Guarding Mental Health & IBD Through Outside Trauma

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.

Helpful Resources

Coping Strategies to Improve Mental Health

Crohn’s Disease and Your Mental Health

The Link Between Mental Health Disorders and Ulcerative Colitis

IBD May Disrupt Mental Health By Breaking Gut-Brain Link

You May Feel Secondary Trauma from All the Coverage of Mass Shootings. Therapists Discuss Ways to Cope

Hey IBD Mom: Yes, you. Take a breath

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.

A letter to my 5-year-old son, from your mom with Crohn’s disease

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.

“Mama”

IBD Motherhood Unplugged: I was diagnosed with ulcerative colitis while pregnant

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.

Connect with Angela on Instagram: @angiemknott

IBD Motherhood Unplugged: Being an Ostomate through pregnancy and beyond

Pregnancy and motherhood look differently for women who have an ostomy. And not just physically. But also, emotionally, and mentally. The path to motherhood is unique for those of us in the IBD community and we’re living at a time when more research about pregnancy and breastfeeding is right at our fingertips, all of which sets IBD moms and moms-to-be up for success.

Whether you’re on the brink of needing an ostomy and fearful of what this means for your future. Whether you’re a mom of a young girl and worry about whether your daughter will ever be able to be a mom. Whether you’re newly diagnosed and can’t imagine your damaged body bringing a life into this world. Whether you just took a pregnancy test after a bag change and can’t believe it’s positive and don’t know what to do next. These transparent and real-life patient stories will bring you hope and help empower you in coping, preparing yourself, and working with your care team, if carrying a baby is something you hope to do one day.

This week we hear from several ostomates—some who are moms, others who are pregnant right now, and two women who got pregnant after having a proctocolectomy (removal of rectum and colon).

Krista Deveau was diagnosed with ulcerative colitis as a child. After having two bowel resection surgeries and her ostomy surgery over the course of 10 years, she was worried about whether being a mom would ever be an option.

The reason for getting a temporary ileostomy and avoiding even more scar tissue, was because of I wanted to start a family with my husband in the years to come. To my surprise and my GI’s surprise, we got pregnant much easier than expected, truly a blessing because this isn’t always the outcome for everyone.” 

She’s now 24 weeks pregnant and expecting her first baby in June! Krista says this is the best she’s ever felt. Her symptoms have been silent aside from having phantom rectum/poop and passing mucus more frequently lately.

Krista is on a dual biologic treatment plan (Stelara and Entyvio) every 4 weeks. She plans to stop her Entyvio treatment at 32 weeks and resume her infusion in the hospital after she delivers. She’s still in the process for determining her game plan with Stelara. She also takes prenatal vitamins, vitamin D, and b12 shots. She expects she’ll need iron infusions before baby arrives.

As of now, she plans to do a vaginal birth. Due to not having perianal disease and already having significant scar tissue and adhesions from previous surgeries, her care team determined this plan with her. Like any IBD mom-to-be, she worries about the ever-present threat of a postpartum flare, having to be hospitalized and be away from her baby, and possibly passing her disease onto offspring.

Katie Cuozzo was diagnosed with Crohn’s disease when she was 5 years old. She’s had concerns about not being able to get pregnant for as long as she can remember. Now, she’s 34-years-old and a mom of three girls. Her oldest daughter was 18 months old when she received her ostomy, so she’s been pregnant with and without a bag.

“The only difference that I noticed between pregnancy with an ostomy versus without was how to dress. As my stomach was getting bigger, it was a little harder to disguise my bag. I would mostly wear baggy clothing. With my first pregnancy, I was able to deliver vaginally, I had c-sections with my younger two.”

Katie’s perianal disease got significantly worse after delivering her firstborn. Originally, she was planning to have a temporary colostomy, but her symptoms didn’t improve so she decided to get a total colectomy. Despite her IBD causing her so many issues, Katie was able to conceive on her own without any problems.

She remained on her medications during all three pregnancies. She took Cimzia during her first pregnancy and Stelara during her other two pregnancies. Katie also continued to take her prenatal vitamin, vitamin D, vitamin b12, and calcium supplements. She also breastfed all her children.

“As I was planning for ostomy surgery, my surgeon told me that if he did a total proctectomy- removal of my rectum, my chance of fertility would decrease significantly. I made the choice to keep my rectum in place until I was done trying for more kids. I am now at a place in my life where I am beyond blessed with my three daughters and am ready to have my final surgery to remove my rectum, knowing that I will likely never be able to have more kids.”

Katie says she was amazed at how great she felt while pregnant. It was the first time in a while she was having regular, normal bowel movements and was able to eat anything and everything without having abdominal pains and needing to run to the bathroom.

Katie Nichol was diagnosed with ulcerative colitis in 2018 when she was 30 years old. She went through an emergency subtotal colectomy surgery in October 2019 to remove her diseased large bowel/colon and an ileostomy was created.

I was told that I would keep my rectal stump to further my chances of being able to have children in the future, but my doctors told me to seriously think about having my family before my next operation, either a total proctectomy or j pouch surgery. Personally, I never thought I would ever be able to get pregnant after surgery as it was such a big life change and a lot of trauma had happened in my abdomen with surgery.”

Katie and her husband had been trying to conceive since before her IBD diagnosis. She didn’t know anyone in real life with a stoma. It made her anxious as she was unsure how her body would respond if she got pregnant and how it would affect her stoma, intestines, and overall health.

“After receiving my ileostomy, I felt so much healthier, happier, and started to think that my body would be able to conceive and start our family. My IBD team and surgeon kept saying at appointments post op that if I wanted a family I would need to start trying in the next couple of years before my next operation.”

Katie says her surgeon wanted to ‘preserve her pipes’ and advised her that a vaginal birth may cause some damage from pushing. Her care team warned her about the possibility of her rectal stump or stoma having the chance to prolapse, so she went ahead and scheduled a c-section.

 “One surprise I used to get was when the baby was lying to my stoma side (right hand side) it would sometimes look like I had a hernia around my stoma sight, but the baby was underneath my stoma, this freaked me out a good few times, but it was amazing to see the baby move and my stoma still standing strong on my stomach.” 

Katie took prenatal vitamins, iron, and was on a rectal foam for her rectal stump while she was pregnant. Since her stoma surgery, she is no longer on medication. Now she takes suppositories for her rectal stump before bed.

Receiving a Total Colectomy as a mom of two

Kimberly Hooks was diagnosed with ulcerative colitis in 2011. She was 28 years old. Her oldest daughter, Briana, was five years old when Kimberly received her IBD diagnosis. After nine years she was able to reach remission and became pregnant with her second child. Kimberly had a three-stage J-pouch procedure between the fall and spring of 2020. She was an IBD mom of two while all of this was going down.

“I honestly did not want to accept that I had to have three surgeries. I was utterly devastated when I found out that I had to have a total colectomy. My surgeries were scheduled during the height of the pandemic in 2020. Mentally, I could not wrap my head around the fact that I would not be there for my family, especially during this critical time in our lives. I felt hopeless; I felt defeated as a mother and wife.”

Kimberly’s colectomy was unexpected. She did not have time to process anything.

“We often put ourselves last; however, I was not given a choice in this case. The reality was I had two more surgeries to undergo, and I understood that I have a family that loves and supports me. I realized this was my time to ensure that I did what I had to do to heal, recover, and finally be the best mom and wife I could be.”

The experience impacted Kimberly and her family in the most positive way. Her husband and daughters rose to the occasion day after day to offer love and support and saw Kimberly as their hero. She was discharged from the hospital after getting her ostomy on Mother’s Day and her daughters made her signs and gave her flowers.

“All the while, it was me who had to accept that living with an ostomy is something to be proud of. At first, mentally, it was a hard pill to swallow, but after awhile I realized that my ostomy bag saved my life; I will be forever thankful!”

Pregnancy after a Proctocolectomy

Kayla Lewis was diagnosed with Crohn’s disease at age 10. When she was 24, Katie had surgery and received her ileostomy. She says that’s the first-time fertility and her future as a mother crossed her mind. Then, in 2017 she became incredibly sick. She tried what she thought was a temporary ostomy for six months. Then in a follow up scope her GI perforated her bowel.

“When I woke up, I was informed that my entire colon was scar tissue so much that the camera could barely go into the bowel before perforating it. At that point, I was told my options were to leave the colon and rectum or schedule to have both removed, but either way, the ostomy was suddenly permanent. I did not want to resort to that initial surgery till I knew I had exercised all other options available to me including meds, treatments, and diet. Being that surgery was my only hope at gaining life back, I never fully questioned how it would affect my fertility. I did briefly ask the surgeon if I can still have kids one day. He responded with a simple ‘yes’ and I left it at that.”

Even though Kayla says she still would have continued with her proctocolectomy regardless, she wishes she would have thought to ask more questions. Thanks to her ostomy, Kayla has been in remission for 5 years. She felt like family planning could be on her own terms.

“Being 12 weeks pregnant with an ostomy has been much smoother than I had envisioned for myself. I work as a nurse in an operating room, so feeling nauseous and vomiting was my biggest concern early on. I have a small body frame, so maybe once the bump starts to show, I will experience stoma changes. Hopefully, nothing more than just cutting the wafer a bit smaller or larger.”

Currently, Kayla takes Imuran and Allopurinol daily and injects Stelara every 8 weeks. She also takes a prenatal vitamin.

“I was always told that when the time comes for me to become a mom, it would have to be via c-section and not vaginally. I knew this well before my ostomy, because I was warned how difficult it could be for me to heal from tearing as well as could trigger a flare. After my proctocolectomy, I knew without a doubt, I would need to schedule a c-section to play it safe.”

Lori Plung was diagnosed with Crohn’s Colitis in 1980. She was 16 years old. Two years after her diagnosis her disease became severe. As she reflects, she remembers being very worried about ever being healthy enough to be a mom.

“My mom was told by my GI at the time that he didn’t have a good feeling about me being able to have children. This was not shared with me at the time, and this was well before surgery was mentioned to us.”

In 1988, Lori had a proctocolectomy. She remembers lying in the hospital bed before her surgery and a local IBD mom and her toddler coming to visit and show her all that’s possible with an ostomy.

“I believe what was missing, was a conversation with my doctors about how my anatomy would change after surgery and the possibility of scar tissue building up near my ovaries, fallopian tubes, and uterus. Therefore, making it harder to conceive. When it was time for us to try for a family, we couldn’t conceive on our own. In the back of my mind, I knew my insides were shifted around and I had a strong suspicion that mechanically things were not working correctly. We tried for about 6 months and started investigating fertility options. We didn’t wait the full year as often recommended because I was feeling well —and as we know with IBD, when the disease is under control, It’s the optimal time to be pregnant.”

Lori went through many fertility treatments and said no one blamed her proctocolectomy as the culprit. She ended up having scar tissue on one of her fallopian tubes. She got pregnant with her first child through IUI (Intrauterine insemination) and her second through IVF.

She remembers telling her husband she didn’t want their kids to have memories of growing up with a “sick mom.” She had three more IBD-related surgeries, numerous hospital stays, and says her energy was drained, but she prided herself on her inner strength and determination to always push through no matter what.

Lori says if she could talk to her former self, she would tell herself not to feel guilty about needing to stay home and do quiet activities because she was having a hard Crohn’s day.

“Not to be hard on myself when we sat and watched Barney (my daughter Dani’s favorite) or Teletubbies (my son Jesse’s favorite) because I was too exhausted to move. Not to feel guilty when everything fell on my husband, especially through each surgery and recovery. It’s ok to ask for help and not feel guilty.”

Lori’s kids are now 23 and 26. She still can’t believe she’s been able to be a mom and be there every step of the way as her kids thrived through each stage and season of life.

Advice for fellow ostomates about pregnancy

  • If you have an ostomy, you can have a baby. Don’t let your ostomy hold you back. Work with your care team to know when the right time is and if there would be any issues with getting pregnant.
  • The body has a way of coping no matter what. Your past trauma prepares you to handle the unknown and celebrate every win—big or small, along the way.
  • Keep the faith. You may run into roadblocks but exhaust all options before you throw in the towel. Miracles happen every day, stay hopeful.
  • Find a care team well-versed on IBD. A medical team who understands your complexities and who is supportive will make your experience with pregnancy and an ostomy a positive one. Have all hands-on deck and connect with your IBD team, surgeon, ostomy nurse, and Maternal Fetal Medicine (MFM) group. It will give you a sense of security as you embark on this wonderful and exciting adventure. Your ostomy nurse will be a huge resource—as your belly grows, so will your stoma.
  • Be mindful of ultrasound gel. Be prepared at OB-GYN and MFM appointments by bringing extra bags and wafers. Try and make sure your ostomy is empty prior to ultrasounds and then fold it up or hold it up to keep it out of the way. Ultrasound gel can make the adhesive come off. Many of the IBD moms I spoke to said they change their bag after every ultrasound to make sure all the gel is off their stomachs, so the new bag can stick on properly.
  • Stoma size and output. Don’t be alarmed if the size of your stoma changes as your baby bump grows. Stomas go back to their pre-pregnancy size after babies are born. For some, output can get thicker, and you can have more gas, but that’s likely due to being able to tolerate more fruits and veggies. As your belly grows, your bag may dangle rather than being tucked away and become a bit uncomfortable.
  • Remember everyone’s journey is unique. While each of these amazing women are sharing positive pregnancy experiences, don’t forget all the roadblocks, flares, and health issues they had to overcome to get to this point.
  • Ostomies gave you life and enable you to bring life into this world. For many IBD moms it’s surreal to experience your body go from attacking itself to nurturing and creating a life. Pregnancy provides a renewed love and appreciation for all that our bodies are capable of, despite our IBD.
  • Connect with other ostomates over social media and through support groups. Don’t hesitate to reach out to women who are living your same reality on social media. We’re all a family. Peer to peer support is amazing, reach out to fellow IBD moms. Here are the Instagram handles for the women featured in this article. Give them a follow!
    • Krista Deveau–@my.gut.instinct
    • Katie Cuozzo–@kati_cuoz
    • Katie Nichol–@bagtolife_
    • Kimberly Hooks–@kimberlymhooks
    • Kayla Lewis–@kaylallewis_
    • Lori Plung–@loriplung

Holiday Reflections: Thoughts from an IBD mom as we bid farewell to 2021

Tis the season for reflecting on the year past and all we’ve experienced and endured—both the beautiful moments, the hardships, and even the mundane. As an IBD mom, 2021 was a big year for my family. We moved to our forever home in June when I was 35 weeks pregnant with our third child and welcomed Connor to our family in July. While there aren’t many milestones more amazing in life, they also come with their fair share of stress. I don’t know about you, but stress often triggers my Crohn’s. It goes without saying the holiday season alone can be complicated to navigate with chronic illness, especially in the middle of an ongoing pandemic.

My best advice—listen to your body. If you feel like you’re being stretched thin and your symptoms are trying to speak to you, take time to listen. While chronic illness is always inconvenient when it’s flaring, ignoring an issue that is presenting only delays the inevitable and could set you up for an even bigger setback. I hope this week between Christmas and the New Year that you take time for YOU. Breathe. Relax. Reset. It’s something I struggle with and hope to improve on in 2022, so I’m right there with you!

COVID Every Where You Turn

I don’t know about you, but the pandemic has been creeping closer to my doorstep with each day that passes. Close friends had Christmas plans canceled. IBD friends near and far are sick with COVID right now. My family on both sides have dealt with being exposed, also re-shaping how our holidays ended up this year. I hosted Christmas for the first time in my life! Only 10 people (including my fam of 5), but hey, you gotta start somewhere! And moving forward, I think I’m going to host the holiday from now on!

On a serious note, these are troubling times. Almost two years in and it feels like we’re in a dark, never-ending tunnel, with no light. But, just like life with IBD, try not to allow the looming darkness to dull the beauty that still resides around you. I found myself crying happy tears many times on Christmas day. Despite the ongoing burden and hardship of the pandemic, I felt incredible amounts of gratitude for my family and getting to be a mom to three children. Seeing Christmas through their eyes was beyond magical and feeling well the entire day was the cherry on top.

As much as we’re all “over” the pandemic, it’s not a time to throw caution to the wind as we gear up for 2022. Stay vigilant. Use your voice. Speak up if you’re not comfortable, rather than being a people-pleaser. Set boundaries and don’t feel like you need to explain yourself to anyone. Think about the risk vs. the benefits, just as you do when making decisions about your body with IBD. Have ongoing dialogue with your care team and the doctors who treat you rather than from acquaintances on social media who have no medical background whatsoever.

Spread Holiday Cheer, Not COVID

I’ll leave you with my family’s Christmas card and a thank you for following our journey, offering support, love, and prayers along the way. The IBD family is so special to me. I honestly don’t know how I went the first 10 years of my disease without connecting with our community. Since I started sharing my story and opening myself up for support, taking on Crohn’s feels a lot less overwhelming. You inspire me to write, to share, to collaborate, and to do all I can to make a difference. Once you’re a journalist, you’re always a journalist…and I find it so rewarding to be a trusted resource in our community for insight about diagnosis to career, to finding love, having babies, being a mom, you name it. Thank you for listening and for reading. Excited to see what 2022 has in store!

IBD Motherhood Unplugged: Scopes, Scans, and Breastfeeding

The date for my next scheduled colonoscopy is on my calendar. Even though my scope is one month away, I’ve already started the mental prep of what’s to come. When you’ve had too many colonoscopies to count you know what to expect…which is both a blessing and a curse. This time around I’m exclusively breastfeeding my 3-month-old son. So, like any IBD mom may wonder, how does that correlate when you’re taking prep that cleans out your system and are put out for the procedure?

I checked in with Dr. Aline Charabaty, Assistant Clinical Director of the Division of Gastroenterology at Johns Hopkins School of Medicine, and Clinical Director of the Inflammatory Bowel Disease Center at Johns Hopkins-Sibley Memorial Hospital, as well as my own gastroenterologist (GI) so I knew what to expect and so I could pass along the information to you.

Juggling Kids and Prep

I’m already anticipating the hustle and bustle that I’ll be dealing with as I guzzle down the disgusting concoctions with my 4-year-old and 2-year-old running around as I care for our newest addition. Luckily, my mom flies in for every single colonoscopy (even before I had kids!) to offer emotional and physical support. Now, she gives me a hand with my kids, and this allows my husband, Bobby, to take me to the procedure and celebrate with me after it’s over. Highly recommend you line up childcare when prepping for a colonoscopy so you can focus on yourself and not deal with the stress of mom life on top of it.

Snuggling with my son, Reid, while I did my prep in 2019.

Dr. Charabaty understands what a challenge this can be and has fantastic advice for IBD moms on prep and procedure days:

  • Tell yourself you are doing the right thing taking care of your health, to stay well for you and for your kids.
  • Explain to the kids why mommy is a bit tired today, why she is not sharing their food and why she is going to the bathroom a lot.
  • Enlist help!! Have someone you trust, and who the kids know well, to keep them company and look after them while you are prepping the day before and on the day of the procedure. You need a responsible adult who is fully awake and alert to be with the kids and keep them safe during these days.
  • If your child is old enough to understand, have them play an active and fun role in this prep, for example reminding you to drink fluid during the day from a special cup they chose for you.
  • Hug your children often in between trips to the bathroom, to keep you going.
  • Give yourself plenty of rest after the procedure so you can be fully present to your children the next day.
  • Skip co-sleeping the first night after the procedure, as you might not wake up as usual in the night.

In the days leading up to my scope, I put myself on a self-imposed liquid diet 3-4 days ahead of time to ease the prep. It’s hard enough when I’m not trying to nourish a little person, along with myself. Anyone who has breastfed a child knows how hungry it can make you. My GI told me that despite only having liquids I would not need to supplement with formula. At the same time, she suggested I drink Ensure Clear Protein, which will not affect the prep and will help it. To combat dehydration, she reminded me to drink plenty of water up until two hours before the procedure.

“Breastfeeding women lose an average of 25 ounces of fluid a day through their milk. During the colonoscopy prep, make sure you drink plenty of fluid to keep the prep going and the milk flowing! Consider breastfeeding or pumping just before leaving for the procedure and as soon as you are recover and are awake after the procedure, to minimize discomfort of full breasts and minimize disruption in the usual breastfeeding/pumping schedule and optimize the volume of milk recovered,” explained Dr. Charabaty.

If nursing gets to be too much while I’m in the thick of my prep, I plan to tap into my freezer supply of milk so that my mom or husband can feed the baby while I’m holed up in the bathroom. By being proactive and thinking of these moments ahead of time, it’s one less thing to worry about and stress over.

Is Pump and Dumping Necessary?

Since we all know what colonoscopy prep makes us do, my initial thought was that I would need to pump and dump so my son wasn’t pooping up a storm along with me. I envisioned myself on the toilet with my pump nearby…talk about a living hell! Luckily, my GI said there’s no need to pump and dump with the prep or with the procedure since my care team uses Propofol and Dr. Charabaty agrees.

“Preps like Miralax, Golytely, Moviprep, Fleet phosphosoda, and Dulcolax, are not absorbed from the gut and do not enter the breastmilk; so, no need to pump and dump with preps, save every drop of this precious liquid! There are older recommendations to pump and dump the milk 4 hours after receiving anesthesia; however, review of the data show that most drugs used for anesthesia (midazolam, fentanyl, propofol, ketamine) do not cross into the breastmilk or if they do, the concentration for the drug in the breast milk is too low to affect the baby.”

Click here to lead the latest recommendations from the Association of Anesthetists that supports this guidance.

What about prep for MRE’s and CT scans?

“Radiological contrast agents used in CT and MRI are safe during breastfeeding, but be cautious with Technetium containing contrast that is used for nuclear medicine procedures. Some recommend pumping and dumping for 12 hours; other recommend pumping for 72 hours. Store the milk and only give it to the baby after it has been stored for 72 hours.”

The bottom line

“You can continue to breastfeed baby as usual following the colonoscopy (or endoscopy), as soon as you have recovered from anesthesia, and you are awake enough to hold the baby! Talk to the anesthesiologist before and after the procedure for advice, in case different or unusual medications were needed during the procedure. If you feel tired or sleepy, let someone else handle the feeding. Kudos for taking care of both your GI health and baby’s health!”

As an IBD mom having this intel is extremely comforting and puts my mind and heart at ease as I prepare for another colonoscopy, this time with another little one in tow.

IBD Motherhood Unplugged: Fully Vaccinated and Pregnant with COVID

It’s safe to say IBD mom, Amanda Pennewell, is grateful she’s days away from welcoming baby number four into the world. Despite being fully vaccinated, she came down with COVID when she was 34 weeks pregnant. Amanda was diagnosed with Crohn’s disease 20 years ago when she was only 8 years old.

Amanda is no stranger to being on a biologic during pregnancy. She was on Humira with her twins and over the course of the last two years she was on Stelara with her second pregnancy and her current one. It’s one thing to be an immunocompromised pregnant woman, I can attest from personal experience, it’s extremely worrisome when living through a pandemic and worrying about your IBD and the possibility of COVID turning your life and that of your unborn child upside down.

Coming Down with COVID

One second Amanda’s oldest daughter, Brooklyn, was at a friend’s birthday party being her energetic, sweet, self and when they arrived home, she laid down on the couch and said she was freezing. Brooklyn had a low-grade fever. A few days prior her 17-month-old, Caroline, also had a fever.

“I didn’t think anything of it until a friend from school called to tell me her son tested positive for COVID after being seen for a low-grade fever that lasted six hours or so. My husband went to get some at home rapid tests from Walgreens. It was late, and I was supposed to have him help me with my Stelara injection that night. I figured I needed to wait until I could contact my GI doctor to inject if it was positive. It was.”

Amanda was in a state of shock. Her and her husband had both been fully vaccinated for months. At the same time, given the nature of mom life, once her daughter tested positive, she felt it was inevitable she would, too.

Navigating a biologic, pregnancy, and COVID

When Amanda’s GI heard she had COVID, she recommended she delay her Stelara injection for the time being to see how she did during the quarantine period. Amanda’s initial symptoms were a sore throat and a headache.

“I kept in touch daily with my GI doctor and her nurse via phone and email. They were very worried about me—especially because I was about 34 weeks pregnant. I ended up waiting two weeks after my daughter and I tested positive before I did my Stelara injection. I had been symptom-free for a week at that point, and they knew I would be okay to inject then.”

Along with herself and her daughter, Amanda’s husband and dad also tested positive. But Amanda says out of everyone in their inner circle, she felt the worst.

“My symptom list continued to grow each day. The first day the sore throat and headache were my only symptoms. I then developed a cough and muscle soreness and pain. I took about four-six baths/showers each day and took Tylenol to remain functional. I had extreme fatigue and ordered a pulse oximeter to monitor my oxygen level. I had a low-grade fever. I also lost my smell and started to lose my taste. My OB doctor had called me and said I was eligible for a monoclonal antibody infusion, and they would recommend it for me since I also have Crohn’s disease.”

Amanda took a few days to think it over and discussed the infusion with her GI, who recommended she receive it as well. After getting the 30-minute antibody infusion, Amanda felt worse. Her fever spiked and she was shaking. Luckily, by the evening she turned the corner and started feeling significantly better.

Advice for Fellow IBD Moms

COVID caused Amanda to miss one of her high-risk ultrasounds, but she was able to get a scan at 36 weeks. She’s grateful baby girl is looking great and measuring right on target despite all she’s been through during this pregnancy.

“My advice to fellow pregnant IBD moms would be to stay in close contact with all of your doctors, even if you think they can’t help you. I normally just try to keep my primary and my GI doctor informed when I’m sick with something, but since I had to cancel my OB appointment, they knew I was exposed and then knew, I was positive. They were the ones able to set up the infusion for me. Had I not called, I wouldn’t have known about the infusion and that it was available for me. I don’t want to think about what could’ve happened if I hadn’t had that option.”

Amanda is hopeful her daughter will come into the world with solid antibodies given that she was pregnant with her when she received her second Pfizer vaccine, plus the fact she had COVID and received the monoclonal antibody infusion.

Connect with Amanda on Instagram: @thepennegram

IBD Motherhood Unplugged: Breastfeeding and the COVID-19 vaccine

After a lot of thought and consideration, I decided to hold off on getting my COVID-19 vaccines until after I delivered my son. Before we dig deeper into this topic, I want to clarify that this was solely my choice, everyone needs to do what they are most comfortable with. Since the pandemic began, unprecedented pressure and stress has been placed on pregnant and lactating women to make one decision or another. For me, as a stay-at-home mom, who continued to keep a low profile while pregnant, I felt more at ease waiting to get my vaccines until after my son was out of my body. My care team made up of a maternal fetal medicine doctor, OB, and gastroenterologist all supported my choice to wait.

My main reasoning was limiting the variables of exposure. All my kids were exposed to Humira while in utero. While there are long term studies that show the safety and efficacy of biologics in pregnancy, you never know. If down the road my son had any health complications or issues, I didn’t want to have to grapple with whether my biologic or a vaccine contributed or were to blame. As an IBD mom, we deal with enough guilt as it is.

So, I chose to wait. Anxiously. Patiently. Luckily, I delivered my third child, Connor Christopher, July 14th, and did not encounter any COVID-19 scares while pregnant. Once I was home from the hospital following my C-section, I talked with my gastroenterologist and OB about getting my first COVID vaccine and scheduled an appointment at Walgreens ASAP.

Getting the first jab

Wednesday, July 21, I finally got my first dose! A little late to the party, but I’m currently exclusively breastfeeding (and pumping), and I’m hopeful that once I’m fully vaccinated (two weeks after my second dose in August), my son will receive antibodies from the vaccine that way. It felt a bit surreal to finally be at a point where I felt comfortable with my personal choice to get the vaccine.

According to the CDC, since January 2020, there have been 34 million cases and 607,000 deaths. As of July 21st, 161.9 million people are fully vaccinated—that’s 48.8% of the total population, or 57.1% of the population older than age 12. Virus variants threaten new outbreaks among the unvaccinated.

Much like making decisions to manage IBD, it’s imperative our community looks at the benefits vs. the risks of getting the vaccine.

Words from leading medical experts in the IBD community

This past week Dr. David Rubin, MD, Professor of Medicine, University of Chicago presented, “Updates on COVID-19 for Patients with Inflammatory Bowel Disease”.

“Everyone needs to be vaccinated, this includes pregnant women and new moms. The Delta Variant is VERY contagious. The data in IBD is reassuring when it comes to immune responsiveness compared to the general population, especially with the two dose mRNA vaccines. Antibodies against many things are transmitted in colostrum, and that may be the anti-SARS-CoV-2 spike antibodies too, which may provide protection to the baby. It’s definitely NOT dangerous to breastfeed after vaccination.”

Speaking of the Delta Variant, according to Dr. Rubin’s presentation as well as guidance from the CDC, “Delta was 1% of COVID-19 cases during the week of April 10th. By the week of July 3rd, Delta is estimated to account for 57% of new COVID-19 cases. Within a matter of 12 weeks of being introduced to the US population, it became the dominant variant here.

Dr. Uma Mahadevan, MD, University of California San Francisco agrees, saying given the ongoing crisis with COVID-19, all eligible people should get vaccinated.

“Breastfeeding mothers can get vaccinated per CDC guidelines and there is data that the antibody from the vaccine crosses to the infant via breastmilk, possibly providing them with protection as well! For many infants of moms with IBD, they have detectable levels of biologic agents in their blood for the first 6 months of life. Having antibody against SARS-Co-V-2 may provide them some protection against getting ill if exposed to the virus.”

Dr. Meenakshi Bewtra, MD, MPH, PhD, Penn Medicine, has IBD herself and has been a vocal advocate for our patient community since the start of the pandemic. She implores everyone to get the vaccine, immediately.

“Don’t wait. In fact, I, every doctor I know, American College of Gastroenterology, and Maternal Fetal Medicine recommend getting the COVID-19 vaccine while you are pregnant. Why? Because we’ve seen what happens to pregnant women who get COVID. There are women who got the vaccine in trials; there were women who got vaccinated while pregnant (>10,000 at this point)—we have a lot of data. The evidence is crystal clear. The same holds for getting it while breastfeeding. COVID is real, it’s out there; you can get sick and die; you can transit it to your infant or others in your house. There is absolutely no reason why anyone should not be getting vaccinated unless you know you have an allergy to something in the vaccines themselves. Your protective antibodies can pass to the infant.”

COVID-19 in the IBD Community and Vaccine Response

Thanks to the SECURE-IBD database, we have more guidance about how those of us with Crohn’s and ulcerative colitis have responded and continue to respond to not only COVID, but the vaccine. People with IBD do not have an increased risk of getting it. Aminosalicylates, biologics, and immunomodulators show no increased risk of severe COVID- 19. Steroids are associated with worse outcomes. And biologic therapy is associated with decreased risk of severe COVID-19 outcomes.

One of the main concerns many of us in the chronic illness community on immunosuppressive drugs have wondered about is the efficacy of the vaccines in our body. Good news—a recent study of 246 patients with IBD who received both doses of the vaccine showed similar adverse events as in the general population. Sore arm, headache, and fatigue are the most common adverse effects of the vaccine. All I had after my first Pfizer vaccine was a sore arm. More importantly, the study showed no increase in IBD flares.

The Prevent-COVID study shows even more promising data with more than 1,700 participants with IBD. Click here to see results of the study—everything from rates of vaccine side effects to lab titers three months out.

As of now, there’s no recommendation or approval regarding a booster vaccine. Pfizer announced that their clinical trial data showed that a third shot may increase antibody levels, but nothing has been published yet. Without more research, it’s unclear if an increase in antibody levels will provide greater protection from the virus than two doses.

Get Involved in COVID-19 Vaccine studies

University of Chicago Inflammatory Bowel Disease Center COVID-19 Vaccine in IBD Study

  • This study is analyzing the durability, safety, and efficacy of COVID-19 vaccines in patients with IBD, If you are interested in participating in the study (whether you have already been vaccinated or not) please email: covidvaccine.ibd@lists.uchicago.edu.

Prevent COVID Research Study

  • If you are 12 to 17 and have received your first COVID-19 vaccine in the last 90 days, you may be able to take part in PREVENT COVID, a research study to learn about the vaccine experiences of people with IBD. Click here to learn more.

CORALE-Vaccine IBD

  • The purpose of this research being conducted at Cedars-Sinai is to understand the effects of vaccination against COVID-19 in people with IBD. To achieve this goal, a national and local group of adults with IBD who are eligible to receive any available vaccine against COVID-19 are being recruited. Within this group we will evaluate the antibody levels of the body’s response to the vaccine. Questions about the study? Contact the CORALE-V IBD Research Team at Cedars-Sinai at ibdresearch@cshs.org or call 310-423-5643.

Washington University in St. Louis: COVID-19 Vaccine Response in Patients with Autoimmune Disease

  • School of Medicine researchers are leading a clinical trial to evaluate the safety and effectiveness of COVID-19 vaccines in people taking immunosuppressive drugs. Such drugs are prescribed to treat autoimmune diseases, including arthritis, Crohn’s disease, and psoriasis. Researchers will enroll up to 500 adults ages 18 and older in the St. Louis region. They are recruiting health-care workers at the School of Medicine and patients seen in Washington University outpatient clinics. Eligible patients who have preregistered for the COVID-19 vaccine will be contacted to assess their interest in being recruited into the study. For information about participating in the trial, email covaripad@wustl.edu, or contact either Alia El-Qunni at 314-249-1151 or Lily McMorrow at 314-280-3894.

V-Safe

  • Use your smartphone to tell the CDC about any side effects after getting the COVID-19 vaccine. The tool uses text messaging and web surveys to provide personalized health check-ins after you receive a COVID-19 vaccine. Depending on your responses, someone from the CDC may call to check on you. Participation is voluntary and you can opt out at any time. Sign up at: www.vsafe.cdc.gov.

Additional information for your consideration:

Coronavirus disease 2019 vaccine response in pregnant and lactating women: A cohort study

CDC: COVID-19 Vaccine While Pregnant or Breastfeeding

Parents Magazine: The COVID Vaccine and Breastfeeding: What Nursing Moms Need to Know

University of California San Francisco: No Sign of COVID-19 Vaccine in Breastmilk

Study Finds COVID-19 Vaccines Safe for IBD Patients

IBD Motherhood Unplugged: The new addition to my hospital bag for delivery

Let’s face it, when you live with IBD, packing for a hospital stay isn’t anything new. We know what we need and what we won’t. We know the necessities and even with a C-section recovery, it’s nice to have a positive and happy reason to be going to the hospital. But this time around, my hospital bag for delivering my son this week has an addition. Since I’m participating in the Pregnancy in Inflammatory Bowel Disease and Neonatal Outcomes (PIANO) study, my son and I will be getting our blood drawn the day he’s born and cord blood will also be taken. 

The blood sample kit includes an ice pack and vials that are labeled “Mom”, “Cord”, and “Baby”. This will measure the level of biologic drug in our bodies…and the coolest part is, I’ll get to know the results, while also contributing to research for current and future IBD moms on biologics. I can’t wait to find out how much Humira is found in our blood samples. The most ironic part of all? My scheduled C-section just happened to land on the same day as my loading dose anniversary of Humira… 13 years ago! Little did I know when I was injecting myself for the first time how my life would evolve to what it is today.

Background on the PIANO study

PIANO is an observational, multicenter study launched in January 2007 with the main focus to look at whether there is an increased risk for worsened maternal and fetal outcomes when a woman takes a biologic or thiopurine (a type of immunomodulator) therapy during pregnancy. Prior to this, lack of safety data has led many women to discontinue their therapy during pregnancy, which can lead to health repercussions to both mother and child.

On delivery day, it will be a team effort. My OBGYN and the nurses will ensure everything is taken care of and then one of my family members will make a stop at FedEx (within 3 days) to ensure our blood samples make their way safely from Missouri to California.

What else is packed in my bag?

This c-section will be my fourth abdominal surgery in less than 6 years, all on the same incision. Knowing what to pack so I can heal and be comfortable is almost second nature at this point.

  • Comfy nightgowns with buttons so I can easily breastfeed and keep my incision waistband-free
  • Two robes
  • Nursing bras
  • Cozy socks
  • Frida Mom Boy Short Disposable Postpartum underwear (not a fan of those mesh panties from the hospital!), I’ve also heard Depends are great!
  • Slip on shoes/flip flops (for the shower and walking the halls)
  • 5 masks (planning to be admitted 4 nights, 5 days) and hand sanitizer
  • Nipple cream (I prefer the Motherlove brand)
  • High-waisted joggers and a nursing top
  • Summer dress for the drive home
  • Phone charger
  • Non-perishable snacks
  • Toiletries
  • Outfits and swaddles for baby boy
  • Newborn pacifiers

The results from the blood draws are expected about a month after delivery. I’ll be sure to share an update on my Instagram page (@natalieannhayden). Interested in enrolling in the PIANO study? Please call 415-885-3734 or email PIANO@ucsf.edu.