Tag: motherhood and IBD

Tips for easing self-injections for pediatric patients

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Managing a chronic health condition often means receiving medication through an infusion or a self-injection. If the thought of getting or even giving a shot brings on tears and fears, you are not alone. It’s no surprise, two-thirds of children and one-fourth of adults have apprehension and anxiety around needles. So, what do you do when your child needs to take self-injections to manage their IBD? It’s a complicated and emotional process for everyone involved.

This week on Lights, Camera, Crohn’s we hear from a certified Child Life Specialist, a former pediatric patient who experienced self-injections, and two mothers whose children were diagnosed with IBD at a young age.

Phylicia Petit is a Certified Child Life Specialist at a Children’s Hospital in Minneapolis, Minnesota. She says being truthful with your child about the self-injection helps to build trust.

“Prepare your child for what they may experience in an age-appropriate manner. Use soft language. For instance, instead of saying “don’t move,” say “hold still.” Avoid phrases like “you’re almost done” and “it’ll just take 3 seconds”. Instead, praise your child for what was done well. Say, “you did a great job holding your arm still” or “thank you for telling me how you felt during that.”

Phylicia also says if you are calm and relaxed, your child will be calmer and more relaxed.

“Children often feed off their parent’s emotions. Use gentle and helpful words such as, “do the best work that you can do,” “you did it!” and “your job was to hold still like a statue, and you did that so well.”

Setting a routine

By giving the injections at the same time of day and in the same place, children cope best when they know what to expect. Children’s bedrooms are a place of comfort, so use a different space.

Phylicia says that by offering choices, it gives your child a sense of control. You can achieve this by saying “do you want the injection in your right leg or left leg?” and “do you want me to count to three?”

Reduce the pain

No matter your age, most people don’t enjoy needles. You can help reduce the pain for your child by using numbing cream. Contact your local pharmacist or GI to discuss topical anesthetics.

Buzzy uses vibration and ice to distract the brain from feeling pain.

Shot Blocker uses several blunt contact points to saturate the sensory signals around an injectionsite to distract from pain signals

“Don’t forget, you are a comfort to your child. Comfort positioning can be used by parents and caregivers during injections to reduce stress and anxiety in your child and help safely immobilize an arm or leg,” said Phylicia.

Comfort and distraction items:

  • Pacifier
  • Blanket/stuffed animal
  • Favorite TV show
  • Blowing bubbles
  • Squeezing a squish ball

Have your child sit up. Children are often more scared when they are lying flat. If you need help holding your child still, try holding them in your lap in a firm, but comforting position.

Practice deep breathing. Take a big breath through your nose, then blow out through your mouth. Have your child do this 3 to 5 times. To make this more visual for a little one, you can use a paper flower, pinwheel, or bubbles, and practice this before, during, and after the shot.

“As a former pediatric patient there were a couple of things that helped. Finding ways to numb the spot prior, whether it was ice or a numbing cream. Using a room, I could distract myself in (typically with a TV). If I was able to do it myself, I would set up the space, so I was comfortable. If my mom helped this still applied, but we talked through the entire injection to occupy my mind. It came down to comfort and finding ways to manage my anxiety around the shot. Over the years, it got easier, especially when we switched from the auto-injector to the manual shot,” said Natasha.

Stacy Dylan’s son was diagnosed with Crohn’s when he was only 2 years old. She co-founded the nonprofit Connecting to Cure Crohn’s and Colitis to help families cope and conquer IBD.

Here are Stacy’s tips for caregivers when it comes to injections:

  • Acknowledge that as a mama this is going to be hard. “You are going to feel sad and wonder why you and your child have to go through this. It’s going to be hard to watch them have anxiety about the shot and to feel pain. Get support for yourself for this.” 
  • Try not to let your child see your pain. “Even though you are feeling this way, you know that giving them their meds is going to (hopefully, although it might take a few different meds to find the one that works) make them feel better and happy and more like themselves so approach your child with compassion and assurance about the potential of the meds to make them feel better.”
  • Try to have a calendar that shows when the shot is due but don’t talk about it too much if they are not bringing it up. “Remind them the day before or the morning of the shot and set a time to do it.”
  • There are practical things that may work to ease the pain of the shot. “Ice before and after. Rubbing the site after it goes in. Emla cream is a great numbing cream. My son is 22 and has been getting infusions, injections, and blood tests since he was 2 and numbing cream is our friend. We also used the Buzzy. It’s held on the skin before and after the shot and it stimulates the skin to reduce pain.”
  • Offer a reward. “At times I offered something post shot that motivated him when he was younger. Perhaps being able to watch a little more TV that day. Or a small new toy. Or a food treat that they can have, and it could be special for the shot day.”
  • Look into having a home nurse, if needed. “My son has been on so many of these meds since he was 7. When he was on Humira from age 9-10, it was before the citrate free (pain free) version and the Humira shot was very painful. It became too hard for me to do it and was too difficult for our relationship. It is rare that you can get insurance to cover a home nurse to do this, or to bring the child to get the GI office nurse to do it. We were able to pay a nurse to do his Humira shot for a brief period of time until he adjusted to it. It helped a lot.”

Cindy’s 12-year-old daughter was diagnosed with Crohn’s disease four years ago. She helps her daughter with weekly Humira injections and also offers helpful advice from a caregiver’s perspective about what it’s like to give your child an injection and cope with the difficult experience.

  • Don’t let your nerves show. “When I became responsible for giving the injections at home, I was nervous about doing it and it was important to me that I not transfer my own personal anxiety to my daughter. To this end, I really wanted to practice giving shots on anything other than her, so that when I had to inject her, I felt comfortable with what I was doing. Unfortunately, I only came upon the advice later, so it didn’t help me at the time…but I heard to use an already used syringe on a naval orange for practice.”
  • Do the injection in a neutral space. “A psychiatrist advised us to do injections in a neutral place. I had been giving my daughter her injections in bed because to me, this was the place where she was most comfortable. Unfortunately, she developed sleep problems, and our psychiatrist helped me understand that a negative association with the injection is not something that you want to combine with a happy place. In the summer, we inject it on our back porch and in the colder months we usually do it in our guest bedroom.”
  • Syringe instead of auto-injector. “We also find the syringe to be so much better than the pen. The pen made us feel tense and the lock was Pavlovian. The syringe allows for more control. No sounds. Go fast or go slow. My daughter takes a lot of comfort in her Buzzy.”
  • It gets easier. “Not better…but easier. For the first couple months, we had to physically restrain my daughter when injection day rolled around. It was soul shattering. However, we all did become used to what needed to happen and now (while not fun at all, it is a non-event). We do the injection now and move on with our day. We are thankful for the ease and convenience of injecting at home, and always thankful this medication is preserving my kid’s quality of life.”

PIANO 2.0: What women with IBD need to know about the latest pregnancy and postpartum research 

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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.

Click here to enroll in PIANO 2.0

Follow the latest on PIANO 2.0 on Twitter.

Check out the new website. 

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.

IBD Motherhood Unplugged: Being an Ostomate through pregnancy and beyond

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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

Mom, Model, and Ostomate: Seeing Life Through the Lens of IBD

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When she’s not on the runway during Fashion Week or gracing magazines, Keyla is doing all she can to be an advocate for IBD. She was diagnosed with ulcerative colitis eight years ago, but this year, she found out she has Crohn’s disease.

“As a child, I always had intense stomach aches, and difficulty going to the restroom. Sometimes I’d even pass out. Doctors always told me it was constipation. It wasn’t until I was at work one day and passed out that my boss convinced me that I needed additional medical attention.”

At that point, Keyla was having 8-10 bloody bowel movements a day. Prior to ulcerative colitis, she was diagnosed with celiac disease and went on a strict gluten free diet. But unfortunately, the symptoms persisted. She got a second opinion and that’s when she was diagnosed with IBD. Keyla recalls that in the beginning moments of her patient journey she struggled to grasp that chronic illness meant her disease was a “lifelong partner” and that IBD would change her life in unimaginable ways.

The journey to an ileostomy

Fast forward two years after her IBD diagnosis and Keyla rushed to the hospital after noticing unexplained bleeding. Turns out she was hemorrhaging from her uterus and was told she had uterine cancer.

“After having a partial hysterectomy and no longer being able to have children, I’m not sure if it was the stress from everything happening but my UC was never able to be controlled after that. From failed medications like Methotrexate and Remicade to looking like Quasimodo from eye swelling caused by Entyvio and having less hair than a toddler from being on Humira. My body and I had enough. My clinical team and I decided it was time to evict my colon.”

In September 2018, Keyla began her 2-phase j-pouch procedure. Unfortunately, the surgeon discovered her colon was much more diseased than he had thought. Keyla’s colon had become fused to her stomach, resulting in part of her stomach to be removed as well.

“For 2 months I felt amazing with my ostomy and was excited for my reversal in December 2018. But shortly after, I began developing chronic pouchitis, could not gain weight, required IV fluids regularly, with a failed midline and then needed a central line. We decided to disconnect my j-pouch and create my end ileostomy in September 2020.”

All was well until January 2021 when Keyla started bleeding from her ileostomy. It was at this point she was diagnosed with Crohn’s disease and started Stelara. After a few hospital stays and some improvement with her symptoms, she began to experience an increase in rectal pain, urgency, and discomfort, so Keyla needed yet another surgery.

October 27th (less than one month ago!) she had her j-pouch removed with a proctectomy and officially made her stoma permanent. She’s recovering from this surgery as we speak.

How Modeling Came into Play

After reading that challenging medical history, you may wonder how Keyla finds the time to focus on a profession. Modeling is something Keyla always wanted to do when she was younger, but she was too embarrassed to tell anyone. She sort of stumbled into it. Keyla had done a fun photoshoot with a friend and those photos were shown to another friend who works in the fashion industry. Before she knew it, Keyla was a published model!

“Sometimes I still can’t believe I’m living my dream despite having health issues. I had the honor to walk at London Fashion Week this year and have been published in magazines out of the US, UK, and Canada.”

SURREAL Lifestyle Magazine and 4 Seasons Magazine have been her favorite features thus far because the publications have allowed her to speak about her IBD advocacy work. Modeling serves as the perfect platform for spreading awareness to others about ostomies and life with Crohn’s. 

“I always try to take the time for myself and make sure I am doing the things my mental health needs to stay focused and feel well. I also try to own those feelings. If I’m symptomatic, I try to accept it and openly communicate my struggles with others.”

Keyla says having an ileostomy can make modeling a bit more complicated, especially if she has to wear form fitting or tight clothing. If that’s the case, she ends up having to empty her bag more times than she really needs to. She’s grateful her modeling gigs have followed strict COVID guidelines, which helps her feel more at ease during these uncertain times.

When a project allows, she especially enjoys getting to show her ostomy in photos or on the runway. She chalks that up as her biggest career win of all!

A model mother

Keyla’s main focus whether she’s modeling or fighting a flare in the hospital is her family. She has an 11-year-old son who inspires and motivates her to push through the difficult days.

“IBD has made motherhood challenging. Without chronic illness motherhood can be difficult as it is, adding health issues on top of it makes it more complicated. I constantly question whether I’m making the right choices. But I also tell myself all I can do is try and hope that I’m being a good role model for him.”

It pains her to see how her son gets anxious about her IBD and healthcare. He’s been by her side every step of the way since she was diagnosed after he was born. Despite the highs and lows, Keyla feels her son is stronger because of her illness and has an innate sense of empathy and understanding for others.

If her IBD has taught her anything it’s that good days give us happiness and bad days give us experience. Modeling has enabled Keyla to be comfortable in her own skin and live the life she imagined long before Crohn’s was ever a part of who she was.

Connect with Keyla:

Instagram: Keyla.ic

Twitter: @keyla.ic

IBD Motherhood Unplugged: My Personal PIANO Study Results

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As an IBD mom of three who stayed on my Humira (adalimumab) injections until late into my third trimester with all my pregnancies, I recognized the importance of contributing to ongoing research about the safety and efficacy of biologics. When I was approached to participate in the PIANO (Pregnancy Inflammatory bowel disease And Neonatal Outcomes) study for my pregnancy this past year I jumped at the opportunity. While I knew staying on my medication until 37 weeks pregnant would pass Humira through to my baby and that it is considered to be safe, I didn’t know much beyond that.

My son Connor is 8 weeks today. The day of my C-section blood samples were taken from him, me, and my umbilical cord. The purpose of the samples was to measure the concentration of the Humira at the time of delivery. The process in the hospital was simple. Detailed instructions were mailed to me at home ahead of time. When I walked into the hospital for my scheduled C-section my husband and I handed over a small box that included three vials, an ice pack, and proper packaging for the transfer from St. Louis to California to the nurse who was prepping me for surgery. Once all the samples were ready to go my husband made a quick stop at FedEx to hand over the package and voila the science of it all was on its way.

The Results

The past few weeks we’ve anxiously awaited the results. This week, we received them. I have an almost 4.5-year-old son, a 2.5-year-old daughter, and a newborn. With each pregnancy—Crohn’s-wise, the experience was flawless. I felt like a “normal” person. Foods that typically trigger me, didn’t cause any issues. If I wanted a cup of coffee, I didn’t pay the price. It felt glorious to have zero abdominal pain for all those months and know that my babies were thriving in utero. I credit my own health and deep remission and my children’s health to the fact that I chose to follow my care team’s recommendations and stay on Humira until the final weeks of my pregnancies.

When the results popped up in my email inbox, I was nursing Connor. I felt a few emotions, more than I had anticipated. I hesitated to open it. Even though I could see Reid and Sophia watching TV and know how healthy they are, it still made me feel a rush of mom guilt to know that I needed a heavy-duty medication to bring all three of my children into this world and that even though studies like PIANO have shown the safety profile, that as IBD moms we still worry and wish we didn’t need to do injections or get infusions while a life is growing inside of us.

I texted my husband Bobby while he was at work and expressed how I was feeling. His response, “It’s all good babe, I’m sure it’s emotional but kids are all healthy and in good shape so just thankful for that. You did good.” Having a supportive partner through your patient journey and especially through parenthood makes all the difference.

Here are my PIANO study findings. I stopped medication at 37 weeks, and my last injection was 16 days prior to C-Section and this blood test.

My blood—7.3 mcg/mL

Connor’s blood—6.8 mcg/mL

Cord blood—5.9 mcg/mL

When I saw the numbers, my eyes filled with tears. Even though just looking at the numbers didn’t mean a whole lot, it just showed me that my baby had medication in his system, and it made me feel sad. I knew this would be the case—but I want to be transparent that it did upset me, even though I know it was for the best and have seen how my other children have thrived despite their exposure.

I waited to share this so the PIANO study’s lead organizer, Dr. Uma Mahadevan could weigh in and provide further explanation for not only myself, but for our community. She told me that in the PIANO study,  the concentration of Humira for baby on average is 9.4 mcg/ml (range 2.5-26) and for moms 25 mcg/ml (range 0-56.4). As stated above, I was at 7.3 mcg/ml and Connor was 6.8 mcg/ml.

“Cord blood is the blood from the baby that is left in the umbilical cord and placenta after birth. It comes from the baby, so those concentrations are similar. Beginning around week 14 of pregnancy the placenta has a receptor called FcRn. This grabs antibody by the “Fc” portion and pulls it actively from mom to baby. This is most efficient in the third trimester when 80% of antibody transfer occurs. Since Humira is an antibody, it gets pulled across the placenta as well.”

Dr. Mahadevan went on to say that baby often has more drug at birth than the mom, but that was not the case for me. The PIANO study has shown several positive outcomes for IBD moms:

  • There is not an association between the amount of drug present in a baby at birth with infections.
  • Even though there was no increased risk of infection seen based on exposure to anti-TNF or on drug level at birth, in theory these babies (like Connor) are considered immunocompromised until no drug is present. For Humira that’s about 3 months, for Remicade (infliximab) that’s about six months.

“My advice to moms is that all the risks to the baby seem to come from disease flare rather than from medication. In a large French study, the risk of infection in baby was in moms who flared in the third trimester, not based on anti-TNF exposure. Risk of pre-term birth is increased with disease activity, not with anti-TNF medication. Risk of miscarriage comes with disease activity, not anti-TNF use. There is a clear and significant risk from having a flare during pregnancy. Compared to babies of IBD moms not exposed to medications, there is no evidence of increased harm to the baby (at least out to 4 years of age) from TNF exposure,” explained Dr. Mahadevan.

Hearing this was music to my ears and was extremely comforting. Point being—there’s a much greater likelihood of pregnancy complications if your IBD is not managed and if you flare than if you stay on your medication and keep your IBD controlled.

“We have completed our breastfeeding study which showed very minimal transfer (a fraction of what transfers by placental blood) and no evidence of harm to baby for breastfeeding when a mother is on anti-TNF.”

Knowing this about breastfeeding gives me great peace of mind as I continue the journey with my son, while still managing my Crohn’s by taking my Humira.

I also want to add that Dr. Mahadevan and her research team have been a huge support to me throughout the entire study. When she read a draft of this article and saw how I felt when I received the email with the blood results, she asked for recommendations about how to better deliver the findings to women. This meant a lot—I suggested sharing the range in blood concentration similar to how lab results are delivered on a patient portal and following up with an email or phone call to explain what the numbers mean further. Those touchpoints of support can make a big difference. I also shared my results over the patient portal with my GI and she called me to discuss them as well, which was helpful.

My three miracles. All healthy. All here safe and sound. Growing and thriving, despite exposure to biologics.

Interested in participating in the PIANO study? There’s always a need for more women to enroll! So far, 1,700 women have done so. There’s especially a need for women on newer drugs like Stelara, Entyvio, and Xeljanz. Click here to get involved.

From IBD patient to IBD mom: What I’ve learned

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I wish when I was diagnosed with Crohn’s in July 2005 that I would have had a look into the future to know that the same body that has gone to war with me time and time again would also bring three miracles into the world. 

Wednesday, July 14, 2021 my family grew to five and I became an IBD mom to three kids, four and under. Our latest addition, Connor Christopher, completes our crew.

On the day of my scheduled C-section and Connor’s birth, I felt overwhelmed with emotions. So many thoughts and feelings came to mind—from knowing I would never be pregnant again to recognizing that from this point forward I would never feel the deep remission I experience when I carry a life inside of me.

There are so many sharp contrasts in what pregnancy and deliveries have meant in comparison to life with Crohn’s. 

The unpredictable nature of Crohn’s but having three scheduled C-sections all go to plan. 

The way it feels to head to the hospital for a good reason.

The fact that my Crohn’s comes up as an aside when conversing with medical professionals and my pregnancies and being a mom comes first as my “identity.”

The perspective and strength IBD has given me when it comes to coping with painful pregnancy-related issues like SI Joint Dysfunction, Symphysis pubis dysfunction, acid reflux that required prescription medication, and C-section recoveries.

The incredible pride and joy I feel knowing that the girl who found out she had a debilitating lifelong disease 16 July’s ago, has carried three pregnancies to term and has a family of five to show for it.

If you’re like me and have dreamed of one day being a mom, explore all options to get there and don’t let your IBD hold you back. You are not less than because of your chronic illness, you are more capable than you think. Your body may surprise you in ways you could never imagine. To me–my children are proof of all that’s possible despite chronic illness.

When I was 21 and found out I had Crohn’s disease, one of my greatest fears was the uncertainty of what my future would look like personally and professionally. While the unknown was daunting and overwhelming, I never really allowed myself to think of not becoming a mom because of my disease. Instead, I shifted my focus to recognizing that getting there may take some detours and careful planning.

Thank you for all the well wishes for my family over the years. Your kind words, interest, and prayers, have meant the world to us and helped me to realize that even though I’m an “IBD” mom… I’m so much more.

IBD Motherhood Unplugged: Why My Son Will Flip the Script on July

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July has been my least favorite month for the last 16 years of my life. It’s the month I was diagnosed with Crohn’s disease. The month I had an abscess the size of a tennis ball in my small intestine. The month I was put on a biologic medication. The month I had a bowel obstruction that led to bowel resection surgery. You get the picture. But now, it’s about to be the month I give birth to my third child. Baby boy is about to flip the script on a month that previously brought dread. Instead, I can focus on celebrating his new life and all his birthdays and milestones for years to come.

Photo credit: Heather Roth Photography

As a woman with IBD, motherhood has continually provided me with reminders of all my body is capable of despite my chronic illness. It’s shown me what once may have seemed unattainable, is possible. Motherhood is a constant reminder that my body hasn’t always been at odds with me. That despite the challenges and the pain all these years, it still afforded me the opportunity to carry healthy babies to term. Rather than feeling like my body is the enemy, motherhood has made me think of my body as my ally. We’ll have our ups and downs forever, but for 27-plus months it’s been a safe haven for my children. I’ve enjoyed flawless pregnancies and deep remission. It’s given me a chance to feel like a “typical healthy” woman, if only for a moment. Pregnancy has felt like a security blanket wrapped around me, and is soon to be no more. With that, comes an immense amount of gratitude, as well as anxiety, as from this point forward it’s just me and my Crohn’s…no buffer.

It feels weird going into this month of July not worrying about what could be, but rather being excited about what’s to come. When I was younger and prior to getting married, I avoided making plans in the month of July—especially life changing ones! My wedding, vacations, etc. were all coordinated around this month because I didn’t trust the way my body could blindside me.

Preparing for the shift in health

While I am ready for my son to be here and over the discomforts of pregnancy, a part of me is sad that I’ll never feel this well again. Within days of delivering Reid and Sophia, the gnawing abdominal pain associated with IBD crept back into my life before I even had a chance to bring my babies home. I expect the same will happen this time. While it was discouraging then and will make me feel the same now, I’m hopeful the shift in hormones won’t throw me into a postpartum flare and that I’ll find comfort in knowing from this point forward, every medication, every procedure, and every hospitalization will be done without a life growing inside of me.

Over these last nine months I’ve enjoyed eating popcorn with my kids for the first time, drinking a cup of coffee without a need to use the bathroom right after, and nearly 40 weeks of baby flutters and kicks instead of pain. It’s been a great run. I hope my experiences through family planning, conception, pregnancy, and motherhood provide you with an understanding that IBD doesn’t mean you can’t have a family. While many sadly struggle with infertility, complications, or not physically being well enough to carry a baby, it’s very possible that you can. Whether it’s stories like mine or the opposite, remember each of our journeys is unique. Don’t base your experience and capabilities on someone else, but when something or someone inspires or empowers you to go after what you dream of, hold on to that.

Baby boy will not only complete our family but serve as a constant reminder of all that is possible. While my Crohn’s has brought a great deal of heartache it’s also allowed me to gain a unique perspective and to never take life’s miracles and triumphs for granted.

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

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

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

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

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

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

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

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

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

Diagnosed prior to a parent

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

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

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

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

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

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

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

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

History repeating itself

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

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

A heartfelt thank you

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

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

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

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

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

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

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

Someone who takes unpleasant moments in stride.

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

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

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

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

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

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

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

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

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

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

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

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

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