When something traumatic happens—like the mass shooting in Uvalde that left 19 children and two adults dead last week, the stress, sadness, and overwhelming grief can cause IBD to spiral out of control. You are not alone if the heavy nature of what’s happening in the world causes your mind to race and your GI symptoms to be amplified. As May (Maternal Mental Health month) comes to an end, a look at how we can best navigate these emotions and how our thoughts impact the gut-brain connection.
Looming threat of flares and violence
With the constant news cycle that bombards us, added into our reliance on social media, and seeing everyone’s opinions and posts, it’s the perfect storm for feeling suffocated by sadness. Life with IBD, whether you are in remission or not, is living with the looming thought of when your next flare or hospitalization is going to be. You know in your heart of hearts that it’s not a matter of if, but when your IBD is going to rear its ugly head. These days with violence happening left and right, it’s a challenge not to wonder and worry when you’re out in public if you’re going to be in the wrong place at the wrong time or if your children are in harm’s way.
The anxiety of worrying about the “what if” and the pain of grieving can often correlate to actual physical pain in our bodies that are already fighting an uphill battle. It’s difficult to try and make sense of what’s going on in the world. It’s impossible to try and wrap your brain around how people can be so evil. As a mom, I found myself crying putting each of my kids to sleep last week. Snuggling them a little longer. Worrying about their wellbeing and praying as hard as I could over them.
As a former news anchor and journalist, I vividly recall the moment the news of Sandy Hook broke. I was standing in the newsroom, about to head out to the studio to anchor the Midday show, when the heartbreaking news came over the newsfeed. It was incomprehensible then and it’s even worse now as a mom of three. I have only been able to watch the news in short snippets right now because I felt like the sadness of it all was consuming me in an unhealthy way. There’s a guilt that comes with trying to tune out the coverage and feeling like you’re not giving the reality of other peoples’ heartbreak the attention it deserves, while trying to protect your own mental state and heart.
Dr. Lindsay Hallett (Zimmerman), PsyD, is a clinical psychologist in Indiana. Here is her advice for coping:
Give yourself half the grace you give to others. This can make a significant difference in your overall well-being and stress level.
Reach out. If connection feels like what you truly need, enlist a friend or relative. The higher the level of personal connection, the better- seeing a friend is preferable to FaceTime, a phone call is preferable to texting, etc. But also, any connection is better than none.
Make time to move. Time is a premium to everyone and even 15 minutes will do. Listen to your body and give it what it needs – stretching, a walk, an intense workout, gardening… any kind of movement that respects your body’s own capabilities.
Give yourself permission to check out. If everything feels to be “too much,” avoidance can be healthy. Communicate healthy boundaries with others that you can’t talk about topic XYZ right now.
Seek therapy. Your emotional house doesn’t have to be “on fire” to benefit. Ask your primary care doctor, contact your insurance company, or research PsychologyToday.com to find a therapist. In-person with occasional virtual supplementation is best, but online therapy platforms can be helpful if you aren’t having luck otherwise.
Give yourself permission to unplug and stop doom scrolling. While there is no “right way” to cope with traumatic events like what happened in Uvalde and so many times before, give yourself permission to feel whatever complex emotions you are experiencing while also giving yourself space and time to take breaks and turns off screens. When you have IBD, being cognizant of what triggers you and recognizing how your symptoms speak to you, can allow you to stay one step ahead of the game in managing your illness. Focus on what’s tangible, what’s right in front of you, and what you are able to control.
This week I was feeding my 9-month-old a smoothie in his highchair before I had to run to grab my older two from preschool. I realized it was an injection day, so I figured I would do my shot while the baby was in the highchair to get it out of the way. It seemed like no big deal in the moment. But as I sat there and saw the baby food next to my Humira on the kitchen table I started thinking about how life as an IBD mom may feel normal to us, but what we do each day goes above and beyond.
Then my mind started wondering. I thought about how I had taken my oldest to his outdoor fieldtrip last week and refrained from having my morning coffee or eating breakfast so I could curb my Crohn’s from causing me problems. I thought about how my 3-year-old is so intuitive if she thinks I’m in pain, she grabs my belly and pretends to put the pain into her belly, telling me “I love you mama, take a breath.”
Take a breath. Boy oh boy do mothers in general need to stop and take that advice or what? Motherhood whether you have IBD or not is the most beautiful, exhausting, and rewarding challenge. No matter what season you are in it comes with triumphs and challenges it comes with happy tears and sad ones, too. It’s a constant game of trying to manage your emotions and tap into your patience, or whatever is left of it each day. We come to forget that we are also growing up in many ways, just as our kids do.
Motherhood and IBD is a balance of wanting to be all the things but knowing that at any given moment your body can throw your life and plans upside down. There are unspoken limitations.
It’s silently worrying and praying what will happen to your family if you go down and end up in the hospital.
It’s trying to stand tall when all you may want to do is rest on the couch.
It’s seeing your children thrive and feeling so much pride you constantly feel like you can cry tears of joy at any moment.
It’s getting scared when your little one randomly says their tummy hurts.
It’s knowing that your disease robbed you of a great deal—physically, mentally, emotionally, but it didn’t rob you of the greatest gift of all, being a mom.
It’s recognizing all that is still possible, even with this grueling disease.
It’s showing up each day, not only for yourself but for your family.
It’s taking the pain and feel-good days and focusing on one moment in time that feels slow but is going by in a flash.
Take a breath. You deserve it. We weren’t meant to mother alone. Lean on your village. Voice your struggles. Cry if you want to cry. But also, don’t put yourself to unattainable expectations. You have a chronic illness and you’re a mom. Don’t push yourself to the brink. Some days will be adventure-filled, others will be spent on the couch—and that’s OK. Your children are learning from you and gaining innate intuition, and that’s a gift. They’re witnessing that health is not something to be taken for granted. They’re watching you even when you think they are not. What may feel mundane to you, is not. As an IBD mom you are juggling countless extra balls in the air that healthy mothers don’t have to think about. Give yourself credit where credit is due and take a breath.
Moving away for school. A future career. Relationships. Discovering your identity. Switching from a pediatric IBD care team to adult providers. All while living with a chronic illness. This is the stark reality for young adults living with Crohn’s disease and ulcerative colitis. Juggling all these major life milestones and having to get acclimated to new physicians while taking the lead on disease management is often met with anxiety and worry from young patients, their parents, and caregivers. IBD is a family disease. Even if only one person in the household personally lives with the issue, the disease impacts each person.
This week on Lights, Camera, Crohn’s we hear from patients and caregivers who have lived through the experience and from pediatric GI’s about how best families can be supported through the changes to make them as seamless as possible for everyone involved.
Input from those who have made the switch
Aging out of pediatric doctors can be a stressful time for everyone involved. Let’s start with input from those with IBD who have made the switch along with what some parents and caregivers had to say.
Start researching doctors early. Do your homework and see what insurance providers accept and what hospitals they are affiliated with.
Ask your current pediatric doctors for recommendations/referrals.
Before the first visit make sure the adult GI has received copies of medical records.
Have healthcare proxy and power of attorney papers on file.
“I just turned 20, but I’m still in pediatrics and plan on staying until I graduate from college, as that is the norm at my hospital. However, as an adult in peds, I found it important to have healthcare proxy and power of attorney papers on file so my mom can still help me and if something were to happen like while I’m away at school she is able to get information. I broke my arm this past fall and my body went into such shock that I couldn’t give the hospital any information. My friends were with me and contacted my mom, but because I was 19, the hospital couldn’t even confirm to her that I was in the building. This was a wake-up call. We started thinking about, “what if this was my IBD?” and decided it was necessary to have the papers on file just in case. I still ask my mom to be involved in my care, but we both have the understanding that I have the final say.”- Anna
Navigating the switch through college
Heidi was diagnosed with Crohn’s when she was 9. She’s now 41. When she reflects on the transition from a pediatric doctor to one who treats adults, she recalls the process being fairly simple and a change she welcomed with open arms.
“The best thing was being talked to directly and my opinions mattered more in my later teenage years with the new doctor. Of course, my parents had my best interests at heart, but appointments were so frustrating as a young girl. Another reason for the seamless transition was that my new doctors were amazing. I switched at 18 and then again at 22 when I graduated college and moved away from home. My care team listened to me and saved my life. I know I’m lucky to have found such a wonderful team of doctors.”
Katie wishes there had been a support group (even online) for teenagers back when she was phased into an adult GI. She says when she was diagnosed with IBD at age 15, she often felt uncomfortable discussing her symptoms and didn’t feel her pediatric GI was that great with kids.
“I felt detached from my GI until I was in my 20s and had the confidence to advocate for myself. I was so lost and refused to tell classmates what was wrong with me for fear of being made fun of. I ended up missing so much school I decided to drop out, get my GED, and go straight to college. It was a terrible time to be honest.”
The difference in pediatric vs. adult care
“The transition happened quite fast as I was being referred to an adult surgeon for my complications that the pediatric team were not experienced or educated enough to treat for Crohn’s. I was thrown in the water with no guidance when I started seeing physicians who treated adults with Crohn’s. The pediatric GI team would dumb some things down for me and make my problems not seem “as bad.” As soon as complications started arising, they threw the towel in and basically told me they couldn’t help me anymore and would be better off seeing a care team with more experience with my symptoms and complications.”-Chrissy
Natasha experienced the transition about 13 years ago. Her pediatric team helped her choose an adult GI. And the guidance didn’t stop there.
“My pediatric GI told me who she wanted for me and then went with me to interview the doctors in the adult team. Once I chose, my pediatric GI attended every appointment with me until we all agreed I was ready to move into the next step of my care, which luckily was quickly. And the two doctors stayed in communication. My advice—be open with your doctor.”
Natasha recommends asking yourself the following questions to help streamline the process and make it less nerve-wracking.
What are you looking for in your next step of care?
What are you looking for during the transition process?
What is important to you in a physician?
Do your own research
“I had an AMAZING pediatric GI when I switched, and I just went with who she recommended. Looking back, I wish I did my research because he is not who I would have chosen for myself. I would recommend doing your own research and make sure whoever you find is willing to work with you and thoroughly go through your medical history and all your results. Too many doctors seem to just think they know everything, but we know our bodies best and need to have a medical team who lets us advocate for ourselves.”-Danielle
Jennie has lived with IBD for nearly 20 years. She has a PhD, works in IBD care, and recognizes she has the privilege of a strong support network and insurance. As an IBD psychologist she recognizes how difficult the system and transition can be for everyone involved.
“I was diagnosed with IBD at 12 and transitioned to adult care around age 18. I was extremely sick at the time and ended up having a proctocolectomy within months of transitioning. I think the biggest things for me were the notable shift in culture between the peds and adult world, and the insurance pieces. It’s so much for kids and families. Lastly. I’ve noticed the transition is nuanced for my parents who were so good at being my advocates, they will still offer to call the doctor if I tell them I am not feeling well, and they have a tough time not having the same significant role they did when I was younger.”
Allie was diagnosed with Crohn’s disease when she was 12. Her mom attended all her appointments until she turned 18, and only stopped going then because she was out of state for college and seeing a pediatric GI there until she turned 22. Allie’s mom kept a medical binder of all her procedures, lab results, and details about her patient journey. She says when she phased out of pediatrics and started taking matters into her own hands, she found the binder her mom made to be beneficial—Allie found herself referring to it when she couldn’t remember everything.
“What helped the transition the most was going to appointments on my own when I turned 18. I felt more prepared to speak for myself when I switched to an adult GI.”
Allie’s mom also inspired her to ask the tough questions. After witnessing how her mom spoke up to doctors it empowered her to speak up and stop minimizing her struggles. By watching how her mom handled appointments, it inspired Allie to write down all her questions and concerns before doctor appointments, so she doesn’t forget anything.
“My mom asked me what fights I wanted her to fight for me and what I wanted to do myself. She guided me on what I might need to ask about when I had no clue—even as an adult she still offers to help call insurance companies to fight authorization battles. She gave me space to live my life when I turned 18. She worried, but she never hounded me for updates (are you taking your medication?, how are you feeling? Are you eating ok?”…but she always conveyed support (both my parents did) when I needed it most she showed up.”
Sari recommends young adults with IBD to ease into taking control of their care as early as possible.
“Things like refilling your own meds, scheduling your own appointments, and driving yourself to appointments goes a long way when it comes to learning how to stay organized and advocate for yourself. You don’t want to be doing all those things for the first time when you go to college or a start a new job—too many scary or unknown things at once!”
Check out what pediatric GI’s have to say about bridging the gap and ensure continuation of care.
Dr. Sandra Kim, MD, Associate Professor of Pediatrics, Director, Inflammatory Bowel Disease Center, UPMC Children’s Hospital of Pittsburgh, says, “Transition is the preparation process while the young adult/teens are still under the care of the pediatric team. Transfer of care is the actual “handoff” when the young adult moves from the pediatric GI team to the adult GI providers. Teens want independence but struggle with disease knowledge and self-management skills. Therefore, the pediatric GI team needs to help the teen (and the family, too!) by being active listeners, communicators, and educators. The healthcare team also should utilize things like transition tools.”
Dr. Kim went on to say that GI doctors need to assess how teens are doing on the road to greater independence and that shared decision-making helps build partnerships between adult and pediatric GI providers.
For the adult GI team:
Collaborate with the peds team in the initial stages of care transfer.
Anticipate existing gaps of knowledge and self – management skills
Prepare for more time during appointments for questions, additional education, and working with the family. Parents need help during this time of care transfer, too!
Woman patient signing medical documents discussing medication treatment with african american practitioner in hospital office during clinical consultation. Doctor physician explaining disease symptoms
Dr. Jonathan D. Moses, Assistant Professor of Pediatrics, Director, Pediatric Inflammatory Bowel Disease Program, UH Rainbow Babies and Children’s Hospital, explained how his hospital has a multidisciplinary pediatric IBD team that engages patients in a Health Maintenance Education Clinic as early as 11 years old.
“This allows them to build up the self-management skills needed for a successful transition to adult GI, when they are ready. In lieu of this resource, parents can engage their health care providers about ways to get their child more involved in their care and provide them with the autonomy, and support, to take over aspects of their care over a period of time.”
Dr. Hilary Michel, MD, Assistant Professor of Clinical Pediatrics, Nationwide Children’s Hospital, says a successful transition from pediatric to adult care requires that young folks have developed the knowledge and skills needed to understand and manage their disease independently.
“This knowledge and skill is not gained overnight, and ideally should be obtained gradually. Transfer to adult care should be planned in advance, when a patient is feeling well and has a good grasp on their disease management, so there are no gaps between peds and adult care. Parents and families can help the process by allowing teens to speak with their healthcare providers alone, gradually share care responsibilities, encourage them to learn about their disease, and highlight their successes.”
How this works in real time:
Patients can listen and participate in their visits.
Set goals with your healthcare team and work toward them, ask questions and share your opinions.
Healthcare teams can help by providing a non-judgmental space, listening attentively, encouraging young people’s success, engaging patients in decisions, checking for understanding, getting to know patients as people (talk about school, friends, activities), and connecting patients with resources
Dr. Whitney Marie Sunseri, MD, Pediatric Gastroenterologist, Assistant Professor of Pediatrics, UPMC Children’s Hospital of Pittsburgh, says “I always encourage a step-wise approach to transitioning to the adult world. I encourage patients to know their diagnosis, what medications they take and when, to recall their last scopes, and to be able to report all of their symptoms without the assistance of their parents. Then as they get older, and closer to the time of transition, I encourage them to look into different adult doctors. I give recommendations as well.”
Dr. Sunseri advises caregivers and patients to be proactive and look at reviews of doctors and who is in their insurance network. She says the most important visit is the one where patients follow up with her after their first adult visit to make sure it was a good fit and that they are in good hands.
“It’s bittersweet watching these children grow in so many ways and head off into the hands of another provider. Your heart swells with pride and breaks at the same time.”
Resources and Communities of Support
Sneha was diagnosed with Crohn’s at age six. She’s now 23 and still figuring out what her future will look like with IBD. As she grew up, she couldn’t find a community of young adults. This inspired her to create Generation Patient and the Crohn’s and Colitis Young Adults Network.
“Peer support during this transition is critical, so we host seven virtual community meetings. We have hosted over 250 of these peer support meetings over the last two years. I think peer support should be seen as essential during this transition period and it has been the best thing to come out of living with IBD.”
Generation Patient: Instagram–@generationpatient
CCYN: Instagram–@ccyanetwork
Join the American College of Gastroenterology Thursday, May 4, 2022 at Noon and 8 pm ET for a discussion about “Empowering Patients Through the Transition of Care in IBD”. Click here to register.
There’s no black and white approach when it comes to managing and treating inflammatory bowel disease. Newsflash—you don’t need to choose between medication and diet (nutrition). You can do both! This week on Lights, Camera, Crohn’s, we hear from registered dietitian and ulcerative colitis warrior, Ashley Hurst, about how her personal patient journey inspired her to look into targeted strategies for improving quality of life with IBD.
Ashley was diagnosed with ulcerative colitis at age 24, but she remembers symptoms starting when she was 7 years old. She lacked support for a long time, so her symptoms became her “normal” reality. When she was in college, she sought help for two years before she finally was able to get a diagnosis.
“I went to several doctors who dismissed my concerns thinking the bleeding was just fissures or hemorrhoids. It wasn’t until I was in a nutrition class in college, that I realized it might be something more. I remember reading about Crohn’s and ulcerative colitis and feeling like I was reading about all my symptoms.”
Finally, the fourth doctor she went to diagnosed her with IBD. She experienced a gamut of emotions ranging from relief to disbelief. More than anything, her diagnosis was a huge financial burden. At the time, she was working 2-3 jobs without health insurance. She couldn’t afford medication or even a colonoscopy bill.
“Since I couldn’t afford medications, I relied on nutrition and my own protocol. Once I was more financially stable, and had health insurance, I was able to start mesalamine rectal enemas and oral tablets, while sticking to my nutrition plan.
A preference for finding the balance between diet and medication
“Nutrition and medication have been lifesaving for me at times and I’ve found I prefer doing a bit of both (and so does my gut!). When choosing what route to go for IBD, often we feel a sense of guilt around taking medications. However, it’s important to remember that with whatever treatment route we go, we must weigh the risks versus the benefits.”
An uncontrolled flare is a risk and can impact our quality of life significantly. If you aren’t comfortable with medications your doctor has recommended, you can always ask what other options are available. It’s important to feel good about whatever treatment route you are taking and remember it’s your body, and your choice—just be prepared to face the consequences of active disease and hospitalization if you attempt to go against medical advice and take matters into your own hands. There is a fine balance distinguishing what triggers you and how best your disease is controlled.
The story behind The Crohn’s and Colitis Dietitians
When Ashley initially worked as a registered dietitian, she didn’t specialize in IBD. But as the years went by, she realized Crohn’s and Colitis patients were her favorite people to work with.
“I felt drawn to supporting IBD patients like myself and saw what a need there was for IBD specialized dietitians. Four years ago, I lost my cousin and close friend who had Crohn’s, and he left a lasting impact on me that further increased my desire to make a greater impact in the Crohn’s & Colitis community. He inspired me to be open about my diagnosis and get more connected with others who have IBD.”
Once Ashley decided to specialize in IBD, she quickly discovered how fulfilling it was to do work that has a lasting impact. Ashley says many people seek their support for IBD nutrition, but often feel like they need to choose one or the other.
“Most IBD research studies on both dietary strategies and targeted supplementation for IBD look at participants that are also on medications. Research continues to show that a combined approach using both medications and nutrition is the best path and can help increase chances of remission. It can be tempting to try and experiment by doing one thing at a time to see what works. However, there is currently no one cure for IBD, so treatments typically do involve a multi-faceted approach.”
As business started booming, rather than create a wait list, she brought on three other dietitians. Ashley and her team specialize in providing medical nutrition therapy for Crohn’s and Colitis patients, but also tackle SIBO, acid reflux, allergies, EOE, and much more. All four of the dietitians on the team have IBD, so they understand the patient perspective and the urgency to reach relief.
“As a team, we’ve had the privilege of working with hundreds of patients with digestive challenges, and we have witnessed the remarkable transformations that are possible. We are passionate about helping people not only find relief but make peace with food again.”
Like a fish out of water concerning diet
Many of the people with IBD who Ashley speaks with express that they were dismissed when asking their provider for a dietitian referral.
“The most common thing I hear is- “I Googled what to eat for IBD and Google left me with what NOT to eat for IBD and I feel even more confused with all the conflicting information!” It’s true, the internet is filled with conflicting information on this topic. This leaves people feeling afraid of food and often only eating just a few “safe foods”. Oftentimes these self-imposed food restrictions are unnecessary and lead to malnutrition, loss, low microbiome diversity, poor gut health, and ironically more symptoms!”
This is where Ashley and her team come in. They help those with IBD sort through all the nonsense and get to what really matters most and what works on an individualized basis.
“We are interested in supporting IBD patients, not just while they work with us, but for the long haul! We equip our patients with tools to learn so that they feel confident navigating nutrition even after they leave. We also offer a variety of free and low-cost educational resources on our website and Instagram for those people who just need a next step.”
How to know if you’re truly “healing” your IBD with food
The first question Ashley asks fellow patients she consults with is—is your nutritional approach working? The only way to know is to confirm through colonoscopy and inflammatory lab or stool markers.
“Symptoms alone are not always a great indicator of how our IBD is doing. It is important to monitor your IBD even if you are feeling better to make sure your disease is not progressing.”
Medication is not the “easy way out” and is not a sign of failure
Ashley and her team work with many IBD patients who are on biologics and utilize nutrition as a complementary approach to allow their medications to work better.
“Medications often lower certain nutrients, so one way you can support yourself long term is to check for deficiencies regularly. Some nutrients like zinc and vitamin D we need to regulate inflammation and help support our digestive tract lining. Ensuring they are at appropriate levels can help prevent flares. Vitamin D especially tends to get low with inflammation and is correlated with flare frequency and severity.”
Many patients avoid fiber because they fear it will trigger symptoms. Personally, I remember the first decade of living with Crohn’s, I was told I couldn’t have more than 5 mg of fiber per serving, which I now know is not the case.
“Understanding nutrition can help with expanding your diet. Research shows the importance of fiber for IBD for inflammation reduction, preventing flares and also complications. However, fiber is the most common thing IBD patients avoid. There are many ways you can approach expanding your diet without triggering symptoms and working with an IBD dietitian can help you navigate this better.”
The Roadmap of Nutrition
On average, Crohn’s and Colitis Dietitians helps clients reduce their IBD symptoms by 50-75%. Most report that their other big takeaways are improved energy and feeling more at peace with their food choices.
“We help you achieve this through working with people in a group setting and one-on-one. With one-on-one work we see people for a total of 6 months. It starts off with an intake session where we get to know your goals and your whole story with IBD and outside of IBD. After this session we put together a customized treatment plan that is your roadmap forward.”
The process includes dietary guidance (what to prioritize in the diet) and often targeted supplementation recommendations too. After this session, Ashley and her team see people each month in sessions to monitor progress and troubleshoot anything that comes up.
“We also offer access to us through chat throughout the whole 6 months for any questions that come up. We offer customized meal planning and video modules designed to help you.”
IBD is not your fault. It’s important to remember you didn’t sign up for this and you shouldn’t have to carry the weight of it alone.
“It can be incredibly helpful to have a team around you to support you through flares and the ups and downs of IBD. An IBD focused dietitian can help you navigate what to eat, treat nutrient deficiencies, sort through best options for targeted supplementation and help you reduce IBD symptoms.”
Outsource your stress. It’s overwhelming to juggle all the proverbial IBD balls in the air.
“Having a support team alleviates stress. It’s calming to know you don’t have to think through every decision and worry by yourself. It helps to have someone to lean on and takes the weight off your shoulders.
Don’t base your journey off what works for others. Just because you see someone proclaim their success by treating their IBD with food, doesn’t mean you’ll have the same experience. Before making any rash moves with your treatment plan, it’s imperative you communicate with your care team and get medically guided advice vs. following what you see someone post on Instagram. Same goes for medications—just because one person has had a great response on a biologic, does not mean you’ll have the same response.
Here are what some patients have to say about their experience:
“I’m so glad I started this program. I had to stop biologics due to developing antibodies and have been off biologics for over six months and since starting with the Crohn’s and Colitis Dietitians, I feel better than when I was on them. I only wish I found this program earlier.” -A.T.
“During the 6 months I was with Crohn’s and Colitis Dietitians- my symptoms of diarrhea and urgency reduced significantly, I have more energy and my inflammation decreased from over 100 to 38 (fecal calprotectin). Even my doctor was surprised and curious about what I had been doing with my nutrition!” -S
Whether you are a parent or not it’s heartbreaking to imagine how it would feel if you found out your child (no matter their age) was diagnosed with a chronic illness like inflammatory bowel disease. Of the more than six million people in the world diagnosed with Crohn’s and ulcerative colitis, approximately 25% of patients are diagnosed during childhood and adolescence, most of which are going through puberty. Impaired growth, pubertal delay, and low bone density are all common in children and teens with IBD. They can occur at diagnosis or at any time during a patient’s IBD journey.
As an IBD mom of three, who was not diagnosed until I was 21 years old, I personally don’t have the experience or perspective to share what it’s like to grow up with IBD or have a child diagnosed with it, so I tapped into several caregivers in our community, along with four leading pediatric gastroenterologists for input.
My hope is this article will serve as a helpful resource as you navigate the challenging waters of puberty with your loved one. Teen years are difficult enough without a chronic disease, taking a close look at how this impacts a young adult physically, emotionally, and mentally is something that deserves much more attention than a blog article.
Concerns from patients and caregivers
Before we get into the medical input, I want to share some of the messages I received this week from young patients and their caregivers so you can see firsthand how complicated this period of life is for everyone involved.
“I’m 14 years old. I was diagnosed with Crohn’s when I was 12, which marked an influential time in my life. It can be hard to cope with being diagnosed and having a chronic illness at that age. That year leading to my Bar Mitzvah, a cultural rights of passage from boyhood to manhood, was really challenging for me. At a time when changes are going on and puberty takes its course, learning to trust your body and that it is working is key. Rather than trusting my body, I had a lot trust issues. If my body could turn itself to work against me in my GI system, what’s to say it wouldn’t turn on me other ways? I am especially worried about my reproductive system. Since I was a little boy, I always knew I wanted to be a father when I grew up. Having kids and being a family man has always been my highest purpose in life. Since my Crohn’s diagnosis, I’ve felt anxious and worried about whether my Crohn’s or my body will stop me from fulfilling that dream.”
“I often worry about whether my son’s hormones will put him into a flare and wonder what the best way to approach the school about his Crohn’s is.”
“My biggest puberty concern is delayed growth or slowed growth and flares. I’ve heard a lot about puberty hormones really causing issues. Is there truth to this?”
“Will my almost 15-year-old son start puberty once his treatment kicks in or will he always look like a 12-year-old child?”
“My 15-year-old lost more than 15 pounds in the last year, we’ve checked all kinds of things, but can’t figure it out. He’s on renflexis (generic Remicade) and his colonoscopy came back clean. He gets full easily and deals with chronic constipation. I hope his IBD doesn’t stunt his growth.”
“The anxiety of managing IBD while combining that with the developmentally normal anxieties of the adolescent years can result in mental health issues that are hard to pinpoint. Body image issues that are normal as their bodies change, mixing with body image and food-related issues associated with IBD (good foods and bad foods, overly focusing on diet, etc.) which can lead into worrisome territory like disordered eating and worse. As children separate from their parents more with each passing year (which is normal), it becomes harder to monitor IBD symptoms and disease progression as a parent. As someone who has always been in the driver’s seat about IBD, this is a scary shift and I worry some symptoms will go unnoticed and become exacerbated.”
“That puberty will stop growth—growth has been severely impacted by Crohn’s before diagnosis and it did—hitting puberty early meant growth stopped and she only reached 4’9”/4’10”. Her periods also add to existing fatigue levels.”
“I worry about medication not working like it used to due to so much change in the body. I also worry about how she may feel about her image comparing herself to others at that age with so many scars or if she ever needs to have an ostomy bag. I worry her IBD will affect her cycles or make them more painful.”
“That my son will go into a flare requiring heavy intervention that goes far beyond our comfort zone, but we’ll feel trapped so he’s able to grow at the right time.”
“My 13-year-old son was diagnosed with Crohn’s a little over a year ago. He is doing ok now and on Humira bi-weekly. I’m mostly concerned about his growth, as he is small for his age. He has gained about 20 pounds in the last year, but he was malnourished as COVID made it difficult to get his diagnosis. Hoping he stays on track and continues growing and that his growth potential isn’t adversely affected by his IBD.”
“As a kid who went through being on high dose steroids while going through puberty, bless my mother!”
“Delayed puberty is a big thing. Also, how, and when is it appropriate to start transitioning responsibly for ultimate transfer of care. Mental health is often a concern for adolescents (anxiety/depression).”
“Flares. Many parents report puberty as being a challenging time for IBD. Imagine all the normal teen/puberty hormonal issues and then add IBD (and I say this as a lucky parent with our teens). I think every parent that makes it out alive should get a very long vacation. The #1 thing I hear from parents of kids with IBD is: “my heart breaks every single day”. Whether in remission or not, the disease is a persistent and heavy burden on patients and families. With all the noise, it’s important not to lose sight of this fact.”
“I was diagnosed with ulcerative colitis at age 13 and it all happened very quickly. I was in eighth grade – my body changed almost immediately after being put on prednisone. Being an early developer, puberty was a challenge for me. I didn’t look like most other girls in my grade. So when I started getting really bad acne and a swollen (moon) face from the meds, it was the icing on the cake. I remember ninth grade consisted of me coming home from school and crying to my mom because I felt what was happening to me was unfair. I’d have to excuse myself during classes to use the bathroom, so everyone knew what was happening. I was mortified. And although I was an “early bloomer”, I can’t help but wonder if I would have grown a bit more if I hadn’t been diagnosed, put on prednisone off and on for the first 3 years, or started on biologic treatment. There’s always the questions and mystery of what IBD has potentially taken away from me. But living with IBD also resulted in me growing up pretty quickly. I was able to navigate the healthcare system by the time I graduated from high school. I learned to talk about my body and my health – things that I don’t believe my peers could articulate by that time. So it came with some benefits – or at least things that I have been able to turn into positives. My experiences have made me a stronger person. And I’m thankful for that.”
Impaired Growth: Why it happens and what to watch out for
According to Dr. Sabina Ali, MD, Associate Clinical Professor, Director of IBD program, UCSF Benioff Children’s Hospitals, the most common extraintestinal manifestation of IBD in children is impaired growth, particularly in Crohn’s disease and that’s also what she hears from patients and their families when it comes to their greatest concern.
“Growth is a dynamic marker of overall health in children and adolescents, which occurs in 10-30% of cases. Short stature and failure to grow can precede IBD symptoms. It is important to monitor nutrition and growth closely and as this can lead to delayed puberty. Make sure the child is routinely getting height, weight and BMI measured. Growth impairment is more common in males than females with Crohn’s disease. It’s important to get disease in remission.”
Dr. Ali went on to explain that growth issues are more frequently seen in children who have never been in remission or for those who have dealt with flare ups in the pre-pubertal period.
“Pubertal delay may potentially decrease bone mineralization and affect quality of life in children who realize that their sexual maturation is different from their peers.”
Dr. Jonathan D. Moses,Assistant Professor of Pediatrics, Director, Pediatric Inflammatory Bowel Disease Program, UH Rainbow Babies and Children’s Hospital, agrees that remission is essential as a first step to ensure normal bone growth and pubertal development. Most of the time the concerns we hear about puberty and IBD is at the initial diagnosis when parents will note that young women have not started their menstrual cycle yet at the expected age or young men have not started their “growth spurt” yet.
“Growth is a key element of children diagnosed prior to puberty. Our goal is to provide the therapy that will allow them to be in continuous remission and achieve their final adult height and avoid any pubertal delays. If there are any concerns with this, we typically place a referral to the pediatric endocrinologist to help co-manage this.”
According to this University of California San Francisco study, boys are three times more likely than girls to deal with one of the conditions most devastating effects: the failure to grow normally. Researchers were surprised by this finding because the study also found girls had a more severe disease course than boys.
Dr. Ali says that a novel finding is that a high proportion of patients with ulcerative colitis exhibited continued growth, suggesting delayed skeletal maturation is also frequent in ulcerative colitis, contrary to common assumptions. For patients exhibiting continued growth, median final adult height was greater in males with ulcerative colitis than males with Crohn’s disease but did not differ significantly in females with ulcerative colitis, compared with females with Crohn’s disease. This finding supports the growing body of literature that statural growth impairment is more common in males than females with Crohn’s disease.”
Dr. Hilary Michel, MD, Assistant Professor of Clinical Pediatrics, Nationwide Children’s Hospital, explains the importance of monitoring pediatric GI patients’ weight, height, and pubertal development over time. She says measuring weight and height and asking about pubertal development helps make sure each patient is tracking along their growth curves and developing at an appropriate rate.
“In addition to monitoring IBD symptoms and checking labs, stool tests, and scopes, monitoring growth and pubertal development is another way to make sure we are treating IBD inflammation completely. If a patient is not going through normal stages of puberty, or is going through puberty more slowly than expected, it’s a hint that we should check on their IBD disease control! And if their disease is in control, then we need to think of other causes for delayed puberty and get them in to see the right experts to help.”
Dr. Sandra Kim, MD, Associate Professor of Pediatrics, Director, Inflammatory Bowel Disease Center, UPMC Children’s Hospital of Pittsburgh, says along with monitoring growth and nutritional status, it’s important to keep a close eye on emotional state and quality of life.
“It’s important children understand their disease, and for families and the care team to understand where the child is not only medically, but psychologically and developmentally. As a pediatric gastroenterologist, who focuses on the care of children and teens living with IBD, I know I have a unique relationship and responsibility as I watch “my kids” grow up.”
Dr. Kim says, “We see growth impairment in children and teens with Crohn’s much more so than with ulcerative colitis, especially with extensive involvement of the small intestine. Active inflammation in the small intestine can impact an individual’s ability to absorb nutrients. IBD also impacts appetite and can lead to inadequate nutrition.”
According to Dr. Kim, studies have shown up to 80% of children (males>females) have some degree of both weight and growth impairment when their Crohn’s is not controlled. While studies do vary in the range affected, it’s clearly a significant issue.
Medication and the pubescent years
In general all pediatric gastroenterologists try to limit and shorten the exposure of steroids in children.
Dr. Ali says, “Recent inception cohort studies in pediatric IBD have highlighted baseline phenotyping of patients to predict the severity of their disease course and help identify who will benefit the most from early biologic treatment. Biologic therapies have improved outcomes in pediatric IBD, including achieving mucosal healing as well as improved growth and pubertal development.”
Prior to this, the goals of treatment in Crohn’s disease were focused on controlling symptoms, enhancing quality of life, minimizing complications to prevent surgery, and restoring growth in pediatric patients. Evidence has shown that mucosal healing is associated with sustained corticosteroid-free clinical remission, reduced hospitalization, and lower surgery rates. According to Dr. Ali, biologics are the most effective in inducing and maintaining mucosal healing in this patient population.
Dr. Moses explains how biologics are decided upon with young patients.
“The age of the patient, in the context of the biologic era, does not seem to play a significant role at our center. If a child, regardless of age, needs a biologic medication, then we will typically proceed with this after shared decision making with the family. As a rule, for all ages, we work very hard to limit steroid exposure, both by planning out their maintenance therapy right away or using exclusive enteral nutrition (EEN) to induce remission in our patient with Crohn’s disease.”
Dr. Michel says it’s important to get IBD under control quickly since the window to achieve the goal of remission is so small.
“Because of this, growth and pubertal delay can be reasons to start a biologic as first line treatment. If steroids are used, they should be short-term (induction therapy only) to prevent negative impacts on growth and bone health. These patients may also be great candidates for exclusive enteral nutrition to treat their IBD, as it can help heal inflammation and address malnutrition without the side effects of steroids. Involving an experienced dietitian is key!”
While research has shown that disease activity may fluctuate with hormonal shifts (like those that happen with puberty, pregnancy, and even menopause), Dr. Michel says she is not aware of any specific data to connect loss of response to therapy because of puberty.
Puberty gets delayed
For pediatric patients in whom remission has never been achieved or for those who have frequent relapses, puberty is often delayed.
“The endocrine-hormonal mechanisms responsible for pubertal delay associated with inflammatory disease are incompletely understood. It is thought to be due to effect by both nutrition and inflammation,” said Dr. Ali.
Delayed puberty or delayed linear growth can be presenting signs of IBD to help clinicians make the diagnosis.
“Once these pre-teens achieve remission, they will begin to progress through puberty again and have improvement in their bone density, if it was low at baseline,” says Dr. Moses.
Dr Michel says, “The best way to ensure normal growth, weight gain, and pubertal development is to make sure their mucosa is healed. It’s also important we address low weight or malnutrition. If we’ve confirmed that IBD inflammation is resolved (through labs, stool tests like calprotectin, and scopes), and that patients are getting the nutrition they need, and we’re still seeing delayed puberty or slow growth or weight gain, this may prompt a referral to an endocrinologist, adolescent medicine doctor, or gynecologist to look for other causes of these problems.”
By adequately treating IBD and achieving mucosal healing, kids have the best chance to grow and develop normally and have healthy bones.
“Inflammation affects hormones important in growth and pubertal development, and delayed pubertal development is closely tied with poor bone health,” explained Dr. Michel. “Active inflammation can also worsen malnutrition and lead to low weight, which can delay puberty. These variables are often closely related; for example, a patient with active IBD may not feel well enough to eat regularly and lose weight or be malnourished. Or they may eat well but not be able to absorb the nutrients from their food. Or they may lose nutrients through stool or vomiting. So, treating inflammation and treating malnutrition are KEY to optimizing outcomes for kids and teens with IBD.”
Causes for the delay in puberty and decreased bone density can be multifactorial.
“Things we consider include nutritional deficiencies (not absorbing enough and/or not getting enough into your body), and the impact of inflammation (though pro-inflammatory cytokines – the “chemicals” produced by activated white blood cells – on sex hormone production, as well as growth hormone),” said Dr. Kim. “Other factors that can specifically impact bone density – decreased physical activity which leads to decreased muscle mass.”
When determining a course of therapy, a child’s quality of life and the impact of active IBD must be taken into consideration.
Dr. Kim explains, “Steroids have a great deal of side effects: external appearance (“moon” facies), psychological (can exacerbate underlying anxiety and depression; can impact sleep), bone health (decrease bone density and increasing risk of fractures), impact on wound healing, increased risk if long term on the GI tract (i.e. perforation), increased blood sugar (hyperglycemia), high blood pressure.”
What’s the deal with birth control and IBD?
Each pediatric gastroenterologist featured in this piece says they have heard from both patients and parents about oral contraceptives aggravating IBD. Dr. Ali says oral contraceptives are consistently linked to an increased risk of IBD.
Dr. Michel says since menstruating is a normal part of development for female patients, active inflammation, low weight, and malnutrition, can all play a role in delaying the onset of it. If a patient is flaring, they might have irregular periods or stop getting their period for some time. Once the problem is addressed—inflammation controlled, normal weight achieved, and malnutrition treated, menses typically resumes. IBD symptoms can also be exacerbated during menses for some women.
When it comes to choosing to go on birth control, and what birth control to choose, Dr. Michel advises patients and parents to be clear about their goals and weigh the risks and benefits.
“Goals for starting birth control can include regulating heavy periods or bad cramps, preventing pregnancy, improving premenstrual symptoms (mood, headache, fatigue), or even managing acne. There are some data about birth control pills increasing the risk of developing IBD, but research is conflicting about whether they increase the risk of flare. I would encourage any patient who is interested in starting birth control to talk with her gastroenterologist about what options might be best for her. An adolescent medicine doctor or gynecologist can also be extremely helpful to have these conversations, weigh pros and cons, and help young women and their families make informed decisions.”
Dr. Kim is no stranger to hearing concerns about the impact of oral contraceptives. She says it’s tough to determine whether birth control specifically aggravates disease.
“Women who have increased diarrhea and cramping around their cycles may have improvement in these symptoms when on birth control. Currently, there is not enough data to suggest birth control directly leads to aggravation of underlying IBD. However, there are other issues to consider when a young woman chooses the type of birth control. There is increased risk of venous thromboembolism (increased risk of forming blood clots) in individuals with IBD. There also is an increased risk for clots associated with combination oral contraceptives whether a young woman has IBD or not. Therefore, a woman who has IBD and goes on oral contraceptives not only has a higher risk of forming significant blood clots, but with more significant consequences from this.”
Dr. Kim’s recommendation? Avoid oral contraceptives with an estrogen component, if possible. Depo-Provera is an alternative, but you need to be aware that it can impact bone density. She says IUDs are safe and highly effective
How best to support young patients
Support groups: Discuss concerns regarding how a patient is coping with the IBD team. A social worker or psychologist on the IBD team can be a great resource.
Psychosocial assessments
Care coordination
Supportive counseling
Connection to resources
“As a pediatric gastroenterologist, my contribution is to manage their therapy as best I can to achieve remission. After that, we rely on our multidisciplinary team to address the psychosocial aspect of the disease and how this affects them at this stage in life,” said Dr. Moses. “Finally, we encourage the families to get involved with the Crohn’s and Colitis Foundation and attend Camp Oasis, if possible, to meet other children their age who also have IBD. This builds up their social support network in a way that can be life changing for them.”
Dr. Michel says, “I try to normalize their feelings, and reassure them that with effective treatment and achieving remission, we are working toward them reaching their full potential. I also think it’s a great time to involve experts like psychologists and child life specialists to help work through these concerns. Parents will often also ask about future fertility (kids and teens usually aren’t thinking of this yet)! It’s always a huge relief for families to learn that we expect normal fertility for our young folks with IBD and that the best way to ensure this is to get good control of disease.”
She advises parents to acknowledge how challenging it can be to go through puberty with IBD.
“Any feelings they’re feeling – frustration, anger, sadness – are ok. Then, I would encourage parents and patients to share these emotional and physical struggles with their healthcare team. Many centers have fantastic psychologists, social workers, and child life specialists that can help young people understand their disease, explore their emotions, and develop healthy coping skills that will serve them now and into adulthood. There are also fantastic resources online through ImproveCareNow and the Crohn’s and Colitis Foundation,” said Dr. Michel.
Dr. Kim advises parents and patients not to be afraid to ask pediatric gastroenterologists and their healthcare team for help.
“I really believe it takes a collective effort to support our children and teens. We are living in an unprecedented time with the COVID 19 pandemic (which has led to social isolation and new stressors with school, peers, and family dynamics),” she said. “Seeking our behavioral health resources (psychology, psychiatry, counseling, social work) is NEVER a sign of weakness – quite the opposite. One thing I would love to see: elimination of any perceived stigma when addressing issues around mental health. It is so crucial to address stress, anxiety, and depression. Besides the obvious impact on quality of life, we know that anxiety and depression can negatively impact an individual’s IBD itself. For the parents out there, I tell them they must check their own guilt at the door. The parents did NOT do anything to cause their child to develop IBD. I always say that you can be mad at the disease but never at themselves.”
Connect with these physicians on Twitter:
Dr. Sabina Ali: @sabpeds
Dr. Hilary Michel: @hilarymichel
Dr. Jonathan Moses: @JonathanMoses77
Dr. Sandra Kim: @SCKimCHP
Let this piece serve as a conversation starter as you discuss your child’s health with their care team. Ask the questions. Get empowered by learning and educating yourself more. As chronic illness patients and parents, it’s a constant learning curve—with each setback and triumph we gain newfound understanding and perspective. Stay tuned for an upcoming article on Lights, Camera, Crohn’s with guidance regarding making the transition from pediatrics to adult doctors.
On the last day of 8th grade most kids are anxiously awaiting summer and moving onto high school, but for Candace Monacelli, that wasn’t the case. Instead, June 7th, 2007, she was diagnosed with Crohn’s disease at age 14.
As you can imagine, a lot has transpired since that monumental day. Candace now works as a morning meteorologist and reporter in Grand Rapids at WXMI-TV. She’s been at her current station for five years and has worked in the TV business for seven. This week she shares how Crohn’s has impacted her life but didn’t rob her of her hopes and dreams of working in TV news.
When it comes to going after your dreams and following your career aspirations, I see a lot of Candace in myself. We recently connected on Instagram and realized the parallels of our experience. Despite my Crohn’s diagnosis, I went on to work in TV news 3 months after finding out I had Crohn’s. I worked on morning shows for 7 years, she’s a morning meteorologist. We both do/did what we could to be the bubbly/happy on-air morning gals, while facing major battles and pain internally. We both encountered serious hospitalizations and bounced back to be on camera shortly thereafter. Being on steroids is hard enough…going on camera while on steroids and being judged by keyboard warriors and unkind strangers is a whole different story.
A walk down memory lane
“My family and I had never heard of Crohn’s disease before and knew nothing about it or what my life would look like moving forward. I was sick for months prior to my diagnosis. My parents and I learned along the way, but my mom was my right-hand lady at every doctor’s appointment trying to figure out my illness. My parents were just so happy to have a name and a cause to me being so sick, they just described it as my stomach not being normal and we would figure this all out together. Then, I was put on steroids which resulted in weight gain and being bullied.”
Aside from hurtful words from her peers and juggling life as a teen with doctor appointments and colonoscopies, Candace says her disease at the time was well-managed with 6mp. When she moved onto college, she dealt with the challenge of wanting to live life like a typical student. By the time she was ready to enter the real world she not only graduated from college but also onto biologics (Humira).
Life in the TV spotlight
While in high school Candace discovered she loved public speaking and visited a local television station—she was hooked. Since she was already a decade into her patient journey, she didn’t second guess going after her dream of working in TV news as a meteorologist and reporter.
“Everyone thinks of Crohn’s as a pooping disease and while it is so much more than that, it is still a factor of the disease. The hardest part of my job is the limited time or access to a bathroom. Either I am covering something in the field with no restroom nearby or I have two minutes during a commercial break to hurry to the bathroom and be ready to go on air again. There’s been some interesting behind the scenes moments, but luckily, I am open with my crew and choose to be lighthearted about the bathroom aspect.”
Over the years, Candace has learned how to read her body and know when she can’t push through or make it on air.
“When the light goes on, it’s showtime. No matter how I am feeling… there’s been many days where I feel terrible but must put on a smile because I look perfectly healthy and it’s my job to come off that way. Being in the public eye with IBD can be pretty taxing some days.”
Juggling surgeries, abscesses, and fistulas
Up until this story—Candace has not spoken openly about her struggles with abscesses and fistulas. As a public facing person, discussing this private and often taboo topic is something that takes a lot of guts to be open about.
“Abscesses and fistulas make you feel so broken and constantly worried that if someone finds out the truth, they will instantly think you are the dirtiest person on this Earth. My palms are sweating, and I feel like I could puke, knowing strangers will now know this about me. But I am sharing in hopes to help that one person that is feeling just as alone as I do somedays.”
Even after five surgeries, Candace still has problems with abscesses and fistulas and somedays are better than others with numerous new challenges in her life.
“Sitting for a long time is now my own personal Olympic sport because it’s painful some days. I used to consider myself a runner, but that is now off the table for me, and my bathroom breaks are different. It’s been a scary learning curve trying to figure out how to handle something so foreign, that is now very much a part of every aspect of my daily life.”
Candace joined specific Facebook groups for her condition, as she desperately searched for others going through the same reality. More than anything else her family and friends are really what get her through.
“Every single person close to me has helped me know I am not alone and helps me get through difficult days, whether it’s a simple ‘how are you feeling?’… or crying with me on the bathroom floor.”
Going back on air after surgery
The first surgery to treat her abscesses and fistulas was an emergency and was unexpected. Candace was back on air four days after being discharged from the hospital.
“It sounds just as crazy as it was, but I am a stubborn Italian and never let Crohn’s win, so I somehow went back to work. My parents and boyfriend (now husband) weren’t happy with me, but I insisted on returning to the job I love. I remember having to practice getting in the car and making sure I could handle driving around my neighborhood the day before, since I leave for work at 2 in the morning.”
Candace remembers waking up that day, knowing what she just went through, and what it felt like to go back on camera in front of thousands of people who had no clue what she was enduring.
“I remember talking to myself on the ride to work thinking “what are you doing Candace you are a mess.” That first day back was mentally very hard to smile and pretend I felt like a million dollars when I did not. No one wants to watch the “sick” meteorologist on air so I couldn’t be that girl. Behind the scenes was an interesting hot mess as I had to put a blanket down to lay on the floor to work or just take a break since I couldn’t sit – I had to lay down at work for a month or more after each surgery.”
Candace learned her lesson and she didn’t rush her recovery after more recent surgeries.
“I found that allowing myself to heal and rest is not letting Crohn’s win but doing what is best and needed for myself in that moment. The stubborn Italian in me still struggles with giving myself time and grace, so it’s a work in progress.”
Being an open book with viewers and the community
Candace’s viewers know she has Crohn’s disease. She decided to openly share her experience with IBD to spread awareness and help make a difference.
“If I can share my story and experiences to reach one person and make them not feel so alone, then it’s one thousand percent worth it to me. I’ve also covered and shared numerous stories of IBD warriors within my community and get media coverage for all the Crohn’s and Colitis foundation events every year. The more awareness the better and I am blessed with a perfect platform to help make that possible.”
Advice for fellow IBD warriors
Candace has this advice for anyone worried about their futures—whether it’s a parent with a child who has IBD, or someone diagnosed at an early age.
“Where there is a will, there’s a way. Everyone has a cross to carry in life and our cross just happens to be IBD. In a weird, twisted way, this disease makes you strong enough to conquer whatever you put your mind to. We see people with IBD be professional sports players and movie stars, to everyone in between, including little old me… every IBD warrior can do whatever they dream to be one day. We are warriors fighting a battle every day, whether it’s big or small. Even when you yourself or someone you care for is sick or having a tough day, we need to know better days will happen again – just like the weather it can’t always rain forever…. You will feel better one day.”
I asked Candace what she would tell her younger self if she could go back to when she was diagnosed in eighth grade. Here’s what she said:
“IBD will challenge you more than you can ever imagine but will also make you into the strong person you love. The life God gave you is tough, but it’s nothing he knew you couldn’t handle. It’s a battle you won’t ever lose. One day you will get everything you prayed for, even through everything Crohn’s throws your way.”
Candace is in remission in terms of her colon, but her rectum is still problematic and causing active disease. She gets Remicade infusions and avoids eating too much dairy, spicy foods, and salads. Candace drinks one cup of mushroom coffee most days and eats a mostly plant-based/Mediterranean diet.
Finding love with IBD
Candace met her husband on Match while working in her current TV market. She says they fell in love fast, and the rest is history!
“We moved in together, he proposed, and we had to postpone our wedding because of COVID. Now, we’re finally married and have a new house and a puppy. Life is good! My husband is the most loving and caring man helping me through all things Crohn’s. He is a saint straight from the heavens being right there by my side through everything. He has even spent one of his birthdays with me in the hospital for a surgery. He pushes me when I’m in a hole and feeling sorry for myself to help me realize my worth and remember that Crohn’s doesn’t completely define me.”
For those of us who live in the United States it’s been devastating to watch the news coverage coming out of Ukraine since the war began there February 24th. I was lucky enough to connect with an IBD warrior, mom, and patient advocate named Elena Sotskova in the midst the chaos. She’s been working tirelessly for years to bridge the gap for patients and show all that’s possible in life while living with Crohn’s disease and ulcerative colitis. We’ve been emailing back and forth. I pray each day, multiple times, for her safety and check in often to make sure her and her family are unharmed. When I see her name pop up in my email inbox it always comes with a big sigh of relief.
Today’s update is something many of us in the patient community have wondered and worried about—whether those with IBD are having access to their medications and ostomy supplies. Here’s the latest from Elena.
Dear Natalie! Thank you for not forgetting about me, for your care and prayers. We are quiet now. The Russians have retreated from Kyiv and the region and are gathering their forces in the east. A big fight is expected there.
Kyiv and the Kyiv region are still life-threatening. A lot of mines and shells. Our people are working 24/7 to clear the area. We cannot return home to Kyiv yet. 😦 Thank God our house is not destroyed, and someday we will be able to return there. But many people are not lucky, they now have no house, no apartment. Very large destruction in Kyiv region.
A lot of people died, many tortured and raped. Even children. You must have heard or read about our Bucha. This is such a horror that it’s even scary to think about. When I think about how many people have already died because of this war, I cry. I don’t understand why the Lord punishes us, Ukraine, our people like that. What have we done wrong?
A few days ago, my friend’s husband died in the war. He wasn’t even 40 years old! And there are thousands of such people. Most of all we want peace, and we want the Russians to leave our land. Forever and ever.
I try to work hard so as not to think about the horrors of war. I work 15 hours a day, then I just fall down and sleep. So, it’s easier for me. We received a large shipment of drugs from Dr. Falk (a German pharmaceutical company), 2 tons. Happy doctors and patients who unload them. Getting the necessary medicine is happiness for us now. Now I am engaged in distributing medicines to hospitals, and to patients, all over Ukraine.
Each patient who comes to me for medicines is a separate story and a separate pain. Someday I will write about it. During the week I heard hundreds of different stories, and they are all sad. I’m glad I can help them a little.
And I am glad that European friends are actively helping the IBD community. Yesterday Japan wrote to me and offered to help. The whole world is with us!
Stay in touch with you! Hugging you, Elena from Ukraine
As she fears for her life each day and every night in her homeland of Ukraine, ElenaSotskova thinks back to when her body started going to war against ulcerative colitis. She was 21 years old. Now, as a 47-year-old IBD mom, she shares firsthand experience of what it’s like to live in absolute chaos and devastation while trying to manage a chronic illness like IBD. Every morning Elena and her family wake up at 6 a.m. to the sound of explosions and gunfire. Oftentimes the internet and electricity go in and out, with repair workers constantly having to restore power.
Before we get into the utter heartbreak and unthinkable sadness, here’s some background. This isn’t the first time Elena has had to run from her home to try and reach safety. Shortly after her ulcerative colitis diagnosis, she fled with her 3-month-old daughter to Kyiv from Crimea, to avoid an abusive husband. At the time, she had the equivalent of 25 U.S. dollars in her pocket. Prior to becoming a mom, Elena worked for one of the largest banks in Ukraine, so she was confident she’d be able to land back on her feet in no time and support herself and her daughter. The stress of the divorce and being forced to start anew exacerbated her IBD.
“My condition was worsened by constant diarrhea, bleeding, low hemoglobin, and as a result, constant fatigue. I tried not to pay attention to it as I needed to work and make money for myself and the baby. My ulcerative colitis limited what I could do and where I could go. I used to be unable to go for walks unless I know where the restrooms were. I always had spare clothes with me and wet wipes, in case I did not make it in time.”
Since then, Elena has managed her ulcerative colitis with Mesalamine, in large doses (6-8 grams per day).
“In Ukraine at that time there was no biological therapy, and even clinical studies of such therapy did not take place. All that was available to patients were hormones and mesalamine. In addition, in Ukraine there is no compulsory insurance medicine (until now), there are no state programs for the treatment of patients with ulcerative colitis and Crohn’s disease, so I and other patients must buy drugs with our own money. And they are, as you know, not cheap. Compared to the level of income in Ukraine, it is expensive.”
How love found its way
Elena says she was working to buy her medicine. It felt like a vicious, never-ending cycle. But Elena’s luck in the love department took an amazing turn.
“I was lucky, I met a wonderful man, named Leonid who has a son. Leonid later became my second husband. I immediately told him about my illness. He accepted me, my IBD, and my child. He wouldn’t turn away from me or be ashamed when I had an accident at an event or in a public place. He helped me and supported me. And as a result, I stopped being nervous about my ulcerative colitis. I stopped worrying, and after I became calmer, the disease slowly began to subside.”
Leonid also started to take care of all the costs associated with her IBD treatments. Elena credits him for reviving her medically and emotionally, allowing her to reach remission after chasing after it for years. She was able to travel comfortably away from home and see the world through a different lens.
Prior to the war with Russia, Elena had big plans for herself. She aspired to begin her MBA and travel to English-speaking countries.
When the explosions hit
“All plans collapsed at 4 a.m. on February 24, 2022. We woke up to the explosions, saw the message “The Russians are bombing Kyiv, the war has begun.” That was more than a month ago, but it seems like we’ve been living in this nightmare for ages.”
Elena’s daughter, Alina, had recently arrived in Poland to study, but she happened to be home in Ukraine with family when the war started. Prior to this happening her travel plans were to fly back on February 27th. Of course, that all changed.
“She was supposed to fly back to Warsaw on Sunday, but war broke out on Thursday. Immediately, air traffic over Ukraine stopped. And hell began. Kyiv was bombed from the very beginning, we sat in the bathroom during the air raid, went down to the basement or went to the shelter. We did not turn on the lights in the apartment and taped the windows with duct tape so that they would not be knocked out by the explosions. We walked the dog for 5-10 minutes, near the house, so that if the shelling started, we could quickly hide. We live in Kyiv on the 7th floor, and most of all I was afraid that a bomb would hit our house, and we would either be overwhelmed or burned in a fire.”
Elena says for days on end she sat with her husband and daughter in their apartment. Alina would constantly cry. They learned that evacuation trains were leaving Kyiv for western Ukraine. At this point, they decided to send Alina back to Poland.
Nights spent at the railway station
“The most terrible were the three days that Alina and I spent in the basement of the railway station in Kyiv. There is a curfew, you cannot go outside in the evening, in addition, it was dangerous to go outside, because they are constantly shelling. My daughter and I got to the train station and decided to wait here until she could take the train to safety. My husband and son stayed home with the dog.”
The trains to leave Ukraine were like something out of a horror movie. Instead of a train car fitting the usual four people, they were packed with 20-plus people. People were ready to stand for an entire day just to leave Kyiv.
“Alina could not get on the train that was going to Warsaw, and we stayed overnight at the station. At night, the air alarm did not cease, explosions were heard, we went to the shelter (basement) of the station, which for three days turned into a home for us. We tried to sleep on the floor, it was warm, but the main thing was that it was safe. Finally, on the second day, we managed to put Alina on the train to Lviv. She left, and I was standing on the platform crying and praying that the train on the way would not be shelled, and my daughter would reach Lviv intact.”
Elena had to stay alone at the train station for an additional night because of the curfew in Kyiv. She was afraid her IBD would start acting up from the overwhelming stress and worry and terrified she was going to be killed.
“My gut understood me, it “behaved quietly”, and did not give me cause for concern. During the 21 years of illness, I learned to negotiate with him. On the fourth day, when the curfew was lifted, I was finally able to return home, wash myself and clean myself up. And my daughter had already reached Poland and was safe. We thought that somehow, we could adapt to this situation. We had food, water, gas, electricity, and Internet. We thought that we could somehow live in Kyiv. But this turned out to be unrealistic, as soon as dusk came, the city was pierced by an air alarm, it turned on several times during the night.”
Deciding to leave Kyiv
Bombing began each morning between 3 and 4. Elena and her family stayed in their clothes and didn’t sleep. She would take her dog and lock herself in the bathroom while her husband and son were standing in the hallway where there were no windows.
“Then a cruise missile hit a television tower, close to our house. It was afternoon, her son had just gone out to the store for bread, and there was an explosion, a crash, a fire. People who were nearby were killed. My husband said that we needed to leave Kyiv, it was extremely dangerous.”
So that’s what they did. They left for Elena’s mother-in-law’s house who lives in a village outside of Kyiv. There are no military or infrastructure facilities there, so they are hopeful it will not be bombed. As you are reading this, Elena is still there.
“In the village it is calmer, the battles are 30-40 kilometers (20-30 miles) away, we constantly hear artillery shots, gunfire, explosions, and flying missiles. But there is no air raid alarm, which was so exhausting in Kyiv. It’s still impossible to sleep normally. We are afraid that we will be occupied, and we are not where there are active battles.”
Running out of IBD medicine
But, Elena now faces another major issue. She will run out of her IBD medication this week and there is no way to buy it or receive it. Since the war started, she’s heard from countless other patients in the same bind. Doctors have fled, there’s no place to safely receive treatment, and for those who are now refugees or without jobs, they struggle to afford their medications. Elena knew she had to do something.
“I began to write to the European Crohn’s and Colitis Association, manufacturers of drugs, everyone who I could, to find out how to help our patients. Poland and Estonia immediately responded. They understand if Ukraine does not resist, the war will go on, to Poland, and the Baltic countries may also suffer. Now we are in constant contact with our European colleagues and are waiting for humanitarian assistance from them. Packages from Greece are supposed to arrive any day now.”
While Elena’s ulcerative colitis is under control now, she’s been forced to reduce her daily medication dose by half to try and keep medication in her body for as long as she can. She’s starting to feel that reminiscent pain we all know too well when our intestines are making themselves known. The pain, bloating, and diarrhea have been more consistent for her, but she doesn’t feel she’s flaring yet.
“I’m very scared that if I go into a flare, there will be no one and no place to treat me. I am afraid that this war will drag on for a long time, and then it is impossible to predict the condition of either mine or our other Ukrainian patients.”
Her friend was able to find her mesalamine in Kyiv. She bought the medication, but it’s been a week now and the package has not arrived to Elena’s new address. Tomorrow (March 31), Elena’s husband will venture back to Kyiv to try and get Elena the medicine she relies on.
She tells me she no longer cries or has emotions and that every day feels like déjà vu. Sometimes she feels like a robot in an out of body experience. Elena says the Ukrainian people are steadfast, strong, and remain hopeful they will be victorious in the end.
Tomorrow on Lights, Camera, Crohn’s you’ll learn about Elena’s inspiring patient advocacy prior to the Russian invasion, how she co-founded an IBD organization to support the patient community, and how she’s working day and night right now to help the approximate 11,000 Ukrainians who live with IBD and are struggling to manage a disease while living through a war.
Did you know that at least one third of patients with Crohn’s disease experience a fistula during their patient journey? For those who don’t know, this complication happens when an abnormal passage develops between the bowel and nearby organs, such as the bladder, vagina, rectum, or skin. Fistulizing disease is complicated and unfortunately remains somewhat of a taboo topic of discussion.
This week on Lights, Camera, Crohn’s we hear from 36-year-old Lisa Mason who transparently shares her experience living with multiple abscesses and fistulas through the years. Diagnosed with ulcerative colitis at only 5 years old, and later diagnosed with Crohn’s disease, she has more than three decades of experience facing IBD head on. Lisa is passionate about showing others this topic is not off limits and something that needs to be discussed more often. My hope is this article will serve as a resource to educate, comfort, and inspire.
Dealing with IBD as a pediatric patient
“By the time I was 10, my only option was to have surgery to remove my entire large intestine. Having my colon removed entailed three surgeries, four hospital stays, a temporary ileostomy, doing school from the hospital, and re-learning how to use the bathroom after the ileostomy was reversed. I thought my disease was gone, but it turns out having your colon removed is NOT a cure.”
For nearly 20 years Lisa felt she functioned as a healthy person who went to the bathroom 10-15 times a day. She had pain and abdominal discomfort off and on and was used to getting up to use the bathroom three times during the night. She attributed all this to the fact she didn’t have a colon. Then, in 2013, her symptoms took a turn for the worse.
“I noticed a “bump” near my vagina. Soon there was a second bump. I started with my primary care doctor who diagnosed it as a Bartholin cyst. I went to an OBGYN, who said they couldn’t do anything. After a second OBGYN opinion, I was prescribed antibiotics, which didn’t do anything.”
Lisa met with eight doctors to try and find someone to help her. Lisa saw a GI doctor who ordered an MRI but couldn’t see a direct tunnel to her GI tract and told her the issue was not IBD-related. For almost four years she had pus and blood constantly draining from the new “holes” by her vagina and no matter how hard she tried, she couldn’t find a medical professional to diagnose her correctly.
“Between 2013 and 2016, I had these abscesses/fistulas with no diagnosis. I was very fortunate that the abscesses made their way to the surface of my skin.”
“In sickness and in health”
Lisa got married in August 2016 and the week after her wedding, her fistula “blew up” to a huge abscess.
“Finally, a new OBGYN doctor suggested I see a surgeon who specializes in OBGYN oncology. I had three abscesses removed through surgery. Within one week of the surgery, the abscesses came back. The surgeon said, “this has to be IBD-related.”
So, Lisa went to a new colorectal surgeon. Between 2016 and 2018, she continued to have abscesses and drainage and would take antibiotics as needed.
“Luckily, they mostly drained on their own. When they couldn’t drain, I would be at home in excruciating pain for a few days until they made their way to the surface of my skin. During this time, both my GI doctor and Colon and Rectal Specialist (CRS) thought “things aren’t bad enough” to start biologics. Surgery wasn’t really an option since the fistulas were so close to my vagina. And since they continued to drain, the risk of infection was lower.”
The battle to get started on a biologic
In late 2018, Lisa’s GI doctor began the steps to get her started on Remicade. After doing all the medical testing for the insurance company, her GI decided her symptoms weren’t significant enough to start biologics. A year later, the fistula grew to an abscess the size of a large marble, again.
“For about four days, I couldn’t move without being in a lot of pain. The GI doctor and insurance finally agreed it was time to start Remicade.”
In August 2020, Lisa developed an entirely new fistula (this time the fistula was on her butt cheek). After several rounds of Flagyl and Cipro, the infection wouldn’t subside. All the antibiotics caused a C. diff infection, creating even more challenging symptoms.
“Finally, when the fistula moved closer to the skin’s surface, my CRS opened the fistula during an office visit so it would drain. I am lucky that I avoided surgery to install a seton.”
When antibiotics don’t get the job done, the next step is often seton surgery. A seton is a procedure that involves a thin rubber surgical-grade drain that goes through the fistula tract so that the cord creates a loop that joins up outside the fistula. The hope is to prevent the formation of an abscess.
At this point the game plan was to start Humira, which failed her as well.
Onto the next…biologic
Lisa then started Stelara in October 2021 and so far, it is doing the trick.
“My latest fistula has never been better! It still gets a little inflamed, and I still wear gauze every day, but it has come a long way! My other fistulas are not active. I still have one fistula that is a direct open tunnel that stool leaks out of. That fistula will always be there, but it is not irritated or inflamed. I am still working with my doctor on symptom remission. I am currently on Budesonide to help with my symptoms, and that’s working. I hope to wean off Budesonide in the next month or so.”
As Lisa comes to grips with these struggles, she says past medical trauma haunts her. Every doctor’s appointment and every procedure takes her to an unhappy place. She brings her husband or her mom to every appointment and seeks help from a therapist, but still has a tough time coping.
As a scientist, Lisa has used her career expertise to improve her communication with her care team. She has a system for tracking her symptoms, sharing the trends, and writing down her questions.
“Advocating for yourself to your doctors takes practice. Over the years, I’ve learned to track all my symptoms from number of bowel movements, diet, menstrual cycle, stress levels, etc. I created a system that works for me. Before I go to the doctor, I write down a timeline showing trends in my symptoms. I write down all the details to show the big picture. I think this has helped me communicate more effectively with my doctors and has helped create a treatment plan that works for me.
For ideas on how to communicate with your doctor to better advocate for yourself, the Crohn’s and Colitis Foundation has a great resource page on “Partnering with Your Doctor.”
Worries and wants for the future
Despite having IBD for as long as she can remember, as she tries different biologics and forges ahead Lisa says she’s “re-learning” what it means to have a chronic illness.
“The hardest part is knowing that it’s possible I may not get to be a mom. I may not be able to have a baby because of possible scar tissues blocking fallopian tubes, having active Crohn’s, higher risks of miscarrying, a low AMH score (a fertility test that measures a woman’s ovarian reserve), past medical trauma, and my age. And if I can have a baby, I don’t know if I should. My body has been through so much already physically and mentally. Should I have a baby if I am going to be sick off and on my entire life? The thought of passing this disease on to my child is heart wrenching.”
While IBD has put a halt on Lisa’s family plans it hasn’t stopped her from completing seven half marathons and raising more than $30,000 for the Crohn’s and Colitis Foundation through Team Challenge!
“Besides meeting other people with similar issues, I learned to talk about this disease openly. For most of my life, I would only talk about IBD on a “need-to-know” basis. I am forever grateful for Team Challenge, but in all my experiences with the IBD community, fistulas are commonly experienced by patients, but aren’t talked about enough.”
For anyone struggling with fistulas or IBD, Lisa recommends connecting with others who may going through the same thing.
“With social media, we have more opportunities than ever before to connect with people with similar struggles. I also recommend connecting with IBD non-profits. For me, The Crohn’s and Colitis Foundation (CCF) has been an extremely valuable resource. Between Team Challenge, Take Steps, support groups, and educational seminars and resources, there is something for all patients and caregivers. Currently, I am serving on the Patient Advisory Taskforce for CCF, and it gives me hope for future treatments and a cure someday.”
When you are struggling with your IBD, be sure to rely on your support system, like your family, and know that things will get better. Look for the little things that bring you joy even when you are feeling sick. My go-to list includes sitting outside, spending time with my family and my pets, and writing down a gratitude list.
Despite the unexpected setbacks and flares through the years, Lisa is grateful for the full life she has been able to live. She has an amazing husband, a supportive family, a career she loves, and has had opportunities to camp, hike, and travel abroad multiple times. She’s even been to Africa on multiple occasions. Ironically, her husband had to have half of his colon removed from Hodgkin’s Lymphoma (he’s healthy now!), so between the two of them, they don’t have a full large intestine. Lisa says they take ‘No Colon, Still Rollin’ very seriously!
Lisa advises people to lean on their support system and know that things will get better. When she’s feeling unwell, she tries to do activities that bring her joy such as sitting outside, spending time with her family and pets, and writing a gratitude list.
Connect with Lisa
Lisa is part of a private Facebook group “Abscess/Fistula Support for Women” which she finds to be extremely helpful.
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.
lights camera crohn's 