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.

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

Digital Dating Tips for IBD’ers: How I Met My Husband and What I Learned

Before the dating world was about swiping right or left, I met my husband online. It’s something I was a little embarrassed about sharing for a long time, especially while being a morning news anchor. The year was 2013, while online dating was becoming more common, it was still a little taboo. At the time, my Crohn’s disease was a secret from the public. Much like the backstory of my health, I wanted to keep my love story under wraps much of the same way.

So, when I signed up for eHarmony on a whim after attending my co-anchor’s wedding, rather than putting my location as Springfield, IL (where I lived and did the news), I told a little white lie on my profile and said I lived in St. Louis. I know, I know…a little shady! But hear me out. I chose to do this to disguise my identity and vowed to myself that I’d be upfront and honest with whoever I spoke with about where I lived from the initial conversation. I also told myself I’d hold off on sharing that I had Crohn’s until I met someone worth my time and deserving of my energy. It wasn’t something I would share over email or on the phone prior to meeting.

Finding Love in Three Days

I was on eHarmony three days before I met Bobby. Yes, three days. I feel incredibly fortunate that after years of dating and not finding the right person that all it took was a couple emails and some phone calls. As soon as Bobby and I started talking I gave him an “out” and said I understood if he wasn’t interested in long distance (90 miles apart), but he said he didn’t care and wanted to meet me. He drove to Springfield on a Wednesday after his workday and took me to dinner. Little did we know that would be our last first date.

From there he visited me the following week and we went out for Mexican. Two dates in, I didn’t feel ready to disclose I had IBD. But as the days turned to weeks and I started feeling closer to him, I knew it was something I had to get off my chest.

Disclosing to My Boyfriend (now husband) That I Have Crohn’s

On our third date (almost a month of talking/hanging out) we went to a boathouse and had lunch outside on a gorgeous St. Louis August afternoon. I was nervous, but at this point in my patient journey (8 years in) I felt confident about my IBD elevator speech. After the appetizer arrived, I let him know I had Crohn’s disease. I explained what it was, how it had affected me, the medication I was on, but more so than what I was saying, I was paying more attention to his verbal and non-verbal cues. I had been with guys in the past who ghosted me in times of major health emergencies. I had been made to feel like my chronic illness was a joke or an excuse. And I wasn’t going to put up with any of that bs again or be made to feel like a burden.

Photo taken after I told Bobby I had Crohn’s.

In that moment, Bobby made me feel comfortable and he didn’t seem phased by what I had shared. Not in a dismissive way, but in a way that made me feel like just with the distance, my disease wasn’t reason enough in his eyes to explore other options.

Advice for Navigating Online Dating with IBD

  1. Don’t make your IBD the headline on your profile. While your IBD is a big part of who you are, it’s not your whole identity. It’s not necessary to include you have a chronic illness on your dating profile unless you feel so inclined. Personally, I wouldn’t give someone the privilege of knowing that side of you unless you feel they are worthy. At the same time, if you have an ostomy and you prefer to share photos of yourself like that on your profile—more power to you!
  2. The cliff notes version of your health story will do. When you decide to share that you have IBD with your partner, don’t be doomsday. Don’t go on…and on…and on…about how debilitating and horrible it’s been and how miserable you are. Give a high-level elevator speech that “dumbs it down” a bit. You don’t need to downplay how hard it is but allow your partner to take some initiative and educate themselves and ask questions when they have them. How you share and present your illness to someone who may have never heard of IBD will have a lasting impact.
  3. Don’t settle. Trust your gut. If a partner is making you feel uneasy or unhappy, don’t make excuses for them. Read between the lines on a person’s dating profile—see if you think their personality traits and interests will compliment you and your needs. Not everyone is nurturing and empathetic. If you see red flags that your partner lacks in those areas, think about whether it’s going to be a healthy relationship for you to be a part of.
  4. No need to be shy! When we’re battling our health, often the thought of being vulnerable and open with a stranger can seem overwhelming. IBD is complicated and the stress of a new love interest can make us feel a bit out of control. But it can also be an exciting, sweet distraction from health challenges. Love gives a sense of normalcy. Just because you have IBD doesn’t make you unworthy of deserving love. Think about the type of partner you want holding your hand as you battle a flare from a hospital bed.
  5. Love doesn’t need to stop because of the pandemic. I’m an old married woman now (ha), going on eight years since I was on eHarmony and matched with Bobby, but I wouldn’t have it any other way. There are so many sites and apps these days, I don’t even know all it entails. Gone are the days of only eHarmony, Match, and Plenty of Fish. 😊 If you’re feeling lonely and isolated like so many of us during this pandemic, and you’re single with IBD, don’t feel like you have to press pause on finding a connection or your person.

What IBD’ers Have to Say About Finding Their Match

Erica: “My husband and I met on Coffee Meets Bagel in 2017. We texted three weeks before meeting. I told him I had Crohn’s after texting a couple of weeks before we met. I had to reschedule our first date because of a health issue and didn’t want him to think it was because of him. I also felt like he should know what he was getting into.”

Michelle: “I met my husband in 2015 when Hinge came out! I was having a flare and threw up on our first date! I met him when I was going through getting diagnosed and he was so supportive through it all.”

Christine: “Disclose early on! I disclosed at about two months of dating with my fiancé and I felt like things could go further. I think it’s something the other person should be aware of. Not everyone is ready for that you need to know that you will be supported through that journey! We connected through Facebook! Sounds crazy, but here we are!”

Sarah: “Dating/meeting people is so hard nowadays and then throw in a chronic illness and it doesn’t make things easier! Personally, I prefer to be up front about my UC because if the person is going to like me or if this is going to work out, they are going to have to be on board with my UC, too! Whether I like it or not, it’s a part of who I am.”

Ryann: “I met my husband in 2017 and I told him on our second date. Our friend set us up and she had already shared that I had IBD with him. Previously, I had told other guys on our first or second date. One guy came back and apologized for being so weak and not contacting me again after that date. I didn’t reply, more because I didn’t blame him, but also because I found him to be incredibly dull! This was back in the beginning days of Tinder!”

Natasha: “I like to share early (in or around the first date) about my health so I don’t develop an attachment if they aren’t comfortable with chronic illness. Usually, it leads to a good conversation either way. Recently, I shared about my Crohn’s over text message and the guy was very inquisitive and only wanted to learn more, about me and about Crohn’s! I also have a pic of me with my ostomy in my dating app profile. It’s subtle, but if you know it’s there or know what an ostomy is, you’ll know immediately what I have.”

Payge: “My Tinder profile pictures had me with my bag and my current boyfriend googled what it was before he messaged me. He told me when he knew what it was, he instantly thought ‘I want to take care of this girl’…that’s how it went for me!”

Allison: “You don’t have to share any more than you’re comfortable with—if you want to disclose in your profile, great! If you wait until date number five, that’s okay, too! There are no hard fast rules for when or how you should share your story with someone. It’s YOUR story and every situation is different. Anyone who responds negatively or acts as if your illness will be a burden is NOT worth your time. The right person won’t care. Remember—nobody is perfect. Your vulnerability might allow the other person to share something they’re also trying to figure out the right time for. I’ve been online dating for five years now, met my current boyfriend on Hinge in September.”

Why Every Person with Chronic Illness Needs to Read “What Doesn’t Kill You”

Prior to receiving a chronic illness diagnosis, it’s incredibly challenging and nearly impossible to fathom ‘forever sickness’. In Tessa Miller’s book, “What Doesn’t Kill You: A Life with Chronic Illness–Lessons from a Body in Revolt”, she masterfully articulates the highs and lows of life with Inflammatory Bowel Disease (IBD). From navigating the diagnosis, flare ups, the healthcare system, relationships, and the mental health component, she’s created an invaluable resource that I wish every single person with chronic illness could be handed the moment they find out their life story has taken an unforeseen turn.

As someone who was diagnosed with Crohn’s in 2005, two months after college graduation, I wish my former self had these powerful words at my fingertips. The overwhelming nature of IBD can be nearly suffocating at times. As I read this page-turner of a book, I felt seen and understood. I found myself nodding my head, because I could relate to so much of her story and so much of her sage advice. I felt like a college student highlighting what felt like the whole page, because it was ALL so important.

Tessa and I are both journalists. We both have Crohn’s. We both randomly grew up in Illinois. I connected with her over social media after reading her New York Times article, “Five Things I Wish I had Known Before My Chronic Illness.” The article had an impact on me, so when I heard she landed a deal with a publisher, I anxiously awaited for this book to drop.

In the beginning of “What Doesn’t Kill You,” Tessa writes, “I became a professional patient, and a good one. I learned that bodies can be inexplicably resilient and curiously fragile. I would never get better, and that would change everything: the way I think about my body, my health, my relationships, my work, and my life. When things get rough, people like to say, “this too shall pass.” But what happens when “this” never goes away?”

Finding the Right Care Team

When you live with a disease like Crohn’s, it’s imperative you trust your gastroenterologist and care team and are confident in how they help you manage your illness. I always tell fellow patients to take a moment and think about who they will feel comfortable with at their bedside in a hospital room when they’re flaring or facing surgery. If it’s not your current doctor, it’s time to look elsewhere. Tessa breaks down the “qualifications” for getting a care team in place. From finding a doctor who explains why they’re doing what they’re doing and why to a doctor who looks at you as a human, not an opportunity.

“Good doctors see their loved ones in their patients; they make choices for their patients that they would make for their own family. Asking a doctor, “Why did you choose this line of medicine?” will reveal a lot about what drives them and how they view their patients.”

The Grieving Process of Chronic Illness

Receiving a chronic illness diagnosis forces us each to go through the grieving process. For many of us, we were naïve and felt invincible before our health wasn’t a given. We’re so used to feeling as though we’re in control of our destiny, that when we lose that control, we spiral, understandably. Tessa interviewed Paul Chafetz, PhD, a clinical psychologist based in Dallas. Dr. Chafetz is quoted in the book saying, “We go through life with an illusion of safety, guaranteed health, even immortality. Acquiring a chronic illness pierces that illusion, and this is a loss. Grieving this loss is an integral part of adjusting to the illness.”

Take a moment to stop and think how you coped those first few weeks and months after finding out you had a chronic illness. While acceptance takes time and comes in different stages, Tessa explains how flexibility and willingness to adapt to your new “normal” is even more important.

“Rather than searching for big, sweeping acceptance, then feeling like a failure when it doesn’t come, chronically ill folks can enact small, empowering steps, such as taking required medications, learning everything we can about how our diseases work, seeing doctors regularly and being prepared for appointments with a list of questions, advocating for our needs and wants, figuring out which foods makes us feel good, and going to therapy and/or connecting with a support group.”

In my own patient advocacy and experience living with Crohn’s I can attest to the fact that we all spend a lot of time wishing for our past and worry about what our futures will hold, rather than focusing on the right now. The majority of IBD patients are diagnosed prior to age 35. This leads most of us to experience the big milestones of adulthood (career, finding love, living on our own, family planning, etc.) with a disease in tow and wondering how that disease is going to complicate life or hold us back from accomplishing all we aspire to.

Bringing on the Biologics

Tessa calls herself an “infliximab veteran,” she spends a great deal of time talking with new patients and caretakers, mostly moms of young IBDers, about their fears. Most questions I receive through my blog and social media also revolve around biologics and the worries people have about side effects and whether the drug will fail them or be a success. I feel confident deeming myself an “adalimumab veteran”, as I’ve been giving myself Humira injections since 2008.

As patients we are faced with difficult decisions all the time and must look at the risk versus the benefit. Having health literacy and understanding your actual risk from a biologic is something that should be communicated with you from your physician. Tessa’s doctor explained to her that six in 10,000 people who take anti-TNF agents (Humira and Remicade) get lymphoma. But as patients, all we see on the internet and in the side effect notes are “lymphoma.” Force yourself to dig digger and remind yourself of your alternative—to not feel better.

The Truth Serum of Chronic Illness

One of the superpowers of chronic illness is that we get to see which family members and friends come to the forefront and which fade to the background. Not everyone is cut out to be a caregiver, but you’ll quickly see who has empathy and who genuinely cares. In my own personal experience, it’s helped me get out of relationships with guys who were no where to be seen while I lied in a hospital bed and allowed me to distance myself from friends who couldn’t find the time in their day to check in when they knew I was flaring.

Tessa says that chronic illness forced her to peel back the layers and the isolation wall she put up, too. Chronic illness has shown her that people do more than just hurt each other— “they nurture, they listen, they enrich one another’s lives.” Her IBD also empowered her to be brave enough to put an end to unhealthy relationships that weren’t benefiting her well-being, both with friends and love interests. Her Crohn’s has showed her that not every friendship is meant to support you in the same way.

This is a great piece of advice. As you live with a chronic illness, you’ll come to know which friends you can share your deep dark secrets and worries with, and which you give the high-level cliff notes version of your experience to. Your chronic illness will help you set those boundaries in a graceful way.

Her love story with her husband embodies what those of us with chronic illness deserve, a partner who sees us as more than our disease, but understands the severity and complexity at the same time.

Juggling a Career and Crohn’s

One of the biggest challenges of life with IBD is knowing how and when to disclose your health situation with your employer. You may wonder how the news will be received, if it will jeopardize your chance for promotion, if your coworkers will resent you…the list goes on and on. As someone who worked in the TV industry as a producer, news anchor and reporter for nearly a decade, and as a PR professional and corporate communications specialist, I’ve been lucky that all my bosses have been incredibly understanding of my struggles with Crohn’s, but never used them against me in any way. I’ve always waited until after I have received the job offer and then told my boss in a meeting the first week of work. This alleviated some of the stress on my shoulders and ensured my coworkers wouldn’t be blindsided when I had a flare that landed me in the hospital. By communicating openly, it also to set an expectation that I may not always feel up to par and that I may need more bathroom breaks or to work from home or come in late after doctor appointments.

Tessa so eloquently writes, “You want your boss to understand that while your disease affects your life, you’re still capable of doing your job. Deliver the necessary facts about your illness without bombarding your boss with information—keep it direct and simple. Be clear about how you manage the illness and that although you do your best to keep it under control, it can flare up. Tell your boss what you’ll do if and when that happens.”

Realizing the Power of Pain

One of my favorite analogies that Tessa shares in the book is that each of us carries an invisible bucket, some are heavier than others, and the weight of that said bucket is constantly in fluctuation. She says that as she started connecting with those in our community, she came to realize that her personal pain was no better or worse than anyone else’s. So often we weigh our struggles against those of others, and that’s not helpful to beneficial for anyone.

“Think about it: If a friend came to you in pain, would you tell them that other people have it worse and that their pain isn’t valid? If you did, you’d be a lousy friend—so why do you speak to yourself in such a way?”

Rather than thinking that ‘someone always has it worse’ ask for support when you need it. Don’t downplay your struggles out of guilt thinking you aren’t deserving of help. Give support when you can but don’t forget about the person you see looking back in the mirror, be loving, kind, and patient to them, too.

Leaving the Rest to Imagination

Some of my other favorite excerpts from the book are Tessa’s “Seven Secrets”. The secrets (both big and small) she keeps from loved ones and friends about her experience with IBD. The secrets are relatable. We don’t want to come off as a burden. We don’t want to scare those who mean something to us. We want to hold on tightly to the notion that our illness doesn’t define us, so we often don’t disclose the true reality of what encompasses our illness.

Another section I know you’ll love is “Thirty-Eight Experiences of Joy” where Tessa shares quotes from 38 different people with chronic illness and how they’ve discovered joy despite their illness. I’m honored to be featured in that section of the book.

She understands the power of community and how finding your tribe within your disease space and outside of it is an important aspect of disease management and life fulfillment.

“Connecting with other chronically ill people teaches you how to carry each other’s weight—when to lift when you have strength, and when to share the burden when you have no energy left,” writes Tessa. “I’ve found the chronic illness and disability community to be one of endless empathy and generosity.”

The Gratitude That Comes with Chronic Illness

I’ll leave you with one of my favorite quotes from the book and a perspective that I wholeheartedly share:

“At the beginning of my illness, I was so inwardly focused on what I’d lost that I couldn’t see the gifts illness had given me. Mom, a determined optimist, taught me to always look for the silver lining. Mine is this: Yeah, my body won’t allow for any bullshit—no jobs I hate, no relationships I’m not fulfilled by, no hours crying over wrinkles. Illness made me braver, kinder, and more empathetic, and that gives me way more radical power than the faux control I was clutching to for so long. In the most unexpected way, illness freed me. It compelled me to begin therapy, which kick-started the process of tending my wounds old and new. It made me focus on the present more than the anxiety of the future. And it made me be in my body in a way I never experienced before. Suddenly, I had to mindfully care for my body and brain as best I could and understand that beyond that, it’s out of my hands.”

Connect with Tessa:

Twitter: @TessaJeanMiller

Instagram: @tessajeanmiller

Her website

Purchase “What Doesn’t Kill You: A Life with Chronic Illness–Lessons from a Body in Revolt”

Amazon

Barnes & Noble

IndieBound

Stay tuned to my Instagram (@natalieannhayden) for a special book giveaway kicking off today (February 8)! Five lucky followers in the United States will receive a FREE hardcover copy of Tessa’s book.

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

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

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

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

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

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

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

Parsa with his parents.

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

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

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

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

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

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

The Decision to Open Up

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

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

The Power of Connecting with the IBD Community

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.