You’re told by your gastroenterologist you need a biologic to treat your IBD and that medication is received through infusion. Thoughts race through your mind–what’s it going to be like hooked up to an IV receiving your medicine? It’s completely normal to feel anxious, nervous, and uncertain. I’ve done self-injections since 2008, and never have needed to receive my medication through infusion, but I know that’s not the case for many.
This week on Lights, Camera, Crohn’s we hear from patient advocate Jenna Ziegler. Jenna was diagnosed with ulcerative colitis in 2014 and has recently added enteropathic arthritis and a rare autoimmune non-alcohol-related liver disease called primary sclerosing cholangitis (PSC) to the list.
Over the years, Jenna has learned how to prepare for infusions so that she can walk into the outpatient center with confidence. Check out her empowering tips for doing so—whether your infusions are at a medical center or at home!
Do Your Prep Work
Know if you’ll be given Benadryl. Some biologics require pre-medications that help prevent adverse reactions. These meds may include Tylenol, prednisone, or Benadryl. Find out ahead of time if you’ll be given Benadryl. Knowing you’ll be sleepy at and after your infusion can help you decide if you’ll need a driver and if you need to make arrangements for the rest of your day.
Plan out the rest of your day. You may be tired after your infusion—especially if you’re given Benadryl! Weeks before your infusion, make proper post-infusion arrangements .Maybe you’ll want to take the day off work or arrange for childcare so you can take a long nap or reschedule that evening’s outing to another day. Jenna encourages you to schedule time in your calendar to recuperate after the infusion.
Know your dosing and required blood work. By knowing your dose and what labs that will be drawn, you’ll feel more in control of your day. Ask your doctor for your dose and what (if any) labs the nurse will draw at your infusion. Then, when you arrive, you can double check that these things are correct.
The Day Before Your Infusion
The day before your infusion is critical: make sure you’re drinking enough water!
“Infusions require IVs, so it may ease your nerves to do everything in your power to make your veins as plump and visible as possible. I drink one gallon of water the day before my infusion. I chug 32 ounces every three hours and set reminders to keep me accountable. When I do this, my infusion nurse almost always gets my IV in with one poke! Also, a nurse told me that sodium retains water, so eating salty snacks the day before will also help keep water in your veins. Of course, run this by your doctor first!”
The Day Of your Infusion
Today’s the day! Here are three tips to help remove some of those infusion-day nerves.
1. Eat a proper meal. The day of your infusion, you want to fuel your body with healthy foods. This means a balanced meal with both protein and carbs. This is especially important if you’ll receive Benadryl or get blood drawn!
2. Dress in layers. One of the best things you can do for yourself is make sure you’re comfortable for your infusion.
“I find infusion centers very cold, so I suggest you dress in layers—just make sure you choose something where your veins are easily accessible. I tend to wear warm shoes, comfy pants, a long-sleeved shirt over a tank top, and a sweatshirt. Cozy and practical!”
3. Bring entertainment. Different biologic infusions vary in length, so if you’ll be there for a while, bring something to keep you entertained! Some of Jenna’s personal favorites are: books, journal, laptop, headphones, and snacks. If you receive home infusions, be sure to gather your supplies by your couch or the location in your house where you plan to receive the medication.
At Your Infusion
When you arrive at your infusion center, you’ll check in, probably sign some forms, and your nurse will show you to your chair. It’s okay if you’re feeling nervous. But remember, as the patient, you are empowered. Here are Jenna’s top tips to ease your nerves.
Ask for a warm blanket and pillow. Not only will this help you get comfortable, but placing a warm blanket over your arm will help prepare your vein for the IV.
Tell the nurse which arm/vein you prefer. Don’t be afraid to tell your nurse which vein you want them to poke. They’ll probably ask, but if they don’t, don’t be afraid to voice your preference.
Take your Benadryl slowly. If Benadryl is one of your pre-meds, they’ll probably either give you a pill or push it through your IV. If it’s via IV, ask the nurse to go slowly. Pushing the syringe too fast may make you feel lightheaded or nauseous. Again, don’t be afraid to speak up.
Confirm the info on your medication bag is correct. When the nurse is hooking your medication bag to your IV, it may make you feel better to see the label for yourself. Ask the nurse to show it to you, and you can personally ensure it has the correct patient name, medication, and dose.
After Your Infusion
You did it! Your infusion is over. Best of all, you’ve already planned out the rest of your day, so now you don’t have to stress about your to-do list.
“I encourage you to listen to your body—you might want to take a nap, take a hot bath, or have a relaxing night in with your family and pizza delivery. You’ve had a long day and you deserve to destress and relax.”
Remember, You Are Empowered
Over time, getting your infusions will become easier. Normal. Routine. And, one day, maybe even relaxing.
“I would have never thought that I’d find peace in my infusion days—these days that once made me nervous and stressed. But I now see my infusion days as relaxing, self-care days. This will come with time, and it starts with one thing: remembering that you are strong, empowered, and your own best advocate.”
It’s been 6,207 days since my life changed forever. On July 23rd, 2005, I was diagnosed with Crohn’s disease at age 21. Since that time, I’ve evolved and changed in ways I may not have if it weren’t for my IBD. After living in silence with my condition while working in television news for a decade, I decided to use my love for storytelling and speaking to be the voice I needed to hear upon diagnosis as I navigated the many crossroads of young adulthood (finding love, a fulfilling career, and having a family).
July 23rd also marks the day I launched my blog, Lights, Camera, Crohn’s. Since 2016, I have shared fresh content, every single Monday (sometimes even twice a week!). 336 articles on my site alone. More than a quarter-million visitors and more than 387,000 views.
It’s been a labor of love and a mission project that continues to fill my cup and implore me to constantly want to learn more and shed light on topics that are often not talked about. Every day of every week since my blog began, I’m constantly thinking about story ideas, topics of interest, people to interview, ways to word content, images that are needed…the list goes on.
This photo was taken at a wedding July 23, 2016, right after I pressed “Publish” on the first Lights, Camera, Crohn’s article. I found out I was pregnant two days later.
The weekend I started my blog in 2016, I was one month into married life and found out days later I was pregnant with my first child. Since then, I am now a stay-at-home mom of three children (ages 5, 3, and 1). Life has gotten way more hectic and busier with each year that passes, but I’ve held tightly onto fulfilling my promise to the patient community, and to myself, to deliver new content each and every week. I’ve been organized through the years—often having an article written days before my Monday deadline, but this past year, with another baby added to the mix, it’s been more of a stress on me. I’ve spent many Sunday nights finishing my articles. At times it’s felt like a lot to juggle. I haven’t wanted to let anybody down, including myself. And I haven’t wanted my content to start lacking in any way.
Don’t worry, Lights, Camera, Crohn’s is not going anywhere
My blog has grown into more than I ever thought possible. It’s so rewarding to know my words have helped comfort and guide so many in the IBD community. I need to cut myself some slack and give you a heads up that moving forward there may not always be an article on Mondays. It pains me to say that, but at this point in my life, in this season of IBD motherhood, I need to start taking time to rest and relax. Since having my third baby last summer, I get my kids down for the night and START to work around 830 pm. It’s just constant. I truly rarely get a break. I’ve been in remission since August 2015, and I don’t want the stress to get the best of me.
You may not be aware—but my blog is only one aspect of my advocacy work. I also spend a great deal of time working with digital healthcare companies, patient-centered non-profit organizations, sitting on advisory boards and patient engagement teams, communicating with patients in need online and over the phone, and do freelancing work on the side, all without childcare.
I laugh as I write this because I already have three articles lined up for August…so there will be months where there IS an article every Monday. Just not always. My commitment and desire to serve as a patient leader is not waning in any way—I just want to be honest with you, my loyal readers, that this mama needs to lighten the load and take a little self-imposed stress off my shoulders.
I started contemplating this a few months ago, and almost changed my mind this week about sharing, but it’s time. We had an AMAZING 6-year streak of constant new content. I’m excited to see what this coming year brings in the way of patient stories, research, and perspectives. Having extra time to work on articles will really allow me to do more special reports and expand my “IBD Motherhood Unplugged” and “Patient Experience” series.
Thank you for giving me so much to talk and write about, always. There are endless topics that need to be brought to the forefront and I love providing a platform for others to share their journeys and experiences with the community. As always, please reach out if you have a story idea you want me to cover. Lights, Camera, Crohn’s has truly evolved from being a blog about my IBD experience to an award-winning and well-respected site that has highlighted hundreds of different patient stories and physician perspectives—and I love that. There’s no greater compliment then when I hear a gastroenterologist uses my blog to educate their patients.
Excited to see what 2022-2023 brings! Thanks for the love, support, and understanding and for making the first six years of Lights, Camera, Crohn’s what it was.
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.
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.”
Ah, specialty pharmacies. Just hearing those two words probably makes you feel a certain way. I’ve been coordinating my Humira through mail-order shipments since July 2008. Nearly 14 years now. Since that time, I’ve dealt with several different pharmacies. Each job change or insurance shift has resulted in a specialty pharmacy update. Lucky for me, each transition has been seamless. Except for now. My husband’s company switched specialty pharmacy providers at the start of 2022. I went from using Alliance RX Walgreens to Accredo Express Scripts.
The first shipment went well, but my second month was a mess. I’ve ordered Humira monthly—163 times to be exact. This was the FIRST TIME I didn’t have my medication on time and had to do my injection late. This week on Lights, Camera, Crohn’s a look at the literal and proverbial headache countless chronic illness patients are forced to deal with month after month and my advice as a veteran Crohn’s patient for all specialty pharmacies moving forward.
Here’s how it all played out (This ordeal gave me a pounding headache)
I ordered my Humira over the phone like I always do, and I was told it would ship to me on Thursday, February 3 and arrive on my doorstep February 4. That day came and went. Radio silence. Crickets. No communication about a delay due to winter weather. Mind you, the roads were cleared, and the snow had stopped the day prior.
I called Express Scripts on Saturday, February 5th and spoke with 2 call representatives, or as they call themselves “patient care advocate representatives” …insert laugh. Both representatives were incredibly dismissive and told me conflicting information. The first told me the shipment went out FedEx on the 3rd…but that she didn’t have a tracking number. She insisted on giving me the number for FedEx so I could track down the shipment or go to a facility to pick it up. Um, no. I refused and told her she should be able to track it down for me and that this was not my responsibility. She told me I could talk with a pharmacist about my concerns about my temperature-controlled medication being out in the elements during the Midwest winter for five days.
She puts me on hold for 10-minute stretches, and finally after 3 times, I ask to speak to a manager. She tells me she has a manager on the line and that she’ll connect me through, but I end up on hold, again. Finally, she returns and tells me the supervisor can’t receive her call, so I tell her to just call me back directly.
While this is going on, I have another call going through on my husband’s phone in hopes of getting through to someone. That representative was even MORE dismissive. Did not apologize. Acted like I had an attitude and told me there was nothing she could do.
When the “Resolution Team Leader” called me back directly she informed me that shipments go through UPS, not FedEx. Wow. Good to know. Glad I didn’t waste more of my time trying to get through to a FedEx facility on a Saturday. She told me that unfortunately the soonest medication was able to be shipped to St. Louis through their Memphis UPS facility (I learned that’s where my Humira comes from) would be Monday, but most likely Tuesday (Feb. 8).
Here’s why this is so problematic
IBD patients and chronic illness “customers” of specialty pharmacies are on scheduled medications, in my case, a biologic. This isn’t something that you can just delay because ‘oh well, it’s sunny and 45 degrees, it will come in a few days’. Lucky for me, I’m in remission with my Crohn’s disease. What if I was flaring? What if this was a loading dose of the medication that I needed to receive? What if I was traveling and had planned to pack my injection with me? What if I had been off my medication to deliver a baby and needed to start it back up? What if I were pregnant and couldn’t chance missing a dose? There are so many complicated scenarios. This isn’t a pair of leggings I ordered off Amazon that can wait a few days. This is medication that controls a debilitating and unpredictable disease.
Here’s how Express Scripts and pharmacies can do better
Basic business etiquette with customers (aka your patients). Don’t belittle, diminish, or act like you could give two shits about the other person on the line. We are chronically ill people who are juggling a million balls in the air at once to function like the rest of society while managing our health. The last thing we want to do is waste our precious energy going back and forth on the phone and having to stress about getting the medication we depend on to function.
If there is inclement weather or a reason for medicine to be delayed, you should be sending text and email alerts. I was told by the Resolution Team Lead that I was only partially opted in for these—mind you, this was my second re-fill of medication with Express Scripts. The first time a patient sets up an order this should be discussed with a patient over the phone.
I’ve been receiving specialty pharmacy medication in the mail since 2008. This isn’t my first rodeo, but this is the first time I’ve ever had medication delayed. Mind you, I’ve lived in Minnesota, Wisconsin, Illinois, and Missouri this entire time and encountered snowstorms and blizzards each winter without delivery issues. The snow stopped here on a Thursday…but my medicine can’t come until a Tuesday through UPS? Mind-blowing.
Since I was not notified on this delay, I spent all day checking my front porch, anxiously awaiting the delivery so it wouldn’t sit out and freeze on my doorstep. If I wouldn’t have proactively followed up the day after my medication was to arrive, I would have had no way of knowing when my shipment was going to arrive or what happened.
The onus of this should not be on the patient. We’re paying THOUSANDS of dollars for medications. The burden of this should be on the specialty pharmacy who has the job of coordinating prescriptions and making sure they are shipped.
Talk with patient advocates from all disease areas to help you learn how to best communicate and coordinate care. This blog is free advice. If you want invaluable insight like this moving forward, be prepared to compensate patients to share their viewpoints that you wouldn’t otherwise have. Give us a seat at the table to inform you of the shortfalls and the wins so you know where the improvements can be made and where you are successful.
Be kind and understanding when doing these phone calls. Think about the patient who is person on the receiving end who is calling about medication with a laundry list of side effects. It adds salt into the wound when your experience coordinating medication shipments is so negative and unempathetic. We are not just numbers.
As patients our hands are tied. We must go through the specialty pharmacy allocated to us through our insurance. You have that going for you. Now you literally have one job… to do yours.
“Sincerely” want to help, yet never reached out as they claimed they would over tweets and direct message. That “empathy” is clearly all for show.
I tapped into the IBD community on Instagram and was blown away by the number of direct messages and comments from those who have struggled to get their critical medication through specialty pharmacies. This is unacceptable and eye-opening. Here are *some* of the stories.
“I will never use Express Scripts for my Humira, again. When I started it, I couldn’t walk or stand or do anything really because of my ankylosing spondylitis. They had the audacity to tell me I can expect my first shipment of medication in 1-2 months because there’s a lot of “processing involved.” They were acting like they were making the drug themselves. It had nothing to do with pre-certification. Everything was already processed and approved through insurance. Luckily, I was able to get my injections from a local specialty pharmacy the same day I called.”
“The number of issues I’ve had over the years with specialty pharmacies is ridiculous. My GI has an unlimited expiration/refills for my prescriptions, yet every year we must “renew” and it’s never at the start of the year. It’s always some random time when my shipment doesn’t go out as scheduled and the only reason, I find out is because I call and question the delay. They’re NEVER proactive. One of my most frustrating situations was a delayed delivery. It was supposed to arrive via UPS per tracking. The driver never showed. I called repeatedly and no one could tell me where the driver was. Eventually the next day I learned the driver left it in the truck and brought it back to the warehouse where I was told by the pharmacy to go and pick it up myself. Mind you it had already exceeded refrigeration time so there was no way it was safe for me to use. I then spent the next two days trying to get a new shipment processed.”
“From personal experience with Express Scripts and their specialty pharmacy Accredo, my Stelara is delayed every time. It’s gotten to the point that if they are going to make me late on it, I make them do same day delivery. They can make this happen if it’s not a holiday. Insist the medication gets delivered and don’t back down, demand for a private courier service.”
“I have to use CVS Specialty Pharmacy for Humira, they are absolute trash. I confirmed twice that my Humira would ship, and then it never arrived. I called and they took my insurance information, again, and told me it would take three days to process before I could re-order my medication. I waited and called again and then they told me my insurance had been denied. I was on the phone for six hours trying to figure out what was wrong. They finally re-shipped the medication only for it to be delayed by UPS and 8 injectable pens got too warm and had to be discarded…so I had to start again with another shipment! By the time I got the package, my dose was a week late.”
“I recently switched from my hospital’s special pharmacy to CVS Specialty Pharmacy due to my insurance changing and I didn’t get my Humira until 10 days after I was due for my injection. It was such a frustrating process and anxiety provoking.”
“Express Scripts issue with Humira. I spent 30 minutes trying to work out a $1,000 billing error on their part. After a half hour, they told me that they couldn’t fix billing issue the same day and that I would need to call back the following day and have the same conversation all over again.”
“Optium RX makes me cry at least once a year. Every year I try and beat the pre-authorization loopholes to get my medication on time and there’s always something new. Having to push my medication schedule is so defeating.”
“It’s a mess trying to work with a specialty pharmacy. I have never had a pleasant, easy experience with them. I’ve had four medications (IV and self-administered) sent to Accredo within Express Scripts over the last nine years. To this day, I have to spend at least an hour on the phone so they can run the co-pay assistance information…so for a bit, my co-pay was $2,000!”
“I have been on biologics for about a decade, and I think I could write a book about specialty pharmacy debacles. The latest being that as I was checking out on the phone, the rep commented on my insurance because it had my husband’s company (a popular brand). Thing is, he left the company 18 months ago and at that time I contact the pharmacy with my new insurance, went through the run around of changing insurance getting pre-authorizations, etc. They had been charging the old insurance the entire time. They attempted billing me $18,000 which I am still fighting. I’ve spent over 50 hours on the phone dealing with this and had many sleepless nights.”
“I went without my biologic for nine months because my insurance company through John Hopkins Hospital said I required prior authorization, when in fact I had prior authorization for the 277 refills that my prescription had. I had to advocate for myself to both my GI and primary care physician and they sent 378 pages of my medical records along with a 3-page email about my medication for it to be approved. To this day, I still have issues processing my orders.”
“At the end of the year, I received an email from Express Scripts that said Remicade would no longer be covered, and I would need to switch to the biosimilar, Inflectra. I called to confirm this, and no one could help me. I spent 8 hours over the next two weeks trying to determine if this was really the case. I had to call Blue Cross Blue Shield who then said I should speak to Express Scripts…who then transferred me to the Specialty Pharmacy, Accredo. I was then told by Accredo that I should talk to Blue Cross. It was the most frustrating thing. All I wanted to do was confirm if Remicade was not going to be covered and if it wasn’t what the cost of the biosimilar was going to be for me. Finally, a pharmacist assistant at the infusion center was able to help me.”
“My specialty pharmacy was late with my FIRST maintenance dose of Humira by 3 weeks. The pharmacy said they could only find the prior authorization for the loading doses and not the doses after. Then, my doctor sent me the copy of what they sent the first time, and my maintenance doses were clearly part of the prior auth. The pharmacy argued with me that my doctor didn’t fill it out correctly. They finally sent it, but accidentally sent it FedEx ground in July…and had to re-send it.”
“When I first switched to Humira, Express Scripts, said it wasn’t on their preferred list unless there was a good reason. I told the call rep I had gone into anaphylaxis. She said that I was going to need an actual reason or something serious. I told her I was going to need to speak with her manager because last I checked…not being able to breathe was serious.”
“My workplace changed insurance carriers and promised me that coverage would remain the same through Cigna and Caremark, with the specialty pharmacy being Accredo. Suddenly, I got a call that the Entyvio I take every 4 weeks is not covered at that frequency and also not covered at the Family Health Center where I’ve always received it. Naturally, I raised hell. Had to submit a new pre-certification which took almost 28 days to get approved, switched to a new private infusion center and abandoned my tried-and-true site, and spent more than 8 hours on the phone to do one simple thing: be able to receive the medicine I’ve taken for years. It’s unreal how insurance and specialty pharmacies just make decisions without considering the inconvenience and stress it puts on patients.”
“Specialty pharmacies are just an additional hurdle between a patient and their medicine. It’s like you’re playing a game of telephone and more players are added to the circle and increasing the odds of a miscommunication. When a problem arises you now have to make sure you smooth it out with health insurance, your doctor’s office, and your pharmacy. Oftentimes you don’t know where the problem arises in the first place because of all the finger pointing. I haven’t had a Remicade infusion since December 16th…even though I’m due every 4 weeks.”
“I had a specialty pharmacy send me my Stelara injections without ANY cold packs. Just in a cardboard box. I had not refilled it in 4 months because I was on Entyvio at the time so luckily, I wasn’t going to use it, but it was a mess. The company was so accusatory when I asked to return it until I told them there were no cold packs…shut them up real quick.”
“I called Accredo weeks ago to make sure my medication was going to arrive because my GI sent in a renewed script. I followed up daily the week I wanted to place the order, but they kept saying it was in processing and delayed. My prior authorization goes to 2024, my doctor did everything he could, yet Accredo still couldn’t tell me what the hold up was. I’m 33 weeks pregnant and I really don’t want to mess up the timing of my doses. Person after person says they have it handled, but it’s never the case. I feel like they just give the runaround to get you off the phone. It’s unbelievable how much time gets spent dealing with this. It feels like phone call roulette. It gives me serious anxiety every month.”
“When the new year started my specialty pharmacy would not accept my new Humira Savings Card. It took 10 phone calls and all parties, and it ended with an hour and a half call trying to get $5,000 reimbursed. The provider laughed when I asked then I had him call AbbVie and within 10 minutes the guy did a complete 180 and I was reimbursed. It’s scary to think what would happen if a patient didn’t fight back or speak up.”
“Your post about Express Scripts is triggering. My daughter, age 25, was diagnosed with UC at age 17. She is on our insurance a few more months. Express Scripts became our new online pharmacy a year ago. They’ve been horrific to deal with. She’s only on basic medications—mesalamine, Canasa suppositories and enemas. I dread the thought of what it might be like with them for more complex medications.”
…and there were SO many more messages that I received. Are you seeing a pattern here? This is ridiculous. It’s heartbreaking, frustrating, and sad. The incompetence and lack of care is comical. DO BETTER. I spoke with five different call reps/managers at Accredo and each time it was like I was calling for the first time. Take notes when you’re talking to patients/customers, so you don’t sound clueless on the other line and waste everyone’s time. You can at least pretend to care.
Advice for handling specialty pharmacy issues
Document, document, document! If you are having trouble with your specialty pharmacy, you should document each call and issue. Take note of the date, time, and describe what went down. Then, send a log of all the issues you’ve had to your employer and whoever oversees insurance so that they are aware. If HR gets enough complaints, they’ll look into a new pharmacy for employees.
Advocate for yourself and don’t back down. Be a thorn in their side. Tell them like it is and always ask to escalate the issue and speak to a manager. Get your GI involved and have them go to bat for you, too.
Check with your GI if you’re in a pinch. Oftentimes GI offices carry a couple of injections. You may be able to go and pick one up at the office if you need one. Always worth an ask if you’re in a tough position and don’t know when your medicine is going to arrive.
Contact the pharmaceutical company who makes your drug. One of my IBD friends manages a large practice in Boston. She advised me to contact the AbbVie Ambassador, which is a program available to patients for situations like this. They can overnight you a Humira pen to bridge the gap while companies like Express Scripts figure out their mess.
“The AbbVie ambassador program is a lifesaver for many of our patients when the specialty pharmacies fail! It is soooo frustrating. We see it all the time in our patients, and I’ve experienced it personally, too.”
Utilize social media. Having an issue with your specialty pharmacy? Head to social media (Twitter is best for this) and tag them publicly with your complaint.
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.
Work life balance takes on a whole new meaning when you have chronic illness. Molly Dunham-Friel can attest to that. Diagnosed in 2012 with ulcerative colitis, one year after receiving her undergraduate degree, Molly was forced to begin her professional career with unexpected titles she was just getting accustomed to—IBD and IBS. Molly remains just as ambitious and aspirational as she was prior to her diagnosis, but undoubtedly has experienced common roadblocks that come along with living with chronic health conditions. While the career detours were not always welcome, the experiences Molly has had over the last nine years blossomed into finding what she is truly passionate about.
This week on Light’s Camera Crohn’s we take a close look at having IBD in the workplace, whether you work in an office or at home.
Quite the Go-Getter
While IBD is unpredictable, one constant in Molly’s life has always been her go-getter attitude. She tells me she’s been known to work multiple jobs since the age of 15.
“I am not very good at slowing down and I get frustrated when anything gets in my way, including being chronically ill. The one professional aspiration that I have always held is my drive to help people in need, the marginalized, the forgotten, the invisible, the ones who truly need my help.”
Since her ulcerative colitis and IBS diagnoses, Molly has worked full-time, while often holding additional part-time jobs. At one point she was working five jobs, simply to pay for her healthcare costs! Molly says life got more complicated and extremely overwhelming once she turned 26 and could no longer be on her parents’ medical insurance
“It was stressful and defeating because now I had added pressure to hold a job that provided me with affordable medical insurance to get the care I need as a chronic illness patient. IBD is extremely expensive to manage due to the medication, procedures, doctors’ visits, labs, you name it, it costs a lot. This felt heavy as a 26-year-old still learning how the world works and how I wanted to make the world a better place.”
Molly has had to leave jobs she enjoyed to go to companies with better benefits, which also came with less satisfaction.
“I have been stuck in jobs solely because I needed the cost controlling benefits the organization offered. I have had to say no or not apply to amazing jobs and organizations because the benefits would not cover my chronic illness needs enough where I could afford it. I feel like my health insurance needs as a chronic illness warrior trump my career aspirations, which feels suffocating and leaves me frustrated. I want to do what brings me joy and not just what brings me healthcare coverage.”
New purpose, new goals
After starting her blog, Better Bellies by Molly, beginning to volunteer with the Crohn’s & Colitis Foundation, and connecting with amazing warriors via social media. Molly realized her passion for helping to support the IBD community.
“My goal is to support, educate and empower chronic illness patients, particularly those living with IBD and IBS, so they don’t feel alone, like I did upon my diagnosis. I am also passionate about helping patients feel empowered to advocate for their health. I haven’t figured out how I will turn this into my career, but blogging and social media is a great start!”
Advice for those with chronic illness nervous about working
There is no sugar coating how hard and demanding it is to work full-time on top of the full-time job of managing chronic illness life. Here is Molly’s advice:
No job is worth your health. Put your health first whenever you can.
Know your rights. IBD and IBS are both conditions listed in the American Disability Act. If you are discriminated against due to your IBD or IBS, speak to someone you trust to fight for your rights. Depending on the organization, employees with disabilities can submit formal paperwork to receive reasonable accommodation, which is any modification or adjustment to a job. Like most things with chronic illness, there is a lot of paperwork involved, but reasonable accommodation is one mechanism to look into in addition to going to HR and asking what other accommodations your employer offers.
Who you work for matters. Having an empathetic and compassionate boss and supervisor makes working full-time while chronically ill more enjoyable.
Disclose what you wish to disclose when you wish to disclose it. I currently find disclosing my disability status/medical conditions helpful so that my leadership can support me, but it took me six years to get to this level of confidence speaking about my chronic illness life. Give yourself time and grace. I have not always been met with compassion and understanding so follow your intuition and share when you feel ready. I have only held two jobs in the last 10 years where my diagnosis was discussed prior to being hired and onboarded and one of those times it was because my diagnosis related directly to the work and the other was because my advocate work made its way onto my professional resume and after sharing my story online and growing comfortable talking about it.
The more flexibility the better! Ask about work life balance ahead of time. It is especially hard to work an 8:30-5 job which a chronic illness because work hours directly conflict with when doctors’ offices are open and operating. Most medical facilities outside of hospitals are not open for routine or diagnostic care on nights and weekends so the more flexibility your work will allow, the better.
Follow your passion, even if you must detour. I have had so many career detours due to my health insurance needs and flare-ups, but I have never stopped pursing my passion for helping others, even if that meant starting something of my own outside of my full-time work.
Working full time is hard, working fulltime while chronically ill is harder. Juggling work alongside appointments, sick leave, flexible scheduling, and economical health benefits can be overwhelming. These can be hard to find, but as chronic illness patients we are no stranger to doing hard things.
The new perception of working from home
The pandemic has helped companies, organizations, agencies, managers, supervisors, and senior leaders recognize that so much can be accomplished and in many instances that more can be accomplished, by working from home, teleworking more often, and commuting less. It’s not surprising that companies that have pivoted into a more flexible scheduling system will be more likely to retain top talent, including us chronic illness warriors!
“I wish it didn’t take a global pandemic to teach the world that we can work from anywhere, that we can be trusted as employees and that yes more flexibility might actually make us better employees. I think the perception of working from home has drastically shifted and is no longer viewed as an “easy way out” or something that will lead to employee’s “slacking off.” However, I have realized that while many companies and leaders have made this shift, not everyone has and that there is still much room for improvement.”
Working from home benefits patients with IBD and IBS by:
Being able to use our own bathrooms, with our preferred toilet paper and easy access. No longer fearing if the bathroom is occupied when the moment hits.
Not commuting lowers stress and gives us back the time it takes to travel back and forth each day.
Being able to work while feeling ill is easier when in the comfort of your own home, with your blankets, heating pad and supplies to help keep your body as comfortable as possible, while also getting work done. Many times, this would not be possible in an office setting.
Leaving the house can be anxiety producing for those with IBD and IBS due to the often very sudden need to use the restroom. Being able to work from home can diminish that fear.
Having access and privacy for administering medications throughout the workday is easier done at home.
Allowing flexibility to work around doctor appointments, infusions, lab work, procedures, you name it.
Breaching the subject with a boss or superior
Much like the stress surrounding when to tell a love interest about your health conditions, knowing when to the tell a boss you have IBD can be worrisome as well.
Here are Molly’s tips for approaching the subject:
Unless an emergency is forcing you to disclose your condition, I recommend sharing when you feel comfortable to do so.
Begin by asking if they know what your condition is “Have you ever heard of IBD? Do you know what IBD is?”
Based on their answer, follow-up with education and explaining how your condition impacts your life.
A good supervisor will ask you how they can support you. Be prepared to ask them for what you need which might be a flexible schedule or understanding that your illness is invisible, and you are in fact a motivated and loyal employee.
Sharing is not for everyone, but you might be surprised who else at work is dealing with a chronic illness, bosses included.
IBD Wins in the Working World
*Having bosses who support you personally and professionally lowers stress which supports optimizing mental and physical health.
*Finding ways to unwind—whether it’s exercising, taking Epsom salt baths, or going to therapy.
*Use each professional experience to help shed light on where your passions lie. You’re constantly learning what you like, what you don’t like, and each experience helps to inform the direction your career will take.
*Celebrate all the wins—large and small.
*Be mindful of how your employer handles a hospitalization, flare up, or surgery. It’s telling to see how your work family supports you or doesn’t in times of need. Your health should always be the top priority.
*While chronic illness may hijack where you thought you would be in your career, it may help dictate what you enjoy doing.
“As chronically ill workers we need to voice our needs and push for systems to change so that we can break down barriers, make working more accessible to the chronic illness community, and to obtain and retain talented chronic illness employees.”
Key Takeaways
It won’t be easy, but you can do it!
Feel empowered to stand up for yourself.
You deserve to be accommodated in the workplace and it is not a weakness to have a disability or need special needs.
Chronically ill people belong in the workforce.
You can still achieve your dreams after diagnosis, they might just look different.
Your career path might not go according to plan, and that is ok.
Follow your passion and heart whenever possible.
Working full time isn’t the answer for everyone.
Give yourself grace.
No job is worth your health.
If a job is making you sicker due to stress, toxic environment, or lack of flexibility, work towards changing that situation.
Your aspirations, dreams, goals, and plans will shift over time. Honor where you are and how far you have come!
There’s power in surrendering to your IBD. It takes time to reach that mindset and it’s something author and patient advocate Christine Rich eloquently explains in her debut book, “Chronic”. Christine reached out to me when she was doing the initial writing research and we hit it off instantaneously. There’s something magical about connecting with strangers who understand your reality. You may be thousands of miles apart, with different back stories, but the common thread of life with chronic illness makes you feel seen, understood, and like lifelong friends.
Christine, now a 41-year-old married mom of two, was diagnosed with Crohn’s when she was in high school. It took time and struggle for her to truly process all she endured and reach the point where she is today.
“Many of us are taught to smile, be grateful, and make everyone else feel all comfy and cozy at the expense of our own comfort and well-being. The problem with these types of expectations is that they are lies that create loneliness and rage that eventually turn women against themselves and their potential.”
This quote really spoke to me. Having an invisible illness like Crohn’s disease, one of my biggest struggles in my 16-plus years since diagnosis has been feeling comfortable with making those around me know how uncomfortable I am in any given moment. It often feels a lot easier to just put a fake smile on and pretend you’re not in pain. But, in doing so, we are only hurting ourselves and deepening our personal struggles.
Advocate for and take care of your body
Christine’s powerful journey exemplifies all the work and personal development it takes to discover self-acceptance, grieve the loss of the former you, ask for help, and feel empowered. She speaks of the trajectory we all go on from the point of diagnosis to becoming a “veteran” patient years later. Take a moment to think of how you have personally transformed since you were told you had IBD. That transformation is one that takes a great deal of time and personal growth, but once you come out on the other side you won’t look back aside from reflecting on how far you’ve come.
“When I walked in for my outpatient procedure that warm July morning, I was arrogant, afraid, angry, and emotionally incompetent. When I walked out (well, wheeled out is more like it) I was humbled, vulnerable and awake in a way I had never been before in my adult life.”
This quote paints the picture of what life is like with flare ups that result in hospitalization and how we evolve through the setbacks. Often those in our lives think we’re “all healed” the moment we cross through the hospital doors, when in actuality the healing process is something, we’re constantly going and growing through.
Thinking of your body as an ally, not an enemy
One of my favorite chapters in “Chronic” is Chapter 14—The 4th F. Christine’s words and experiences really resonated with me.
“After working through the peak of my resistance, denial and rage I realized I had made an enemy out of my body for far too long. I had turned my back on her for being different. She wasn’t broken. I wasn’t broken. We were both sad and not fully aware of the other. I needed to learn how to stop fleeing and fighting my body…I needed to befriend it.”
She goes on to explain how altering her perception of the way she looks at her body and thinks about it, has shifted her entire life experience, and brought her to where she is today.
“I was faced with a choice: continue to carry this anger and self-hatred until it sunk my health, my marriage and my self completely, or decide to feel it all and acknowledge that my body is not and never was an apology, enemy or failure.”
Rather than our community thinking of Crohn’s and ulcerative colitis as a villain trying to destroy it, Christine asks what if we treated our chronic illness as a small child seeking love and attention?
“What if I could make friends with my body? Love her and care for her like I do my own children.”
In my own personal experience with Crohn’s, I’ve also learned to be in-tune to the subtle signs my body is trying to communicate through symptoms. Rather than constantly shutting that communication out and trying to push it to the back of my mind, like I did in my 20’s, now, I listen closely. That voice is part of a constant inner conversation that is part of every hour of every day of my life. Even in remission—each choice, each decision I make, has my Crohn’s in mind. Because as an IBD mom of three, my disease impacts a lot more than “just” me.
“Although I would never be able to control the circumstance of my diagnosis, I could control my perception and reaction to it. I could start telling the truth. I could stop punishing myself.”
This is so important. Even though we were all powerless over receiving our diagnoses, we’re not powerless in how we choose to live life after our diagnosis. The unpredictability of the disease may make us feel like we’re constantly on edge, spiraling out of control, but by being proactive rather than reactionary and by making efforts to manage our disease on every level (physical, emotional, and mental) we set ourselves up for a much-improved quality of life. IBD doesn’t have to be the headliner of our lives, it can be more of a footnote.
There’s no fixed end point with chronic illness
Christine says her therapist tells her to go to her 17-year-old newly diagnosed self as her current 41-year-old self and hold her hand. Tell her it’s not her fault. She goes on to explain how there’s no fixed end point with chronic illness and that the collective power of patients in the IBD community must discuss the mental anguish that’s often brushed under the rug.
“For the life of me I can’t figure out why mental health screenings aren’t standard practice of care. They test and screen us for everything else. They test our blood and our stool. They examine our rectums and colons. They poke and prod us top to bottom…they examine everything but our minds.”
She calls on all of us to be “chronic truth tellers”—which I love. The more doctors hear the same message over and over again directly from patients, the better chance we have to impact change. This takes effort and a heightened sense of vulnerability on our parts, but reaps endless benefits. We can’t take care of our whole self by simply focusing on the physical manifestations of our illness.
In “Chronic” one of my favorite lines is when Christine recalls how one of her yoga teachers once said, “what we resist—persists.” In IBD terms—every time we resist telling our care team, loved ones or friends about symptoms and struggles, things will only snowball and get worse.
“In order to advocate for ourselves we must also be chronically curious about ourselves. Being chronically curious about yourself starts with a clear understanding of what makes you feel good and whole.”
The overarching theme in this remarkable and must-read book are to keep showing up for yourself every day. Stop running away from the discomfort. Acknowledge it, explore it, and feel it—all of it—the good, the bad, the embarrassing. Christine Rich started out as a stranger on the phone with a dream of becoming an IBD patient advocate and published author. Not only did she accomplish all the above, but she did so in a way that even her personal experiences will feel like something you can relate to and grow from. As a fellow woman with IBD I stand up and give her a round of applause and a big hug for so bravely and candidly speaking the words so many before her felt too silenced and worried to share. Bravo, bravo, bravo.
Six years ago, I was shaking like a leaf getting rolled into the operating room for bowel resection surgery. Six years ago, I felt overwhelmed by the thought of my body getting cut into, by the realization of my body having scars, by the fear of the unknown, and feeling as though I had failed myself and those close to me. The first decade I had Crohn’s disease, I always thought of surgery as the last resort. With each flare up and hospitalization, my biggest worry was needing a surgery of some sort. I constantly wondered about becoming one of the 50% of people with Crohn’s who ultimately end up with surgery. August 1, 2015, I became part of that statistic, when I had 18 inches of my small intestine, appendix, ileocecal valve, and Meckel’s Diverticulum removed. Surgery went from being an option to a necessity.
Looking back now—I want you to know if you need surgery, it’s not a reflection of failure on your part as a patient. While it may feel like the world is crashing down around you, you’ll see the pain, the fear, the recovery—it’s all fleeting. Time waits for no one. Before you know it, you’ll be like me. I blinked and it’s been six years. The scars and memories remain, but as more and more time passes, they become less of a big deal.
I’ve had several fellow IBD’ers reach out with questions recently about bowel resection surgery—everything from bleeding to bloating, asking me about my experience, and surprisingly it’s hard for me to remember those details!
I credit bowel resection surgery for removing a decade of disease from my body (not curing me) but giving me a fresh start and ultimately putting me into surgical remission. Remission that has been maintained for six years now. Prior to surgery, the first ten years I had Crohn’s, I was never in remission. Since surgery I was able to get to a place in my disease journey where family planning and pregnancy were possible without any complications or waiting. I’ve been able to bring three babies into the world and haven’t needed to be hospitalized for my Crohn’s since becoming a mom. I went for a walk with my husband and three kids yesterday (August 1, 2021) and found myself reflecting and feeling a great deal of gratitude as I thought about the stark contrast of where I was six years ago in comparison to now.
August 1, 2021. 6 years post-surgery.
Tips for Surgery: Before and After
Take a before photo. The day before my surgery, I took a photo of myself standing in front of the bathroom mirror in my bra and underwear so that I could remember what my body looked like before it had scars. I took the picture for myself and have never shared it. When I look at the picture now, I see a girl with sadness in her eyes and a longing for days without pain. I see a girl who is petrified of what could be and praying for relief. I see a thin, untarnished body on the outside, but one that is very sick on the inside. I highly recommend you take a photo of yourself prior to surgery so you can capture that moment. One day you’ll look back on that time and be able to see how far you’ve come. You won’t think of your scars in a negative way, but rather a reminder of all you’ve overcome. I don’t even notice my scars when I look in the mirror now.
Communicate with your surgeon. If your surgery isn’t an emergency and you have some time to talk with your surgeon, make sure you do. Talk with your care team about what the surgery will entail—how many inches of intestine will be removed, if an ostomy is a possibility, where they will do incisions, etc. This will help you mentally prepare for what’s to come. My surgeon came into my hospital room prior to my bowel resection and asked me where I would want the incisions. We knew I would have the laparoscopic incisions, but we discussed a horizontal vs. vertical incision as well. I said I wanted the incision to be as low as possible—he told me he would do a “c-section incision” …which worked out wonderfully for me. I know of many people who have had a couple inches of intestine removed and have a large vertical scar (I had 18 inches taken) and that type of incision was not necessary.
Once you’ve had surgery push yourself to get up and get moving. Don’t overdo it, but every step, every movement will help you heal. Before you know it, you’ll be able to bend down and tie your shoes, walk a little further, and stand a little taller. After my surgery it was a struggle to walk around my family room, then before I knew it, I was walking outside…each day making it to one house further around the block. Before I knew it, I was able to take long walks. When you’re laughing, coughing, sneezing, or driving, have a small pillow nearby to hold against your incision, this will alleviate a lot of the pain. The first two weeks is the hardest. Once you hit the 2-week mark, you’ll feel a ton better. You’ll be able to drive and get around with minimal pain. Just hold on to that thought those initial days when it’s emotionally and physically pretty brutal. I remember crying my first night at home because I was so overwhelmed by the pain and my inability to get out of my own bed. At the time a family member was battling ALS. Her fight and knowing that her health was deteriorating daily, while mine was improving with each hour that passed, gave me perspective and brought me back to earth.
Trust in your care team. Once you have surgery, then the priority is to determine how managing your IBD will look moving forward. I, like many, had this false sense of security after surgery that I felt so great, I wouldn’t need to go back on my biologic…or any medicine for that matter. After a lot of tears and discussion, I followed my GI’s recommendation to re-start Humira and add a bunch of vitamins and supplements to the mix (Vitamin D, Calcium, Folic Acid, and a prescription prenatal). I give my GI a lot of credit for being proactive and having a “come to Jesus” talk with me, if you will. She warned me my Crohn’s disease is aggressive and by going med-free, my risk of being back on the operating table 3-5 years down the road would go up exponentially. Six years later, I’m so glad I listened.
Be patient with your healing. I’ve had three C-sections and bowel resection surgery, and the recovery is very different. I try to explain this to women who come to me with questions wondering about the two. With a C-section you have incisional pain/burning, but with an IBD-related surgery you also have to heal from the inside, too. Organs are cut, removed, and reattached. Your digestion needs to recalibrate. It’s a lot more intense of a recovery than a C-section (which I’m going through right now). Be patient with your body. Ease back into normal activities. After my bowel resection surgery, it took me nearly 8 weeks to return to work full-time at my desk job. Prior to returning to the office, I worked half days for two weeks from home because it took time to heal enough to sit upright in a chair. As your digestion re-works itself, it’s not unusual to have an accident or not be able to ‘hold it’ the same as you could prior. For me, this was temporary. But in those initial weeks and months, it’s a good idea to have a change of clothes in your car or packed with you and to be mindful of where the nearest bathroom is. I had one accident during my recovery—luckily, I was home alone (working a half day), it was mortifying, and I was by myself. Don’t try and rush back to normalcy, give yourself time to heal mentally, physically, and emotionally.
3 weeks post-op, laughing through the pain during engagement photos.
If you find out you need surgery—it’s understandable to be upset. But also give yourself a chance to think of all that could be possible. Try and focus on the promise of how surgery could help you get into remission or at least help you in having more “feel good” days. It’s normal to grieve and to be tearful and fearful, but I hope you find comfort in knowing once you wake up from surgery, you will be on the road to a recovery that paves the way for feeling empowered against your illness. And from that point forward you won’t be as scared of future surgeries because you’ll have a better idea of what to expect and a better understanding of how it feels to be well after being in pain for so long.
You did nothing to cause your diagnosis or your disease. Read that again. It’s not your fault. No matter what you may see on social media or hear from friends or family, those of us with Inflammatory Bowel Disease did not live “incorrectly” or do anything damaging that “sparked” our chronic, autoimmune issues to come to life.
I was incredibly disheartened recently by a post on Instagram that in so many words claimed that bad habits in life led to a man’s Crohn’s disease. He made blanket statements about how medication and surgery are not necessary and that it just takes a long time and reflection to reverse the damage he caused on himself after years of smoking, binge drinking, etc. The post was not only on his own feed, but also shared by a community IBD page with more than 8,000 followers. After days of endless comments from those angered by his assertions and claims, the post was taken down and the patient “advocate” made his Instagram private, but the damage was already done.
Hold up—what’s with the blame game?!
You may wonder why patient advocates like me get their feathers ruffled by claims like this. I can tell you why. I, along with so many of my counterparts in the IBD community, work tirelessly to educate and inform not only those with Crohn’s and ulcerative colitis about the patient journey, but also caregivers and friends. When misinformation is disseminated it sets the clock back, bigtime. It further stigmatizes our illness, especially when the false statements are said by someone who lives with IBD. Not only does it hurt those grieving and trying to come to terms with their lifelong diagnosis, but it’s a direct attack on those diagnosed as pediatrics and those who did everything by the book (ate well, exercised, got lots of sleep, managed stress, etc.) and STILL got IBD.
If there was a magic bullet or diet that helped “cure” or manage all of us, we would do it. If there was a way to prevent IBD, people would do it. Crohn’s and ulcerative colitis aren’t like lung cancer, which is sometimes caused by smoking or diabetes which is sometimes caused by being overweight or liver disease which can be caused by excessive drinking. IBD is complicated and mysterious. There is not a behavior or habit that is associated with possibly “getting it” one day. The two known factors—hereditary and environmental—leave much to the imagination. I personally have no family history. I was a picture of health until the two months leading up to my Crohn’s diagnosis in July 2005. It felt as though a light switch went off and my world went from being healthy and able-bodied to being chronically ill.
You did nothing wrong
If you’re reading this and wondering what you did to cause your disease, the answer is nothing. If you’re reading this as a parent and feel as though you could have fed your child less processed food or breastfed them instead of giving formula or shouldn’t have had your child vaccinated, please stop believing that. I know we all want a reason. We all want answers and some clarity as to the why—but, at the end of the day, does it really matter? Focusing on the why doesn’t help us focus on the how. HOW are we going to get through this? HOW are we going to manage our disease and live a full life? HOW are we going to cope during flares and periods of remission? HOW are we going to navigate the unknown and thrive? HOW are we going to find the right treatment plan? HOW are we going to target our triggers and learn what to avoid? Focus on what you can tangibly do to improve your patient journey and less on the coulda, shoulda, woulda’s, because just like each case of IBD is unique, so is each back story.
Here I am as a little girl. Long before being diagnosed at age 21. This little girl did nothing to deserve or cause Crohn’s disease.
Stop the finger pointing and the blame game. Stop making the medical community out to be the bad guys and the adversary. Stop acting as though those who depend on medication and need surgery failed in any way.
Start collaborating with your care team and finding physicians who listen and genuinely care about the approach you wish to take to manage and treat your disease, while also understanding that a holistic and “med-free” approach may not be feasible for your type of disease process. Start getting involved and educating yourself about how IBD manifests and the complicated nature of not only Crohn’s and ulcerative colitis, but also the extraintestinal manifestations and mental health aspect that are often not talked about. Even if you’re on medication or have had surgery you can still take whatever measures make you feel better in a complementary way. It’s not all black and white. There’s so much gray area. You can be on a biologic and still try any “elimination diet” you’d like. It’s just a matter of doing what works best for you, without pointing the finger or demeaning others in our community. Start connecting with those who live your reality and lift you up, rather than make you feel like you’re taking the easy way out.
This is 21-year-old me. There were moments where I felt very sick while on this Spring Break trip my senior year of college in March 2005. I attributed the abdominal pain to traveling and eating different food in the Bahamas. Little did I know four short months later I’d receive my Crohn’s diagnosis.
I know that if my 21-year-old self came across posts on social media claiming I caused my Crohn’s and that I could “heal my gut” on my own, I may have believed it. I can tell you nearly 16 years into this, I know without a doubt that is not the case. I am not a failure for taking medication, needing surgery, or trusting my physicians. I credit my 5.5 years of remission to being a compliant, proactive patient who believes in science, educating myself on the facts, and realizing that this disease is bigger than me and a constant learning process. I don’t need to know my why because I’ve done a damn good job of discovering my how’s and you can, too.
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