This blog post is sponsored by Wave Health. Thoughts and information shared are my own.
What started as an app designed for cancer patients in 2019, now spans more than 250 chronic health conditions, including inflammatory bowel disease. Wave Health is a free, easy-to-use, comprehensive tool that empowers patients to use their daily health data in practical and effective ways, while enabling those in our community to be more involved in their care and treatment decisions. This week on Lights, Camera, Crohn’s a look at the story behind how Wave Health came to be what it is today and how the app can be a transformative tool in how you take on your IBD.
Hear what Claudia Zhao, the Marketing and User Engagement lead at Wave, has to say about the inspiration behind their mission.
“Wave Health App was inspired by a personal patient experience. In 2013, one of Wave’s founding partners was diagnosed with non-Hodgkin’s lymphoma. During his treatment, Ric’s partner, Matt (now the CEO of Wave Health) began to record extensive data by hand — things like his diet, hydration, exercise, mental engagement — anything that might impact the side effects Ric faced during his chemo and drug therapy. With this information, they were able to provide their doctor with real-time, individualized information, and identify relationships between what Ric was doing and the side effects he was experiencing. Protocols were shifted and Ric began to feel better,” said Claudia.
Matt transformed his data analytics system into chemoWave, an app for cancer patients like Ric. Soon, they realized that anyone with a chronic illness would benefit from a health management and insights tool like chemoWave, and they created Wave Health App.
“Wave’s mission is simple: to help every patient take control of their own journey. Wave serves to empower patients to use their everyday data in ways that allow them to be better partners with their care team and ultimately improve their at-home and treatment decisions.”
What sets Wave apart from other IBD-related apps
Most IBD-related apps focus on tracking symptoms and a few other activities such as meals, bowel movements, and medications. Wave Health is different in that it serves as an all-in-one health diary.
“In addition to the more obvious activities to track in IBD management, Wave also lets you track vitals, sleep, menstruation, and even mindfulness activities like meditation and breathing. Wave then gives you personal insights, not only about your symptoms, but also about what’s impacting your moods and wellbeing. Wave helps you manage your IBD-related symptoms, but it also acts as your overall health companion.”
Having a companion to help guide the way you manage and treat your IBD can help ease the isolating nature of our disease. Often life gets busy, and we forget how much our Crohn’s disease or ulcerative colitis takes a toll on our day-to-day activities. It’s easy to generalize or downplay the struggle when it comes time to share how you’re feeling to your care team. Wave takes that guesswork out of picture and is a win-win for everyone involved.
A systemic review out of Cedars-Sinai Medical Center recently found the app to be the highest rated symptom and PRO tracker for cancer patients.
“This speaks to the fact that Wave is easy-to-use, while also providing real, tangible benefits to the patient journey. In addition to being rated the highest overall PRO tracking app, Wave also received the highest individual scores for both engagement and aesthetics, two very important pillars for any type of user experience. Since the review in 2020, Wave has also done a complete UI/UX redesign. With a more intuitive interface and new features that make health tracking even easier, the experience of using Wave is only getting better,” explained Claudia.
How Wave expanded beyond the cancer community
Beginning exclusively as a cancer app, Wave was expanded to serve all chronic illnesses because of the underlying challenges that patients face regardless of their specific health issue.
“The nature of most treatments is that they are standardized — protocols shift only after periods of trial and error. Wave identifies relationships effectively and quickly, so that treatments can be tweaked, and side effects can be alleviated or avoided more promptly.”
Another key focus of Wave is on filling the gap between doctor’s visits. Most of the patient experience occurs at home, not in the doctor office, and currently there is no sufficient system or way for patients to easily report their symptoms and other outcomes during these critical periods.
“Wave helps patients fill in their care team, whether it’s about how their symptoms have been improving or how many days they’ve missed their medications. With a comprehensive record of patients’ daily and treatment activities, doctors have a more complete picture of the patient and their journey and are enabled to make more-informed decisions from there.”
Wave can help anyone
You also don’t have to be “chronically ill” to use Wave and see its benefits. Tracking and getting Wave’s A.I. insights can help anyone improve how they feel. Wave is a health management tool for anyone looking to take control.
“The app empowers patients to take control of their own journey. Just by harnessing their own daily health data, they can get powerful information into what helps them feel better or worse and then adjust their at-home activities to optimize their wellbeing. Second, Wave helps patients communicated better with their doctors on what they’re experiencing between visits. Patients can share/email their logged data directly through the app, or they can receive easily shareable Wave Pro PDF reports,” said Claudia.
How Wave Pro Works and a 6-month FREE discount code
The reports summarize a patient’s important health data and insights from the week, allowing them to see both short-term and long-term trends and changes. Users can download these reports and bring them into their doctor’s visits. Wave Pro is available through a monthly ($10.99) or annual ($54.99) subscription, with a free 30-day trial at sign-up.
Enter the code LIGHTS right away at sign-up and receive 6 months of FREE Wave Pro reports.
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!
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.”
“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
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.
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.
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.
As the weeks of war go by in Ukraine, our IBD patient advocate extraordinaire, Elena Skotskova, continues to do all she can to ensure those with Crohn’s disease and ulcerative colitis are feeling supported in the face of the unknown. Elena and I have become pen pals of sorts over email. A world away. Our worlds so different. But our understanding of what it’s like to live with IBD very much the same. Here’s Elena’s latest update sent April 13th, 2022. She remains about 30 minutes outside of Kyiv at her mother in law’s home.
Dear Natalie! Now we are engaged in the distribution of humanitarian aid, which came to us from Dr. Falk (a German pharmaceutical company). I want to share with you the information about helping Ukrainian patients with IBD. Ever since we received the medicine from Dr. Falk we did a great job: 1. We sent medicines to 12 hospitals in different cities of Ukraine, where patients with IBD are treated; 2. We have collected more than 400 applications from patients who currently do not have the opportunity to go to their doctor. 3. We have sent more than 200 packages of medicines to patients throughout Ukraine who do not have access to a doctor 4. There are still about 200 parcels left to send, and I think we can do it before the end of the week.
We have received a large number of letters of thanks from patients who have received medications. We tried to ensure that all patients had enough treatment for at least two months. Earlier we received two parcels from our Greek friends, which were sent via Poland. Everything that was in those parcels (medical food, colostomy bags, medicines, etc.) we distributed to patients and hospitals.
On Monday, April 11, we got a big package from Estonia with colostomy bags and stoma care products. We also send colostomy bags to patients who need it.
I have a lot of work now, and I am constantly in touch with patients. We have a lot of requests from patients from different parts of Ukraine. Particular pain is the regions that are occupied by Russia. It is impossible to deliver medicines there, it is impossible to help patients. I hope that someday they will be able to get out through humanitarian corridors, and then they will receive medical assistance.
This is Galina, our volunteer, a doctor who herself sent more than 300 packages of medicines to patients. She lives in Lviv, where humanitarian aid comes from Europe. This charming lady herself takes heavy boxes, sorts them, forms packages, and sends them out to patients. She does this at night 🙂 And during the day she treats people. I am very grateful to her, she is an irreplaceable person in our team.
I also wanted to share information with you we set up on our “Full Life” site that gives people around the world the ability to make donations using credit cards. You can do it from the link https://www.gofulllife.com.ua/donate/ Scroll down and click the: “Help the project” (Допомогти проекту) button. Once there, you will be directed to choose a currency. (USD or EUR, depending on which currency the credit card supports) and write the sum.
The money raised will be used to buy medical nutrition for children with IBD and to buy medicine for IBD patients who have lost their jobs and incomes.
My husband and I are going to go to Kyiv on Saturday (April 16). We need to meet the humanitarian cargo from Lviv. And also, I need to deal with colostomy bags that came from Estonia and send them to patients.
Many people are already returning to Kyiv, I hope that my hairdresser will also come back and cut my hair 🙂 During the war, it is a great happiness for us just to get a haircut or get medicine. We have such small military joys.
When Stacey Collins was diagnosed with ulcerative colitis in 2012 at age 21, she couldn’t drink water without becoming violently ill. She remembers asking her GI immediately after diagnosis, “What can I eat?” out of desperation and sheer exhaustion. His response? “Whatever you want. Since you are anemic, you should eat more red meat and drink some dark beer. Enjoy college. You’re young. Live your life. Diet has no effect on these diseases.”
Ding. Ding. Ding. That monumental conversation in Stacey’s patient journey transformed her career direction and inspired her to focus on the relationship diet has with IBD.
“I didn’t feel like he heard me. I knew how food felt in my body, and it certainly didn’t feel like it was inconsequential. This led me to seek out [what I had no idea was] misinformation and too many self-directed elimination diets, but this resulted in an ever-evolving interest in nutrition, and eventually, I enrolled in graduate school and became an IBD Dietitian.”
Stacey knows all-too-well how common food restriction is thanks to the anxiety that often accompanies the hard moments of life with IBD. She’s been on a mission to search for how we can eat MORE and live more fully with these diseases. But mostly, she wants to be a resource she never had. Stacey is passionate about making multidisciplinary resources (especially IBD Dietitians) more accessible to patients.
Prevalence of disordered eating in the IBD community
“Avoidant Restrictive Food Intake Disorder Prevalent Among Patients with Inflammatory Bowel Disease” is a cross-sectional study that surveyed 161 participants with IBD, 14% met the criteria for a very specific type of eating disorder that is emerging from the research to be more commonly to be correlated with IBD: avoidant-restrictive food intake disorder, which is essentially when patients begin to associate food with GI symptoms and omit foods because of symptoms or fear of symptoms (these patients were also found to be at risk for malnutrition). Interestingly, 74% of these participants were found to be avoiding foods even in the absence of GI symptoms. It’s important to note that this screening tool hasn’t been validated in research especially for patients with IBD, but there are studies underway that are using screening tools tailored to the IBD patient community.
“Assessing for Eating Disorders: A Primer for Gastroenterologists” found that close to 1 in 4 people with IBD develop an eating disorder. There seems to be a bi-directional relationship between GI symptoms and eating disorders because of the “starvation brain” that comes from eating disorders, were maladaptive disorders happen from a prolonged period of restriction, really highlighting the need for better malnutrition screening and working with mental health professionals and IBD dietitians to collaborate with GI doctors.
I conducted a poll on Instagram asking the IBD community: “Do you have a complicated relationship with food?”…89% of people who responded said yes.
“Eating disorders and disordered eating are a bit different. Disordered eating isn’t a diagnosis; it’s on the spectrum between normal eating and an eating disorder.”
The damaging effects of malnutrition
Malnutrition has been shown repeatedly in research to lead to poor clinical outcomes, poorer prognosis, poorer response to therapy and, therefore, a decreased quality of life, so it’s important that this be avoided if possible.
Stacey explains, “A state of active inflammation/disease will demand more energy of the body, so restriction is so often not the answer to control inflammation. This review of the literature from 2020 cited research that malnutrition in hospitalized patients with IBD may be as high as 85%. A retrospective nationwide study in 2008 highlighted the prevalence in hospitalized patients with IBD with non-IBD patients who were hospitalized with benign disease and found it to be much higher (6.1% and 7.2% versus 1.8%; statistically significant).”
Malnutrition can be a complicated diagnosis to land on, because it takes several factors into account, but in IBD it results from:
Decreased oral intake common in active IBD
Maldigestion, malabsorption, enteric loss of nutrients, rapid transit
increased energy needs with inflammation or infection, adverse effects of medical therapy
Stacey’s advice for the IBD community regarding nutrition
General ideas to keep in mind for how someone with disordered eating behaviors might start to shift their relationship with food.
If you’re struggling with feeling a loss of control around certain foods, try to assess your hunger level before you experience that dizzying feeling of ravenous consumption.
“If your hunger is often 8-10 on a scale of 1-10, try supporting your body by finding snacks that feel good in your body to have throughout the day, or eating more at your meals when you are able to eat. Work to avoid skipping meals, especially if you have active disease.”
Instead of a lack/fear/restriction mindset, you can begin to switch this to a mindset of abundance by simply making notes (in the app on your phone) of foods that feel good and healing in your body. Jot down restaurants that are accommodating to dietary requests or have especially great bathrooms.
“It takes time but training your body and mind to seek out foods that feel good can make a difference in your stress levels. The notes app has been especially helpful for me when I’ve been too tired to remember which foods I like, or when I’m quick to skip a meal to go to bed. If you find that this is a really challenging exercise after a couple of attempts, don’t hesitate to reach out to a dietitian for support!”
Lastly, try not to moralize foods: good vs bad; clean vs dirty. These are often labels given to foods by society and not by science. Instead, work to tune into the experience of eating and how food feels in your body.
“Food is so much more than calories in/calories out; it’s cultural, social, celebratory, mundane, and even socioeconomic. The joy of eating is important to life, and when we start to moralize foods, this often creates rules around food that are unsustainable for life’s variability. Work to instead shift the focus to overall food patterns vs hyper-focusing on labeling ingredients.”
The red flags caregivers can watch out for
Stacey says frequently skipping social events, eliminating entire food groups, and talking a lot about food can be signs of disordered eating.
“A lot of these behaviors are praised by society as “oh they’re so disciplined!” and can be tricky to spot sometimes. Simply asking your loved one, “What sounds good?” and if they’re really struggling over time to answer this question, then reaching out to a dietitian for support. For caregivers, I cannot stress enough the importance of avoiding any body comments, good or bad. Steroids are hard; we get puffy. We lose weight when we aren’t doing well, and often this is when people are quick to validate us externally.”
Bodies are dynamic, and all bodies are always changing, and sometimes ours with IBD changes more dramatically compared to a lot of other bodies without IBD. Instead, affirm your loved-one by simply spending time with them, or telling them what you value about their personality.
Three surgeries, multiple medications, and a j-pouch later
Since her diagnosis, Stacey has been on Remicade, multiple mesalamines, steroids, Inflectra (biosimilar), Entyvio, Uceris, Xeljanz, Imuran, Stelara, and Humira.
On my 10th colonoscopy in the height of the COVID-19 pandemic, she was told she needed to start thinking about surgery.
“I always thought surgery was a last-ditch effort and worst-case scenario, and I struggled to accept this reality, but then I thought, “if there’s ANY chance that life on the other side of surgery is better than it is right now…I can do it.”
In 2021 Stacey had three surgeries and she’s now 7 months post-op from her takedown surgery. She is grateful for the surgeries and thrilled to be finding a new quality of life. Having a J-pouch has changed her relationship with food.
“Initially, I was worried about my limited diet since foods can take time to add back in, and I had to intentionally approach this transition with so much tenderness and compassion. “It takes as long as it takes,” is a post-it note that’s on my mirror to remind me that if I can’t tolerate a whole salad today, my body is still learning, and it takes time! As time lapses, I continue to learn that I really can trust my body, and she’s happiest when I keep her well-fed and hydrated. J-pouch life has granted me much more liberation around food than I was ever able to experience with UC, and I’m grateful for that.”
Since IBD is a GI disease and everyone needs nutrition to survive, EVERYONE has an opinion. So many misconceptions about food/diet in IBD are rooted in the stigma of the disease itself (people trying to avoid meds or surgeries at all costs; people trying to control GI symptoms).
Most common food-related misconceptions:
food needs to be eliminated to control inflammation
low fiber diets are needed for everyone with IBD
dairy and gluten should be avoided at all costs
Getting help and treatment for disordered eating
Since food restriction is anxiety-driven, it can be difficult to self-heal from disordered eating (since anxiety isn’t a choice). Stacey highly recommends a multidisciplinary approach from the support of GI-psych or a counselor with a registered dietitian who specializes in IBD.
Stacey is a virtual IBD RD. She recently announced an exciting collaboration called “Romanwell” (Instagram: @weareromanwell) with fellow IBD RD, Brittany Roman-Green, who is a well-respected patient mentor. Romanwell is a virtual IBD nutrition private practice and an amazing new resource for our community.
“We both genuinely love helping people through their IBD journey. We both know what it’s like to need support learning to trust our bodies as we navigate all the nutrition noise, and we’d like to think that lends well to helping us approach patients from a place of empathy.”
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.
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.
With mask mandates ending for most states across the country and the CDC once again changing its guidance about masking, it’s a cause for concern for many who are immunocompromised or considered higher risk for Covid-19. As an immunocompromised mom of three kids under age 5, I feel a bit uneasy about the shift in measures, even though I had Covid-19 in January. I contacted my GI this week to ask her opinion on the mask mandates lifting and navigating this time as an IBD mom. She didn’t hesitate for a second and told me to keep masking—not only for myself but because of my kids. She herself hasn’t stopped masking in public and doesn’t plan to anytime soon.
I polled my followers on Twitter and Instagram by asking: “Do you still wear a mask in public, indoor spaces?” Nearly 500 people responded. On Instagram, 69% responded “yes” to still wearing masks and 31% responded “no”. On Twitter, 88% responded “yes” and 12% responded “no”.
This led me to dig a bit deeper and hear what several top gastroenterologists who specialize in inflammatory bowel disease had to say on this controversial and politicized issue.
Dr. Aline Charabaty, MD, Assistant Clinical Director of the GI Division at Johns Hopkins School of Medicine, and the Director of the Inflammatory Bowel Diseases Center at Johns Hopkins-Sibley Memorial Hospital, offered several fantastic analogies for the IBD community. The one that really hit home to me was talking about family planning and remission in Crohn’s and ulcerative colitis. If you are flaring and want to start a family, the rule of thumb is to be off steroids for at least six months to ensure disease activity is calm. We JUST got through the rampant spike in omicron cases last month. In her opinion, going maskless this soon after that highly contagious variant is premature. She believes we need to wait longer to make sure we are out of the woods and that conditions need to be more stable for a longer period of time. Until then, she recommends those who are more susceptible in the IBD community continue to mask as an extra safety net.
“We are not out of the pandemic. Sure, there are less deaths and fewer severe cases, but people are still getting sick. We saw this happen when we let our guard down and delta hit…then omicron. When you are driving, you wear a seatbelt, follow the speed limit, try not to tailgate, and follow the rules of the road. These are all precautions to drive safely to your destination and avoid an accident. You don’t just do one thing to prevent a car accident. With Covid, we got the vaccines, we’re wearing masks, we’re limiting exposure to large crowds, and measuring risk versus benefit for each of our decisions. It’s not a pick and choose situation of how to keep ourselves and others out of harm’s way.”
Dr. Charabaty went on to say why get sick with something when we really don’t know the long-term effects. We already see Covid can cause a higher risk of depression, heart disease, and autoimmune issues.
“Wearing a mask is such a simple measure. If it adds a benefit, I don’t see why people are saying no to this. This virus can really change your body. Why not add another layer of protection to prevent illness? There are no downsides to wearing a mask, so why not wear it? When you are out and about there are people with weakened immune systems, cancer patients, organ transplant recipients, people on multiple IBD medications…why put these people at risk of infection? The more Covid is transmitted, the higher the risk of mutation, which will cause yet another spike. Each variant has been a result of people letting their guard down to soon with their decision making.”
Dr. Neilanjan Nandi, MD, FACP, Associate Professor of Clinical Medicine, Gastroenterology, Penn Medicine, agrees that while case numbers going down is reassuring, that we are not out of the woods yet. To him, a mask is a sign of empathy for others.
“It’s not about us…whether it’s a caregiver or a family member or friend, this shouldn’t be looked at as an encroachment on our freedom, but rather about showing respect for those around us. The best thing we can do is mask up. Wearing a mask in public, indoor spaces is a smart move because you don’t know the immunization status or exposures of people you don’t know. If you are planning to see family or friends and know people’s vaccination status or if they’ve recently had Covid, you might feel more comfortable not wearing a mask.”
Dr. Nandi reiterated the fact that we’ve learned over the course of the last two years that most of our IBD medications don’t cause an increased risk and may even be protective. While this is reassuring, if you are on 20 mg of prednisone or higher, he highly recommends you mask up as you are more susceptible to illness.
Dr. Uma Mahadevan, MD, Professor of Medicine, and Director of the UCSF Colitis and Crohn’s Disease Center, says every region of the country is different and that your location should be taken into account.
“In the Bay Area we have a high vaccination rate and a low hospitalization rate. You also have to consider the patient’s personal risk and risk aversion.”
Here’s what Dr. Mahadevan tells her patients.
Follow local guidelines for masking
If you are vaccinated and boosted and are in a low-risk area with no mask mandate, its ok to not mask, particularly outdoors. Indoors in crowded shopping areas, etc., I would still consider masking. However, again, low risk patient in a low-risk region, it’s ok not to mask.
For high-risk patients on steroids, double biologics, severely active disease, etc. I still recommend masking.
Dr. Miguel Regueiro, MD, Chair, Digestive Disease and Surgery Institute, Chair, Department of Gastroenterology, Hepatology & Nutrition, Cleveland Clinic, is hopeful we’re headed to what we see with influenza. While of course flu can still be serious and deadly, with enough people vaccinated and exposed to Covid, we can have herd immunity.
“We’re all learning as we go and there’s a lot of “grey” with nothing very “black or white.” For now, I am recommending IBD patients continue to mask. For those who are immunocompromised, wear a mask in indoor spaces, especially crowded spaces such as airports. In outdoor spaces, it is less clear, but masks are probably a good idea when social distancing is not possible.”
Dr. Peter Higgins, MD, Ph.D., M.Sc., Director of the IBD Program at the University of Michigan, says if a person is unvaccinated, masks are a must. He encourages you to talk with your doctor about Evusheld, a monoclonal antibody against Covid-19 for immunocompromised people and those who cannot be vaccinated for medical reasons.
“If the county you live in is below 10 cases per 100,000 people (CDC is saying 200/100,000 for the non-immunosuppressed), then you can consider not wearing a mask. But admittedly, this is an arbitrary number and 200 cases for every 100,000 people seems too high for the immunocompromised population. Especially if you are around kids, the elderly, or those who have not been able to be vaccinated, showing solidarity and wearing a mask is highly recommended.”
He explained that eating indoors with good ventilation is OK, but that is it hard to prove unless you have a CO2 monitor that can show a consistent CO2 ppm (parts per million) < 650. To give you an idea, Las Vegas casinos have good ventilation systems in place to keep restaurants free of smoke and those measure between 400-450 ppm. Dr. Higgins still recommends people do a rapid test within 12 hours of gathering with friends and family. He adds that as we learn more about long Covid and new variants guidance may once again shift.
Dr. Harry J. Thomas, MD,Austin Gastroenterology in Texas, also recommends patient who are immunocompromised (especially those on anti-TNF’s, prednisone, and other immunosuppressants) to mask up.
“I empathize with people who are worried about being judged by others and I recommend that they share — if they feel comfortable — that they (or their family member) have a chronic disease that places them at higher risk. I do feel that abandoning masks right now is premature, especially here in Texas as well as in other parts of the country with lower vaccination rates. I’m not sure if/when there will be another spike, but we still have about 2,000 COVID deaths each day which is really tragic and indicates that the pandemic is far from over.
My personal take
Personally, my husband and I still wear masks in public, indoor spaces. Our children who are in preschool are one of the few who are still wearing masks at their school. While I understand each person has the right to make their own personal decision for themselves and for their families, it’s disheartening and honestly disappointing to see the lack of care for others who are not fortunate to have the luxury of being healthy. I can’t tell you when I’ll feel safe enough to go into a grocery store or the mall without a mask on, it’s going to take time and assurance from my care team that I’m not making a rash decision that could put myself, my family, or even strangers at risk. It’s complicated. I get it.
When you’ve lived with a chronic illness like Crohn’s disease for nearly 17 years and been on immunosuppressive drugs ever since, your perspective shifts. You quickly realize you are not invincible. You recognize and empathize with those who have health struggles and depend on the greater good to make sound decisions. It’s a small act of kindness for the sake of health and safety. Talk with your care team about navigating this new normal. Don’t base your judgements on social media, the news, or your political beliefs. This is an ever-evolving discussion. It’s been a long two years. We’re all tired. But that doesn’t mean apathy is the answer. You may not care, but you are making a statement to those who are vulnerable when you go maskless indoors.
It’s ok to be unsure. It’s normal not to want to be judged or feel your kids will be outcasts if they’re the only ones at school masking. It’s understandable to feel a bit lost about what is best. But if a mask makes you feel comfortable, safer, healthier, you do you. Know that the medical community and so many others stand in solidarity with you.
When Marquis Ellison met and began dating his wife, Tasheia, in 1999, they were juniors in high school. The couple tied the knot 13 years ago. One year into marriage, Marquis started to experience weight loss, fatigue, anemia, abdominal pain, stomach cramps, and loss of appetite. He dropped to 100 pounds! They were on an anniversary trip to Los Angeles when his symptoms started to become unbearable. After the trip, Marquis was diagnosed with Crohn’s disease. He was 26 years old.
“Upon being diagnosed, I felt a sigh of relief in knowing what the condition was and starting on the right medications. I owned it and decided to beat it by how I live, educate and inspire others.”
Tasheia has been by Marquis’ side every step of the way. Every colonoscopy. Every flare. Every doctor appointment. He thanks God every day for a wife who truly exemplifies what it means to be a partner in sickness and in health.
Focusing on faith and family
Marquis keeps busy as a husband, father, and personal trainer. He gives all the credit to God.
“Faith is the cornerstone of who I am and why I have the outlook I have with Crohn’s. If God wants to completely heal me, I know He can. But if not, I know He’ll give me the strength to endure and I’m at ease with that. There’s always a greater good for what we go through and if my journey living with Crohn’s disease can inspire and encourage others, all praise to the Most High!”
Since becoming a father three years ago, Marquis says his faith and his son are his “why” …why he’s so enthusiastic about doing all he can to take care of his body and controlling what he can.
“Being a dad is the greatest gift and blessing. Knowing this little person is your responsibility. I want my son to see that while I have IBD, I don’t let it stop me and set the example he can follow when faced with life’s unpredictability. My son witnessed me running the marathon cheering me on at mile 22 and the finish line. When we got back home, he wanted to wear my medal. I asked him if he wanted to run a marathon in which he replied, ‘yes’. That was a great feeling knowing I’ve inspired my son despite my condition.”
Shout out to IBD men
When you hear about people’s IBD journeys, it’s more common to hear from women, even though Crohn’s disease and ulcerative colitis impact genders equally. Marquis wants men to recognize they are not alone and to speak up and tell their stories.
“Your story matters. Your voice matters. Speaking about your health and opening up doesn’t make you any less of a man, it only enhances it.”
As a Black man, the lack of representation, and health disparities, span far and wide. Marquis wants you to know you are not alone in your struggles.
“Our voices matter. The more we advocate, the more we’ll show that Black and Brown communities are affected with IBD and should be represented more often. I’m proud to be an ambassador with Color of Crohn’s and Chronic Illness (COCCI), where we’re working to bridge the gap and lack of representation.”
Running for a reason
Marquis recently completed the New York City Marathon in November. He says it was the toughest and most victorious accomplishment he’s ever experienced. His race shirt read, “Mr. Crohn’s Fighter” to represent all IBD warriors and show that you can still do remarkable things, despite your disease. Life with IBD is a marathon, not a sprint. That mentality prepared Marquis for the race.
“Living with IBD is unpredictable. The unpredictability of a flare up or foods not agreeing with you always feels like something is looming. When running, you never know how the course or weather will be. You can train hills or in the rain, but you may still face adversity you didn’t prepare for. With running and with Crohn’s disease, it’s all about mindset and the ability to adapt and repeatedly overcome. Focus on your current reality and not on what hasn’t happened or what could happen.”
He’s currently training to run the New York City Half March 20th, 2022.
Focusing on what you can control
Marquis manages his IBD through fitness, nutrition, mindset, and by taking Cimzia, a monthly self-injection. He’s all about controlling what you can and not succumbing to your circumstances.
“Life is 20% of what happens to you and 80% of how you respond to it. I choose to focus on the 80% by controlling what I can. I always say, I have Crohn’s disease, it doesn’t have me. IBD may try and take me down, but it will never knock me out.”
Pregnancy and motherhood look differently for women who have an ostomy. And not just physically. But also, emotionally, and mentally. The path to motherhood is unique for those of us in the IBD community and we’re living at a time when more research about pregnancy and breastfeeding is right at our fingertips, all of which sets IBD moms and moms-to-be up for success.
Whether you’re on the brink of needing an ostomy and fearful of what this means for your future. Whether you’re a mom of a young girl and worry about whether your daughter will ever be able to be a mom. Whether you’re newly diagnosed and can’t imagine your damaged body bringing a life into this world. Whether you just took a pregnancy test after a bag change and can’t believe it’s positive and don’t know what to do next. These transparent and real-life patient stories will bring you hope and help empower you in coping, preparing yourself, and working with your care team, if carrying a baby is something you hope to do one day.
This week we hear from several ostomates—some who are moms, others who are pregnant right now, and two women who got pregnant after having a proctocolectomy (removal of rectum and colon).
Krista Deveau was diagnosed with ulcerative colitis as a child. After having two bowel resection surgeries and her ostomy surgery over the course of 10 years, she was worried about whether being a mom would ever be an option.
“The reason for getting a temporary ileostomy and avoiding even more scar tissue, was because of I wanted to start a family with my husband in the years to come. To my surprise and my GI’s surprise, we got pregnant much easier than expected, truly a blessing because this isn’t always the outcome for everyone.”
She’s now 24 weeks pregnant and expecting her first baby in June! Krista says this is the best she’s ever felt. Her symptoms have been silent aside from having phantom rectum/poop and passing mucus more frequently lately.
Krista is on a dual biologic treatment plan (Stelara and Entyvio) every 4 weeks. She plans to stop her Entyvio treatment at 32 weeks and resume her infusion in the hospital after she delivers. She’s still in the process for determining her game plan with Stelara. She also takes prenatal vitamins, vitamin D, and b12 shots. She expects she’ll need iron infusions before baby arrives.
As of now, she plans to do a vaginal birth. Due to not having perianal disease and already having significant scar tissue and adhesions from previous surgeries, her care team determined this plan with her. Like any IBD mom-to-be, she worries about the ever-present threat of a postpartum flare, having to be hospitalized and be away from her baby, and possibly passing her disease onto offspring.
Katie Cuozzo was diagnosed with Crohn’s disease when she was 5 years old. She’s had concerns about not being able to get pregnant for as long as she can remember. Now, she’s 34-years-old and a mom of three girls. Her oldest daughter was 18 months old when she received her ostomy, so she’s been pregnant with and without a bag.
“The only difference that I noticed between pregnancy with an ostomy versus without was how to dress. As my stomach was getting bigger, it was a little harder to disguise my bag. I would mostly wear baggy clothing. With my first pregnancy, I was able to deliver vaginally, I had c-sections with my younger two.”
Katie’s perianal disease got significantly worse after delivering her firstborn. Originally, she was planning to have a temporary colostomy, but her symptoms didn’t improve so she decided to get a total colectomy. Despite her IBD causing her so many issues, Katie was able to conceive on her own without any problems.
She remained on her medications during all three pregnancies. She took Cimzia during her first pregnancy and Stelara during her other two pregnancies. Katie also continued to take her prenatal vitamin, vitamin D, vitamin b12, and calcium supplements. She also breastfed all her children.
“As I was planning for ostomy surgery, my surgeon told me that if he did a total proctectomy- removal of my rectum, my chance of fertility would decrease significantly. I made the choice to keep my rectum in place until I was done trying for more kids. I am now at a place in my life where I am beyond blessed with my three daughters and am ready to have my final surgery to remove my rectum, knowing that I will likely never be able to have more kids.”
Katie says she was amazed at how great she felt while pregnant. It was the first time in a while she was having regular, normal bowel movements and was able to eat anything and everything without having abdominal pains and needing to run to the bathroom.
Katie Nichol was diagnosed with ulcerative colitis in 2018 when she was 30 years old. She went through an emergency subtotal colectomy surgery in October 2019 to remove her diseased large bowel/colon and an ileostomy was created.
“I was told that I would keep my rectal stump to further my chances of being able to have children in the future, but my doctors told me to seriously think about having my family before my next operation, either a total proctectomy or j pouch surgery. Personally, I never thought I would ever be able to get pregnant after surgery as it was such a big life change and a lot of trauma had happened in my abdomen with surgery.”
Katie and her husband had been trying to conceive since before her IBD diagnosis. She didn’t know anyone in real life with a stoma. It made her anxious as she was unsure how her body would respond if she got pregnant and how it would affect her stoma, intestines, and overall health.
“After receiving my ileostomy, I felt so much healthier, happier, and started to think that my body would be able to conceive and start our family. My IBD team and surgeon kept saying at appointments post op that if I wanted a family I would need to start trying in the next couple of years before my next operation.”
Katie says her surgeon wanted to ‘preserve her pipes’ and advised her that a vaginal birth may cause some damage from pushing. Her care team warned her about the possibility of her rectal stump or stoma having the chance to prolapse, so she went ahead and scheduled a c-section.
“One surprise I used to get was when the baby was lying to my stoma side (right hand side) it would sometimes look like I had a hernia around my stoma sight, but the baby was underneath my stoma, this freaked me out a good few times, but it was amazing to see the baby move and my stoma still standing strong on my stomach.”
Katie took prenatal vitamins, iron, and was on a rectal foam for her rectal stump while she was pregnant. Since her stoma surgery, she is no longer on medication. Now she takes suppositories for her rectal stump before bed.
Receiving a Total Colectomy as a mom of two
Kimberly Hooks was diagnosed with ulcerative colitis in 2011. She was 28 years old. Her oldest daughter, Briana, was five years old when Kimberly received her IBD diagnosis. After nine years she was able to reach remission and became pregnant with her second child. Kimberly had a three-stage J-pouch procedure between the fall and spring of 2020. She was an IBD mom of two while all of this was going down.
“I honestly did not want to accept that I had to have three surgeries. I was utterly devastated when I found out that I had to have a total colectomy. My surgeries were scheduled during the height of the pandemic in 2020. Mentally, I could not wrap my head around the fact that I would not be there for my family, especially during this critical time in our lives. I felt hopeless; I felt defeated as a mother and wife.”
Kimberly’s colectomy was unexpected. She did not have time to process anything.
“We often put ourselves last; however, I was not given a choice in this case. The reality was I had two more surgeries to undergo, and I understood that I have a family that loves and supports me. I realized this was my time to ensure that I did what I had to do to heal, recover, and finally be the best mom and wife I could be.”
The experience impacted Kimberly and her family in the most positive way. Her husband and daughters rose to the occasion day after day to offer love and support and saw Kimberly as their hero. She was discharged from the hospital after getting her ostomy on Mother’s Day and her daughters made her signs and gave her flowers.
“All the while, it was me who had to accept that living with an ostomy is something to be proud of. At first, mentally, it was a hard pill to swallow, but after awhile I realized that my ostomy bag saved my life; I will be forever thankful!”
Pregnancy after a Proctocolectomy
Kayla Lewis was diagnosed with Crohn’s disease at age 10. When she was 24, Katie had surgery and received her ileostomy. She says that’s the first-time fertility and her future as a mother crossed her mind. Then, in 2017 she became incredibly sick. She tried what she thought was a temporary ostomy for six months. Then in a follow up scope her GI perforated her bowel.
“When I woke up, I was informed that my entire colon was scar tissue so much that the camera could barely go into the bowel before perforating it. At that point, I was told my options were to leave the colon and rectum or schedule to have both removed, but either way, the ostomy was suddenly permanent. I did not want to resort to that initial surgery till I knew I had exercised all other options available to me including meds, treatments, and diet. Being that surgery was my only hope at gaining life back, I never fully questioned how it would affect my fertility. I did briefly ask the surgeon if I can still have kids one day. He responded with a simple ‘yes’ and I left it at that.”
Even though Kayla says she still would have continued with her proctocolectomy regardless, she wishes she would have thought to ask more questions. Thanks to her ostomy, Kayla has been in remission for 5 years. She felt like family planning could be on her own terms.
“Being 12 weeks pregnant with an ostomy has been much smoother than I had envisioned for myself. I work as a nurse in an operating room, so feeling nauseous and vomiting was my biggest concern early on. I have a small body frame, so maybe once the bump starts to show, I will experience stoma changes. Hopefully, nothing more than just cutting the wafer a bit smaller or larger.”
Currently, Kayla takes Imuran and Allopurinol daily and injects Stelara every 8 weeks. She also takes a prenatal vitamin.
“I was always told that when the time comes for me to become a mom, it would have to be via c-section and not vaginally. I knew this well before my ostomy, because I was warned how difficult it could be for me to heal from tearing as well as could trigger a flare. After my proctocolectomy, I knew without a doubt, I would need to schedule a c-section to play it safe.”
Lori Plung was diagnosed with Crohn’s Colitis in 1980. She was 16 years old. Two years after her diagnosis her disease became severe. As she reflects, she remembers being very worried about ever being healthy enough to be a mom.
“My mom was told by my GI at the time that he didn’t have a good feeling about me being able to have children. This was not shared with me at the time, and this was well before surgery was mentioned to us.”
In 1988, Lori had a proctocolectomy. She remembers lying in the hospital bed before her surgery and a local IBD mom and her toddler coming to visit and show her all that’s possible with an ostomy.
“I believe what was missing, was a conversation with my doctors about how my anatomy would change after surgery and the possibility of scar tissue building up near my ovaries, fallopian tubes, and uterus. Therefore, making it harder to conceive. When it was time for us to try for a family, we couldn’t conceive on our own. In the back of my mind, I knew my insides were shifted around and I had a strong suspicion that mechanically things were not working correctly. We tried for about 6 months and started investigating fertility options. We didn’t wait the full year as often recommended because I was feeling well —and as we know with IBD, when the disease is under control, It’s the optimal time to be pregnant.”
Lori went through many fertility treatments and said no one blamed her proctocolectomy as the culprit. She ended up having scar tissue on one of her fallopian tubes. She got pregnant with her first child through IUI (Intrauterine insemination) and her second through IVF.
She remembers telling her husband she didn’t want their kids to have memories of growing up with a “sick mom.” She had three more IBD-related surgeries, numerous hospital stays, and says her energy was drained, but she prided herself on her inner strength and determination to always push through no matter what.
Lori says if she could talk to her former self, she would tell herself not to feel guilty about needing to stay home and do quiet activities because she was having a hard Crohn’s day.
“Not to be hard on myself when we sat and watched Barney (my daughter Dani’s favorite) or Teletubbies (my son Jesse’s favorite) because I was too exhausted to move. Not to feel guilty when everything fell on my husband, especially through each surgery and recovery. It’s ok to ask for help and not feel guilty.”
Lori’s kids are now 23 and 26. She still can’t believe she’s been able to be a mom and be there every step of the way as her kids thrived through each stage and season of life.
Advice for fellow ostomates about pregnancy
If you have an ostomy, you can have a baby. Don’t let your ostomy hold you back. Work with your care team to know when the right time is and if there would be any issues with getting pregnant.
The body has a way of coping no matter what. Your past trauma prepares you to handle the unknown and celebrate every win—big or small, along the way.
Keep the faith. You may run into roadblocks but exhaust all options before you throw in the towel. Miracles happen every day, stay hopeful.
Find a care team well-versed on IBD. A medical team who understands your complexities and who is supportive will make your experience with pregnancy and an ostomy a positive one. Have all hands-on deck and connect with your IBD team, surgeon, ostomy nurse, and Maternal Fetal Medicine (MFM) group. It will give you a sense of security as you embark on this wonderful and exciting adventure. Your ostomy nurse will be a huge resource—as your belly grows, so will your stoma.
Be mindful of ultrasound gel. Be prepared at OB-GYN and MFM appointments by bringing extra bags and wafers. Try and make sure your ostomy is empty prior to ultrasounds and then fold it up or hold it up to keep it out of the way. Ultrasound gel can make the adhesive come off. Many of the IBD moms I spoke to said they change their bag after every ultrasound to make sure all the gel is off their stomachs, so the new bag can stick on properly.
Stoma size and output. Don’t be alarmed if the size of your stoma changes as your baby bump grows. Stomas go back to their pre-pregnancy size after babies are born. For some, output can get thicker, and you can have more gas, but that’s likely due to being able to tolerate more fruits and veggies. As your belly grows, your bag may dangle rather than being tucked away and become a bit uncomfortable.
Remember everyone’s journey is unique. While each of these amazing women are sharing positive pregnancy experiences, don’t forget all the roadblocks, flares, and health issues they had to overcome to get to this point.
Ostomies gave you life and enable you to bring life into this world. For many IBD moms it’s surreal to experience your body go from attacking itself to nurturing and creating a life. Pregnancy provides a renewed love and appreciation for all that our bodies are capable of, despite our IBD.
Connect with other ostomates over social media and through support groups. Don’t hesitate to reach out to women who are living your same reality on social media. We’re all a family. Peer to peer support is amazing, reach out to fellow IBD moms. Here are the Instagram handles for the women featured in this article. Give them a follow!