Category: Diet + Lifestyle

The Patient Experience: Making the Leap from Pediatric-to-Adult IBD care

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Moving away for school. A future career. Relationships. Discovering your identity. Switching from a pediatric IBD care team to adult providers. All while living with a chronic illness. This is the stark reality for young adults living with Crohn’s disease and ulcerative colitis. Juggling all these major life milestones and having to get acclimated to new physicians while taking the lead on disease management is often met with anxiety and worry from young patients, their parents, and caregivers. IBD is a family disease. Even if only one person in the household personally lives with the issue, the disease impacts each person.

This week on Lights, Camera, Crohn’s we hear from patients and caregivers who have lived through the experience and from pediatric GI’s about how best families can be supported through the changes to make them as seamless as possible for everyone involved.

Input from those who have made the switch

Aging out of pediatric doctors can be a stressful time for everyone involved. Let’s start with input from those with IBD who have made the switch along with what some parents and caregivers had to say.

  • Start researching doctors early. Do your homework and see what insurance providers accept and what hospitals they are affiliated with.
  • Ask your current pediatric doctors for recommendations/referrals.
  • Before the first visit make sure the adult GI has received copies of medical records.
  • Have healthcare proxy and power of attorney papers on file.
    • “I just turned 20, but I’m still in pediatrics and plan on staying until I graduate from college, as that is the norm at my hospital. However, as an adult in peds, I found it important to have healthcare proxy and power of attorney papers on file so my mom can still help me and if something were to happen like while I’m away at school she is able to get information. I broke my arm this past fall and my body went into such shock that I couldn’t give the hospital any information. My friends were with me and contacted my mom, but because I was 19, the hospital couldn’t even confirm to her that I was in the building. This was a wake-up call. We started thinking about, “what if this was my IBD?” and decided it was necessary to have the papers on file just in case. I still ask my mom to be involved in my care, but we both have the understanding that I have the final say.”- Anna

Navigating the switch through college

Heidi was diagnosed with Crohn’s when she was 9. She’s now 41. When she reflects on the transition from a pediatric doctor to one who treats adults, she recalls the process being fairly simple and a change she welcomed with open arms.

“The best thing was being talked to directly and my opinions mattered more in my later teenage years with the new doctor. Of course, my parents had my best interests at heart, but appointments were so frustrating as a young girl. Another reason for the seamless transition was that my new doctors were amazing. I switched at 18 and then again at 22 when I graduated college and moved away from home. My care team listened to me and saved my life. I know I’m lucky to have found such a wonderful team of doctors.”

Katie wishes there had been a support group (even online) for teenagers back when she was phased into an adult GI. She says when she was diagnosed with IBD at age 15, she often felt uncomfortable discussing her symptoms and didn’t feel her pediatric GI was that great with kids.

“I felt detached from my GI until I was in my 20s and had the confidence to advocate for myself. I was so lost and refused to tell classmates what was wrong with me for fear of being made fun of. I ended up missing so much school I decided to drop out, get my GED, and go straight to college. It was a terrible time to be honest.”

The difference in pediatric vs. adult care

“The transition happened quite fast as I was being referred to an adult surgeon for my complications that the pediatric team were not experienced or educated enough to treat for Crohn’s. I was thrown in the water with no guidance when I started seeing physicians who treated adults with Crohn’s. The pediatric GI team would dumb some things down for me and make my problems not seem “as bad.” As soon as complications started arising, they threw the towel in and basically told me they couldn’t help me anymore and would be better off seeing a care team with more experience with my symptoms and complications.”-Chrissy

Natasha experienced the transition about 13 years ago. Her pediatric team helped her choose an adult GI. And the guidance didn’t stop there.

“My pediatric GI told me who she wanted for me and then went with me to interview the doctors in the adult team. Once I chose, my pediatric GI attended every appointment with me until we all agreed I was ready to move into the next step of my care, which luckily was quickly. And the two doctors stayed in communication. My advice—be open with your doctor.”

Natasha recommends asking yourself the following questions to help streamline the process and make it less nerve-wracking.

  • What are you looking for in your next step of care?
  • What are you looking for during the transition process?
  • What is important to you in a physician?

Do your own research

“I had an AMAZING pediatric GI when I switched, and I just went with who she recommended. Looking back, I wish I did my research because he is not who I would have chosen for myself. I would recommend doing your own research and make sure whoever you find is willing to work with you and thoroughly go through your medical history and all your results. Too many doctors seem to just think they know everything, but we know our bodies best and need to have a medical team who lets us advocate for ourselves.”-Danielle

Jennie has lived with IBD for nearly 20 years. She has a PhD, works in IBD care, and recognizes she has the privilege of a strong support network and insurance. As an IBD psychologist she recognizes how difficult the system and transition can be for everyone involved.

“I was diagnosed with IBD at 12 and transitioned to adult care around age 18. I was extremely sick at the time and ended up having a proctocolectomy within months of transitioning. I think the biggest things for me were the notable shift in culture between the peds and adult world, and the insurance pieces. It’s so much for kids and families. Lastly. I’ve noticed the transition is nuanced for my parents who were so good at being my advocates, they will still offer to call the doctor if I tell them I am not feeling well, and they have a tough time not having the same significant role they did when I was younger.”

Allie was diagnosed with Crohn’s disease when she was 12. Her mom attended all her appointments until she turned 18, and only stopped going then because she was out of state for college and seeing a pediatric GI there until she turned 22. Allie’s mom kept a medical binder of all her procedures, lab results, and details about her patient journey. She says when she phased out of pediatrics and started taking matters into her own hands, she found the binder her mom made to be beneficial—Allie found herself referring to it when she couldn’t remember everything.

“What helped the transition the most was going to appointments on my own when I turned 18. I felt more prepared to speak for myself when I switched to an adult GI.”

Allie’s mom also inspired her to ask the tough questions. After witnessing how her mom spoke up to doctors it empowered her to speak up and stop minimizing her struggles. By watching how her mom handled appointments, it inspired Allie to write down all her questions and concerns before doctor appointments, so she doesn’t forget anything.

“My mom asked me what fights I wanted her to fight for me and what I wanted to do myself. She guided me on what I might need to ask about when I had no clue—even as an adult she still offers to help call insurance companies to fight authorization battles. She gave me space to live my life when I turned 18. She worried, but she never hounded me for updates (are you taking your medication?, how are you feeling? Are you eating ok?”…but she always conveyed support (both my parents did) when I needed it most she showed up.”

Sari recommends young adults with IBD to ease into taking control of their care as early as possible.

“Things like refilling your own meds, scheduling your own appointments, and driving yourself to appointments goes a long way when it comes to learning how to stay organized and advocate for yourself. You don’t want to be doing all those things for the first time when you go to college or a start a new job—too many scary or unknown things at once!”

Check out what pediatric GI’s have to say about bridging the gap and ensure continuation of care.

Dr. Sandra Kim, MD, Associate Professor of Pediatrics, Director, Inflammatory Bowel Disease Center, UPMC Children’s Hospital of Pittsburgh, says, “Transition is the preparation process while the young adult/teens are still under the care of the pediatric team. Transfer of care is the actual “handoff” when the young adult moves from the pediatric GI team to the adult GI providers. Teens want independence but struggle with disease knowledge and self-management skills. Therefore, the pediatric GI team needs to help the teen (and the family, too!) by being active listeners, communicators, and educators. The healthcare team also should utilize things like transition tools.”

Dr. Kim went on to say that GI doctors need to assess how teens are doing on the road to greater independence and that shared decision-making helps build partnerships between adult and pediatric GI providers.

For the adult GI team:

  • Collaborate with the peds team in the initial stages of care transfer.
  • Anticipate existing gaps of knowledge and self – management skills
  • Prepare for more time during appointments for questions, additional education, and working with the family. Parents need help during this time of care transfer, too!
Woman patient signing medical documents discussing medication treatment with african american practitioner in hospital office during clinical consultation. Doctor physician explaining disease symptoms

Dr. Jonathan D. Moses, Assistant Professor of Pediatrics, Director, Pediatric Inflammatory Bowel Disease Program, UH Rainbow Babies and Children’s Hospital, explained how his hospital has a multidisciplinary pediatric IBD team that engages patients in a Health Maintenance Education Clinic as early as 11 years old.

“This allows them to build up the self-management skills needed for a successful transition to adult GI, when they are ready. In lieu of this resource, parents can engage their health care providers about ways to get their child more involved in their care and provide them with the autonomy, and support, to take over aspects of their care over a period of time.”

Dr. Hilary Michel, MD, Assistant Professor of Clinical Pediatrics, Nationwide Children’s Hospital, says a successful transition from pediatric to adult care requires that young folks have developed the knowledge and skills needed to understand and manage their disease independently.

“This knowledge and skill is not gained overnight, and ideally should be obtained gradually. Transfer to adult care should be planned in advance, when a patient is feeling well and has a good grasp on their disease management, so there are no gaps between peds and adult care. Parents and families can help the process by allowing teens to speak with their healthcare providers alone, gradually share care responsibilities, encourage them to learn about their disease, and highlight their successes.”

How this works in real time:

  • Patients can listen and participate in their visits.
  • Set goals with your healthcare team and work toward them, ask questions and share your opinions.
  • Healthcare teams can help by providing a non-judgmental space, listening attentively, encouraging young people’s success, engaging patients in decisions, checking for understanding, getting to know patients as people (talk about school, friends, activities), and connecting patients with resources

Dr. Whitney Marie Sunseri, MD, Pediatric Gastroenterologist, Assistant Professor of Pediatrics, UPMC Children’s Hospital of Pittsburgh, says “I always encourage a step-wise approach to transitioning to the adult world. I encourage patients to know their diagnosis, what medications they take and when, to recall their last scopes, and to be able to report all of their symptoms without the assistance of their parents. Then as they get older, and closer to the time of transition, I encourage them to look into different adult doctors. I give recommendations as well.”

Dr. Sunseri advises caregivers and patients to be proactive and look at reviews of doctors and who is in their insurance network. She says the most important visit is the one where patients follow up with her after their first adult visit to make sure it was a good fit and that they are in good hands.

“It’s bittersweet watching these children grow in so many ways and head off into the hands of another provider. Your heart swells with pride and breaks at the same time.”

Resources and Communities of Support

Sneha was diagnosed with Crohn’s at age six. She’s now 23 and still figuring out what her future will look like with IBD. As she grew up, she couldn’t find a community of young adults. This inspired her to create Generation Patient and the Crohn’s and Colitis Young Adults Network.

“Peer support during this transition is critical, so we host seven virtual community meetings. We have hosted over 250 of these peer support meetings over the last two years. I think peer support should be seen as essential during this transition period and it has been the best thing to come out of living with IBD.”

Generation Patient: Instagram–@generationpatient

CCYN: Instagram–@ccyanetwork

Join the American College of Gastroenterology Thursday, May 4, 2022 at Noon and 8 pm ET for a discussion about “Empowering Patients Through the Transition of Care in IBD”. Click here to register.

ImproveCareNow (Instagram: @ImproveCareNow)

The Circle of Care Guidebook for Caregivers of Children and Adolescents Managing Crohn’s Disease

Crohn’s and Colitis Foundation Youth + Parent Resources

National Council of College Leaders

Transitioning GI Patients from Pediatric to Adult Care

Transitioning from Pediatric to Adult IBD (This includes a helpful breakdown of ages and a checklists for independence, health, and daily activities)

IBD Support Foundation

Transitioning a Patient With IBD from Pediatric to Adult Care

Releasing Guilt with IBD: You don’t have to choose between medication and diet

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There’s no black and white approach when it comes to managing and treating inflammatory bowel disease. Newsflash—you don’t need to choose between medication and diet (nutrition). You can do both! This week on Lights, Camera, Crohn’s, we hear from registered dietitian and ulcerative colitis warrior, Ashley Hurst, about how her personal patient journey inspired her to look into targeted strategies for improving quality of life with IBD.

Ashley was diagnosed with ulcerative colitis at age 24, but she remembers symptoms starting when she was 7 years old. She lacked support for a long time, so her symptoms became her “normal” reality. When she was in college, she sought help for two years before she finally was able to get a diagnosis.

“I went to several doctors who dismissed my concerns thinking the bleeding was just fissures or hemorrhoids. It wasn’t until I was in a nutrition class in college, that I realized it might be something more. I remember reading about Crohn’s and ulcerative colitis and feeling like I was reading about all my symptoms.”

Finally, the fourth doctor she went to diagnosed her with IBD. She experienced a gamut of emotions ranging from relief to disbelief. More than anything, her diagnosis was a huge financial burden. At the time, she was working 2-3 jobs without health insurance. She couldn’t afford medication or even a colonoscopy bill.

“Since I couldn’t afford medications, I relied on nutrition and my own protocol. Once I was more financially stable, and had health insurance, I was able to start mesalamine rectal enemas and oral tablets, while sticking to my nutrition plan.

A preference for finding the balance between diet and medication

“Nutrition and medication have been lifesaving for me at times and I’ve found I prefer doing a bit of both (and so does my gut!). When choosing what route to go for IBD, often we feel a sense of guilt around taking medications. However, it’s important to remember that with whatever treatment route we go, we must weigh the risks versus the benefits.”

An uncontrolled flare is a risk and can impact our quality of life significantly. If you aren’t comfortable with medications your doctor has recommended, you can always ask what other options are available. It’s important to feel good about whatever treatment route you are taking and remember it’s your body, and your choice—just be prepared to face the consequences of active disease and hospitalization if you attempt to go against medical advice and take matters into your own hands. There is a fine balance distinguishing what triggers you and how best your disease is controlled.

The story behind The Crohn’s and Colitis Dietitians

When Ashley initially worked as a registered dietitian, she didn’t specialize in IBD. But as the years went by, she realized Crohn’s and Colitis patients were her favorite people to work with.

“I felt drawn to supporting IBD patients like myself and saw what a need there was for IBD specialized dietitians. Four years ago, I lost my cousin and close friend who had Crohn’s, and he left a lasting impact on me that further increased my desire to make a greater impact in the Crohn’s & Colitis community. He inspired me to be open about my diagnosis and get more connected with others who have IBD.”

Once Ashley decided to specialize in IBD, she quickly discovered how fulfilling it was to do work that has a lasting impact. Ashley says many people seek their support for IBD nutrition, but often feel like they need to choose one or the other.

“Most IBD research studies on both dietary strategies and targeted supplementation for IBD look at participants that are also on medications. Research continues to show that a combined approach using both medications and nutrition is the best path and can help increase chances of remission. It can be tempting to try and experiment by doing one thing at a time to see what works. However, there is currently no one cure for IBD, so treatments typically do involve a multi-faceted approach.”

As business started booming, rather than create a wait list, she brought on three other dietitians. Ashley and her team specialize in providing medical nutrition therapy for Crohn’s and Colitis patients, but also tackle SIBO, acid reflux, allergies, EOE, and much more. All four of the dietitians on the team have IBD, so they understand the patient perspective and the urgency to reach relief.

“As a team, we’ve had the privilege of working with hundreds of patients with digestive challenges, and we have witnessed the remarkable transformations that are possible. We are passionate about helping people not only find relief but make peace with food again.”

Like a fish out of water concerning diet

Many of the people with IBD who Ashley speaks with express that they were dismissed when asking their provider for a dietitian referral.

“The most common thing I hear is- “I Googled what to eat for IBD and Google left me with what NOT to eat for IBD and I feel even more confused with all the conflicting information!” It’s true, the internet is filled with conflicting information on this topic. This leaves people feeling afraid of food and often only eating just a few “safe foods”. Oftentimes these self-imposed food restrictions are unnecessary and lead to malnutrition, loss, low microbiome diversity, poor gut health, and ironically more symptoms!”

This is where Ashley and her team come in. They help those with IBD sort through all the nonsense and get to what really matters most and what works on an individualized basis.

“We are interested in supporting IBD patients, not just while they work with us, but for the long haul! We equip our patients with tools to learn so that they feel confident navigating nutrition even after they leave. We also offer a variety of free and low-cost educational resources on our website and Instagram for those people who just need a next step.”

How to know if you’re truly “healing” your IBD with food

The first question Ashley asks fellow patients she consults with is—is your nutritional approach working? The only way to know is to confirm through colonoscopy and inflammatory lab or stool markers.

“Symptoms alone are not always a great indicator of how our IBD is doing. It is important to monitor your IBD even if you are feeling better to make sure your disease is not progressing.”

Medication is not the “easy way out” and is not a sign of failure

Ashley and her team work with many IBD patients who are on biologics and utilize nutrition as a complementary approach to allow their medications to work better.

“Medications often lower certain nutrients, so one way you can support yourself long term is to check for deficiencies regularly. Some nutrients like zinc and vitamin D we need to regulate inflammation and help support our digestive tract lining. Ensuring they are at appropriate levels can help prevent flares. Vitamin D especially tends to get low with inflammation and is correlated with flare frequency and severity.”

Many patients avoid fiber because they fear it will trigger symptoms. Personally, I remember the first decade of living with Crohn’s, I was told I couldn’t have more than 5 mg of fiber per serving, which I now know is not the case.

“Understanding nutrition can help with expanding your diet. Research shows the importance of fiber for IBD for inflammation reduction, preventing flares and also complications. However, fiber is the most common thing IBD patients avoid. There are many ways you can approach expanding your diet without triggering symptoms and working with an IBD dietitian can help you navigate this better.”

The Roadmap of Nutrition

On average, Crohn’s and Colitis Dietitians helps clients reduce their IBD symptoms by 50-75%. Most report that their other big takeaways are improved energy and feeling more at peace with their food choices.

“We help you achieve this through working with people in a group setting and one-on-one. With one-on-one work we see people for a total of 6 months. It starts off with an intake session where we get to know your goals and your whole story with IBD and outside of IBD. After this session we put together a customized treatment plan that is your roadmap forward.”

The process includes dietary guidance (what to prioritize in the diet) and often targeted supplementation recommendations too. After this session, Ashley and her team see people each month in sessions to monitor progress and troubleshoot anything that comes up.

“We also offer access to us through chat throughout the whole 6 months for any questions that come up. We offer customized meal planning and video modules designed to help you.”

IBD is not your fault. It’s important to remember you didn’t sign up for this and you shouldn’t have to carry the weight of it alone.

“It can be incredibly helpful to have a team around you to support you through flares and the ups and downs of IBD. An IBD focused dietitian can help you navigate what to eat, treat nutrient deficiencies, sort through best options for targeted supplementation and help you reduce IBD symptoms.”

Outsource your stress. It’s overwhelming to juggle all the proverbial IBD balls in the air.

“Having a support team alleviates stress. It’s calming to know you don’t have to think through every decision and worry by yourself. It helps to have someone to lean on and takes the weight off your shoulders.

Don’t base your journey off what works for others. Just because you see someone proclaim their success by treating their IBD with food, doesn’t mean you’ll have the same experience. Before making any rash moves with your treatment plan, it’s imperative you communicate with your care team and get medically guided advice vs. following what you see someone post on Instagram. Same goes for medications—just because one person has had a great response on a biologic, does not mean you’ll have the same response.

Here are what some patients have to say about their experience:

“I’m so glad I started this program. I had to stop biologics due to developing antibodies and have been off biologics for over six months and since starting with the Crohn’s and Colitis Dietitians, I feel better than when I was on them. I only wish I found this program earlier.” -A.T.

“During the 6 months I was with Crohn’s and Colitis Dietitians- my symptoms of diarrhea and urgency reduced significantly, I have more energy and my inflammation decreased from over 100 to 38 (fecal calprotectin). Even my doctor was surprised and curious about what I had been doing with my nutrition!” -S

Connect with Crohn’s and Colitis Dietitians

Email: support@crohnsandcolitisdietitians.com

Instagram: @crohns_and_colitis_dietitian

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Check out these FREE resources created by Crohn’s and Colitis Dietitians:

E-book + Recipes: What to Eat for IBD 

E-book + Meal Plan: One Week Meal Plan + E-book (on website home page)

The Patient Experience: Puberty and IBD

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Whether you are a parent or not it’s heartbreaking to imagine how it would feel if you found out your child (no matter their age) was diagnosed with a chronic illness like inflammatory bowel disease. Of the more than six million people in the world diagnosed with Crohn’s and ulcerative colitis, approximately 25% of patients are diagnosed during childhood and adolescence, most of which are going through puberty. Impaired growth, pubertal delay, and low bone density are all common in children and teens with IBD. They can occur at diagnosis or at any time during a patient’s IBD journey.

As an IBD mom of three, who was not diagnosed until I was 21 years old, I personally don’t have the experience or perspective to share what it’s like to grow up with IBD or have a child diagnosed with it, so I tapped into several caregivers in our community, along with four leading pediatric gastroenterologists for input.

My hope is this article will serve as a helpful resource as you navigate the challenging waters of puberty with your loved one. Teen years are difficult enough without a chronic disease, taking a close look at how this impacts a young adult physically, emotionally, and mentally is something that deserves much more attention than a blog article.

Concerns from patients and caregivers

Before we get into the medical input, I want to share some of the messages I received this week from young patients and their caregivers so you can see firsthand how complicated this period of life is for everyone involved.

“I’m 14 years old. I was diagnosed with Crohn’s when I was 12, which marked an influential time in my life. It can be hard to cope with being diagnosed and having a chronic illness at that age. That year leading to my Bar Mitzvah, a cultural rights of passage from boyhood to manhood, was really challenging for me. At a time when changes are going on and puberty takes its course, learning to trust your body and that it is working is key. Rather than trusting my body, I had a lot trust issues. If my body could turn itself to work against me in my GI system, what’s to say it wouldn’t turn on me other ways? I am especially worried about my reproductive system. Since I was a little boy, I always knew I wanted to be a father when I grew up. Having kids and being a family man has always been my highest purpose in life. Since my Crohn’s diagnosis, I’ve felt anxious and worried about whether my Crohn’s or my body will stop me from fulfilling that dream.”

“I often worry about whether my son’s hormones will put him into a flare and wonder what the best way to approach the school about his Crohn’s is.”

“My biggest puberty concern is delayed growth or slowed growth and flares. I’ve heard a lot about puberty hormones really causing issues. Is there truth to this?”

“Will my almost 15-year-old son start puberty once his treatment kicks in or will he always look like a 12-year-old child?”

“My 15-year-old lost more than 15 pounds in the last year, we’ve checked all kinds of things, but can’t figure it out. He’s on renflexis (generic Remicade) and his colonoscopy came back clean. He gets full easily and deals with chronic constipation. I hope his IBD doesn’t stunt his growth.”

“The anxiety of managing IBD while combining that with the developmentally normal anxieties of the adolescent years can result in mental health issues that are hard to pinpoint. Body image issues that are normal as their bodies change, mixing with body image and food-related issues associated with IBD (good foods and bad foods, overly focusing on diet, etc.) which can lead into worrisome territory like disordered eating and worse. As children separate from their parents more with each passing year (which is normal), it becomes harder to monitor IBD symptoms and disease progression as a parent. As someone who has always been in the driver’s seat about IBD, this is a scary shift and I worry some symptoms will go unnoticed and become exacerbated.”

“That puberty will stop growth—growth has been severely impacted by Crohn’s before diagnosis and it did—hitting puberty early meant growth stopped and she only reached 4’9”/4’10”. Her periods also add to existing fatigue levels.”

“I worry about medication not working like it used to due to so much change in the body. I also worry about how she may feel about her image comparing herself to others at that age with so many scars or if she ever needs to have an ostomy bag. I worry her IBD will affect her cycles or make them more painful.”

“That my son will go into a flare requiring heavy intervention that goes far beyond our comfort zone, but we’ll feel trapped so he’s able to grow at the right time.”

“My 13-year-old son was diagnosed with Crohn’s a little over a year ago. He is doing ok now and on Humira bi-weekly. I’m mostly concerned about his growth, as he is small for his age. He has gained about 20 pounds in the last year, but he was malnourished as COVID made it difficult to get his diagnosis. Hoping he stays on track and continues growing and that his growth potential isn’t adversely affected by his IBD.”

“As a kid who went through being on high dose steroids while going through puberty, bless my mother!”

“Delayed puberty is a big thing. Also, how, and when is it appropriate to start transitioning responsibly for ultimate transfer of care. Mental health is often a concern for adolescents (anxiety/depression).”

“Flares. Many parents report puberty as being a challenging time for IBD. Imagine all the normal teen/puberty hormonal issues and then add IBD (and I say this as a lucky parent with our teens). I think every parent that makes it out alive should get a very long vacation. The #1 thing I hear from parents of kids with IBD is: “my heart breaks every single day”. Whether in remission or not, the disease is a persistent and heavy burden on patients and families. With all the noise, it’s important not to lose sight of this fact.”

“I was diagnosed with ulcerative colitis at age 13 and it all happened very quickly. I was in eighth grade – my body changed almost immediately after being put on prednisone. Being an early developer, puberty was a challenge for me. I didn’t look like most other girls in my grade. So when I started getting really bad acne and a swollen (moon) face from the meds, it was the icing on the cake. I remember ninth grade consisted of me coming home from school and crying to my mom because I felt what was happening to me was unfair. I’d have to excuse myself during classes to use the bathroom, so everyone knew what was happening. I was mortified. And although I was an “early bloomer”, I can’t help but wonder if I would have grown a bit more if I hadn’t been diagnosed, put on prednisone off and on for the first 3 years, or started on biologic treatment. There’s always the questions and mystery of what IBD has potentially taken away from me. But living with IBD also resulted in me growing up pretty quickly. I was able to navigate the healthcare system by the time I graduated from high school. I learned to talk about my body and my health – things that I don’t believe my peers could articulate by that time. So it came with some benefits – or at least things that I have been able to turn into positives. My experiences have made me a stronger person. And I’m thankful for that.”

Impaired Growth: Why it happens and what to watch out for

According to Dr. Sabina Ali, MD, Associate Clinical Professor, Director of IBD program, UCSF Benioff Children’s Hospitals, the most common extraintestinal manifestation of IBD in children is impaired growth, particularly in Crohn’s disease and that’s also what she hears from patients and their families when it comes to their greatest concern.

“Growth is a dynamic marker of overall health in children and adolescents, which occurs in 10-30% of cases. Short stature and failure to grow can precede IBD symptoms. It is important to monitor nutrition and growth closely and as this can lead to delayed puberty. Make sure the child is routinely getting height, weight and BMI measured. Growth impairment is more common in males than females with Crohn’s disease. It’s important to get disease in remission.”

Dr. Ali went on to explain that growth issues are more frequently seen in children who have never been in remission or for those who have dealt with flare ups in the pre-pubertal period.

“Pubertal delay may potentially decrease bone mineralization and affect quality of life in children who realize that their sexual maturation is different from their peers.”

Dr. Jonathan D. Moses, Assistant Professor of Pediatrics, Director, Pediatric Inflammatory Bowel Disease Program, UH Rainbow Babies and Children’s Hospital, agrees that remission is essential as a first step to ensure normal bone growth and pubertal development. Most of the time the concerns we hear about puberty and IBD is at the initial diagnosis when parents will note that young women have not started their menstrual cycle yet at the expected age or young men have not started their “growth spurt” yet.

“Growth is a key element of children diagnosed prior to puberty. Our goal is to provide the therapy that will allow them to be in continuous remission and achieve their final adult height and avoid any pubertal delays. If there are any concerns with this, we typically place a referral to the pediatric endocrinologist to help co-manage this.”

According to this University of California San Francisco study, boys are three times more likely than girls to deal with one of the conditions most devastating effects: the failure to grow normally. Researchers were surprised by this finding because the study also found girls had a more severe disease course than boys.

Dr. Ali says that a novel finding is that a high proportion of patients with ulcerative colitis exhibited continued growth, suggesting delayed skeletal maturation is also frequent in ulcerative colitis, contrary to common assumptions. For patients exhibiting continued growth, median final adult height was greater in males with ulcerative colitis than males with Crohn’s disease but did not differ significantly in females with ulcerative colitis, compared with females with Crohn’s disease. This finding supports the growing body of literature that statural growth impairment is more common in males than females with Crohn’s disease.”

Dr. Hilary Michel, MD, Assistant Professor of Clinical Pediatrics, Nationwide Children’s Hospital, explains the importance of monitoring pediatric GI patients’ weight, height, and pubertal development over time. She says measuring weight and height and asking about pubertal development helps make sure each patient is tracking along their growth curves and developing at an appropriate rate.

“In addition to monitoring IBD symptoms and checking labs, stool tests, and scopes, monitoring growth and pubertal development is another way to make sure we are treating IBD inflammation completely. If a patient is not going through normal stages of puberty, or is going through puberty more slowly than expected, it’s a hint that we should check on their IBD disease control! And if their disease is in control, then we need to think of other causes for delayed puberty and get them in to see the right experts to help.”

Dr. Sandra Kim, MD, Associate Professor of Pediatrics, Director, Inflammatory Bowel Disease Center, UPMC Children’s Hospital of Pittsburgh, says along with monitoring growth and nutritional status, it’s important to keep a close eye on emotional state and quality of life.

“It’s important children understand their disease, and for families and the care team to understand where the child is not only medically, but psychologically and developmentally. As a pediatric gastroenterologist, who focuses on the care of children and teens living with IBD, I know I have a unique relationship and responsibility as I watch “my kids” grow up.”

Dr. Kim says, “We see growth impairment in children and teens with Crohn’s much more so than with ulcerative colitis, especially with extensive involvement of the small intestine. Active inflammation in the small intestine can impact an individual’s ability to absorb nutrients. IBD also impacts appetite and can lead to inadequate nutrition.”

According to Dr. Kim, studies have shown up to 80% of children (males>females) have some degree of both weight and growth impairment when their Crohn’s is not controlled. While studies do vary in the range affected, it’s clearly a significant issue.

Medication and the pubescent years

In general all pediatric gastroenterologists try to limit and shorten the exposure of steroids in children.

Dr. Ali says, “Recent inception cohort studies in pediatric IBD have highlighted baseline phenotyping of patients to predict the severity of their disease course and help identify who will benefit the most from early biologic treatment. Biologic therapies have improved outcomes in pediatric IBD, including achieving mucosal healing as well as improved growth and pubertal development.”

Prior to this, the goals of treatment in Crohn’s disease were focused on controlling symptoms, enhancing quality of life, minimizing complications to prevent surgery, and restoring growth in pediatric patients. Evidence has shown that mucosal healing is associated with sustained corticosteroid-free clinical remission, reduced hospitalization, and lower surgery rates. According to Dr. Ali, biologics are the most effective in inducing and maintaining mucosal healing in this patient population.

Dr. Moses explains how biologics are decided upon with young patients.

“The age of the patient, in the context of the biologic era, does not seem to play a significant role at our center. If a child, regardless of age, needs a biologic medication, then we will typically proceed with this after shared decision making with the family. As a rule, for all ages, we work very hard to limit steroid exposure, both by planning out their maintenance therapy right away or using exclusive enteral nutrition (EEN) to induce remission in our patient with Crohn’s disease.”

Dr. Michel says it’s important to get IBD under control quickly since the window to achieve the goal of remission is so small.

“Because of this, growth and pubertal delay can be reasons to start a biologic as first line treatment. If steroids are used, they should be short-term (induction therapy only) to prevent negative impacts on growth and bone health. These patients may also be great candidates for exclusive enteral nutrition to treat their IBD, as it can help heal inflammation and address malnutrition without the side effects of steroids. Involving an experienced dietitian is key!”

While research has shown that disease activity may fluctuate with hormonal shifts (like those that happen with puberty, pregnancy, and even menopause), Dr. Michel says she is not aware of any specific data to connect loss of response to therapy because of puberty.

Puberty gets delayed

For pediatric patients in whom remission has never been achieved or for those who have frequent relapses, puberty is often delayed.

“The endocrine-hormonal mechanisms responsible for pubertal delay associated with inflammatory disease are incompletely understood. It is thought to be due to effect by both nutrition and inflammation,” said Dr. Ali.

Delayed puberty or delayed linear growth can be presenting signs of IBD to help clinicians make the diagnosis.

“Once these pre-teens achieve remission, they will begin to progress through puberty again and have improvement in their bone density, if it was low at baseline,” says Dr. Moses.

Dr Michel says, “The best way to ensure normal growth, weight gain, and pubertal development is to make sure their mucosa is healed. It’s also important we address low weight or malnutrition. If we’ve confirmed that IBD inflammation is resolved (through labs, stool tests like calprotectin, and scopes), and that patients are getting the nutrition they need, and we’re still seeing delayed puberty or slow growth or weight gain, this may prompt a referral to an endocrinologist, adolescent medicine doctor, or gynecologist to look for other causes of these problems.”

By adequately treating IBD and achieving mucosal healing, kids have the best chance to grow and develop normally and have healthy bones.

“Inflammation affects hormones important in growth and pubertal development, and delayed pubertal development is closely tied with poor bone health,” explained Dr. Michel. “Active inflammation can also worsen malnutrition and lead to low weight, which can delay puberty. These variables are often closely related; for example, a patient with active IBD may not feel well enough to eat regularly and lose weight or be malnourished. Or they may eat well but not be able to absorb the nutrients from their food. Or they may lose nutrients through stool or vomiting. So, treating inflammation and treating malnutrition are KEY to optimizing outcomes for kids and teens with IBD.”

Causes for the delay in puberty and decreased bone density can be multifactorial.

“Things we consider include nutritional deficiencies (not absorbing enough and/or not getting enough into your body), and the impact of inflammation (though pro-inflammatory cytokines – the “chemicals” produced by activated white blood cells – on sex hormone production, as well as growth hormone),” said Dr. Kim. “Other factors that can specifically impact bone density – decreased physical activity which leads to decreased muscle mass.”

When determining a course of therapy, a child’s quality of life and the impact of active IBD must be taken into consideration.

Dr. Kim explains, “Steroids have a great deal of side effects: external appearance (“moon” facies), psychological (can exacerbate underlying anxiety and depression; can impact sleep), bone health (decrease bone density and increasing risk of fractures), impact on wound healing, increased risk if long term on the GI tract (i.e. perforation), increased blood sugar (hyperglycemia), high blood pressure.”

What’s the deal with birth control and IBD?

Each pediatric gastroenterologist featured in this piece says they have heard from both patients and parents about oral contraceptives aggravating IBD. Dr. Ali says oral contraceptives are consistently linked to an increased risk of IBD.

Dr. Michel says since menstruating is a normal part of development for female patients, active inflammation, low weight, and malnutrition, can all play a role in delaying the onset of it. If a patient is flaring, they might have irregular periods or stop getting their period for some time. Once the problem is addressed—inflammation controlled, normal weight achieved, and malnutrition treated, menses typically resumes. IBD symptoms can also be exacerbated during menses for some women.

When it comes to choosing to go on birth control, and what birth control to choose, Dr. Michel advises patients and parents to be clear about their goals and weigh the risks and benefits.

“Goals for starting birth control can include regulating heavy periods or bad cramps, preventing pregnancy, improving premenstrual symptoms (mood, headache, fatigue), or even managing acne. There are some data about birth control pills increasing the risk of developing IBD, but research is conflicting about whether they increase the risk of flare. I would encourage any patient who is interested in starting birth control to talk with her gastroenterologist about what options might be best for her. An adolescent medicine doctor or gynecologist can also be extremely helpful to have these conversations, weigh pros and cons, and help young women and their families make informed decisions.”

Dr. Kim is no stranger to hearing concerns about the impact of oral contraceptives. She says it’s tough to determine whether birth control specifically aggravates disease.

“Women who have increased diarrhea and cramping around their cycles may have improvement in these symptoms when on birth control. Currently, there is not enough data to suggest birth control directly leads to aggravation of underlying IBD. However, there are other issues to consider when a young woman chooses the type of birth control. There is increased risk of venous thromboembolism (increased risk of forming blood clots) in individuals with IBD. There also is an increased risk for clots associated with combination oral contraceptives whether a young woman has IBD or not. Therefore, a woman who has IBD and goes on oral contraceptives not only has a higher risk of forming significant blood clots, but with more significant consequences from this.”

Dr. Kim’s recommendation? Avoid oral contraceptives with an estrogen component, if possible. Depo-Provera is an alternative, but you need to be aware that it can impact bone density. She says IUDs are safe and highly effective

How best to support young patients

  • Support groups: Discuss concerns regarding how a patient is coping with the IBD team. A social worker or psychologist on the IBD team can be a great resource.
  • Psychosocial assessments
  • Care coordination
  • Supportive counseling
  • Connection to resources

“As a pediatric gastroenterologist, my contribution is to manage their therapy as best I can to achieve remission. After that, we rely on our multidisciplinary team to address the psychosocial aspect of the disease and how this affects them at this stage in life,” said Dr. Moses. “Finally, we encourage the families to get involved with the Crohn’s and Colitis Foundation and attend Camp Oasis, if possible, to meet other children their age who also have IBD. This builds up their social support network in a way that can be life changing for them.”

Dr. Michel says, “I try to normalize their feelings, and reassure them that with effective treatment and achieving remission, we are working toward them reaching their full potential. I also think it’s a great time to involve experts like psychologists and child life specialists to help work through these concerns. Parents will often also ask about future fertility (kids and teens usually aren’t thinking of this yet)! It’s always a huge relief for families to learn that we expect normal fertility for our young folks with IBD and that the best way to ensure this is to get good control of disease.”

She advises parents to acknowledge how challenging it can be to go through puberty with IBD.

“Any feelings they’re feeling – frustration, anger, sadness – are ok. Then, I would encourage parents and patients to share these emotional and physical struggles with their healthcare team. Many centers have fantastic psychologists, social workers, and child life specialists that can help young people understand their disease, explore their emotions, and develop healthy coping skills that will serve them now and into adulthood. There are also fantastic resources online through ImproveCareNow and the Crohn’s and Colitis Foundation,” said Dr. Michel.

Dr. Kim advises parents and patients not to be afraid to ask pediatric gastroenterologists and their healthcare team for help.

“I really believe it takes a collective effort to support our children and teens. We are living in an unprecedented time with the COVID 19 pandemic (which has led to social isolation and new stressors with school, peers, and family dynamics),” she said. “Seeking our behavioral health resources (psychology, psychiatry, counseling, social work) is NEVER a sign of weakness – quite the opposite. One thing I would love to see: elimination of any perceived stigma when addressing issues around mental health. It is so crucial to address stress, anxiety, and depression. Besides the obvious impact on quality of life, we know that anxiety and depression can negatively impact an individual’s IBD itself. For the parents out there, I tell them they must check their own guilt at the door. The parents did NOT do anything to cause their child to develop IBD. I always say that you can be mad at the disease but never at themselves.”

Connect with these physicians on Twitter:

Dr. Sabina Ali: @sabpeds

Dr. Hilary Michel: @hilarymichel

Dr. Jonathan Moses: @JonathanMoses77

Dr. Sandra Kim: @SCKimCHP

Let this piece serve as a conversation starter as you discuss your child’s health with their care team. Ask the questions. Get empowered by learning and educating yourself more. As chronic illness patients and parents, it’s a constant learning curve—with each setback and triumph we gain newfound understanding and perspective. Stay tuned for an upcoming article on Lights, Camera, Crohn’s with guidance regarding making the transition from pediatrics to adult doctors.

Helpful Resources

Learn about the Crohn’s and Colitis Foundation’s Camp Oasis

Continued Statural Growth in Older Adolescents and Young Adults with Crohn’s Disease and Ulcerative Colitis Beyond the Time of Expected Growth Plate Closure

Oral Contraceptive Use and Risk of Ulcerative Colitis Progression: A Nationwide Study

Growth, puberty, and bone health in children and adolescents with inflammatory bowel disease | BMC Pediatrics | Full Text (biomedcentral.com)

How IBD Affects Growth in Kids and Teens (verywellhealth.com)

Pediatric Crohn Disease: Practice Essentials, Background, Pathophysiology (medscape.com)

Contraception, Venous Thromboembolism, and Inflammatory Bowel Disease: What Clinicians (and Patients) Should Know

Growth Delay in Inflammatory Bowel Diseases: Significance, Causes, and Management

Circle of Care: A Guidebook for Caregivers of Children and Adolescents Managing Crohn’s Disease

Forecasting the weather and life with IBD: What this meteorologist has to say

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On the last day of 8th grade most kids are anxiously awaiting summer and moving onto high school, but for Candace Monacelli, that wasn’t the case. Instead, June 7th, 2007, she was diagnosed with Crohn’s disease at age 14.

As you can imagine, a lot has transpired since that monumental day. Candace now works as a morning meteorologist and reporter in Grand Rapids at WXMI-TV. She’s been at her current station for five years and has worked in the TV business for seven. This week she shares how Crohn’s has impacted her life but didn’t rob her of her hopes and dreams of working in TV news.

When it comes to going after your dreams and following your career aspirations, I see a lot of Candace in myself. We recently connected on Instagram and realized the parallels of our experience. Despite my Crohn’s diagnosis, I went on to work in TV news 3 months after finding out I had Crohn’s. I worked on morning shows for 7 years, she’s a morning meteorologist. We both do/did what we could to be the bubbly/happy on-air morning gals, while facing major battles and pain internally. We both encountered serious hospitalizations and bounced back to be on camera shortly thereafter. Being on steroids is hard enough…going on camera while on steroids and being judged by keyboard warriors and unkind strangers is a whole different story.

A walk down memory lane

“My family and I had never heard of Crohn’s disease before and knew nothing about it or what my life would look like moving forward. I was sick for months prior to my diagnosis. My parents and I learned along the way, but my mom was my right-hand lady at every doctor’s appointment trying to figure out my illness. My parents were just so happy to have a name and a cause to me being so sick, they just described it as my stomach not being normal and we would figure this all out together. Then, I was put on steroids which resulted in weight gain and being bullied.”

Aside from hurtful words from her peers and juggling life as a teen with doctor appointments and colonoscopies, Candace says her disease at the time was well-managed with 6mp. When she moved onto college, she dealt with the challenge of wanting to live life like a typical student. By the time she was ready to enter the real world she not only graduated from college but also onto biologics (Humira).

Life in the TV spotlight

While in high school Candace discovered she loved public speaking and visited a local television station—she was hooked. Since she was already a decade into her patient journey, she didn’t second guess going after her dream of working in TV news as a meteorologist and reporter.

“Everyone thinks of Crohn’s as a pooping disease and while it is so much more than that, it is still a factor of the disease. The hardest part of my job is the limited time or access to a bathroom. Either I am covering something in the field with no restroom nearby or I have two minutes during a commercial break to hurry to the bathroom and be ready to go on air again. There’s been some interesting behind the scenes moments, but luckily, I am open with my crew and choose to be lighthearted about the bathroom aspect.”

Over the years, Candace has learned how to read her body and know when she can’t push through or make it on air.

“When the light goes on, it’s showtime. No matter how I am feeling… there’s been many days where I feel terrible but must put on a smile because I look perfectly healthy and it’s my job to come off that way. Being in the public eye with IBD can be pretty taxing some days.”

Juggling surgeries, abscesses, and fistulas

Up until this story—Candace has not spoken openly about her struggles with abscesses and fistulas. As a public facing person, discussing this private and often taboo topic is something that takes a lot of guts to be open about.

“Abscesses and fistulas make you feel so broken and constantly worried that if someone finds out the truth, they will instantly think you are the dirtiest person on this Earth. My palms are sweating, and I feel like I could puke, knowing strangers will now know this about me. But I am sharing in hopes to help that one person that is feeling just as alone as I do somedays.”

Even after five surgeries, Candace still has problems with abscesses and fistulas and somedays are better than others with numerous new challenges in her life.

“Sitting for a long time is now my own personal Olympic sport because it’s painful some days. I used to consider myself a runner, but that is now off the table for me, and my bathroom breaks are different. It’s been a scary learning curve trying to figure out how to handle something so foreign, that is now very much a part of every aspect of my daily life.”

Candace joined specific Facebook groups for her condition, as she desperately searched for others going through the same reality. More than anything else her family and friends are really what get her through.

“Every single person close to me has helped me know I am not alone and helps me get through difficult days, whether it’s a simple ‘how are you feeling?’… or crying with me on the bathroom floor.”

Going back on air after surgery

The first surgery to treat her abscesses and fistulas was an emergency and was unexpected. Candace was back on air four days after being discharged from the hospital.

“It sounds just as crazy as it was, but I am a stubborn Italian and never let Crohn’s win, so I somehow went back to work. My parents and boyfriend (now husband) weren’t happy with me, but I insisted on returning to the job I love. I remember having to practice getting in the car and making sure I could handle driving around my neighborhood the day before, since I leave for work at 2 in the morning.”

Candace remembers waking up that day, knowing what she just went through, and what it felt like to go back on camera in front of thousands of people who had no clue what she was enduring.

“I remember talking to myself on the ride to work thinking “what are you doing Candace you are a mess.” That first day back was mentally very hard to smile and pretend I felt like a million dollars when I did not. No one wants to watch the “sick” meteorologist on air so I couldn’t be that girl. Behind the scenes was an interesting hot mess as I had to put a blanket down to lay on the floor to work or just take a break since I couldn’t sit – I had to lay down at work for a month or more after each surgery.”

Candace learned her lesson and she didn’t rush her recovery after more recent surgeries.

“I found that allowing myself to heal and rest is not letting Crohn’s win but doing what is best and needed for myself in that moment. The stubborn Italian in me still struggles with giving myself time and grace, so it’s a work in progress.”

Being an open book with viewers and the community

Candace’s viewers know she has Crohn’s disease. She decided to openly share her experience with IBD to spread awareness and help make a difference.

“If I can share my story and experiences to reach one person and make them not feel so alone, then it’s one thousand percent worth it to me. I’ve also covered and shared numerous stories of IBD warriors within my community and get media coverage for all the Crohn’s and Colitis foundation events every year. The more awareness the better and I am blessed with a perfect platform to help make that possible.”

Advice for fellow IBD warriors

Candace has this advice for anyone worried about their futures—whether it’s a parent with a child who has IBD, or someone diagnosed at an early age.

“Where there is a will, there’s a way. Everyone has a cross to carry in life and our cross just happens to be IBD. In a weird, twisted way, this disease makes you strong enough to conquer whatever you put your mind to. We see people with IBD be professional sports players and movie stars, to everyone in between, including little old me… every IBD warrior can do whatever they dream to be one day. We are warriors fighting a battle every day, whether it’s big or small. Even when you yourself or someone you care for is sick or having a tough day, we need to know better days will happen again – just like the weather it can’t always rain forever…. You will feel better one day.”

I asked Candace what she would tell her younger self if she could go back to when she was diagnosed in eighth grade. Here’s what she said:

“IBD will challenge you more than you can ever imagine but will also make you into the strong person you love. The life God gave you is tough, but it’s nothing he knew you couldn’t handle. It’s a battle you won’t ever lose. One day you will get everything you prayed for, even through everything Crohn’s throws your way.”

Candace is in remission in terms of her colon, but her rectum is still problematic and causing active disease. She gets Remicade infusions and avoids eating too much dairy, spicy foods, and salads. Candace drinks one cup of mushroom coffee most days and eats a mostly plant-based/Mediterranean diet.

Finding love with IBD

Candace met her husband on Match while working in her current TV market. She says they fell in love fast, and the rest is history!

“We moved in together, he proposed, and we had to postpone our wedding because of COVID. Now, we’re finally married and have a new house and a puppy. Life is good! My husband is the most loving and caring man helping me through all things Crohn’s. He is a saint straight from the heavens being right there by my side through everything. He has even spent one of his birthdays with me in the hospital for a surgery. He pushes me when I’m in a hole and feeling sorry for myself to help me realize my worth and remember that Crohn’s doesn’t completely define me.”

Connect with Candace

Instagram: @CandaceM_wx

Facebook

Twitter

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

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When you think about IBD and motherhood, you may instantly imagine a woman who has dealt with her disease for years before getting pregnant. But that’s not always the case. This week on Light’s, Camera, Crohn’s we hear from IBD mom, Angela Knott. She was diagnosed with ulcerative colitis when she was 17 weeks pregnant with her second child in December 2020. While a circumstance like this is rare, it is possible and complicated.

Between navigating the pandemic and a chronic illness, this diagnosis rocked her world. Angela was living in Australia (away from all family and friends) because her husband is a U.S. Navy pilot. They were on orders for a pilot exchange program in Adelaide, South Australia. Angela and her family now live in Texas.

She reflects on her journey as a woman and mother with ulcerative colitis and how it felt to receive a chronic illness diagnosis while trying to bring a baby safely into this world. Prior to being diagnosed with IBD, Angela was in perfect health. She never had a cavity or even broke a bone. She grew up being extremely active and is in excellent shape. Her first pregnancy in 2018 was flawless and uneventful. She carried her daughter to term and had no issues. But everything started to change when she was 15 weeks pregnant with her son.

“During this time, I experienced severe fatigue, anemia, stomach pain, stomach cramps, and weight loss (I lost 15 pounds over two weeks). After a few days of symptoms, I went to my doctor, and I told him all about my symptoms and how I was concerned something might be off with my pregnancy. He told me I was lactose intolerant and that I needed to limit my dairy intake. I did this for three days and then I went back to the doctor because my symptoms were getting worse.”

Angela was then tested for salmonella poisoning and two days later, the test result was negative. By this time, she had already lost 10 pounds and she was becoming scared that something was wrong with her baby. She got a second opinion and was told she likely had irritable bowel syndrome (IBS). That doctor wrote a referral for a gastroenterologist.

“That same evening, I ended up in the hospital due to my symptoms worsening and I was scared my baby’s health was declining since I was so ill. I was told to immediately go to the Women and Children’s Hospital to have the baby monitored (in Australia, this is a hospital for pregnant women, children, teens, and babies). I was more concerned about my baby’s health rather than my own which, is why I went to a hospital that assisted pregnant women.”

While at the hospital, Angela’s baby was monitored and doing well. She was given IV fluids to help with dehydration and she started to feel better. She went home and rested, again being told she likely had IBS.

“Shortly after getting home, I started vomiting and this continued for the next two hours. After speaking with my husband, we decided I needed to go to the ER because something was seriously wrong, and I needed treatment.”

Seeking emergency care during Covid

Due to Covid restrictions in December 2020, Angela’s husband had to drop her off at the emergency room and could not go in, only adding to an already stressful and worrisome situation.

“After reviewing my blood work and hearing about my symptoms, a gastroenterologist at the hospital stated I may have colon cancer, ulcerative colitis, or Crohn’s disease. I knew what IBS was, but I had never heard of UC or Crohn’s before. On top of being told I may have an autoimmune disease or cancer, he told me I needed to have an endoscopy to check for potential inflammation in my colon and that this procedure could result in me miscarrying since I was going to be put under. I had never been so scared in my life.”

Angela underwent the endoscopy in the morning and sure enough, she was diagnosed with ulcerative colitis. She was close to having a toxic mega colon.

“It was a blessing that I went to the ER when I did because if I had waited a day longer, my colon would have become toxic, and my organs would have potentially shut down thus impacting my baby’s life. Later that afternoon, I met with another gastroenterologist, and he gave a thorough explanation of UC and my treatment options. He explained to me I would need Remicade infusions every 6 weeks throughout my pregnancy until I was 36 weeks pregnant. Within the next hour, I received the Remicade infusion.”

She stayed in the hospital for one week and was released on December 23, 2020. Angela received another infusion on Christmas Eve and stayed on a special diet for the next week. Within two weeks, her symptoms had drastically decreased, and miraculously remission seemed to be on the horizon.

“When I started the biologic, I was extremely nervous about how it would affect my baby’s health as well as mine. I was told it was safe for pregnancy, but it was scary knowing that my baby would be exposed to an immunosuppressant drug. I was very cautious during my first pregnancy as well as the first few months of Henry’s pregnancy, so it went against everything I had prepared for and wanted. On the flip side, I also was concerned about how malnourished I was from being so sick. I didn’t want to cause any more issues to my body or cause something to go wrong with my pregnancy.”

Initiating Remicade while pregnant

When Angela was 28 weeks pregnant remission became a distant thought, as her body was rejecting the infusion and she started flaring, again. She had a flexible sigmoidoscopy which showed she had severe amounts of inflammation in my colon.

“At 30 weeks pregnant, my bloodwork showed that my colon was nearing toxic levels and that I needed to have my baby early to ensure my organs didn’t shut down. A few days later, I was admitted to the hospital and my baby, and I were monitored for a week. I was given fluids and steroids to assist with the inflammation (a steroid shot was also given to me for my baby’s lungs). At this point, I had to switch OBs and delivery hospitals since I was admitted to a hospital that dealt with high-risk patients. This was the best decision possible since I was given an amazing team of doctors and specialists.”

Angela and her son were monitored closely. Four medical teams were on board to do all they could to ensure a healthy delivery—NICU, colorectal team, OB, and gastroenterology.

Her miracle baby, Henry, arrived 8 weeks early via an elective c-section April 1, 2021. Angela had a classical c-section (vertical incision on her abdomen) because after she delivered the colorectal team had to check her colon for inflammation.

Luckily, the inflammation was “only” considered mild to moderate. Angela’s bloodwork the day before had showed her colon was near toxic levels. She had been prepped for a possible ostomy. Fortunately, she still has her colon.

How Henry was after birth

Angela’s son was born extremely healthy and came out breathing on his own. He spent the first six weeks in the NICU to assist with growing and feeding and remained in the hospital for an additional week.

“I received another Remicade infusion a few hours after delivering as well as an additional infusion a few days later. Within 24 hours of delivering Henry, I felt like my old self again (pre-UC diagnosis) and I was almost immediately in remission. It was determined my UC was most likely dormant for years and my pregnancy triggered it. Additionally, my initial pregnancy flare started shortly after my second trimester and the Remicade failed when I started my third trimester. My medical team thinks my pregnancy hormones caused a lot of my issues.”

Postpartum as a newly diagnosed IBD mom

In the months following Henry’s birth, Angela was relieved to be feeling more like herself. The fear of a looming flare worried her as a stay-at-home mom. She ended up losing 30 pounds during her pregnancy and was recovering from a very painful c-section.

“Fortunately, I did receive counselling services throughout my pregnancy (after I was diagnosed) and postpartum which helped.”

Due to being on so many different medications and having a stressful birth, Angela had a low milk supply and therefore breastfed, pumped, and supplemented with formula the first few months.”

“I was grateful my baby and I are alive; every day I rejoice thinking of how far we have come, and I am extremely grateful he is healthy and happy. I now have a deep understanding of how short life is and I no longer stress about life’s minor hiccups. I constantly count my blessings and greatly appreciate my health which I took advantage of before my chronic condition. I am a mentally strong person now and I have amazing coping skills because of my diagnosis.”

Angela still receives Remicade infusions every 6 weeks and is extra mindful of her health. She works out a few times a week, eats healthy, watches her stress levels, and makes sleep and rest a priority.

“I am doing everything I can to stay in remission and have been flare-free for almost a year. Every three months, I see my gastroenterologist and have bloodwork taken to ensure my health is on track. Prior to staying home with my kids, I was a teacher and I plan to return to the classroom soon. I am blessed to know I have biologic options to help me stay in remission so I can be successful in the classroom.”

Despite only being diagnosed with ulcerative for 15 months, some days Angela feels like it has been years.

Here’s Angela’s advice for other women dealing with an IBD diagnosis prior to getting pregnant, while pregnant, or after delivering:

  • Seek out mental health assistance during challenging times and find a support group either locally or through social media to connect with others who live with IBD and understand your reality. Angela’s favorite Facebook group is: Ulcerative Colitis Support Group, which has 36,000 members.
  • Ask all the questions. Don’t hesitate to reach out to your care team whenever you’re unsure about something or want clarity. Do all you can do educate yourself on your condition.
  • Get a second opinion. Don’t feel bad about seeking care from multiple specialists to ensure you are making the best decisions for yourself.
  • If you’re a faithful person, lean heavily on prayer and trust that God will watch over you through the highs and the lows of your illness.
  • Communicate as best you can with family and friends. Angela is grateful for the love and support of her husband.

Connect with Angela on Instagram: @angiemknott

Focusing on what you can control: How this IBD Dad takes on Crohn’s

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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.”

Connect with Marquis:

Instagram: @mr_crohnsfighter09

How to find a dream team of specialists to take on IBD

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Living with an unpredictable and often debilitating chronic illness like IBD can be overwhelming. Being confident in the care team who leads the charge in managing your disease is incredibly important. Life with IBD is a marathon, not a sprint. The variables and challenges change with each year. You need a team of doctors who listen, advocate for you, see you as more than just a number, and guide you with personalized care.

This week on Lights, Camera, Crohn’s, we look at the steps you can take to ensure you’re in good hands and feel comfortable with the specialists in your arsenal. Much like a support system, having a care team of medical professionals who genuinely care for the IBD community makes all the difference in how you’re able to cope and make the best decisions for your health through all the peaks, valleys, and lows.

When you meet your GI by chance

Since I was diagnosed with Crohn’s disease in July 2005, I’ve had two chance encounters in the hospital with gastroenterologists (GIs) who ended up being my doctors for years after our initial meetings. The first time—when I was diagnosed in my hometown (Chicago suburbs), I hit it off immediately with the GI who was given my case. He ended up being my doctor for a decade.

Prior to moving to St. Louis in 2014, I was hospitalized with a bowel obstruction. My GI was 5 hours away, so I had to rely on a stranger to guide my care locally. The GI who looked after me in the hospital had a wonderful bedside manner and as much as I didn’t want to switch medical providers, I knew I would need to find a GI in Missouri. That GI looked after me for about three years, until I had my third bowel obstruction in 15 months, even after switching to weekly Humira injections.

At that point, one of his partners called my hospital room and spoke to the fact that I kept having hospitalizations for the same issue, but no changes were being made. He ordered an MRE (Magnetic resonance enterography) to find the underlying cause of the issue and see if bowel resection surgery was on the table. When the results came through, this doctor CALLED my hospital room, and casually told me I needed at least 10 inches of my small intestine removed. My actual GI never followed up. Never reached out. Never followed up with me after my surgery that ended up involving the removal of 18 inches of my small intestine, my appendix, and my Meckel’s diverticulum.

I knew after that surgery it was time for me to advocate for my care and get a different GI. I desperately needed to make a change. While it’s not easy to break-up with a doctor and it can be hard to navigate the medical provider landscape in a new city, I knew it was necessary. You must stop worrying about hurting someone else’s feelings and put your health—both physical and mental, first.

How I switched to a different GI

Whether you’ve recently moved to a new state or know in your heart it’s time to make a change. It’s important you feel empowered as you switch your specialists. When I had my post-op appointment with the colorectal surgeon, I asked him which GIs he would recommend. He gave me two names. I then reached out to my local Crohn’s and Colitis Chapter and while they couldn’t give me names of specific providers, they connected me with fellow patients who could offer up advice. I went to lunch with a few ladies with IBD and I was given the same name. That GI has been my doctor ever since (November 2015).

Since that time, I’ve been in deep remission. My GI is extremely proactive and aggressive with her approach. She leaves no stones unturned. She calls me directly if I write her and the nurses a question on the Patient Portal. I’ve had three healthy pregnancies and three healthy babies. She’s helped me navigate so much of the unknown and listens to my questions. She knows I’m a patient advocate who follows the research and stays on top of my health and rather than talk down to me, she takes what I have to say into consideration, always.

Discovering what matters most to you

Everyone has a different preference when it comes to the personality and approach of their doctors. Some prefer a gentle bedside manner. Others want no fluff and a direct, business-like approach. Some like a little mix of both. Think about what matters most to you. I’m a bit of a softie and bedside manner matters a lot to me.

Try and think of it this way—at your worst, when you’re hospitalized, what kind of doctor do you want leading the charge, walking into your hospital room, and guiding your care? If your GI is intimidating, lacks empathy, and is cold, it could add insult to injury and make your already dreadful experience that much worse. On the flipside, having a straight shooter who tells you like it is and doesn’t sugarcoat what’s going on can also be beneficial. Envision who you want by your bedside as you fight a flare and go from there.

There are GIs who do not specialize in IBD, so when you are seeking a new one, try and make sure their focus and expertise is Crohn’s disease/ulcerative colitis.

Navigating Medical PTSD with new care providers

Medical PTSD is real. Oftentimes due to the nature of IBD we are put into vulnerable positions because of where our disease presents. You may be asked at a research hospital if medical students can watch. You may feel uncomfortable or uneasy starting fresh with someone new. This is all normal and justified. Each time you have to re-tell your medical history you are forced to re-live your trauma. A friend of mine in the IBD community recently told me that her therapist advises her to write out your medical history.

This way you simply hand over a document to your care team that lays out your full story without any key details missing and without having to talk about memories and experiences that can be harmful to your mental health and well-being. Along with bringing a printout version, it can be helpful to upload the document to the Patient Portal. This takes the pressure off you to give a high-level explanation of your IBD journey and allows you to focus on the right now. The right now being the questions you have presently and what issues you want to tackle. Say goodbye to the elevator speech that tends not to include the nitty gritty.

Do your homework prior to the appointment by writing down your questions ahead of time. You can either have pen and paper handy to write down notes, ask the doctor if you can voice record the appointment so you have the details, or type the notes right into your phone.

Building your dream team

With IBD we all know a care team is made up of more than gastroenterologist. It can be helpful to ask your GI who they recommend within their hospital system so that all the records are readily available. By following up with a recommendation from your GI, you know the other specialist is someone they respect and someone who they would have effective means of communication with.

Trust word of mouth—but also trust your gut. If a medical provider feels dismissive, rushed, or like they aren’t listening to you, move on to the next. You are in the driver’s seat to build your team. Depending on where you live—I know it can be tricky and complicated to find accessible care and leading IBDologists. It may mean you have to drive a couple of hours every few months to receive the type of care your IBD demands. Ideally, your GI will be local so that when a flare up requires hospitalization you can go to the hospital and know who will lead your care. But not everyone is afforded that luxury. While I was finding my GI in St. Louis, I would contact my GI in the Chicago suburbs and keep him aware of what was happening. He provided me advice every step of the way and I’ll always remember how he called me from his cell phone the night before my bowel resection and assured me the surgery would be a “fresh start”. He was right.

While IBD is often out of our control, building your care team and finding specialists who do all they can to help improve your quality of life, understand your individual disease process, and constantly look to do more than status-quo, will give you the confidence you need when symptoms start to go awry or when you need to make major medical decisions about medication, surgery, and beyond.

IBD Motherhood Unplugged: My dog had IBD

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Many of us in the chronic illness community rely on our four-legged friends for comfort, support, and unconditional love. Animals are members of the family. February marks two years since my dog, Hamilton James, crossed the rainbow bridge, and the void and pain of his loss remains. As I write this, I’m facing the bookcases in my family room—an entire shelf is dedicated to him, and I wouldn’t have it any other way.

My dear friend and former college roommate, Lindsay, and her husband, Kevin, ironically had a dog with IBD. Yes, that is possible. This week on Light’s Camera, Crohn’s, we look at how IBD presents in animals and learn firsthand how my friends went above and beyond to bestow the same love, patience, and affection that they had been lucky enough to experience from their Foster Brown.

Love at first sight

One day Lindsay was perusing social media and came across a post on Facebook. The post featured a photo of a darling dog in Chicago and stated he had been re-homed five times and was only five months old. In that moment, Lindsay’s life changed. She knew she had to rescue that dog. And she did. One of my favorite traits about Lindsay is her sense of humor and genuine empathy for others. She decided to name him Foster Brown as a cheeky reference to his past. His gotcha day was January 5, 2012.

From that moment on, “Fost” and Lindsay became inseparable. Her love for Foster always reminded me so much how of I felt about my Hami. They were both Chihuahua-Terrier rescue pups who were with us before we met our husbands and before we had our children. They were part of our past and were with us through all of life’s major milestones. Heartbreaks, career changes, moves, marriage, pregnancy, motherhood, you name it.

Lindsay even found out Foster’s entire genetic make-up. Here was the breakdown:

62.5% Chihuahua

12.5% Miniature Pinscher

25% Breed Group(s): Terrier, Sporting, Sighthound

According to Fetch by WebMD, there is no one cause of IBD in dogs and the condition is not clearly understood by veterinarians. “IBD is a condition in which your dog’s intestine or digestive tract becomes inflamed consistently. The continuing inflammation damages the lining of their digestive tract in a way that prevents food from being properly digested. It can also lead to other health problems if nutrients are not absorbed as they should be.”

It’s suspected that IBD may be the body’s response to underlying conditions. Causes may include: genetic markers, food allergies, parasites, bacteria, or a weak immune system.

Certain dog breeds have a greater likelihood for getting IBD:

  • Weimaraner 
  • Basenji
  • Soft-coated wheaten terriers 
  • Irish setters
  • Yorkshire terriers
  • Rottweiler
  • German shepherd 
  • Norweigian lundehund
  • Border collie
  • Boxer 

IBD symptoms in canines

As a pet owner, you may wonder how IBD presents. According to AnimalBiome, dogs with IBD often deal with the following symptoms:

  • Chronic intermittent vomiting
  • Diarrhea
  • Loss of appetite
  • Picky eater or “not wanting to eat what they used to eat”
  • Nausea
  • Frequent lip licking
  • Increase in drooling especially when they’re presented with food, but they don’t eat it
  • Burping, extended neck
  • Heartburn, acid reflux
  • Flatulence
  • Gut grumbling, rumbly in the tummy
  • Bloating

When Foster’s health took a turn

Foster had always been healthy and energetic prior to these issues… aside from a few dental problems here and there which is common for small dogs. He used to be able to run 5 miles alongside Lindsay! Much like IBD symptoms in humans, Foster’s symptoms were gradual. Everything started going downhill the summer of 2020. His veterinarian noticed abnormalities in his blood work before symptoms began. Foster’s symptoms included weight loss, extreme hunger, restlessness, pica, and loose stools.

“During the last three months of his life, he started having rectal prolapses which typically resulted in a trip to the emergency room. There was once or twice that I was able to reverse the prolapse by putting sugar on it per vet recommendation.”

After several panels of labs and tracking medication, food, and triggers, Lindsey’s vet diagnosed Foster with IBD with lymphangectasia after he underwent an x-ray and ultrasound.

“I could tell that he wasn’t feeling well when he had loose and inconsistent stools. The other behavioral symptoms were trickier to identify because there had been so many changes- several moves (2016, 2017, 2020) and two babies (October 2019, July 2021). Looking back, it’s easier to tell that he was very sick. He was much pushier with seeking out food (hunger) and I didn’t realize until after he passed that I NEVER swept the floor- he ate everything that hit the floor including dust, hair, dirt (pica). I was very cognizant, however, that his need for affection changed. During his last couple years, he wasn’t nearly as cuddly and stopped sleeping under the covers.”

Treating IBD in Dogs

Foster had a morning and night pill box. Yes, you read that correctly. His vet was constantly adjusting his medications to reduce his symptoms and to attempt to stay ahead of other health-related problems. Much like we struggle to gain access to medication through specialty pharmacies, the same is the case with canines. In true IBD fashion, Lindsay would go through Walgreens, 1-800-PetMeds, a specialty online pharmacy, and the vet office to ensure Foster’s disease management was possible.

Some of his medications required refrigerator storage and another pill needed to be frozen because it upset his stomach otherwise. There was also a powder that was sprinkled on Foster’s food once daily. He ate a prescription low-fat food to avoid flare ups and it broke their hearts to deny him tasty treats like cheese and whipped cream that he was accustomed to.

The importance of caregiving for IBD carries over to canines, even moreso than adults since animals are completely reliant on their owners to ensure their health, safety, and well-being. Since each dog and their case of IBD is unique, it can be a game of trial-and-error to find the right treatment plan. 

“My husband, Kevin, was diligent in administering his medications twice daily, while I focused on tracking symptoms, communicating with our vet, and ensuring that Foster’s medications were stocked and placed in his pill box. My dad (a former paramedic) administered his weekly b12 injections; he also took Foster to the doctor/ER when I was tied up with my young children. Luckily, my parents were living with us during Foster’s final months and they both were critical in managing his wellbeing and health- helping with the kids so I could take Fost to appointments, pick up medications, administer medications, etc. Foster and I were beyond lucky to have lots of wonderful support.”

The final days

In the last months of Foster’s life, there were nights that he had to stay in the bathroom for “the time being” … don’t worry, he had a comfortable dog bed. He would cry and cry and cry because he wanted to come to bed, but it wouldn’t have been sanitary with the issues he was having.

“This was absolutely heartbreaking and sparked high levels of sadness and anxiety for me as well. After several emergency visits for problems that had no medical solution, I decided that Foster would never spend another night in the bathroom. On his final night, he slept in our bed thanks to some old towels and the creative use of one of my son’s diapers.”  

Advice for fellow fur mamas/dads whose dogs have health issues

In addition to caring for Foster and her two children, Lindsay is a practicing clinical psychologist in Indiana. She offers the following advice for caregivers of pets with chronic health conditions:

  • Check out Lap of Love. It’s a wonderful resource for navigating and coping with a pet’s chronic health problems. It has tools to evaluate quality of life and supportive information that helped prepare Lindsay for the loss of her fur baby. 
    • “I wish I would have recognized that the level of disruption to our family’s routine was related to the severity of Foster’s medical condition. Lap of Love was so helpful in finally recognizing that his suffering had become too much for him to bear and for us to stand witness. We didn’t fully recognize how sick he was until he was gone. You just get into this routine of caring for them and doing whatever it takes and almost forget that keeping them here might be prolonging their suffering. It’s hard because they can’t tell you with concrete words.”
  • Be open and specific about the support you need. It is immensely emotional and stressful to care for a chronically sick pet and have their life in your hands, be sure to lean on others and openly communicate during the difficult moments.
  • Be honest with yourself about your pet’s quality of life. Lindsay and her husband were grateful Foster didn’t go during an emergency. On his last morning, they were able to stop for a tasty meal that would surely have triggered a flareup. Even though he was only 11 pounds, Foster scarfed up every bit of his warm Egg McMuffin.
  • Discuss the financial aspect of your pet’s care with your vet. Since medical bills add up quickly. Most people don’t have insurance for their pets and even when they do, reimbursement is often spotty. Be open and check in as needed so you can work collaboratively with your vet to create a treatment plan that fits your financial situation. 

Foster passed away peacefully in a fleecy blanket while being loved on and hearing what a good boy he was and how lucky Lindsay and Kevin were to have him.

“I hated to hold his life in my hands, but I would never take back the amazing years Foster and I had together. It was just me and Foster before I met my husband and had kids and I could never thank him enough for his unwavering love and friendship. You’re a good boy, Foster, and momma misses you more than you could ever know.”

Foster Brown August 4, 2011-November 2, 2021

IBD Motherhood Unplugged: I have Crohn’s and COVID

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Well, after dodging the son of a bitch since March 2020 and doing all I could to stay well, I have COVID. My husband and I started with symptoms New Year’s Eve. Quite the way to welcome in 2022, let me tell ya. As an IBD mom of three little ones who is immunocompromised from my medication, I, like so many others have been worried about this since the moment the pandemic began. One of my greatest fears became my reality. My husband tested positive the day he was scheduled for his booster. I’m triple vaxxed (since late July!) and that still wasn’t enough to protect me. I do believe the vaccines lightened the load of the illness and I’m grateful we had them.

Like I do with all my blog articles and reporting, I prefer to be transparent and honest about my personal experience in hopes of helping others. I’ve been keeping track of my symptoms daily and monitoring how the illness has manifested in me since it began. In this article, I’ll also share how I was guided by my gastroenterologist and pediatrician in navigating this once my family was exposed and became positive. As of now, miraculously, all three of our children (ages 4 and under), have tested negative and appear healthy.

Discovering I was exposed

So many emotions ran through my mind. Fear. Dread. Anger. Frustration. Disbelief. Shame. Worry. I cried lots of tears. My youngest is not quite 6 months old. Like any parent, I have tried my best to shield him from all types of illness since he entered this world. More than myself I’ve been concerned about how his little body would handle COVID. My family of five was directly exposed for 44 hours straight. We all had the same exposure and the damage had been done. What was supposed to be a time to celebrate with loved ones over the holidays turned into a nightmare real fast. It’s been a waiting game. I’ve felt a lot of emotions since my symptoms creeped up the night we returned home.

Here’s how my COVID has played out:

Friday, December 31st—headache, brain fog

Saturday, January 1—headache, runny nose, fatigue, no appetite

Sunday, January 2—headache, runny nose in the morning only, a dry cough, a little difficulty breathing, no appetite

Monday, January 3—headache, runny nose in the morning only, bad cough with phlegm coming up, congestion, hoarse voice, no appetite

Tuesday, January 4—TESTED POSITIVE (no surprise there) Runny nose like a faucet in the morning only, migraine with auras, no appetite, bad cough with phlegm coming up, hoarse voice.

Wednesday, January 5—Runny nose in the morning only, headache, hoarse voice, same cough. Smell and taste lessened. All three kids tested negative through pediatrician.

Thursday, January 6—Less congested, subtle headache, hoarse voice, same cough, no appetite, fatigue, taste, and smell gone.

Friday, January 7—Can finally breathe through my nose, subtle headache, no taste or smell, no appetite, congestion.

Saturday, January 8—headache, no taste or smell, congestion.

Sunday, January 9—FINALLY no headache, feels like a head cold, no taste or smell. My voice is back to normal, feeling a lot more like myself.

Managing Crohn’s Through COVID

As someone who has lived with IBD for more than 16 years, feeling unwell and juggling unpredictable symptoms doesn’t feel like anything new. But, knowing how to keep the focus on managing my Crohn’s while having “normal people sickness” is often challenging, especially since COVID is so unique in how it presents differently in people and comes in waves. When my gastroenterologist learned I had tested positive she offered up the monoclonal antibody infusion or a 5-day course of Pfizer’s new over the counter pill, Paxlovid. Since I was unable to get tested until day five of symptoms and since my case was mild, I chose not to do either. Personally, the thought of sitting around all the germs in a hospital (even though I’m positive for COVID) didn’t sound appealing to me. There is just so much sickness going around right now. I felt more comfortable taking the illness on myself since it was not severe and have been taking Vitamin D, Vitamin C, Zinc, and my prescription prenatal and folic acid.

One big question many of us in the community have is what to do about biologic therapies when we test positive. I am on Humira, and my next injection is due today (January 10). I was exposed to COVID two days after doing my injection. My gastroenterologist told me I would be fine to stay on schedule since my symptoms were mild and since I did not have a fever. She went on to say that if I am not having pulmonary issues (which I’m not), that I should proceed with my scheduled injection.

Luckily, my Crohn’s felt non-existent the entire time I’ve been sick with COVID. It was almost like my body was solely focused on the upper respiratory issues. Oddly enough, and this may be TMI…but I always tell people in our community nothing is TMI… today (Sunday) I experienced a burning sensation in my abdomen for about 30 minutes, felt some nausea, and had several bathroom trips. It was almost as though the COVID was leaving my body, because the last 10 days I haven’t felt anything like this and now I feel a lot better.

Mom Life with COVID

What’s really made this entire ordeal torturous for me is having to do my typical stay-at-home mom life with a 4.5-year-old, almost 3-year-old, and 5-month-old, while having COVID and Crohn’s disease. Unfortunately, even though my husband was symptomatic and positive he had to work from home, so it’s been me in the trenches, wearing a mask from 6 a.m. til the kids go to bed, and not getting a moment to rest or recuperate.

What anyone with a family and COVID can attest to is how challenging quarantine is when you can’t have your village of support help you with the little ones or get any type of childcare break. Typically, Reid goes to preschool three days a week and Sophia goes twice a week. Even though their school days are short, and I’m used to having everyone home, I’ve grown accustomed to a little bit of downtime with the baby. Between Christmas break and our quarantine, our entire family has been home since December 20th. Even through I’ve been sick and on the struggle bus, my day-to-day actions have not been able to change at all. To say I’m running on E is an understatement. Don’t beat yourself up over screen time and not being able to entertain your kids, it’s survival mode at its finest. As an IBD mom, the fatigue that comes with our illness is nothing new, the only saving grace with COVID is knowing there should be an endpoint. While long COVID exists of course, I’m not sure I’d be able to even tell the difference since I already live with chronic illness.

Breastfeeding with COVID

Ladies, I thought breastfeeding through colonoscopy prep and not eating for the days leading up was intense. This has been a whole different level of effort. To protect the baby, our pediatrician recommended my husband and I wear masks in our house. People complain about wearing a mask to get groceries. Try wearing it in your own home, morning-noon-and-night for 10 days, nursing a baby while your nose is running like a faucet, you feel unwell, and fear you’re going to pass along COVID to your small baby because you’re in such close proximity. At times I’ve felt on the brink of having an anxiety attack because the mask and my breathing made me feel like I was gasping for air while trying to feed him.

That being said, I’ve never felt more grateful or fortunate to be breastfeeding my son. It does my heart good to know he’s getting my antibodies in real-time as my body fights COVID. While breastmilk of infected mothers does not contain COVID-19, it contains antibodies against it.

I found promising articles and research about the benefits of COVID-positive moms continue to breastfeed their children:

Can Mother’s Milk Help Fight COVID? New Evidence Suggests ‘Yes’

Liquid Gold: How Breast Milk Could Pass Along COVID-19 Immunity

FAQ on COVID-19: Breastfeeding safety for mothers

Luckily, thus far, my baby hasn’t shown any symptoms and continues to thrive beautifully as we gear up for him turning 6 months this week. I’ve prayed hard over him daily and I’m hopeful I’m nourishing him and providing him with the best protection possible by nursing him through this pandemic.

Recommendations Moving Forward

As I write this it’s 9 pm on Sunday night. I’m much more at ease and honestly since I’ve been sick since New Year’s Eve, the entire start of 2022 has been a blur. I’m sitting on the couch, fire going, taking a deep breath, and trying to relax. Now that hindsight is 20/20 here’s what I wish I did before and what my recommendations are:

  • Order rapid tests proactively: Part of the reason we were exposed initially was because my loved ones could only get their hands on one test (which was negative). We made the trip home only to find out two days later that my dad had been positive the entire time. I ordered four tests on 12/30 and they just arrived yesterday. Prior to all this, my kids and I had never been tested. It’s much smarter to have tests ready to go at home so you aren’t scrambling and forced to make a judgment call that could put you in the line of fire.
  • Get 3-ply surgical masks for little ones: My kids have worn cloth masks up until all this, but when they return to school later this month, I plan to send them in surgical masks for added protection. I don’t expect my little ones to wear N95s. Not only are surgical masks more convenient than constantly having to wash them, if they lose their masks or misplace them in the wash, I don’t have to run around trying to find a mask that’s clean and ready to go as we are rushing out the door.
  • Connect with your care team when symptoms start: If you have a chronic illness and especially if you’re on heavy duty medications (like biologics) I can’t stress enough how important it is to stay in open communication with your care team so they are aware of the situation and can guide you through it. COVID is nothing to mess around with. It’s not *just a cold*, trust me. I spoke with my GI and my pediatrician almost daily this week through the patient portals.
  • Don’t take unnecessary risks and let your guard down: We are all exhausted from this nightmare, and I get how we all want to enjoy life and not live in fear. But one risky decision—something as simple as going out to dinner or seeing family that you miss, can end up with a great deal of sickness that you’ll quickly realize wasn’t worth it. Get vaccinated, get boosted. We’ve lost two family friends this week alone who were unvaccinated and died of COVID. It’s beyond heartbreaking.
  • If you lose your taste and smell like me, I’ve been told the sooner you start smell training the better: My friend recommended I order four essential oil scents off Amazon—Clove, Lemon, Eucalyptus, and Rose. They arrive to me on Wednesday. I have also been told by multiple people to eat Hot Tamales Candy and spicy, potent foods to get taste buds reactivated and to drink celery juice. Smelling perfume, cologne, garlic, dish detergent, and candles several times a day for 20-second increments is also a way to help bring it back.
  • Chart your symptoms each day: It’s helpful to keep track of your symptoms each day in the “Notes” section of your phone, otherwise it’s hard to remember what you’ve dealt with. It takes out the guesswork when talking with your doctors and helps you see how you’re improving or getting worse.
  • Disposable everything: We’ve been using plastic Red Solo Cups and writing our names on them, paper plates, paper towels, you name it. Get the germs out of your house and avoid using shared hand towels, toothpaste, etc. with those you live with.

IBD Motherhood Unplugged: My son has Crohn’s and I published a book about our experience

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Overwhelmed. Terrified. Unsure. When Heather Hausenblas’ son, Tommy, was diagnosed with Crohn’s disease December 6, 2018 at age 16, she didn’t even know what IBD stood for. She knew she had a lot to learn and was on a mission to get her son healthy. Fast forward three years and now she’s a published author on the topic.

“Invisible Illness” chronicles how it feels from a parent’s perspective when your teenage child is diagnosed with a chronic illness for which there is no cure. The book provides an inside look at a mother struggling to find her way forward and how she turned despair into hope not only for herself, but for her entire family.

Heather Hausenblas, PhD, is a mother of three boys, health psychology expert, and award-winning researcher. She says when her eldest son was diagnosed with Crohn’s, her personal and professional roles collided. Not only was she going to battle for her child, but she also began her mission to help those with chronic illness eliminate the overwhelm and (re)discover health.

Dealing with the words chronic and incurable

“I kept hearing there was no cure, no known cause, no one treatment, and no one symptom. No. No. No. No. He will always have it. It’s never going away,” writes Hausenblas in her book.

Chronic and incurable-these two words were exploding in Heather’s mind on repeat. Tommy went from being on the high school baseball team, with lots of friends, doing well in school, and being very active…to living with a complicated and often debilitating disease. Everything in their life came to an abrupt halt. She explains how the illusion of youthful invincibility began to fade. Something anyone in our community can relate to. Health is often taken for granted until it is robbed away from you.

Feeling helpless through the struggles

She writes, “I could hear the pain in Tommy’s voice. But I was helpless. To put his excruciating pain in perspective, one Crohn’s patient described it as, “I’ve given birth without an epidural twice in my life, and the pain of Crohn’s disease was far worse than that.” “Tommy’s physical agony was accompanied by the unending frustration involved in trying to diagnose this complex disease. His symptoms and complaints had been overlooked—even dismissed.”

When a child or parent is diagnosed with IBD it impacts not only the person with Crohn’s or ulcerative colitis, but each family member in a unique way. It’s often said that IBD is a “family” disease.

“Torture was seeing my child wasting away to a skeleton, dropping nearly twenty pounds on his already lean frame, constantly running to the bathroom, and having excruciating pain. Torture was watching him leave the house only to run back seconds later for the bathroom while his friends went to the party.”

As a mom with Crohn’s myself, reading Heather’s perspective as the parent watching her son endure pain and hardships struck a chord with me because when you’re a young patient and are diagnosed before becoming a parent yourself, you often don’t take the time to think about how your disease and struggles are impacting the people who love you most. Not out of disregard, but simply because you are dealing with so much internally and externally it can be difficult to think outside of yourself.

Healing with food

While Heather shares a great deal of insight about the importance of diet and nutrition as it relates to IBD throughout the book, she also talks about the challenges Crohn’s presents since each person tolerates food differently. She explains how it’s impossible to find a one-size-fits-all diet but advises patients to journal everything from what they eat to how often they go to the bathroom to try and tailor a personal diet that works for you. Discovering your own triggers and knowing which foods are risky or tend to cause pain is a huge step in managing your illness.

“After a few weeks of strictly following the SCD (Specific Carbohydrate) diet, Tommy said that gluten wasn’t his issue. He somehow knew. He knew his body. He now eats gluten when he wants…Tommy’s liberalization of the SCD highlights the practical concern of adhering to a very restrictive diet.”

“Invisible Illness” includes 30 pages of helpful inflammation-fighting recipes. Throughout the book Heather talks about how she “detoxed and decluttered” her home and the cathartic effect journaling had on her coping process then and now.

Now, as a sophomore at Clemson University studying engineering, Tommy is in remission and does not take medication. He manages his Crohn’s by eating a healthy diet made up of organic, whole food, has an active lifestyle, and says his Crohn’s disease does not define who he is.

Forming connections and offering hope

Heather hopes that by candidly sharing her family’s journey with IBD that she opens the door for connections between other parents and families living the same reality. She recommends fellow parents to get involved with local organizations, so you recognize from the get-go that you are not alone.

Her main goal with publishing “Invisible Illness” was to “to help others navigate through the storm of medical and health information to figure out the right wellness path.”

How to purchase “Invisible Illness”

You can get your hands on a book by ordering a copy on Amazon.

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LinkedIn: Heather Hausenblas

Email: hhausen@ju.edu

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Website: www.heatherhausenblas.com