When I was diagnosed at 21 with Crohn’s disease, I felt like a fish out of water. I had no idea what this meant for my life moving forward, how I would navigate the unpredictability, and what questions I should be asking from my hospital bed about not only managing my chronic illness but how this life-changing event would shape my future. At that age, I was at a crossroads between being a child and an adult. Back then, social media was just getting started. People weren’t turning online for support or guidance. Fast-forward 17 years and I’ve learned a great deal throughout my patient journey that I wish I knew back then.
Being told I had inflammatory bowel disease (IBD) for the first time in the emergency room and being admitted for the next week was a shock to the system to say the least. I have absolutely no recollection of how I responded when the ER doc shared the news with me. I feel as though it was so traumatic, I blocked it out. Since being diagnosed, that is the only moment I know nothing about. I don’t know if I cried, stared forward, asked questions … I know nothing. My memories take me from getting a rectal exam and getting my first CT scan to being up in a hospital room with Crohn’s disease, prepping for a colonoscopy.
Receiving an IBD diagnosis in 2022, while still shocking and upsetting, looks a lot different. There are thousands of people online, right at your fingertips, talking about their personal experiences with Crohn’s and ulcerative colitis. There are countless blogs, podcasts, and resources at your disposal to help guide you and make you feel less alone. While IBD will always be an isolating illness in many ways, the support that’s readily available and the sense of community is truly incredible. All you need to do is go on Instagram and look up #Crohns, #IBD, or #ulcerativecolitis and you’ll see endless posts of people who are going through your same reality in real time.
What I’ve Learned as a Veteran Patient
An educated patient is an empowered patient. While Google may be the last place you want to take a deep dive when it comes to your health, it can help to look up IBD patient leaders and see the advocacy work and research studies that are available. Looking back, there are many questions I would have asked about life with Crohn’s had I been better informed. In 2005, rather than putting a patient right on biologics, step therapy (an approach of starting with milder medication first, often dictated by insurance) was the rule of thumb. It took three years before I was put on my self-injection. It was a daunting and scary experience to know nothing about biologics and be told in my hospital bed that one day I could do either an IV infusion or an injection for the rest of my life.
If someone is diagnosed with Crohn’s disease right now, I would suggest they try to find a gastroenterologist (GI) who specializes in IBD, often referred to as an "IBDologist." Though that’s not always possible, once you have a provider in place, I recommend asking the following questions:
- Where is my disease located? Is the inflammation visible in one spot on my gastrointestinal tract or does it skip around? Crohn’s disease is complicated in that it can arise anywhere along the tract — from the mouth all the way to the anus. If the disease is present in multiple areas, it can be more of a challenge to treat.
- What role does lifestyle (diet and exercise) play in disease management? Can you please connect me with a registered dietitian who specializes in IBD?
- There are several biologics for Crohn’s disease along with biosimilars. What will be our game plan for treatment and why? When I started on a biologic in 2008, I had two options. A lot has changed since then. As of July 2022, the U.S. Food and Drug Administration has approved the following biologics to treat Crohn’s disease:
- Adalimumab (Humira)
- Adalimumab-adbm (Cyltezo), a biosimilar to Humira
- Adalimumab-atto (Amgevita), also a biosimilar to Humira
- Certolizumab (Cimzia)
- Infliximab (Remicade)
- Infliximab-abda (Renflexis), a biosimilar to Remicade
- Infliximab-dyyb (Inflectra), also a biosimilar to Remicade
- Natalizumab (Tysabri)
- Ustekinumab (Stelara)
- Vedolizumab (Entyvio)
- Risankizumab (Skyrizi)
- How often will I need to have a colonoscopy? Do you plan to start utilizing intestinal ultrasound?
- What’s your take on steroids and pain medication?
- Can you explain the types of remission (clinical, endoscopic, and histologic) and what it will take to get me there?
- How likely is it given the current state of my disease that I will one day need surgery?
- Mental health takes a toll when you are given this diagnosis. Do you have the name of a GI psychologist?
- Can you please speak to the importance of what health surveillance needs to happen due to my IBD? For instance, women should get annual pap smears because biologics lower their ability to fight off common sexually transmitted diseases like human papillomavirus. All patients should get an annual skin check at a dermatologist. Even if a person has good vision, they should get their eyes checked annually. Regular dental visits every six months are also important since IBD can impact our teeth.
- Will I need any additional vaccines aside from the flu shot due to my new health status? Many GI providers recommend that patients get the shingles vaccine (which is often not covered by insurance). Prior to starting a biologic and becoming immunocompromised, it’s smart to get an antibody titer blood test (which measures antibody levels) to see if you need any live vaccines prior to onboarding with heavy-duty medications.
- What IBD apps are available for tracking my symptoms and keeping a food diary to help me become better equipped in understanding how my disease is speaking to me?
- What does this mean for my future and if I want a family? How can this impact fertility, pregnancy, breastfeeding, and motherhood? Are there certain forms of birth control I should stay away from because they may exacerbate my IBD?
- As a student, what accommodations can be made with the school district and at the college level to help me thrive while trying to juggle academics and an invisible chronic illness?
- When it comes to working, how should I articulate this with my boss? Will I be able to hold a full-time job, or should I plan to utilize some type of disability in the future?
- What vitamins or supplements should I be taking? Some people with IBD are malnourished since we don’t absorb nutrients the same way as people without IBD. It’s not unusual for those with IBD to be anemic, have vitamin D deficiency, or need a boost in calcium due to steroids. Throughout your patient journey, it’s helpful to get bone scans to see if osteopenia or osteoporosis is present.
- Is there a local Crohn’s and Colitis Foundation chapter? How can I get connected to those who live near me and have IBD?
Each time you have a clinic appointment with your GI, it’s helpful to write down your questions ahead of time in order of importance. If your doctor's office uses one, make use of the patient portal, and when an issue or concern arises, do not hesitate to write your GI and their team with questions or to keep them in the loop if you notice an uptick in symptoms. A Crohn’s disease diagnosis can strike at any moment. Being in tune with your body and how you are feeling, and articulating any noticeable changes, can help you and your care provider be proactive and stay a step ahead.
