This post is sponsored by Smart Sharps Bin. All opinions expressed are my own and do not necessarily reflect the position of HealthBeacon plc or Hamilton Beach Brands, Inc.
I started doing my self-injection more than 14 years ago, long before I became an IBD mom. I went from being a single 20-something alone in my apartment mustering up the strength… to having a family around me while I receive my medication. The experience has changed greatly and so has my perspective.
There are many reasons why I have chosen not to hide my injections from my three children. Crohn’s disease impacts more than just the person who lives with it, it’s a family disease. Even though my children are ages five, three, and 16 months, there’s a deep level of understanding and empathy that starts from a very young age. My disease is part of me. I always try to be transparent about my health and well-being. I have never said “I have a disease” since my children wouldn’t understand that, but I try to explain that sometimes my “tummy” hurts and that “Mommy’s shot keeps me healthy, safe, and strong.”
My process for self-injecting every other Monday
Once dinner is over, I pull my injection out of the fridge and let it warm up on the counter, out of the reach of my kids. I’ve always preferred to do my shot at night so I can rest afterwards and have a sweet treat like ice cream as a reward after. After about 30 minutes to an hour, I head over to the couch, and my children hover around me. They watch as I wipe the alcohol swab counterclockwise and oftentimes help me hold the ice pack on my thigh for five minutes. Then, once it’s time to pull the top and bottom off the injection and get down to business, I let them know they need to give me some space and not to move or make any jerking motions. I pause. Smile sweetly at them and start my countdown, slowly and calmly…one one thousand…two one thousand…all the way to 10. They smile back at me and bounce around when I have finished self-injecting. They immediately want to see if I’m bleeding and want to make sure I’m not in pain and don’t need a band aid. I bounce up off the couch and act like it’s just another part of our bedtime routine.
Since we’ve been doing this “process” for as long as they can remember, it’s part of our family, and part of what it’s like for me as an IBD mom. My kids are my greatest cheerleaders and my reason “why” for everything I do in life.
The sweetest distraction
I find it empowering to look into their innocent eyes and joyful faces while I self-inject, it’s the best distraction. I used to stare at a focal point on the wall, a photo of someone who inspires me, or a show on the television, but looking at my kids—my greatest motivation to push through the difficult moments—is the best medicine, literally and figuratively. I make a point to smile at them and never show signs of weakness, so they see that I’m ok and doing something positive for myself. This has become a lot easier since the formula for Humira changed and is no longer painful. I used to really struggle to smile when the medication burned the first year and a half of my oldest son’s life.
When my injection used to be painful, my son would see through my smiles. He would often hold a toy and pretend to give himself his own injection. After I was done doing my shot, he would come up and kiss my thigh and say he loved me. At this point he wasn’t even two years old—kids of IBD parents just “get it,” their empathy and understanding of health is incredibly unique and special.
How that strength carries over into my children’s’ lives
Since my kids see me self-injecting every other Monday, they’ve become quite desensitized when it’s time for their own vaccinations at the pediatrician. When my older two children get their flu shots, they take them like champs. The nurses always laugh that they’re braver than some teenagers. When my kids smile and tell me they’re strong like me when I do my shot it’s bittersweet. While I wish they didn’t have to see me self-inject, it’s building their character and understanding of health in a beautiful way.
When the Pregnancy Inflammatory Bowel Disease and Neonatal Outcomes (PIANO) study first launched in 2007 the main goal was to understand the safety of anti-TNF biologics like Humira and Remicade, and thiopurines for women throughout pregnancy and postpartum. As an IBD mom of three, I was able to participate with my youngest who is nearly 16 months old. The experience was something I am extremely grateful for. This incredible research for our community that is going on daily, helps guide decision making for treatment, while easing our fears as we embark on motherhood while managing IBD.
PIANO 2.0 is now underway and this week on Lights, Camera, Crohn’s I share everything you need to know about the updates to the ongoing research project, how you can participate, what the findings have shown thus far, and the goals for the future. Esteemed gastroenterologist, Dr. Uma Mahadevan, continues to lead the charge and help pave the way by sharing discoveries and findings.
“With new funding from the Helmsley Charitable Trust, we are really able to transform PIANO and try to reach a broader group of patients and answer more challenging questions. These questions include the safety of small molecules (tofacitinib, upadacitinib, ozanimod) and the newer biologics (ustekinumab, vedolizumab, risankizumab) as well as expand into studying the placenta and the impact of IBD, the response to COVID vaccine in pregnant IBD patients, and following children out to 18 years of age to look at long term safety and outcomes. The more you know, the more questions that come up.”
What’s new with PIANO
All women with IBD who are pregnant in the United States are invited to enroll. Specific interest in enrolling women on newer biologics (Stelara, Skyrizi, Entyvio, biosimilars) and small molecules (Xeljanz, Rinvoq, Zeposia) even if it was within 3 months of your last menstrual period but not during pregnancy. PIANO 2.0 is also expanding to look at the safety of aspirin in pregnancy (to reduce the pre-eclampsia rate) and well as how IBD women heal after a c-section and vaginal delivery.
There are new and improved patient and site interaction updates as well. There’s now a patient portal that enables women to enter their data directly, a Twitter page (@PIANOIBD) for research findings and updates, and a website with outcome data right at your fingertips.
The medical sites participating have also expanded to include USC, University of Miami, and the University of Maryland. Dr. Mahadevan says they realized most patients in PIANO were Caucasian and of higher socioeconomic status.
“We know pregnancy outcomes differ by race and socioeconomic status and we need to understand if that also applied to IBD pregnancies – does it make those differences more extreme or is there no impact? By expanding to sites with a far more diverse population, we will be able to better answer those questions.”
As far as the Patient Portal, rather than filling out paperwork and participating in phone interviews, now women simply answer questionnaires on the portal when they enter the study, every trimester, after delivery, at months 4, 9, and 12 of baby’s life and then once a year thereafter. Thanks to the Patient Portal, women can enroll remotely across the United States and don’t have to be at an IBD Center to participate.
Pushing the research further
The overarching goal with PIANO 2.0 is to gather data points from newer biologics and biosimilars and look at the safety of small molecules. So far, 2,012 women with IBD have participated in PIANO. The hope is to have at least 150 newly pregnant women participate each year.
So grateful I was able to participate in the PIANO study during this pregnancy, with my youngest child, who is nearly 16 months.
“With biologics we generally feel they are all low risk as they won’t cross the placenta in the first trimester when the baby’s organs are forming. Small molecules, however, are more concerning as they will cross during that key period of organogenesis. However, for some women that is the only therapy that works, and they must make difficult decisions,” explained Dr. Mahadevan.
Once the baby is born, the research will look at if the child develops any infection issues, malignancies, neurological issues, and immune diseases like IBD. There are some questions about basic diet as well. Having long-term data and a fuller picture of the future for IBD moms is priceless. By participating we’re truly paving the way for IBD moms now and in the future.
Dr. Rishika Chugh recently shared a presentation at the American College of Gastroenterology conference that Dr. Mahadevan co-authored that looked at data on 47 women on Stelara (ustekinumab) and 66 on Entyvio (vedolizumab). Those women were compared to moms not on biologics/thiopurines and those on anti-TNF therapies.
“There was no increase in harm from being on Stelara or Entyvio compared to those groups. Interestingly, those on Stelara had lower rates of preterm birth and C section. Numerically, there were also less infections on Stelara though that was not statistically significant.”
Participate in a Townhall Discussion with Dr. Mahadevan: Starting a Family with IBD: What Men and Women with IBD Should Know about Conception and Pregnancy
Save the date for a discussion taking place Thursday, December 15 at 6:30 pm Pacific Time. Click here to register for the free event.
I’m excited to be serving as one of the IBD patient advisors on the project, alongside fellow IBD moms Jessica Caron, Brooke Abbott and Amber Tresca (from IBD moms). We’re looking forward to providing the patient perspective and helping to guide the conversation. Jess and I were on biologics in pregnancy and have previously participated in PIANO. I had the opportunity to participate in IBD research studies with all three of my kids and it’s extremely empowering to know you are helping to change the future of care for women in our community and providing women with the added support we need while navigating pregnancy and motherhood with a chronic illness.
This article is sponsored by Health Beacon. All thoughts and opinions shared are my own.
When I think back about the scariest moments I’ve experienced since my Crohn’s disease diagnosis more than 17 years ago, doing self-injections and the loading dose process tops the list. To go from being someone who didn’t rely on a biologic medication to function and treat my chronic illness, to mustering up the strength to inflict pain on myself, it took getting used to, to say the least.
I’ll never forget what it was like when I was first told I would need to choose between a self-injection and an infusion while lying in a hospital bed with a hardcore flare. It felt like trying to pick the lesser of two evils at the time. I chose self-injection for privacy reasons because at the time I was a television news anchor and hadn’t shared that I had inflammatory bowel disease (IBD) publicly. I also have terrible veins and the thought of having to get IVs and be hooked up for hours to a medication seemed less convenient and like more of a reminder that I was unwell. During that hospital visit it took 8 tries to start my IV, so the trauma of that helped guide my choice to do injections instead.
Going the self-injection route
When I started my biologic in 2008, there were only two medications on the market to manage and treat Crohn’s disease – Humira and Remicade. The injection (I was prescribed) at the time had a reputation for being painful and the loading dose involved four injections, back-to-back in one sitting. When my mom and I walked into my gastroenterologist’s office so the nurse could instruct me on how to give myself shots, I was shaking like a leaf. In the moment I wasn’t sure how I was going to muster up the strength not knowing how it would feel. My palms felt sweaty holding the foreign injector pen in my hand. I wasn’t sure how badly it was going to hurt. I was fearful of the side effects and what the heavy-duty medication was going to make me feel like. I wanted the nurse to do the first injection for me, and she wouldn’t. In the moment that made me upset, but now I am so grateful she put the onus and trust on me. I’ve never had anyone do my injections but myself.
I pressed the button and instantly felt the liquid fire pain shoot into my leg. I couldn’t believe I was expected to do that three more times. But I did. When the appointment was over, my mom and I hugged in the hallway. I felt like I had been through battle. It was terrible. Knowing that I had to do another two injections in two weeks loomed over me. Unfortunately, my initial loading dose made me very sick. As my body got acclimated to the medication, I felt weak and could barely walk up 13 stairs to my apartment. I had to miss work and social functions as my body got used to medicine.
Going through another round of loading doses
Fast forward to 2015. I had bowel resection surgery that involved the removal of 18 inches of my small intestine, appendix, and Meckel’s diverticulum. My care team had me go off my medication for three months—prior to surgery and after. Because of that, I had to do another loading dose and re-start the process. Even though I was already more than 8 years into doing the same injection, when my GI told me I would need to do another loading dose, my mind immediately raced back to 2008 and what I went through. I was so emotional I had to call into work sick that day. Luckily, this time around was a lot less scary, and I had more confidence in the process and knew exactly what to expect. I didn’t have any side effects after this loading dose, and I was back on track to my normal injection routine.
The shift to “pain-free” injections
The first couple years I did my injection, I would count down the days until the next one was due with dread and worry. I spent more than a decade on the painful version of the medication. In 2018, the formula for the medication was changed for patients in the United States, taking out the sting and making the gauge of the needle smaller. The loading dose now “only” involves two injections versus the four.
The “pain-free” version of the medication has completely changed my patient experience for the better. I no longer dread my shot. The process feels simple and nearly effortless. Even though I’ve been lucky to be afforded the opportunity and access to this version of the medication, I can still remember how it used to feel. The anxiety and emotions the injection would cause, and what I dealt with for 10 years of my life every other Monday.
Self-injection through pregnancy and motherhood
I am an IBD mom with three young children. Ages 5, 3, and 15 months. When I was first pregnant in 2016, it took a lot of guts and felt like an emotional rollercoaster injecting a biologic knowing there was a life growing inside of me. As the weeks turned to months and my belly got bigger and bigger it became more emotional feeling kicks and movement in my stomach while I was pressing the button to give myself the shot. Until my son was 1.5 years old, he witnessed how upset the injection would make me at times and would hug me and watch with empathetic eyes from a very young age.
When I tried the pain-free injection in 2018, I shot a video the first time I experienced it. This time around, I was pregnant with my second child. You can watch the emotional video here. As I express in the video, it was lifechanging to know that throughout future pregnancies and through motherhood, my children wouldn’t ever see their mom crying or scared while doing injections anymore. Now, when I do my shots, I have a big smile on my face and my children see their mom through a much different lens.
Keeping your eye on the prize
Whether you are gearing up for your loading dose or a veteran self-injector, it’s an experience that can be hard to put into words unless it’s your reality. It’s normal to grieve and be upset about your situation. Try to breathe. Go to your happy place. Get a focal point to focus on and know that you are doing all you can to help keep your disease under control and live the fullest life possible. Short term pain, long term gain in every sense of the word. Being scared no matter where you are in your patient journey is understandable, but like all pain and fearful experiences, they too shall pass.
Click here to learn more tips about self-injecting.
When it comes to the biologic, Humira (adalimumab), I am somewhat of an OG. I’ve taken Humira to manage and treat my Crohn’s disease since July 2008. We go wayyy back. Since my first loading dose 14 years ago, I’ve had hospitalizations, had bowel resection surgery, gotten engaged and married, traveled, worked full time, had three children, breastfed, been a stay-at-home mom…the list goes on. I’ll never forget how overwhelming it felt when I was lying in a hospital bed with an abscess the size of a tennis ball in my small intestine and when my GI at the time told me “It was time to break out the big guns.” The big guns being biologics.
My mom and I were upset. We were frantic. We were Googling. We were fearful of what this would mean for my childbearing years. I couldn’t fathom the thought of giving myself injections or getting infusions. My world came to a standstill. In that moment, I would have given anything to have a resource like this. An article that outlines patient experiences across the board. The good, the bad, the ugly. I write these articles, so you feel empowered and educated when you take the plunge or when you are forced to switch medications because another biologic fails you. I write these articles, so you feel confident in making informed choices and realize that the “big guns” are oftentimes necessary and not as scary as they sound.
As you read this article and others like it, please remember these are individual experiences. Just because one person had a terrible response or reaction doesn’t mean you will. Just because I haven’t had any side effects and have been able to stay on Humira for more than 14 years, doesn’t mean the same will be the case for you. Use these experiences to level your expectations and have a better grasp of what it’s like to be someone with IBD on a biologic drug and make an informed choice with your gastroenterologist.
If you haven’t done so already, be sure to check out previous Patient Experience articles I’ve shared on Lights, Camera, Crohn’s about:
For those who are “new” to Humira, those who are preparing to do their loading dose, or those who aren’t familiar with the drug—in the United States a new and MUCH improved Citrate-free formula came to market for pediatrics and adults in late summer/early fall 2018. I did my first Citrate-free or as many of us call them, “pain free” injection in September 2018 while pregnant with my second child. If you’ve been on Humira for a long time like me or tried it prior to that time, you know how painful the injections used to be and how much easier they are now. It’s a gamechanger. The loading dose used to be four injections—all in the same sitting that felt like liquid fire were going through your leg or abdomen. Fast forward to 2018, not only is the needle gauge smaller, but the formula no longer stings. Click here to watch the video of me experiencing Citrate-free Humira for the first time while pregnant.
I went from dreading my injections (even a decade in) to doing injections on my couch and smiling ear to ear while my kids watch me because I feel next to nothing. This is important context for this article. Some of the experiences you will hear will be from people who never had a chance to experience Citrate-free Humira, and others who say the shot is “easy” to do most likely started or were switched over to the pain-free version. This change in the formula has been an incredible win for anyone on Humira in the United States. The loading dose not only won’t hurt but is only two injections now versus the original four. The challenge is getting used to the mechanics of doing a self-injection and getting into the right headspace each time you’re due for a dose. Regardless of whether it hurts or not, you are still injecting a heavy-duty medication, which suppresses your immune system, into your body. I’m often asked if I get “sicker” being immunocompromised and being a mom of little ones—my answer to that is no. I am mindful of washing my hands and not eating or drinking off anyone. My GI has me do “safety labs” every three months to monitor my bloodwork, along with an annual colonoscopy.
Debbie: “I was on Humira for four years. I responded well at first and liked the ease of doing injections myself. The Citrate-free version was much better and less painful than the original version. I unfortunately ended up developing antibodies and have been switched to Stelara. I didn’t have any side effects with Humira other than some itchiness at the injection site. Ice helped a lot with that.”
Melanie: “After a reaction to Remicade, I was so anxious to try another biologic. This was in 2009 and Humira hurt so much. I had a massive panic attack trying to do the loading dose of the original version. I was 19 at the time. I couldn’t continue with it. Now, I’m on Cimzia, but had to take a mental health break from biologics for a few years.”
Brad: “I started Humira back in March of this year. It’s been a complete gamechanger for me. Humira has me in clinical remission as of my last colonoscopy. I don’t have much reaction to it. Sometimes, the injection can hurt a little bit, but usually not at all. I’m shocked at how easy it’s been. I was originally very nervous about starting an injectable.”
Jenn: “Humira was traumatizing. It took well over a year for me to self-inject without stressing and crying beforehand as the injection hurt so much. While it did provide relief from symptoms for a while, the reaction I ended up getting was significant, and impacted my ability to live normally. So not only had my Crohn’s symptoms returned, but they were also joined by additional symptoms caused from a reaction I was having to the medication. I will never not be a proponent of taking meds as they do help, but I will also never forget the experiences I lived due to them.”
Natasha: “I was in the pediatric trials for Humira. I don’t remember it doing much, but almost 15 years later, I’m still traumatized by the trigger mechanism and feel the phantom pains in my legs from doing them for so long. Anytime a new medication it brought up and it’s a shot, I ask if there are self-administered options vs the auto injector. The PTSD is bad.”
**It should be noted Humira can be administered with an auto-injector pen (where you press down on a button and there’s a clicking sound) or with a syringe where you draw up the medication. I have only used the auto-injector and prefer the ease of it, but it’s all personal preference and what you are comfortable with.**
A mixed bag of experiences
Sofia is now on Stelara after having surgery to remove some of her bowel. When she thinks back to her time on Humira, it’s not a pleasant memory.
“I experienced all the normal flare up symptoms while taking Humira and gained a lot of weight. I just remember my self-esteem plummeted as well as my hopes for remission.”
Kathy: “I was on Remicade, but I’ve been on Humira now for five years and have had great results with minimal side effects.”
Kaitlyn: “I have been on Humira for a few months to treat my Crohn’s disease and Hidradenitis Supprativa and it has been life-changing. My Crohn’s is in microbial remission, and I no longer have to get weekly, painful steroid injections for my HS.”
Jessica: “I’ve been on Humira for four years and my last colonoscopy showed there was mucosal healing and no active Crohn’s. I inject every 14 days and it has gotten easier, especially when I inject and tell myself that it is healing my body. Then, I don’t feel the shot. I’m very thankful for it!”
Myisha was on Humira for a year and then had a major allergic reaction.
“The last injection I gave myself, my face, lips, and mouth swelled up and I got lightheaded. My husband immediately called my GI and I had to be given an EPI pen along with 4 Benadryl intravenously after being rushed to the emergency room. I experienced hypersensitivity anaphylaxis and angioneurotic edema.”
Keyla: “When I was on Humira, it made me lose my hair. I felt terrible on it, and I never noticed much improvement with my IBD.”
Danielle has struggled to find a biologic that manages her disease. Both Humira and Entyvio failed her. She’s now on Stelara.
“I was on Humira for three months in 2021. It worked amazing right off the bat, then suddenly I had no response whatsoever. The injections were quite traumatic for me as I had one injection needle fall apart as I was giving the injection.”
Sarah: “Humira has improved my life and helped manage my Crohn’s symptoms and allowed me to eat a wider variety of foods then when on previous medications. However, there have been some compromises on my part. I’ve dealt with some bad injection site reactions that have caused me to have to take allergy medication prior to administering it to help manage the reaction. I’ve also experienced severe sinus congestion and uveitis that I did not have prior to taking Humira. I’ve lost some sense of smell due to how bad my congestion can get, and I can’t touch or rub my eyes without risking a flare up of uveitis. Overall, I would say that it has been worth taking Humira. I’ve learned to manage my side effects and have gotten over my fear or self-injection.”
Catie: “My experience with Humira was good at the beginning. The medicine helped me achieve remission. The injections were always so painful no matter what tricks I tried. I ended up getting drug-induced lupus from Humira, so I went off the drug. The drug-induced lupus took more than a year to recover from—it was awful.”
Hayley: “I was on Humira for a year and was doing great on it, practically in remission. Unfortunately, I developed psoriasis (which I’ve been told is a rare allergic reaction to the drug itself). My sister who has Crohn’s was also on Humira and had the same reaction. I wish I could’ve stayed on it longer because it was easy and helped me so much, but unfortunately, I had to come off it. It was my first biologic and gave me a lot of hope!”
Krista: “I was on Humira for about 6 months. It was working great—other than extremely painful injector pen that I dreaded using every month. I started to develop scaly patches on my legs, back, stomach, and scalp. My hair started falling out where the scaly patches came up on my scalp. My dermatologist thought I had biologic-induced psoriasis, so I stopped taking it. My biopsies came back negative for psoriasis, but I still ended up switching medications.”
Melissa: “I was on Humira in the past. It didn’t work for me and caused me so many issues. My body itched so badly while on it. I would scratch sores on my body from it. My joints ached all the time. And on top of it, my ulcerative colitis got worse while on it.”
Adriana: “I was on Humira for a year. I did weekly injections, but they wanted to increase my dosage to two injections. For me, it didn’t work (as with a lot of drugs I was on), but out of all of them, it worked best at making me feel better. I don’t remember having too many side effects from Humira besides slight bruising around the injection site, but definitely worth a try!”
Ellie: “I started Humira in 2019 after a four-month bout with steroids. I went into remission a month later after only two injections. I have remained in remission ever since.”
Dana: “I was on Humira for around 2 years. It put me into remission, and I was doing very well, but then I started to have Crohn’s symptoms. My doctor thought about increasing the frequency of my dosage, but my blood levels were adequate, and she didn’t want them to become too elevated with an increase in dosage. I also developed severe psoriasis on my scalp as a side effect. I ended up flaring and having to stop Humira to try something else.”
Jessica: “Humira has been great for me! Really no side effects. I did have to increase my dose to weekly because I metabolize medication too quickly.”
Phil: “I had a small bowel resection in 2004 and after a 10-year remission, my Crohn’s became active again. I was put on Humira, and it was amazing for about 7 years with a few side effects, biggest one being hypersensitivity to the sun. I miss being on Humira because it also helped my joint pain and psoriasis.”
Stacey: “Humira was my final effort to save my large intestine and felt pretty good on it! Aside from horrid cystic bacne, which isn’t listed as a documented side effect (but I swear there was an association there!), I had no side effects, and I felt great on Humira! It gave me a quality of life! I was on Humira when I made the hard choice to have a total colectomy, and the disease had spread since my scope four months prior. Goes to show that symptoms don’t always correlate with inflammation. But I’m grateful for my experience and the opportunity to safely take Humira.”
Pregnancy and motherhood with Humira
As an IBD mom of three, I stayed on Humira until 39 weeks pregnant with my oldest, and 37 weeks with my second and third child. I had scheduled c-sections with all three, so I was able to coordinate my injection schedule with my GI ahead of time. I breastfed my second child for about 6 months and supplemented and just finished exclusively breastfeeding my 14-month-old—all while on Humira. I have three, perfectly healthy children and had flawless, Crohn’s-free pregnancies. I also did not experience post-partum flares and I credit that to the fact I stayed on my medication and picked it right back up the day we brought the babies home from the hospital.
Check out these helpful resources for pregnancy and biologics and have long-term research that shows the safety and efficacy of staying on Humira through the entire family planning process, pregnancy, and beyond:
Dani: “My experience with Humira has been wonderful. I’ve been taking Humira for two years. The nurse ambassadors are so nice and helpful. I was nervous about the injections, but they really are so easy and don’t hurt. Humira has helped me to feel the best I’ve felt since my Crohn’s diagnosis 4.5 years ago. I stayed on Humira through my pregnancy, and I had no Crohn’s related issues during or after. It’s been a life-changer. Most days, I almost forget I have a chronic illness. I’m praying things stay like this, at least until we have another child.”
Stephanie: “I have been on Humira since 2016. I was diagnosed with ulcerative colitis postpartum after my first baby in 2015 and was incredibly sick. I had multiple blood transfusions, tons of steroids, etc. I had some reactions to Humira when I started taking it (skin rashes and almost withdrawal-like symptoms) before the two weeks was over, which almost presented itself like lupus, so I was put on weekly injections and have been doing that ever since. After I was put on Humira, it was a lifesaver. I felt the best I had in forever. Since having my second child in 2019, it’s been more up and down. At my next colonoscopy, we will look to see if I have inflammation still and if I do, I will go off Humira (which is so scary to me) and try something new.”
Katie: “I have been on Humira for 7 months. I was completely terrified to be on Humira, but I was so sick, and knew I needed to do something for not only myself, but my husband and my kids. Humira has gotten me back to the point of feeling back to my normal self. The only side effect I noticed for the first few injections is I would feel absolutely exhausted that next night. It’s super quick and I get on with life as usual!”
Sarah: “I have been on Humira for a little over a year now. I was on it while pregnant with my son. It was an easy process. But now that I’m 4 months postpartum, I am experiencing some weird side effects. My liver levels are elevated, and I am getting symptoms back. My GI and rheumatologist are thinking of moving me to once a week or adding another medication. I am fearful they will switch me off or add things and I won’t be able to breastfeed any longer. Humira has been wonderful, and I am just nervous my body has begun to build antibodies against it.”
Cece: “I have struggled with my ulcerative colitis symptoms on and off since I was 19. At 36 years old, after trying 3 years to get pregnant, I had a colonoscopy that revealed active inflammation. That was what finally pushed me to get on Humira. My symptoms settled down and luckily, I’ve been in remission and feeling great ulcerative colitis-wise through IVF, pregnancy, and breastfeeding.”
The Pediatric patient point of view
Emily is a 13-year-old who has been on Humira for three years. She says Humira has done a lot to help her get Crohn’s under control.
“Doing injections myself has helped. It feels better to “be in control” of giving yourself the shot. I’ve been having less stomach pains and less joint pains from Humira. My joint pain and stomach aches used to be really bad. I used to cry myself asleep at night because how bad the pain was for both my joints and stomach. Now that rarely happens. Yes, I still get joint pains, but not to the point where I start crying. I get a little tired after the shot, but it helps me a lot. So many positives.”
Celia is 15-years-old and started Humira in October 2021. About two months after her initial loading dose, she started to notice less bowel movements, but still had urgency and abdominal cramping. Her GI decided to increase her dose to 80 mg since her inflammation markers were elevated and she was flaring. (Typically, we are put on 40 mg injections, twice a month).
“I feel better! I still have my bad days and have had minor issues. I’m hopeful that this will be the medicine to get me into remission! On the mental side of things, I have struggled with injection anxiety. I have never been afraid of needles, and I’m still not, but I overthink every injection. That has been my greatest struggle on Humira, but I’m hopeful over time I’ll overcome it!”
Cindy’s 8-year-old daughter is on Humira. She says the various worries and challenges all give way in the end to gratitude.
“Humira is saving my daughter’s life and giving her a tremendous quality of life. Thirty years ago, an 8-year-old would have had such a different trajectory my she is experiencing and hopefully will continue to have. I love science.”
Struggles with access to Humira
Regardless of the biologic you are on, dealing with insurance, prior authorizations, and specialty pharmacies can make access to drugs like Humira a challenge. AbbVie (the maker of Humira) offers several programs to help streamline the process and take some of the burden off patients.
Once you enroll in Humira Complete, you are connected with a Nurse Ambassador who will speak with you directly (and even do in-person visits) to help you gain confidence and understanding about everything from administering your medication to any side effects you may be dealing with. Humira Complete offers a Patient Savings Card and Prescription rebates, and offers injection training through videos, an App to help you stay on track, and 24/7 availability should you need to reach someone. The phone number for Humira Complete is 1-800-4HUMIRA (1-800-448-6472).
Even though Humira Complete exists and has helped me many times, there are still many patients dealing with access issues or completely unaware of the fact that the programs and savings are available:
Emily: “I have been on Humira since October of last year and it has been both great and horrible for me. Remicade stopped working for me after 5 years and Humira was able to help calm down the flare I had been experiencing. I learned with time that at home injections weren’t something to fear. Humira is very convenient. Humira came with large bills and a battle with insurance and Accredo pharmacy. Every month, unnecessary stress had been added to my already full college schedule. In between classes I found myself calling multiple people to make sure my medication was going to arrive on time and that it didn’t cost me $4,000 each time. I’ve had issues almost every single time I refill my medicine. It almost makes me want to switch medicine just so I don’t have to deal with it, which is unfortunate because the medicine itself helps me.”
Sydney: “I just came off Humira. It worked great until it didn’t anymore. The formula changed a few years ago, which made it a lot more tolerable, but for a very tiny human, the auto injector caused some atrocious bruises. I ended up having to use syringes because of the bruising. It was a fight with insurance almost every time I needed a re-fill. The medication was good, but the stress trying to get it was almost not worth it. I only reached remission for about a year on it and then my body figured it out.”
Sam: “I have been on Humira for five years. I would say the issues aren’t the drug itself. Insurance companies make it so hard to get access. Ordering my medication from a specialty pharmacy is the worst.”
Christie: “I have been on Humira for three years after being diagnosed with ulcerative colitis in early 2019. The decision to begin taking Humira was a tough one, but I wanted to try anything to reach remission. While I have had a few insurance hiccups here and there, my experience with Humira has been great. I am enrolled in the Humira Complete Program, where I can track my injections and a nurse ambassador calls me once a month to check in. The resources AbbVie offers are incredibly helpful. Overall, I credit Humira for getting me into symptomatic and endoscopic remission.”
Final thoughts
All in all, you must always weigh the risks versus the benefits when determining a treatment plan with your physician, regardless of the medication. I personally have not dealt with side effects and have relied on Humira to help me maintain my remission and feel my best so I can be present for my family. What started out as a shocking change in my life, is now just part of my routine. Be patient with yourself and whether the injection hurts or not, reward yourself after. I usually enjoy some ice cream while watching reality TV. Giving yourself an injection isn’t easy, treat yourself to something for being a compliant patient who is doing all you can to help treat an unpredictable and complicated disease. And most importantly, remember you are not alone in your fears, your struggles, and your worries.
I can remember the moment vividly. Leaving a gastroenterologist appointment three months post-surgery and crying walking to get sushi with my husband on a chilly November day in the middle of the workday. When I walked into that clinic appointment, I was hopeful I would never need a biologic medicine again. We were planning to start trying for a family after our June wedding, but my doctor knocked me back to earth and told me my Crohn’s was too aggressive and I’d be setting myself up for disaster if I attempted going med-free.
The tears flowed. I felt like a failure. I worried about bringing babies into this world while on a heavy-duty drug and if my surgery would provide me with the remission I had never achieved the first ten years of having IBD. I was so upset my husband-to-be and I both called into work and took the rest of the day off. Over sushi we talked about our future family and my health. Everything seemed at our fingertips but out of reach at the same time. That was November 2015. Sometimes we don’t realize how far we’ve come unless we look in the rearview mirror.
Now July 2022, we’re gearing up to celebrate our third child’s first birthday (July 14). We had his first birthday party over the weekend. It’s been a surreal and incredible ride since that November day. I often find myself looking at my three children and still feeling surprised my body was able to create them and bring them safely into this world.
Knowing this is our last baby and the last “first” of everything is bittersweet and amazing all at once. I feel an immense sense of relief and comfort being at this stage and knowing I don’t need to count on my body to sustain life through pregnancy or breastfeeding anymore. I’ve made it an entire year exclusively breastfeeding and if you would have asked me if that would ever be possible a year ago, I would have said no way.
One of my fears is when my next flare will be and leaving my children for days on end while I’m in the hospital. While I know it’s a not a matter of if, but when, it puts me at ease that my children are almost out of the baby stage, and I can begin to explain my health struggles and why I may not always be like other moms. When my oldest was born I hoped to stay out of the hospital until he started walking. He starts kindergarten next month. I can only hope I stay flare-free until my other two are that old.
Learning as I went as a woman with IBD
When I think back to that November day and the tough love my GI professed, I’m so grateful I followed her lead and trusted her approach in managing my Crohn’s. Back then, I wasn’t a patient advocate. The only IBD mom I knew was my cousin’s wife. I navigated the waters of family planning and my first pregnancy all alone without much guidance. Each pregnancy I became more well versed on how to juggle IBD and family planning and everything that comes along with it, but I think back to how isolating and overwhelming it can feel when you dream of having a family, but don’t know how to make it happen when chronic illness is in the mix.
No one knows how their family will play out or if fertility or loss will be a part of their story. It’s sad how many women with IBD choose to be voluntary childless, not because they don’t want to be a mom, but because of the limitations of their IBD and overall well-being getting in the way. A day doesn’t go by that I don’t recognize how lucky I am that I “get” to be a mom. Not every day is wonderful, but even in the trenches as a stay-at-home IBD mom of three littles with almost no breaks, I do my best to remind myself of that day my husband and I got sushi and dreamed of living the life we are living today.
Take yourself back to the very first time you needed medical attention for your IBD (but didn’t know it yet). Close your eyes for a moment. Who was that person? Do you know them anymore? How have you changed and transformed since that life changing day?
I was diagnosed with Crohn’s disease July 23, 2005, at age 21. I was blindsided by a chronic illness after growing up as a literal picture of health. A three-sport, in shape athlete, who had never even had an ear infection or been to an emergency room. As a recent college graduate, my world flipped upside down as I struggled to find my way in the real world.
Now, 17 years later, I can tell you firsthand what I, you, and so many others have endured on our patient journeys and how each experience (even the mundane) serves as monumental touchpoints for gaining independence and confidence in making you a more empowered and direct patient.
Let me paint the picture clearly for you
The first time you bravely laid in an emergency room bed and every time there after—not knowing the tests, pokes and probs, and physical scrutiny you were about to go through.
How it feels to be wheeled by a stranger through stark hallways to CT scans, MREs, and scopes, wondering what the results will be on the other side and the repercussions for more medications, a longer hospital stay, or surgery.
The difference a couple months makes–pre-diagnosis in May 2005 and 2 months after 60 mg of prednisone a dayand 22 pills a day.
What it’s like when you say goodbye to loved ones and they roll you into the OR and you’re shaking like a leaf, all alone and feeling frail and broken, alone with your thoughts and prayers.
The number of moments you’ve watched nurses and even rapid response nurses fumble with IV’s try after IV try and when it’s been more than five, you find your voice from that point forward and start only giving medical professionals two tries before it’s on to the next.
How it feels at the butt crack of dawn when the world is sleeping and the hospital is bustling, waking you abruptly to get more vitals and more labs and you lay alone, haggard, frustrated, and delirious.
The moment when your GI has a heart to heart with you about starting a biologic and having to determine for yourself what route is your preference—infusion or self-injection. Would you rather sit for hours hooked up to an IV drip or sit on your couch with your kids looking on as you inflict pain on yourself.
The times you’ve sat up in the middle of the night wide awake thanks to the prednisone kicking in while the rest of your world is asleep wondering if you’ll ever regain some semblance of control of life.
What it’s like trying to eat meals inconspicuously with your family while they not so subtly watch each bite and every trip to the bathroom with sadness and worry in their eyes.
How it felt driving to a first date or a job interview and feeling like your IBD is a dark secret looming over the conversation and not knowing when to take down your walls and share.
Listening to your friends make comments about health and energy without considering what your experience with a chronic, debilitating illness may be like since you look well on the outside.
What it feels like to look at your reflection in the hospital bathroom. Battered arms, sunken in eyes, a shell of who you used to be. But as soon as you walk out of the door, putting a soft smile on to protect your visitors from worry.
What it’s like to sit on an airplane or be on a road trip with others and silently worrying about whether you’ll be able to make it and what your game plan will be.
When you’re up in the middle of the night doing the second half of colonoscopy prep and wondering ‘why me’ in your 20s and 30s, feeling isolated in the physical, mental, and emotional anguish the process puts you through year after year.
What you’ve internalized each time someone dumbs down your IBD, offers up ridiculous remedies or goes into a discourse about their aunt’s brother’s cousin who “healed” their Crohn’s this way.
When you’ve waved the white flag and alerted family and friends that you needed help or to be seen in the hospital after doing as much fighting as you could against your own body.
The first time you bravely looked down at your incision and saw your body forever changed and came to see your scars as battle wounds.
Waking up each day not knowing what the next 10 minutes will feel like for you and getting after it anyway.
Not knowing if you’ll find your person, but meeting people and having the courage to share about your health issues, even if there are heartbreaks and disappointments along the way.
Deciding to have a baby and discussing family planning, despite all the what ifs and becoming a parent because that’s what you hoped for prior to your IBD.
Landing that dream job with your IBD in your back pocket, not letting the detours stop you from finding the path you were meant to go on.
Celebrate the independence you’ve discovered
The list goes on and on! No matter how old you are when diagnosed with IBD, in that moment we are robbed of our naivety and thoughts of invincibility, and we’re forced to go on a lifelong war and conquest. Our bodies no longer feel like ours. Our dreams feel in disarray. Our people may change and not be who you thought they were. Our hearts may break, but like a phoenix this disease can build you up just as much as it breaks you down.
The reprieve of remission, while not perfect or without symptoms has enabled me to breathe and regain my grounding. In 2015, after three back-to-back bowel obstructions and 18 inches of my small intestine, Meckel’s diverticulum, and appendix removed, there was only one way to go and that was up.
Give yourself grace. Celebrate the independence you’ve discovered that you may not be able to have realized until you’re years out like it took me. And when you’re in the hospital, in for a routine clinic visit or for labs, taking your meds and balancing every daily decision against how it will make your IBD feel, you’ll come to realize what you take on and all you accomplish every day just to survive and thrive, makes you something special. While you may feel dependent on others—and the support of caretakers and a support system can’t be understated, neither can the endless strength that lies within you.
When something traumatic happens—like the mass shooting in Uvalde that left 19 children and two adults dead last week, the stress, sadness, and overwhelming grief can cause IBD to spiral out of control. You are not alone if the heavy nature of what’s happening in the world causes your mind to race and your GI symptoms to be amplified. As May (Maternal Mental Health month) comes to an end, a look at how we can best navigate these emotions and how our thoughts impact the gut-brain connection.
Looming threat of flares and violence
With the constant news cycle that bombards us, added into our reliance on social media, and seeing everyone’s opinions and posts, it’s the perfect storm for feeling suffocated by sadness. Life with IBD, whether you are in remission or not, is living with the looming thought of when your next flare or hospitalization is going to be. You know in your heart of hearts that it’s not a matter of if, but when your IBD is going to rear its ugly head. These days with violence happening left and right, it’s a challenge not to wonder and worry when you’re out in public if you’re going to be in the wrong place at the wrong time or if your children are in harm’s way.
The anxiety of worrying about the “what if” and the pain of grieving can often correlate to actual physical pain in our bodies that are already fighting an uphill battle. It’s difficult to try and make sense of what’s going on in the world. It’s impossible to try and wrap your brain around how people can be so evil. As a mom, I found myself crying putting each of my kids to sleep last week. Snuggling them a little longer. Worrying about their wellbeing and praying as hard as I could over them.
As a former news anchor and journalist, I vividly recall the moment the news of Sandy Hook broke. I was standing in the newsroom, about to head out to the studio to anchor the Midday show, when the heartbreaking news came over the newsfeed. It was incomprehensible then and it’s even worse now as a mom of three. I have only been able to watch the news in short snippets right now because I felt like the sadness of it all was consuming me in an unhealthy way. There’s a guilt that comes with trying to tune out the coverage and feeling like you’re not giving the reality of other peoples’ heartbreak the attention it deserves, while trying to protect your own mental state and heart.
Dr. Lindsay Hallett (Zimmerman), PsyD, is a clinical psychologist in Indiana. Here is her advice for coping:
Give yourself half the grace you give to others. This can make a significant difference in your overall well-being and stress level.
Reach out. If connection feels like what you truly need, enlist a friend or relative. The higher the level of personal connection, the better- seeing a friend is preferable to FaceTime, a phone call is preferable to texting, etc. But also, any connection is better than none.
Make time to move. Time is a premium to everyone and even 15 minutes will do. Listen to your body and give it what it needs – stretching, a walk, an intense workout, gardening… any kind of movement that respects your body’s own capabilities.
Give yourself permission to check out. If everything feels to be “too much,” avoidance can be healthy. Communicate healthy boundaries with others that you can’t talk about topic XYZ right now.
Seek therapy. Your emotional house doesn’t have to be “on fire” to benefit. Ask your primary care doctor, contact your insurance company, or research PsychologyToday.com to find a therapist. In-person with occasional virtual supplementation is best, but online therapy platforms can be helpful if you aren’t having luck otherwise.
Give yourself permission to unplug and stop doom scrolling. While there is no “right way” to cope with traumatic events like what happened in Uvalde and so many times before, give yourself permission to feel whatever complex emotions you are experiencing while also giving yourself space and time to take breaks and turns off screens. When you have IBD, being cognizant of what triggers you and recognizing how your symptoms speak to you, can allow you to stay one step ahead of the game in managing your illness. Focus on what’s tangible, what’s right in front of you, and what you are able to control.
This week I was feeding my 9-month-old a smoothie in his highchair before I had to run to grab my older two from preschool. I realized it was an injection day, so I figured I would do my shot while the baby was in the highchair to get it out of the way. It seemed like no big deal in the moment. But as I sat there and saw the baby food next to my Humira on the kitchen table I started thinking about how life as an IBD mom may feel normal to us, but what we do each day goes above and beyond.
Then my mind started wondering. I thought about how I had taken my oldest to his outdoor fieldtrip last week and refrained from having my morning coffee or eating breakfast so I could curb my Crohn’s from causing me problems. I thought about how my 3-year-old is so intuitive if she thinks I’m in pain, she grabs my belly and pretends to put the pain into her belly, telling me “I love you mama, take a breath.”
Take a breath. Boy oh boy do mothers in general need to stop and take that advice or what? Motherhood whether you have IBD or not is the most beautiful, exhausting, and rewarding challenge. No matter what season you are in it comes with triumphs and challenges it comes with happy tears and sad ones, too. It’s a constant game of trying to manage your emotions and tap into your patience, or whatever is left of it each day. We come to forget that we are also growing up in many ways, just as our kids do.
Motherhood and IBD is a balance of wanting to be all the things but knowing that at any given moment your body can throw your life and plans upside down. There are unspoken limitations.
It’s silently worrying and praying what will happen to your family if you go down and end up in the hospital.
It’s trying to stand tall when all you may want to do is rest on the couch.
It’s seeing your children thrive and feeling so much pride you constantly feel like you can cry tears of joy at any moment.
It’s getting scared when your little one randomly says their tummy hurts.
It’s knowing that your disease robbed you of a great deal—physically, mentally, emotionally, but it didn’t rob you of the greatest gift of all, being a mom.
It’s recognizing all that is still possible, even with this grueling disease.
It’s showing up each day, not only for yourself but for your family.
It’s taking the pain and feel-good days and focusing on one moment in time that feels slow but is going by in a flash.
Take a breath. You deserve it. We weren’t meant to mother alone. Lean on your village. Voice your struggles. Cry if you want to cry. But also, don’t put yourself to unattainable expectations. You have a chronic illness and you’re a mom. Don’t push yourself to the brink. Some days will be adventure-filled, others will be spent on the couch—and that’s OK. Your children are learning from you and gaining innate intuition, and that’s a gift. They’re witnessing that health is not something to be taken for granted. They’re watching you even when you think they are not. What may feel mundane to you, is not. As an IBD mom you are juggling countless extra balls in the air that healthy mothers don’t have to think about. Give yourself credit where credit is due and take a breath.
The week before my oldest son, Reid, was born I penned him a letter entitled, “A letter to my unborn son, from your mom with Crohn’s disease.” When I wrote that article, I was 38 weeks pregnant. As a first-time mom, living with Crohn’s disease, I had a mix of excitement, anxiety, and fear about taking the plunge into parenting. Tomorrow (March 29th) Reid turns five. Now as I reflect on my experience of living as an IBD mom for half a decade, I want to share what I’ve learned along the way with you and write him another letter to mark this milestone.
Dear Reid,
Where do I begin? Five years ago, you changed my life in the most beautiful, exciting, challenging, and everchanging way possible. You made me a mom. After more than 11 years of fighting Crohn’s disease and constantly feeling at war with my body, I was able to nurture you, help you grow full-term with a flawless pregnancy, and bring you safely into this world. I feel like I blinked, but I also feel like I’ve known you my whole life.
We’ve been through a lot together, little buddy. As a stay-at-home mom I’ve been by your side through everything. I’ve witnessed every moment of you growing up and I feel eternally grateful for that opportunity. Before you were born, I used to pray that I wouldn’t be hospitalized with a flare up until you could walk. I imagined you as a toddler walking into my hospital room. I feared what it would be like to spend countless days away from you, Facetiming with a smile through the tears or trying to recover from surgery with a little one depending on me at home.
But those fears never became realized. We’ve made it five years, flare up free, baby boy. That’s not to say I haven’t had painful days, procedures, and worries along the way. But you’ve been my greatest motivation since you came into this world. You’ve patiently sat day after day on the bathroom floor when mommy’s tummy wasn’t feeling well. You’ve comforted me on the couch when I don’t have the energy to go outside. You’ve cheered me on as I drank colonoscopy prep each year. You’ve handed me candy and told me it was medicine to make me feel better. You’ve attended countless doctor appointments and lab draws. You’ve snuggled me when you know I’m unwell. You’ve sat next to me with a toy pretending to do an injection alongside me on Monday nights, staring at my face to see if I was hurting. You’ve taken your own shots at the pediatrician like a champ because you’re so desensitized.
You constantly see me through a lens I’ve never been seen through before. I catch you watching my facial expressions. I know when you’re worried about me. I melt when you randomly ask me how my tummy is feeling and if I’m feeling happy, but also feel a sense of sadness that you even need to have that thought cross your mind. You are an empath with a heart of gold. While I wish you didn’t need to witness and experience these difficult moments and I try my best to shield you from my struggles, I know in my heart, and I’ve witnessed firsthand how my disease has shaped and continues to shape our family in positive ways.
As you gear up for kindergarten this fall, I will miss our days…even the long ones! You’ve been a constant in my life since the moment I held you for the first time. Your personality as a baby seemed quiet and shy, boy did you have me and everyone else fooled! You’re so silly, so smart, so thoughtful, so outgoing. You’ve given me a run for my money more times than I can count, but I love that you are so steadfast in knowing what you want and sharing that openly with me.
As an IBD mom I find myself looking at you, and at your sister and brother, on the daily wondering and worrying deep down if one day you’ll get my disease. Every night we say our same prayer, the same prayer I’ve said to you all your life, hugging and rocking back and forth.
“Dear God, keep my baby healthy, safe, and strong. Guide him and protect him. Let him continue to be a light for everyone he meets. I love you forever and ever and ever, I love you forever and ever. I love you forever and ever and ever, I love you forever and ever.”
When I pray for *healthy*, I mean no IBD…but you don’t know that yet. You are a picture of health in every sense of the word. Someday when you’re older you’ll know what I’ve been up against my entire adult life, but my hope is that it will inspire and empower you to be strong through the unpredictable peaks and valleys life will throw your way.
I still haven’t explained fully to you that I have Crohn’s disease. I’m not sure it’s necessary to even say “disease” to you. As you grow up, I’ll tell you more. But for now, I don’t want you to worry or wonder. I hope we get another five years hospital visit-free.
Thank you for showing me all that’s possible and for making me a mom. Five years of loving you, guiding you, and watching you thrive has been magical. When I was pregnant with you there was a Florida Georgia Line song called “H.O.L.Y.” that always made me cry thinking of you—because of the line, “you’re the healing hands where it used to hurt.” The other day I was driving home from the grocery store and that song came on the radio. I hadn’t heard it in years. Instant tears. Instant gratitude.
I love you, Reid Robert. I wish I could bottle up your laughter and littleness. I find myself really staring at you lately in awe that we’re at this point already. You are everything I ever dreamed of and more than I ever hoped for. Thank you for being the sweetest motivation and distraction and for being wise beyond your years. I am so so proud of you. I appreciate you reminding me without knowing it that I am so much more than my disease.
When you think about IBD and motherhood, you may instantly imagine a woman who has dealt with her disease for years before getting pregnant. But that’s not always the case. This week on Light’s, Camera, Crohn’s we hear from IBD mom, Angela Knott. She was diagnosed with ulcerative colitis when she was 17 weeks pregnant with her second child in December 2020. While a circumstance like this is rare, it is possible and complicated.
Between navigating the pandemic and a chronic illness, this diagnosis rocked her world. Angela was living in Australia (away from all family and friends) because her husband is a U.S. Navy pilot. They were on orders for a pilot exchange program in Adelaide, South Australia. Angela and her family now live in Texas.
She reflects on her journey as a woman and mother with ulcerative colitis and how it felt to receive a chronic illness diagnosis while trying to bring a baby safely into this world. Prior to being diagnosed with IBD, Angela was in perfect health. She never had a cavity or even broke a bone. She grew up being extremely active and is in excellent shape. Her first pregnancy in 2018 was flawless and uneventful. She carried her daughter to term and had no issues. But everything started to change when she was 15 weeks pregnant with her son.
“During this time, I experienced severe fatigue, anemia, stomach pain, stomach cramps, and weight loss (I lost 15 pounds over two weeks). After a few days of symptoms, I went to my doctor, and I told him all about my symptoms and how I was concerned something might be off with my pregnancy. He told me I was lactose intolerant and that I needed to limit my dairy intake. I did this for three days and then I went back to the doctor because my symptoms were getting worse.”
Angela was then tested for salmonella poisoning and two days later, the test result was negative. By this time, she had already lost 10 pounds and she was becoming scared that something was wrong with her baby. She got a second opinion and was told she likely had irritable bowel syndrome (IBS). That doctor wrote a referral for a gastroenterologist.
“That same evening, I ended up in the hospital due to my symptoms worsening and I was scared my baby’s health was declining since I was so ill. I was told to immediately go to the Women and Children’s Hospital to have the baby monitored (in Australia, this is a hospital for pregnant women, children, teens, and babies). I was more concerned about my baby’s health rather than my own which, is why I went to a hospital that assisted pregnant women.”
While at the hospital, Angela’s baby was monitored and doing well. She was given IV fluids to help with dehydration and she started to feel better. She went home and rested, again being told she likely had IBS.
“Shortly after getting home, I started vomiting and this continued for the next two hours. After speaking with my husband, we decided I needed to go to the ER because something was seriously wrong, and I needed treatment.”
Seeking emergency care during Covid
Due to Covid restrictions in December 2020, Angela’s husband had to drop her off at the emergency room and could not go in, only adding to an already stressful and worrisome situation.
“After reviewing my blood work and hearing about my symptoms, a gastroenterologist at the hospital stated I may have colon cancer, ulcerative colitis, or Crohn’s disease. I knew what IBS was, but I had never heard of UC or Crohn’s before. On top of being told I may have an autoimmune disease or cancer, he told me I needed to have an endoscopy to check for potential inflammation in my colon and that this procedure could result in me miscarrying since I was going to be put under. I had never been so scared in my life.”
Angela underwent the endoscopy in the morning and sure enough, she was diagnosed with ulcerative colitis. She was close to having a toxic mega colon.
“It was a blessing that I went to the ER when I did because if I had waited a day longer, my colon would have become toxic, and my organs would have potentially shut down thus impacting my baby’s life. Later that afternoon, I met with another gastroenterologist, and he gave a thorough explanation of UC and my treatment options. He explained to me I would need Remicade infusions every 6 weeks throughout my pregnancy until I was 36 weeks pregnant. Within the next hour, I received the Remicade infusion.”
She stayed in the hospital for one week and was released on December 23, 2020. Angela received another infusion on Christmas Eve and stayed on a special diet for the next week. Within two weeks, her symptoms had drastically decreased, and miraculously remission seemed to be on the horizon.
“When I started the biologic, I was extremely nervous about how it would affect my baby’s health as well as mine. I was told it was safe for pregnancy, but it was scary knowing that my baby would be exposed to an immunosuppressant drug. I was very cautious during my first pregnancy as well as the first few months of Henry’s pregnancy, so it went against everything I had prepared for and wanted. On the flip side, I also was concerned about how malnourished I was from being so sick. I didn’t want to cause any more issues to my body or cause something to go wrong with my pregnancy.”
Initiating Remicade while pregnant
When Angela was 28 weeks pregnant remission became a distant thought, as her body was rejecting the infusion and she started flaring, again. She had a flexible sigmoidoscopy which showed she had severe amounts of inflammation in my colon.
“At 30 weeks pregnant, my bloodwork showed that my colon was nearing toxic levels and that I needed to have my baby early to ensure my organs didn’t shut down. A few days later, I was admitted to the hospital and my baby, and I were monitored for a week. I was given fluids and steroids to assist with the inflammation (a steroid shot was also given to me for my baby’s lungs). At this point, I had to switch OBs and delivery hospitals since I was admitted to a hospital that dealt with high-risk patients. This was the best decision possible since I was given an amazing team of doctors and specialists.”
Angela and her son were monitored closely. Four medical teams were on board to do all they could to ensure a healthy delivery—NICU, colorectal team, OB, and gastroenterology.
Her miracle baby, Henry, arrived 8 weeks early via an elective c-section April 1, 2021. Angela had a classical c-section (vertical incision on her abdomen) because after she delivered the colorectal team had to check her colon for inflammation.
Luckily, the inflammation was “only” considered mild to moderate. Angela’s bloodwork the day before had showed her colon was near toxic levels. She had been prepped for a possible ostomy. Fortunately, she still has her colon.
How Henry was after birth
Angela’s son was born extremely healthy and came out breathing on his own. He spent the first six weeks in the NICU to assist with growing and feeding and remained in the hospital for an additional week.
“I received another Remicade infusion a few hours after delivering as well as an additional infusion a few days later. Within 24 hours of delivering Henry, I felt like my old self again (pre-UC diagnosis) and I was almost immediately in remission. It was determined my UC was most likely dormant for years and my pregnancy triggered it. Additionally, my initial pregnancy flare started shortly after my second trimester and the Remicade failed when I started my third trimester. My medical team thinks my pregnancy hormones caused a lot of my issues.”
Postpartum as a newly diagnosed IBD mom
In the months following Henry’s birth, Angela was relieved to be feeling more like herself. The fear of a looming flare worried her as a stay-at-home mom. She ended up losing 30 pounds during her pregnancy and was recovering from a very painful c-section.
“Fortunately, I did receive counselling services throughout my pregnancy (after I was diagnosed) and postpartum which helped.”
Due to being on so many different medications and having a stressful birth, Angela had a low milk supply and therefore breastfed, pumped, and supplemented with formula the first few months.”
“I was grateful my baby and I are alive; every day I rejoice thinking of how far we have come, and I am extremely grateful he is healthy and happy. I now have a deep understanding of how short life is and I no longer stress about life’s minor hiccups. I constantly count my blessings and greatly appreciate my health which I took advantage of before my chronic condition. I am a mentally strong person now and I have amazing coping skills because of my diagnosis.”
Angela still receives Remicade infusions every 6 weeks and is extra mindful of her health. She works out a few times a week, eats healthy, watches her stress levels, and makes sleep and rest a priority.
“I am doing everything I can to stay in remission and have been flare-free for almost a year. Every three months, I see my gastroenterologist and have bloodwork taken to ensure my health is on track. Prior to staying home with my kids, I was a teacher and I plan to return to the classroom soon. I am blessed to know I have biologic options to help me stay in remission so I can be successful in the classroom.”
Despite only being diagnosed with ulcerative for 15 months, some days Angela feels like it has been years.
Here’s Angela’s advice for other women dealing with an IBD diagnosis prior to getting pregnant, while pregnant, or after delivering:
Seek out mental health assistance during challenging times and find a support group either locally or through social media to connect with others who live with IBD and understand your reality. Angela’s favorite Facebook group is: Ulcerative Colitis Support Group, which has 36,000 members.
Ask all the questions. Don’t hesitate to reach out to your care team whenever you’re unsure about something or want clarity. Do all you can do educate yourself on your condition.
Get a second opinion. Don’t feel bad about seeking care from multiple specialists to ensure you are making the best decisions for yourself.
If you’re a faithful person, lean heavily on prayer and trust that God will watch over you through the highs and the lows of your illness.
Communicate as best you can with family and friends. Angela is grateful for the love and support of her husband.
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