct a case study on himself to document the changes in body composition and performance throughout the recovery process. He was curious how a surgery like that would impact someone with his fitness state as most of the literature focused on smaller or more sedentary individuals. Leading up to surgery, he had been able to resume his regular fitness routine and got his weight close to where it had been for most of his adult life.

“As seen in the figure below from my published case study, there were significant declines in body weight (-10.5%), lean body mass (-9.9%) and endurance (-40.3%) 4-weeks post-surgery. At 16 weeks postoperatively, most parameters were near their baseline levels (within 1–7%), with the exception of my peak endurance, which was still 20.4% below baseline. Thankfully, I was able to leverage my educational background and expertise in exercise physiology and nutrition to use targeted exercise and nutritional strategies to retrain my body and build my physique back up,” explained Andrew.

The balancing act of trial and error

As many IBD patients know, there are a lot of nuances, misconceptions, and unknowns regarding how diet impacts disease. For Andrew, it has been a lot trial and error to find foods that worked for him and helped him achieve his goals.

“Early in the recovery stage, just getting my appetite back and trying to eat more while not interfering with any post-operative dietary recommendations was always my goal. For me, this meant trying to eat about 2,500 – 2,750 calories and 150-170 grams of protein per day. In my opinion, these are the two most important dietary goals when it comes to regaining any weight (especially muscle mass) following surgery or during a flare. It will also help support the tissue and incision recovery following surgery”

Regarding exercise, strength training, is the most effective form of exercise to regain lean body mass following surgery. However, most colorectal surgeons (for good reasons) impose a lifting restriction of no more than ~10-15 lbs. for about 6 weeks following surgery to allow the incisions to heal and avoid the risk of hernia.

“For my larger surgeries, this was easy to abide by as I was in so much pain and was so fatigued that it was a struggle to just get dressed and ready for the day, so there was no temptation to get back in the weight room any time soon. But for the smaller surgeries, as I got closer to the 6-week mark, I was anxious to get back to my old routine. I took a very conservative approach and used a lot of alternative training techniques (i.e. blood flow restriction training, isometrics, resistance bands, etc.) to elicit an adequate training stimulus while not having to lift heavy weights and to avoid injury,” said Andrew.

Andrew’s main piece of advice about life with IBD? “Be prepared for a rollercoaster of changes to both your body composition and physical abilities throughout battles with IBD – especially during a flare or following surgery. Unfortunately this also will likely take a toll on your mental health as well, or at least it certainly did for me. However, just know that you can always get it back in time and more often than not, come back even stronger. Be patient and give your body rest when needed but otherwise keep grinding.”

Everyone has their own battles they are fighting

“I think my experience with IBD has taught me that everyone has their own battles they are fighting – even if they don’t show it. Additionally, it is also a reminder that not all disabilities are visible as a lot of people are probably unaware that I live with a permanent ostomy. I have chosen to keep a lot of my health struggles private and I think a lot of people will be surprised when they hear what I’ve endured over the past five years as I have still managed to have a successful career and not miss much work – despite all the surgeries and time spent feeling very ill.”

Andrew’s IBD journey also shifted his research focus a bit and challenged him to apply my knowledge of how to increase performance, strength and muscle mass in athletes towards a more clinical application.

“A lot of the strategies that work well with athletes can be modified and used in clinical settings as several of the benefits (i.e. increased muscle, strength, endurance, energy, etc.) may also help improve quality of life in patients will a chronic illness, those who are critically ill, or those recovering from surgery. It’s just a matter of making the appropriate modifications and fitting them to the current need,” said Andrew.

Here’s how you can connect with Andrew:

  • Facebook: Andrew Jagim
  • Twitter: @Ajagim
  • Instagram: Sports Science/Performance Nutrition Focused: @andrewjagim
  • Instagram: IBD/Ostomy Focused: @the_chronic_comeback

IBD and Adoption: Insight from a Crohn’s mom about the journey

When you have IBD, the path to motherhood can look different for many. There is added stress about whether your body can create and sustain a new life successfully. There’s worries about flare ups and medications and how to stay well-managed while keeping the health of your unborn child in mind…just to name a few. For 30-year-old, Audrey Bolton, of North Carolina, adoption had been a calling in her life since high school when she stood at the airport and watched a family friend bring home their daughter from Guatemala.

She knew from that day forward, she would adopt one day. What she didn’t know is that she would be diagnosed with Crohn’s disease 10 months after getting married and struggle to conceive. This week on Lights, Camera, Crohn’s, Audrey shares her journey of becoming an IBD mom through adoption and what she wants others to know about the process.

NH: Many women with IBD fear their bodies are incapable of carrying a child/or are told they aren’t well enough. What would you like to say to them?

AB: “I would tell them that every journey to parenthood looks different, but at the end of the day, we are all moms. I think it depends on everyone’s situation and it’s a conversation they need to have with their doctor(s) and their spouse. For me, I was sick at the time my husband Crawford and I wanted to have a baby. I was not sick enough to where I wouldn’t be able to parent, but I do not think my body at that time could have been healthy enough to carry a child without problems. With that said, I’m nearing remission so I do still hope that one day we can have a biological child. If a person wants to be a mom, I fully believe that there are many different avenues a person can take to be a mother.”

NH: What are some of the struggles/challenges about adoptions that you wish other families knew?

AB: “Adoption comes from a place of brokenness, so while it is so beautiful that our son Camden made me a mother, it is not lost on me that his birth mother made a huge sacrifice that left a piece of her heart missing. It can be beautiful and heartbreaking at the same time.”

NH: Was the fact you had IBD ever an issue with adoption agencies?

AB: “Not at all! I love this question because I wasn’t sure what to expect when we started the process back in 2017. For all adoptions, you must complete a home study which includes health questionnaires, a physical, and several meetings with a social worker. In those meetings, we talked about my Crohn’s disease and how I was working with my doctor to treat it. If a person is well enough to parent and take care of a child, there are not any issues with having IBD and being eligible for adoption.”

NH: What are your tips for navigating the adoption journey with a partner/spouse?

AB: I could write a book on this one, but the truth is, Crawford has been my rock. He had no idea when he married me that I would be facing a chronic disease that would land me in the hospital multiple times a year for days on end. He has truly stuck by his vows “in sickness and in health.” I think the best tip I have for navigating Crohn’s with a partner/spouse is to communicate. Crawford knows when I’m not feeling well, the best thing for me is to rest and he makes it happen. He also is my voice of reason and tells me if I’m doing too much or if I need to say no to some obligations so that I can properly rest. Communication is key!

NH: What was it like when you first met your son Camden?

AB: “I always envisioned the moment we laid eyes on our son to be beautiful and the best moment of my life. When we arrived at the hospital, we had not slept in 24 hours and had driven straight through the night. We thought we would be meeting our son, but we were told he was being transferred to a Children’s hospital for further testing on his heart. He was hooked up to all kinds of wires and it was one of the scariest moments of my life. We only got to see him for about an hour before the ambulance came and took him to the Children’s hospital. It was whirlwind of a day, but God saw us through it and the next day, he passed all of his tests with flying colors and I was able to bond with my baby for the first time and have my “beautiful moment.”

NH: What’s been the most magical aspect of being an adoptive parent?

AB: “Most days, I forget that Camden is adopted. He looks just like Crawford and he’s been with us from his second day of life, so he belongs with us. Every now and then, I will have a moment and remember that he has another mom somewhere out in the world. I always say that she is my hero because she chose life for her baby boy and I would say that has been the most magical part for me. Knowing that I owe everything to a woman that I have never met. I pray that she has peace in knowing how loved he is on a daily basis.”

NH: If someone is on the fence about adoption–what would you tell them?

AB: “Pray, pray, and pray some more. If it is God’s will, he will give you that peace. I receive messages every day asking how the process works and people are scared about the cost. If it’s meant to be, don’t let the cost stop you! There are so many ways that it CAN be done.”

NH: You recently announced you’ll be adopting baby number two in 2021, you must be so excited! Did that process differ at all from Camden’s?

AB: “We are extremely excited. So far, it is the exact same because we are going through the same agency. I’m sure there will be some bumps along the way, but we are so excited to bring home baby #2.”

NH: How has already being an adoptive parent helped you through the experience this time around?

AB: “I know what to expect this time, so I am better prepared for the timeline and the traveling that is involved. With that said, our adoption with Camden was extremely quick. I was at work one minute, waiting for the phone call to meet a birth mom and the next I’m told that there is a baby waiting for us to come get him. There was no time to think or for anything to really go wrong. That makes me a little more nervous this time, as I know that it doesn’t normally happen that fast. I’m just praying that everything happens the way it should in the Lord’s timing.”

NH: How has faith played a role in how you navigate your IBD and motherhood?

AB: “I would be lying if I said I never questioned why God would allow a 25-year-old newlywed to be diagnosed with a chronic disease with no cure. It has been a tough journey, but I think God has shown me a glimpse of how strong I can be in tough situations and it ultimately prepared me to be a mother. Not long after we brought Camden home, I had a full circle moment one night while rocking him to sleep. I realized that Camden would not be in my life if it had not been for all the trials I faced with my health and months and years of seeing only one line on a pregnancy stick. While the journey was really difficult in the moment, it is the privilege of a lifetime to know God handpicked me to be Camden’s mother and that He was with me through all of the really low times.”

Connect with Audrey on Instagram: @audreyabolton

Click here to check out her blog.

The future of biologics and the changes coming down the pipe

This article was sponsored by SmartTab. All opinions and thoughts are my own.

The future of IBD care and treatment is constantly evolving and there’s a lot of hope on the horizon for the patient community. Think back to the moment your physician discussed starting a biologic for the first time and how daunting it was to imagine giving yourself an injection or getting an infusion for the rest of your life. It’s a heavy burden to bear for many reasons.

This is where SmartTab comes in. SmartTab is a digital medicine company focused on drug delivery and improving patient care, comfort, and compliance. Their main application, the InjectTab, would give people the option of using the current syringe or autoinjector used to give biologic medication or instead have a person swallow a capsule that would deliver the active ingredients to either the stomach or the small intestine. This initiative is making waves in a big way in both the patient, pharmaceutical, and technology industries. SmartTab was recently named a Tech Crunch Disrupt 2020 Top Pick.

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As someone who has been giving myself injections for over 12 years, this is music to my ears. My next question was what this means for those on infusions.

Robert Niichel, Founder and CEO of SmartTab, says, “We will start with the biologics deployed through a syringe and needle and then move to biologic infusions. Imagine if you take that infusion dose and instead take a smaller dose of the same medication as an ingestible capsule once a day. You now have reduced the amount of drug to a daily amount, side effects would go down because you’re not having to process this entire bolus and keep in mind that some of these drugs, no matter what it is, when you have an infusion, whether it’s to treat Crohn’s or receive chemotherapy, your body has to process that out through the liver or the kidneys. It’s stressful on the metabolism and the organs. Our goal, is that one day, regardless of whether it’s an infusion or an injectable, that you’ll take those drugs via an InjectTab capsule.”

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Keeping patients in mind every step of the way

SmartTab is determined to limit the anxiety associated with managing diseases like Crohn’s and ulcerative colitis. The diagnosis and living with a chronic illness can be challenging to cope with, no matter how many years you’ve had it. It’s exciting to think what the future will hold for the IBD family.

“If physicians could go to people and say, we are going to start you on a biologic, you will take one capsule, every week, that’s a lot less of a burden than finding out you need to give yourself injections or spend hours with an IV getting an infusion. Your compliance goes up, patient outcomes, go up. At the end of the day, we’re trying to figure things out so people can lead better and more comfortable lives,” said Robert.

Getting InjectTab FDA-approved

SmartTab has the technology of the capsule finalized and they are starting a pre-clinical animal study next month. The InjectTab will inject an active ingredient into the side of the stomach.

“We will then do blood draws to collect the different levels of the active ingredients. Once that is complete, we will move on to human clinical trials and then onto FDA clearance, meaning approval of a device. Once we have that clearance, then we can combine our InjectTab with other active ingredients. Then we would seek out strategic partners to combine a prescription drug with our InjectTab. We would then do human studies.”

A lot of the heavy lifting for the actual technology has been completed, now it’s all about the clinical studies. Robert says the good news is that they’re not working on getting a new drug approved, since existing biologics will be used with the InjectTab technology.

“We believe that five years from now, if you take a biologic, you will no longer need to be doing a self-injection, there will be more options than syringes or needles to get your medication. You could just take a capsule. Whether it’s once a day or once a week, it will be as easy as taking your vitamins and moving on with your day.”

The cost benefits of a capsule vs. an injector

Right now, autoinjectors are typically hundreds of dollars. The InjectTab will range from $10-$50 a capsule, so right away there’s a significant cost reduction per use.

Robert says SmartTab is really counting on the insurance companies to look at this and say they’ll reimburse for the technology to deploy the drug because now patients are compliant and have reduced office visits and disease progression that can lead to hospital stays and surgeries.

SmartTab is currently in talks with several pharmaceutical companies, because that is the path to commercialization and making InjectTab a game changing reality for patients. Initially, the capsule technology will be available in the United States and then Europe. InjectTab will be geared towards the adult population first.

Life with IBD can be a tough pill to swallow, but the future possibilities surrounding InjectTab may prove otherwise. As someone who has given myself injections for more than a dozen years, this type of technology blows my mind in the best way. When my GI walked into my hospital room in July 2008 while I was battling an abscess the size of a tennis ball in my small intestine and he told me I had two options—Humira or Remicade, I was devastated. I didn’t want to give myself injections and I didn’t want to sit with an IV in my arm and feel sickly. It was a lot to process then and is still not always easy now. Hats off to companies like SmartTab innovating and changing the landscape for the future of IBD and beyond. As a patient, it means the world to me to see the tireless work going on behind the scenes that will change the future for those living with Crohn’s disease, ulcerative colitis, and other conditions.

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Interested in learning more about IBD innovations? Check out the virtual IBD Innovate: Product Development for Crohn’s and Colitis conference November 17-18. Register here.

Click here to learn more about Tech Crunch’s Top Picks for 2020.

Check out my podcast interview about living life powerfully with Crohn’s disease and the future of IBD treatment.