It’s not surprising there’s stigma that surrounds gut health. Even though “everybody poops” it’s still a bit of a taboo topic, and don’t even get the general population to think about getting the dreaded colonoscopy. This is where the GH Foundation comes into play. Co-Founders, Dacia Heck and Kristin Lynn Grubehave both been personally impacted by gastro health in unique ways and their journeys inspired them to create a non-profit to help break down barriers and start critical, life-saving conversations.
According to the Crohn’s and Colitis Foundation, “patients with IBD appear to be at notably increased risk of colorectal cancer compared to the general population, with one recent study demonstrating a 7% colorectal cancer risk after 30 years of the disease. I had my first colonoscopy at age 21, which confirmed my Crohn’s disease diagnosis. Since 2005, I’ve had more scopes than I can count. I typically get a colonoscopy every year. While it’s not an enjoyable experience, it gives me peace of mind that I’m being proactive about my health. I’ll be getting my next scope in the coming months.
This week on Lights, Camera, Crohn’s we hear from Dacia and Kristin to learn more about their mission, the difference they hope to make, and how you can get involved and feel supported.
The personal connection
Until your gut starts causing health problems, chances are you don’t often think about it. Kristin was diagnosed at age 27 with Serrated Polyposis Syndrome (SPS), which is characterized by the occurrence of multiple polyps throughout the colon and/or rectum that can develop into colorectal cancer (CRC). She discovered this through a colonoscopy.
Kristin Lynn Grube, co-Founder of the GH Foundation
“My diagnosis has taught me to be my own relentless health advocate and speak up for myself. I continue to learn how to cope with SPS’s ongoing effects – emotionally, physically, and spiritually. Some days are easier than other days.”
Dacia lost her healthy, active sister from Stage IV colon cancer. Her sister was diagnosed at age 43 and passed away less than 4 months later.
Dacia Heck, co-founder of the GH Foundation.
“My sister’s diagnosis was a complete shock, as we didn’t have a family history of colorectal cancer and she was well below the screening age of 50 at the time of her diagnosis.”
The inspiration behind the GH Foundation
While Dacia and Kristin have different stories and experiences, they are both passionate about bringing important resources to the general public and are adamant about making gastrointestinal (GI) conversations not only more accessible, but also more mainstream, in order make the path to GI wellness and cancer prevention easier for others.
“We truly believe we can make a difference – one conversation at a time. As Kristin and I discussed where we wanted to focus our time and energy, we kept circling back to the “stigma” associated with GI diseases. That stigma often delays people talking to their family or medical provider about GI-related conditions. We decided the way we could make the biggest impact was to create GH Foundation and focus our mission on breaking that stigma,” said Dacia.
The GH Foundation’s main mission is to destigmatize conversations around GI, or gastro, health issues. 1 in 16 people in America will get CRC and 0 in 16 like talking about it. The GH Foundation encourages everyone to start the conversation. True prevention starts with educating the public on what is normal GI health and when to speak with a medical provider.
Discovering the loopholes in gastro health
As Dacia and Kristin did their research and spoke with different folks from all walks of life, they kept noticing that the conversations around gastro health have to start with a younger audience. Young adults in their late twenties to early forties are not discussing the importance of gastro health with their medical providers.
“We believe this is mostly due to the deeply rooted societal stigma surrounding gastro health. Given the uptick in early age onset (EAO) CRC, it may be too late to prevent a late-stage diagnosis once they qualify for screening. We want to focus on the very beginning and origin of it all – the conversation, whether it is with your family, friends, or network. Take that first step and reach out to someone, ask questions, make that list of symptoms you are experiencing, find out if you have a family history of GI diseases,” said Kristin.
While it’s intimidating, Dacia and Kristin guarantee that the first step will go a long way and may improve your quality of life, or even save your or someone else’s life.
“Our goal is to bridge the gap between the medical terminology and the general public’s knowledge about GI health. We are finding ways to make medical terminology and information accessible to the public. We encourage everyone to listen to their body, and to get the tools to empower them to speak up if they have issues,” said Dacia.
Taking their mission into action
The GH Foundation works to meet people where they are and find different ways to overcome the stigma. For some people, it’s learning about the basics of gastro health through an educational webinar, for others, it is hearing a survivor’s story and becoming inspired to take that first step.
“It’s connecting at a social gathering and finding a space where you can share your day-to-day challenges that you thought you were experiencing alone. Other times, we just want to have fun – we play GI trivia games and entertain each other with the Poo Squad mascots (more on that later in this interview). With all our events, we create an environment where it is safe to ask any questions. There is never TMI; we can talk about poop all day if you like,” said Kristin.
The Three Main Pillars of the GH Foundation’s Advocacy
Gastro Health
Inform and educate the public about the importance of GI health. So far, the GH Foundation has focused on the human GI anatomy, common myths and facts about GI health, ostomy facts, and CRC-related information. You can find out more about resources and past events on the GH Foundation website.
Proactive Advocacy
Proactively provide information and strategies to create positive shifts in how we communicate and influence others. Using what they’ve learn from other organizations, medical providers, patients, and cancer survivors, the GH Foundation has created educational content to then share with the public. Be on the lookout, you may just see their Mascots or Bristol Stool Charts popping up more and more near you!
Impact/Prevention
Educate and inspire people to take action to live a healthier life by fostering an open environment where no topic or question is off limits. Kristin and Dacia lead by example by first sharing something about themselves or asking someone at an event if they would like to share their experiences. They want to help people become as comfortable as possible about talking with their medical providers so they can get the most accurate information about their symptoms and find the best treatment for them.
Making a Difference
Since launching the GH Foundation, Kristin and Dacia have heard from many people that they scheduled their colonoscopy after attending one of their events or receiving one of their resources.
“People have also spoken with family members about their family history to get genetic testing and have said they felt more prepared about what to ask their medical provider at their next visit. People have approached us and expressed a sense of relief that we are creating an environment where they can ask any question, as uncomfortable or personal as it may be. Our mascots have received positive feedback as well. Seeing Sir Colon has taught them what the “colon” looks like,” said Dacia.
Through their initiative “GHF on Campus” they bring gastro health conversations to the forefront of young adult minds through a series of captivating events exclusively tailored to undergraduate students.
“One of our main approaches at the GH Foundation is targeting who we call the “pre-screening community”. Young adults under the age of 45 need to be made aware of common myths and facts on GI health, CRC signs and symptoms to keep watch, and what to ask if CRC symptoms emerge. GHF on Campus has a dual impact: Not only are they learning for themselves, but they can go back home and share what they have learned with family and friends. They can ask about their family history and encourage their family members to act, like scheduling a colonoscopy,” said Kristin.
So far, the GH Foundation has collaborated with the vibrant student communities at the University of Iowa and Northwestern University. Kristin and Dacia are looking to expand campus programming—if you’re reading this and would like to learn more, click here.
Finding humor through the message
You must meet people where they are. One of the ways they are doing that is with a sense of humor.
“We have designed our GHF mascots that bring some fun and lightness to topics that can be very overwhelming and serious,” said Kristin.
The GH Foundation’s mascot crew features: The Poo Squad (from left to right)—Ms. TP, Plungy, Mr. Poo and Sir Colon.
They will show up in different ways. One of the ways is our “Check your Colon” t-shirt with our very own Sir Colon. You can purchase a shirt here.
You can register now for a virtual webinar panel discussion entitled, “Destigmatizing Ostomy 101” taking place Tuesday, February 20th, 2023 at 6:30 pm CT. The discussion will feature Wound Ostomy RNs Jennifer Bart, MSN, RN, CWOCN, and Aimee Sheddan, BSN, RN, CWOCN.
Getting Involved with the GH Foundation
Talk – Initiate the conversation with your family, friends, and colleagues. Educate your loved ones about the risk of neglecting their gastro health. It may seem like a small step but can change the trajectory of life.
Volunteer – Help connect your community to life-saving resources about GI health.
Donate – Your donation directly funds our efforts to distribute educational materials and health guidance to the public.
Engage – Reach out to us! We welcome new ideas on how we can break the stigma.
Follow us on our socials so we continue to reach more and more people.
Connect with the GH Foundation on social media and follow the amazing work they’re doing:
It’s that time of year when sickness lurks around every corner. For those of us who are immunocompromised, run of the mill “regular people” sickness can hit us extra hard. Since the end of September, I’ve dealt with bronchitis for 5 weeks, followed by pink eye in both eyes, and I currently am dealing with a bacterial infection in my right eye. Being an IBD mom with young kids in preschool and elementary school brings extra germs into our house. While I’ve been under the weather, I keep second guessing what supplements are deemed “safe” and beneficial for me to take since I’m on a biologic. Even 18-plus years into the game, I still get confused about the gray area around supplements to help us improve or boost our immune systems and which we need to be careful of.
This week on Lights, Camera, Crohn’s we hear from three gastroenterologists who take a deep dive into this topic, along with a registered pediatric GI dietitian, and several people from the patient community. Before we get started, I want to preface this by saying this is a complex issue that is not black and white. Even after digging deep researching this topic—I’m still not completely clear on what’s best for myself.
There’s been conflicting beliefs on whether Elderberry is “smart” to take when you’re immunocompromised. I ran a poll on Instagram asking our community what they’ve been told. Of the 260 people who responded 72% said “This is a thing?!”, 21% of those polled said they were told to “Steer clear when on immunosuppressants”, and 7% of people were told by their provider that it’s “Safe and advised” to take Elderberry.
Let’s hear what patients have to say
Samantha: “I was advised not to boost my immune system. So, I focus on nourishing my body well when sick. I drink a lot of smoothies and fresh juice. I’d avoid Elderberry for sure. I take daily vitamins and get my levels checked regularly to make sure I’m getting enough of what I need. However, I have a kid in school who brings all those lovely germs home. I had a GI once explain it to me like this…my immune system is overactive; I have to take medication to weaken it, which brings it down to a “normal” range. If I try to “boost” it, I’m working against my medication.”
Cindy: “My mother-in-law purchased some Elderberry for my daughter with Crohn’s shortly after her diagnosis. “A woman at Whole Foods told me this could be good for her.” She meant well. Anyway, I understood that my daughter shouldn’t take Elderberry, after consulting with Dr. Google. I believe it was a reputable website that contraindicated Elderberry for patients on immune suppressing medications.”
Emily: “I have been told both—that Elderberry is safe and that it is not. My family doctor told me to avoid it and my GI nurse says that it’s ok sometimes when sick?! So confusing!”
Alyssa: “My husband has Crohn’s and is on Entyvio. He takes Elderberry if he has flu or cold symptoms, whereas I take it daily during the winter. Funny enough, I’m sick A LOT more than him!”
Jessie: “I’ve been told by some doctors not to take immune boosting supplements with biologics and others that it doesn’t matter, but I can’t find the concrete research/facts I need to be sure.”
Lindsey: “I find my symptoms flare when I have Elderberry!”
Rachel: “I’m always confused if I should be taking anything to “boost” my immune system when I’m on suppressive meds. I asked my provider years ago, but I didn’t really get a real answer. I’ve always thought it was good to take supplements to help my immune system, but then I get concerned about them counteracting my medication.”
Hermione: “I have been told it is a placebo effect by my immunologist.”
Kristen: “I read that you don’t want to boost your immune system since that’s the system you want suppressed and caused your disease in the first place.”
Bee: “I was told not to take things that will “boost” the immune system. In South Africa, it’s Echinacea. I was told not to take it. So, my approach has been to “indirectly boost” my immune system by taking vitamins and fresh fruit and vegetables as much as I can tolerate.”
Rocio: “I’ve had this conversation with providers, particularly when I had COVID. I was told NOT to take Elderberry because it has been shown to increase cytokine storm which is present in both COVID and IBD. From an IBD specific point of view, the anti-TNFs seem to calm that storm which is why some were used as COVID therapeutics. So, I wouldn’t say it’s because of being on immunosuppressants, but rather the disease itself.”
Julie: “I live on Elderberry but never asked my doctor, so I’m hoping it’s ok!”
Laura: “I’ve taken Elderberry for years on Remicade (also working as a nurse practitioner in pediatric primary care) and it has helped keep me well and my GI docs have never been opposed to me taking it. I do usually skip it the night before and after an infusion though.”
Jana: “I was told it could cause increased risk of cytokine storm for those with IBD in general, whether on immunosuppression or not.”
Heather: “My son’s GI said NO to Elderberry. We used to take it every winter, but once he was diagnosed with Crohn’s they said to stop using it. I always worry about this time of year and all the yucky stuff going around. My son takes the Liquid IV Vitamin C packets and puts those in his water. I don’t know if they help, but I feel better knowing he is taking something to maybe help give him a boost!”
Beth: “I’m so glad you’re covering this because there is so much confusion—should we try to boost our immunity or not? My personal experience is that I was taking it trying to boost my immunity before a busy event season when I needed to stay healthy. About three weeks later, I was wracking my brain trying to figure out what was flaring my Crohn’s because I’d been eating right, sleeping more, hydrating…and I think it was the Elderberry. In general, I have tried to shift my logic to “these are things that help keep me healthy” versus “how do I boost my immunity?”
Madison: “My first GI told me “No” if you’re on biologics. Not sure if that’s true, but I just trusted that guidance and still avoid it!”
Jess: “I was told to steer clear of Elderberry because of having IBD.”
Jaclyn: “I have asked so many times what I can take, and I’m always told there is basically nothing extra I can do. I have a 4-year-old and 5-month-old in daycare, so they are always bringing home sicknesses.”
Elderberry: To take or not to take?
After reading those firsthand experiences it’s clear—the patient population is unclear and hesitant about what is best when it comes to boosting immunity. While Elderberry has gained popularity for its potential immune-boosting properties, its safety for those of us with IBD is not well-established. Elderberry supplements are often promoted for their antiviral and immune-enhancing effects, primarily attributed to compounds like flavonoids and anthocyanins.
Before I became a patient advocate, I would take elderberry anytime I felt a sniffle or had a sore throat. I really felt like it made a positive difference. Fast forward a few years and I started hearing that Elderberry could interact with Humira and cause my immune system to become over-active, so I stopped taking it all together. To this day, I wonder about taking it—and I know many of you do, too!
There are a few considerations for those with IBD when it comes to Elderberry:
Sorbitol Content: Elderberry products, particularly some syrups and extracts, may contain sorbitol, a sugar alcohol. Sorbitol can have a laxative effect and may exacerbate symptoms for those with IBD, especially if you are sensitive to sugar alcohols.
Potential Interaction with Medications: Elderberry may interact with certain medications or treatments for IBD. Elderberry is believed to have immune-modulating properties. When taken with immunosuppressive medications like Humira or Remicade, there is a potential risk of enhancing the immunosuppressive effects, which might increase the susceptibility to infections. It’s important to discuss this with your healthcare provider to understand the potential implications.
Limited Research: There is limited research specifically addressing the safety and efficacy of Elderberry in individuals with IBD. The specific interactions can vary, and it’s essential you ensure there are no adverse effects or diminished efficacy of your prescribed medications.
The GI’s weigh in on the debate
Dr. Miguel Regueiro, M.D., Chief, Digestive Disease Institute, Cleveland Clinic, says that while he does not want to sound dismissive of supplements, that we lack good data to make claims for or against. Personally, he does not feel Elderberry is harmful, and does not have a problem with his patients taking it.
“I am not aware of good, randomized data to indicate true harm from Elderberry in immunosuppressive or immunomodulatory medications, even though there are warnings listed,” he said. “Theoretically, Elderberry will “stimulate” or “activate” the immune system and has been a popular supplement that some recommend for “cold/flu” or to prevent cold and flu. If that theory is true, then potentially elderberry as an immune stimulant would offset or counteract an immunosuppressive.”
Without good, randomized safety data, it is difficult to make this strong claim one way or another. Given that Elderberry may or may not help with cold/flu, in an abundance of caution it would be reasonable to avoid in patients on immunosuppression.
“My sense is that the dose of Elderberry is low enough that even with immunosuppression, there should not be a problem, but, again, without confirmatory evidence to say that Elderberry effectively “fights off” or “prevents” cold/flu, one could simply avoid it in patients who are immunosuppressed.”
Dr. Regueiro says the ideal health-related approach is to ensure that IBD patients are eating a whole food diet, avoiding processed/ultra processed foods, drinking plenty of water each day (1-2 liters), exercising regularly, and having good sleep hygiene.
“Regarding additional supplements, based on a patient’s history and certain IBD meds, we recommend different supplements. For example, for patients who have been on steroids in the past, we recommend a bone densitometer for osteopenia (and osteoporosis). If bone mineralization is low, we recommend supplemental calcium and Vitamin D. If a patient has had ileal (small bowel) surgery, we will check a vitamin B12 level and if it’s low, we recommend parenteral (subcutaneous) shots, as they will not be able to absorb oral B12.”
He went on to say that iron levels should be checked, as iron deficiency is common. If iron levels are low and a patient is anemic, parenteral (IV) form of iron is recommended, as oral iron can upset the stomach and even lead to more IBD symptoms.
“For patients with short bowel syndrome from extensive bowel surgery, they should be managed by a nutrition team who specializes in short gut as the evaluation of nutrients and vitamins is more comprehensive and detailed. Finally, for most of our IBD pts who do not have any of the above vitamin deficiencies, as long as they’re eating a well-rounded, healthy diet, they need no other vitamins. However, I tell my patients that taking a once per day over the counter vitamin is generally safe and ensures all nutrients are covered.”
Dr. Yezaz Ghouri, M.D., Director of Inflammatory Bowel Disease Services, University of Missouri School of Medicine at Columbia, says elderberries seem to have high amounts of antioxidants.
“The main antioxidant seems to be a bioflavonoid called Anthocyanin. These give purple pigment in the berries and have powerful antioxidant properties. Antioxidants have an anti-inflammatory and anti-carcinogenic effect in the body. Patients with IBD have chronic ongoing inflammation and are at increased risk of developing colon cancer. Carcinogenesis refers to the conversion of normal tissues to cancer. In general, we recommend the use of berries in IBD patients, and these are a good source of minerals, vitamins, and healthy carbs. The Crohn’s and Colitis Foundation cautions the use of Elderberry in IBD patients due to concerns that this fruit increases production of certain types of chemicals in the body that can cause IBD type inflammation. One of these chemicals is called tumor necrosis factor (TNF), the same which is blocked by medications used to treat IBD.”
Immunosuppressive medications and antioxidants work hand in hand in preventing inflammation.
“But there have been some studies that showed the effect of Anthocyanins on a group of immunosuppressive medications used in IBD called anti-TNF alpha inhibitors (examples: infliximab, adalimumab, certolizumab, golimumab). There is inconclusive evidence in this matter and there are no large clinical human studies showing that use of Elderberry is linked with an effect on TNF alpha inhibitors ,” explained Dr. Ghouri. “Please consult with your GI specialist prior to their use. Taking Elderberry in moderation should be ok, but if one develops any signs of disease flare, then stop the use,” he said.
Dr. Ghouri agrees that it is “ok” for IBD patients to take Elderberry.
“Elderberry has very strong anti-inflammatory properties that may contribute towards preventing damage from chronic ongoing inflammation and free radical based tissue injury.”
Dr. Ghouri recommends the following protocol for labs to indicate whether you need specific supplements/vitamins added to your regiment:
Checking Vitamin D levels at least once a year
Checking Vitamin B12, Folic acid and Iron (Ferritin) levels, if anemic
Specifically checking Vitamin B12 level once every 6 to 12 months in patients with Crohn’s disease involving the small bowel
Checking other mineral or vitamin levels may be patient dependent, please check with your GI specialist or PCP. There is a need for checking vitamin and mineral levels more frequently in patients who have lost most of their small bowel, due to Crohn’s disease. These individuals have a diagnosis of short-gut syndrome and sometimes require IV nutrition. These patients are at higher risk for developing all sorts of vitamin and rare mineral deficiencies. They need to be seen by a specialist with a background in managing such patients and require frequent blood testing for several minerals and vitamins.
The Pediatric Perspective
With young people often being the carriers of so many germs and being susceptible as school age kids—I wanted to hear from Dr. Michael Dolinger, M.D., MBA, Assistant Professor of Pediatrics, Associate Pediatric Gastroenterology Fellowship Program Director, Icahn School of Medicine at Mount Sinai.
“For any patient on immunosuppressive medications, it is important to have an open discussion with your treating gastroenterologist about Elderberry, specifically Sambucus nigra, which is used in most herbal supplements. This could stimulate the production of components of the immune system that cause inflammation, mainly cytokines and tumor necrosis factor,” explained Dr. Dolinger. “Many effective therapies target these cytokines or tumor necrosis factor to treat inflammatory bowel disease, as they are often elevated. There is no clear evidence to support this either way, but if you are on a therapy that targets tumor necrosis factor or cytokines for your inflammatory bowel disease, I would certainly have a discussion with your gastroenterologists to review the potential risks and benefits first.”
He went on to say that one of the largest issues with using supplements, particularly in children, is that they are not regulated by the Federal Drug Administration, and you have no way of knowing if what is on the label is in the supplement you would be giving your child.
“I always encourage parents who are thinking about giving supplements to children to assess if there have been any studies of this particular supplement in children or ongoing studies and if not, I urge them to use the same caution they have surrounding any therapy and that is to place safety at the forefront and not give unregulated supplements to children,” said Dr. Dolinger.
For children with IBD, a well-balanced diet with adequate calories for growth and development is the most important recommendation. Supporting supplementation with iron, vitamin D, vitamin B12, and calcium is needed when these levels are low.
“Routine monitoring of vitamins and micronutrients is essential in the care of inflammatory bowel disease patients. For example, vitamin C deficiency often goes unrecognized. We see zinc or selenium deficiencies not uncommonly too. It is most important to have routine monitoring for vitamins and micronutrients at diagnosis and when doing well, at least yearly,” he said.
Erin Feldman, R.D., CSP is a pediatric dietitian. She looked up Elderberry on a database called NatMed. Here’s what she found:
“On the natural medicine database, under “interactions with drugs” immunosuppressants are listed and it states—theoretically, Elderberry might interfere with immunosuppressant therapy, due to its immunostimulant activity. Elderberry has immunostimulant activity, increasing the production of cytokines, including interleukin and tumor necrosis factor. On the patient handout it states that Elderberry might cause the immune system to become more active. This could increase symptoms of autoimmune diseases. If you have one of these conditions, it is best to avoid Elderberry.”
Supplements and Lifestyle Choices that may offer general immune support
If you plan to incorporate any supplements into your routine, please consult with your care team, preferably a gastroenterologist or a registered dietitian, who is familiar with IBD and how it manifests in our bodies. Here are some different supplements you may want to check out:
Probiotics: Probiotics are beneficial bacteria that can help maintain a healthy balance in the gut microbiome. Some studies suggest that certain probiotics may be helpful for individuals with IBD, but their effectiveness can vary. Different strains may have different effects, so it’s crucial to consult with a healthcare professional before using probiotics.
Vitamin D: Adequate levels of vitamin D are important for overall health and immune function. Many people with IBD may have lower levels of vitamin D. This can be determined by a simple blood test. I personally have been vitamin D deficient for years, so I’m prescribed 50,000 IU a week right now.
Omega-3 Fatty Acids: Omega-3 fatty acids, found in fish oil, flaxseed oil, and certain nuts and seeds, have anti-inflammatory properties. They may help support the immune system and reduce inflammation. Again, consult with your healthcare provider for appropriate dosages.
Zinc: Zinc is essential for immune function. Some people with IBD may have lower levels of zinc, so supplementation may be considered under the guidance of a healthcare professional.
Turmeric/Curcumin: Turmeric, and its active compound curcumin, have anti-inflammatory properties. Some studies suggest that curcumin may have potential benefits for those with IBD, but more research is needed. It’s essential to consult with a healthcare provider before using curcumin supplements.
Quercetin: Quercetin is a flavonoid with antioxidant and anti-inflammatory properties. It is found in various fruits and vegetables. Some studies suggest it may have potential benefits for individuals with IBD, but more research is needed.
Lifestyle Factors: Adequate sleep, stress management, and regular exercise are crucial for overall health and immune function. Ensure you are getting enough rest and engaging in stress-reducing activities.
Final Thoughts
Given the potential for interactions and the need to manage the delicate balance of the immune system in individuals with IBD, it is highly advisable to consult with your healthcare provider before adding Elderberry or any new supplement to your routine. A lot more research is needed in this field to better understand supplements and their effects on medications.
There is no clear evidence that immune boosting supplements such as elderberry produce cytokines and tumor necrosis factor to counteract medications, but there is also no strong evidence that they do not either. We don’t know the way in which supplements support or do not support individual immune systems in patients with inflammatory bowel disease on therapies that target the immune system.
Your healthcare provider may guide you on whether elderberry or other immune-supportive supplements are appropriate for you, and if so, what dosage is safe. Always follow their recommendations to ensure the best possible outcomes and to minimize the risk of complications.
Ever look in the toilet and much to your surprise you see a full pill in your stool? I’ve been there—and so many of us in the IBD community can unfortunately relate. Our unique digestive systems put us at much greater risk for malabsorption problems. For those of us with Crohn’s disease or ulcerative colitis, it can be a challenge to retain nutrients in the small intestine—such as proteins, fats, sugars, vitamins, and minerals and this can also pose issues when it comes to receiving the benefits of medications.
This week on Lights, Camera, Crohn’s we explore the various issues those of us in the IBD community may encounter when trying to absorb medications and the strategies employed to overcome these challenges. I ran an Instagram poll and asked our community: “If you have IBD, have you dealt with issues absorbing nutrients and certain medications?” Of the 175 people who responded, 47% said “yes” they have a problem with malabsorption and 50% had “no idea” if they do.
The reason why
You may be wondering why or if you are at risk of having issues absorbing new or current medications. Let’s look at the reasons why many of us deal with this issue:
Altered Gastrointestinal Transit Time: In IBD, chronic inflammation can lead to changes in the motility of the gastrointestinal tract. Fluctuations in transit time through the digestive system can impact the absorption of medications, as they may not spend sufficient time in the intestines for proper uptake.
Intestinal Mucosal Damage: The inflammation associated with IBD often results in damage to the mucosal lining of the intestines. This compromised barrier can affect the absorption of medications, making it difficult for drugs to pass through the intestinal wall and enter the bloodstream effectively.
Drug Formulation and Coating Issues: Some medications are formulated to release their active ingredients at specific points along the digestive tract. In individuals with IBD, variations in pH levels, inflammation, and mucosal damage may interfere with the intended drug release, reducing the medication’s efficacy.
Nutrient Interference: Medications are sometimes absorbed through the same pathways as essential nutrients. Malabsorption issues in IBD can lead to competition between medications and nutrients for absorption sites, potentially reducing the effectiveness of both.
Impact of Surgical Interventions: For those of us who have undergone surgical procedures, such as bowel resection, ostomy, or Jpouch, the anatomy of our digestive tract is altered. Surgical changes can significantly impact the absorption of medications, requiring adjustments in dosage or alternative administration routes. The small bowel, with its large surface area and high blood flow, is the most important site of drug absorption. Personally, I’ve had 18 inches of my small intestine removed along with my terminal ileum and ileocecal valve. The larger amount of small bowel removed, the greater likelihood you will deal with drug absorption issues.
What IBD patients have to say about malabsorption and medications
One of the many struggles patients face is knowing whether the medications they are on for everything from mental health to fertility are being absorbed into their bodies. Here’s what the patient community had to share about their experiences. All quotes are anonymous to protect patient privacy.
“I found that my Wellbutrin was landing in my bag whole, so my doctor broke the dose up into 4 smaller amounts instead of once daily—I’m not seeing the pill in my bag anymore and I am getting the intended benefits. I also was prescribed an opium tincture to take ahead of those pills to help give them their best chance at dissolving.”
“I had to start taking anti-depressants that were dissolvable. Unfortunately, there’s not a ton of options. When I switched to dissolvable from tablet/capsule oral, it made a huge difference.”
“In the past I was on Wellbutrin which came in an Extended-Release pill, and I would often see the pill come out whole. I mentioned this to my doctor, and she was able to get an Immediate Release version prescribed. If someone is on an Extended-Release med this may be an option for easier absorption. A compound pharmacy may be able to make it if it’s not already available in immediate release form.”
“The only difference was I had to take the immediate release version 3x a day vs. once a day for extended release.”
“I’ve really been struggling, and my psychiatrist suggested an absorption problem and recommended a patch, but my insurance denied it.”
“I’m a med student in the UK with Crohn’s. If you look up your selected antidepressant (amitriptyline, sertraline, etc.) on the British National Formulary, there’s usually a bunch of different formulations of the drug, either in pill form, patch, depot injection, liquid suspension, etc. If the desired delivery method is not available for that specific drug (like not for fluoxetine, but you still want an SSRI), you can scroll down to other drugs in class, check for interactions with current meds, guidance also for hepatic or renal impairment, pregnancy, the works. It’s entirely free and very user friendly.”
“I had trouble with absorption this summer when I was waiting to get my hiatal hernia fixed and acid was eroding my esophagus and medication before it could make it into my digestive tract, but I have surgery in July and continue to fail antidepressants and have other health issues that are unexplainable (exhausted and starving all the time for example) so hearing this input is so helpful to me.”
“I switched from Effexor capsules to tablets and I wasn’t digesting them at all. I frequently saw them in the toilet bowl and had to switch back to capsules and just take two.”
“I’m on an antidepressant and it just rips me up. I have absorption issues with everything.”
“I’ve always been on liquid anti-depressants just to make sure I am absorbing all of it with my ostomy.”
“I haven’t had any issues with my Zoloft!”
“I am currently on Celexa and occasional Xanax, no issues.”
“I’ve always had a slight suspicion about whether my Crohn’s is the reason my antidepressants don’t work.”
“I take an antidepressant that is dissolved on the tongue. Lamictal. It’s a mood stabilizer also used to treat anxiety and depression. Just started it, so far so good. Everything else went right through me. It’s been a struggle finding the right fit. SSRIs are awful and with an ostomy (at least in my experience).”
“On occasion during more severe flares I’ve noticed undissolved pills that I’ve mentioned to my GI. The advice was to keep an eye on it and if I continued seeing them, we’d need to reassess but thankfully those episodes were intermittent. I am, however, going to bring this up to my shrink because my response to meds is usually very suboptimal. Don’t think there are other forms available other than pills, but something to keep in mind.”
“Sublinguals are another good option for IBD patients for better absorption. I take a few of my supplements sublingually and my levels have been maintained well!”
“Not sure about anti-depressants. But I take the liquid form of many nutritional supplements for better absorption like Vitamin D and Vit B-12. I find I absorb it better that way. Of course, injecting is even better in terms of absorption, and I have occasionally had B-12 injections.”
“A good time for a reminder to always look at your poo. If you see what you think is a pill, make a note and if you see it more than once, contact your doctor. Some pills I may split for more surface area or open capsule (maracas) into spoon of applesauce, if it doesn’t compromise the med.”
“When I was in the hospital, docs would give everything they could IV because of the concern about absorption. It’s never come up outpatient for me though.”
Added concerns and considerations for Ostomates, JPouches, and Short Gut
According to The Ostomy Files: The Issue of Oral Medication and a Fecal Ostomy, “Because portions of the intestinal tract have been removed or bypassed, people with an ileostomy or colostomy may experience difficulty in absorbing and, therefore, gaining maximum benefit from oral medications. The shorter the length of the remaining bowel, the greater the problem of absorption, particularly in the ileum.”
Generally, people with descending or sigmoid colostomies absorb medications as well as people who do not have an ostomy. However, “enteric-coated tablets, time-release products, or large tablets” are designed for gradual absorption along the entire intestine (the ileum AND the colon).
The article goes on to share a helpful trick to do at home, “Place the tablet in a glass of water and record the amount of time it takes for the tablet to begin to dissolve. If the tablet begins to dissolve in 30 minutes, most likely it can be adequately absorbed in the body. Patients should be instructed not to crush tablets without first checking with the pharmacist because the practice may expose the medication to gastric fluids, which could cause gastric upset or inactivate the drug.”
Amalia Karlin, MS, RDN, Owner of the Ostomy Dietitian, says, “When a portion of the bowel is removed, psychiatric medications have less time in the gastrointestinal tract to be fully absorbed. This may lead to medications coming out in the ostomy bag still intact. Fast transit time amongst the ostomy population in combination with having an ileostomy, specifically, are additional risks for pill remnants ending up in the bag. Troubleshooting this issue may require changing the timing of the medication and the foods with which the medication is taken to slow down and thicken ostomy output and give the medication the best chance of being fully absorbed. Ostomates should share these concerns with the physician managing their psychiatric medication.”
Amalia urges patients to ask the following questions:
What is the release action of the medication?
Is the pill a tablet, capsule, etc.?
Are you seeing pill remnants in your bag?
What foods are you eating them with (we want to slow output when taking these drugs)
Ostomates I spoke with say liquid iron helps them more than capsules for boosting hemoglobin levels.
“I have trouble with absorption due to my ileostomy. My anti-depressants had to be changed because I could not absorb Long Acting or Extended-Release meds. They are too hard and did not break down. I also need to get B12 injections every three weeks because of deficiencies.”
Medications that don’t dissolve quickly may be absorbed inadequately, making some medications ineffective. According to an article entitled, “Medication Considerations for People with an Ostomy,” Medications that may not be absorbed adequately include certain antimicrobial agents, digoxin, mesalamine, levothyroxine, and oral contraceptives.Enteric-coated or extended-release medications should be avoided by those with an ileostomy because the medication is absorbed or partially absorbed in the colon.”
It’s advised that prior to ostomy or extensive bowel resection surgery, patients and caregivers discuss how surgery will impact the way medication is absorbed moving forward. Ostomates and those with short gut syndrome should monitor output and look for undissolved pills or capsules. If you see your medication intact after it’s been ingested, make sure to alert your care team. Having care providers (especially those outside of the GI space), who are knowledgeable and understand how those with IBD often have unique bowel integrity, makes all the difference.
To assure proper absorption medications can be prescribed in the following ways:
Liquid
Soluble tablet
Transdermal patch (an adhesive patch that delivers medication into the blood stream)
Sublingual (under the tongue)
Buccal (placing medication between gum and cheek)
Parenteral (means “beyond the intestine”—an injection)
If you are receiving medications in one of these formats and still not reaching the therapeutic range, it’s not unusual to be prescribed above the recommended dose. It’s important as patients we understand that our prior surgeries can effect not only prescriptions, but over-the-counter medications, too.
According to this study, “the effectiveness of oral contraceptives might potentially be reduced in women with Crohn’s disease who have small-bowel involvement and malabsorption. Due to the nature of how family planning goes with IBD, it’s imperative women with IBD communicate openly with their OB and GI to avoid unintended pregnancy, as timing and trying to get pregnant while in a remission state is optimal for both mom and baby.
Strategies to Overcome Medication Absorption Challenges
Individualized Treatment Plans: Tailoring medication regimens to the specific needs of each patient is crucial. Healthcare providers must consider the severity and location of inflammation, as well as any surgical history, to optimize drug absorption.
Alternative Administration Routes: For individuals with severe absorption challenges, alternative routes of administration, such as intravenous or subcutaneous injections, may be considered. These routes bypass the gastrointestinal tract, ensuring direct delivery of medications into the bloodstream.
Monitoring and Adjusting Dosages: Regular monitoring of medication levels in the blood allows healthcare providers to adjust dosages as needed. This personalized approach ensures that therapeutic levels are maintained despite potential absorption difficulties.
Final Thoughts
Medication absorption issues for those of us with IBD poses a significant hurdle. By recognizing the unique challenges, we face, healthcare providers can develop personalized treatment plans that address absorption issues and optimize therapeutic outcomes. Ongoing research and advancements in drug delivery technology continue to contribute to the development of innovative solutions, offering hope for improved medication management for the IBD community.
When you have IBD and need a biologic, it used to be all infusions or self-injections. But starting in March 2022 (for ulcerative colitis) and May 2023 (for Crohn’s) a daily pill known as Rinvoq (Upadacitinib), entered the game. Rinvoq is the first approved oral product to treat Crohn’s. This once-daily pill is prescribed for those with moderately to severely active IBD who have had a lackluster response or an intolerance to one more TNF blockers (such as Humira and/or Remicade). Rinvoq is also prescribed for rheumatology and dermatology conditions, such as rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, non-radiographic axial spondylarthritis.
Doses range from 15 mg, 30 mg, or 45 mg. According to AbbVie’s website, “Rinvoq is a selective JAK inhibitor based on enzymatic and cellular assays. Rinvoq works with your body to fight the inflammation that can lead to IBD symptoms. Rinvoq stops the activity of some inflammatory proteins known as Janus kinase (JAK) to help reduce inflammation.
This week on Lights, Camera, Crohn’s we talk with 29 IBD patients about their personal experience on Rinvoq, along with Dr. Uma Mahadevan about key information for those in the family planning stages of their lives.
What patients have to say about the induction dose and the quick improvement in symptoms
Rinvoq is the first JAK inhibitor medication that Brooke tried and she didn’t know what to expect. She started Rinvoq in July and says her body has done a complete 180.
“All of my immediate issues have healed, and my long-standing symptoms have begun to fade. In the beginning during the loading dose, I felt a bit more tired. But after two weeks, I had more energy and have experienced less symptoms. Most of my extraintestinal manifestations have cleared up.”
Brooke says she has caught two colds since being on it, so she’s still masking and being diligent around crowded spaces, especially during flu season. She advises fellow patients to talk to their physicians about the dosage they need.
“Because of how much I’ve been flaring, I’m on a higher dose longer than I may have been if I started in a healthier place. Make sure you and your care team agree on a dosage that is not only good for you, but also that you agree with.”
Brooke sets alarms to take her meds because she is used to an infusion or subcutaneous injection, and it’s important not to miss a dose of Rinvoq.
Tonya: I’m only two weeks in, so still on the induction dose, but this is the first time my symptoms have been somewhat controlled in four years.”
Sarah: “I just started Rinvoq and it’s helping me come out of a flare up.”
Melissa: “My 17-year-old son has been on Rinvoq for about six months after Xeljanz failed him. He’s doing great on it and it’s super easy since it’s a pill once a day. He has also been on Humira and Entyvio in the past. Rinvoq has been the easiest transition so far.
Jennifer L.: “I went on Rinvoq after Remicade failed me and then went on Cyclosporine to bridge the gap before I could switch to Rinvoq. I started it in December of last year and this has been the one drug that has subsided a lot of the symptoms. No nocturnal bowel movements, the only major side effects I’ve had is some acne, but I would say it’s hardly noticeable. I did have to come off hormonal birth control as a side effect can also be blood clots, so you can’t have two drugs that increase your risk of that together. I’m single and wasn’t really thinking about dating coming out of a huge flare, so it was a no brainer for me there. If you’re looking to get pregnant, I’ve heard you can’t be on it because studies have shown birth defects, so that’s a concern potentially for some women or for contraceptive options given that you’re only limited to non-hormonal options while on this.”
Krista: “My fiancé just started Rinvoq and after one day he was feeling better. His energy is up, he has an appetite again, and is showing significantly less signs of inflammation. We still have a journey, but it’s been a miracle drug for him.”
Lizzie: “I have been on this now for 3 months after Humira and Stelara stopped working. So far, my Crohn’s symptoms have subsided. I’m no longer flaring. I would say since taking Rinvoq, I feel more fatigued, but apart from that, I feel really good.”
Marla: “I started Rinvoq 24 days ago, so I don’t have a lot to tell you. I don’t think it’s anything bad. It’s hard to tell if the medication is working yet. I do blood work in November.”
Lauren: “I’ve been on Rinvoq for about one year now. Didn’t work at first, but found out I simultaneously had C-diff. I was on vancomycin and Rinvoq for about 4 months and was scoped for the first time in 4 years because I was in remission. I ended vancomycin and flared again. I will be transitioning to Skyrizi soon, but even though I’m not in remission, Rinvoq has been the only thing that has gotten me in the best place I’ve been in 4 years. I love the ease of one pill a day, no infusions, no shots, etc.”
The main reason Lauren can’t stay on Rinvoq is that it’s not safe for pregnancy and she hopes to have another child. She’s bummed this medication is the only thing that’s shown her improvements and that she needs to switch.
Amber: “I just started Rinvoq last week, so perhaps it’s too early. I am adding Rinvoq to Entyvio for fistulizing Crohn’s. The one thing we are trying to figure out is how it works with an ileostomy. I tend to have a fast track and has passed pills in the past and Rinvoq is an extended release.”
Dana: “I’m currently on Rinvoq! Although I’ve only been on it for 3 weeks, I don’t have any real side effects so far.”
Lindsay: “I’ve only been on Rinvoq for about 3 weeks. I was hoping for a more dramatic change based on things I have read. My fevers have gone away, and I feel like I have more energy, but I still go to the bathroom just as much and the urgency has not changed. I also had to give up breastfeeding to start Rinvoq, so that was hard!”
Sarah: “I started Rinvoq after Humira was not putting me in remission after 1.5 years on it (even with methotrexate added to help). I saw an immediate improvement in my stools. I might have a few pimples as a side effect. It’s only been 3 weeks, but so far, so good!”
Erica: “I’ve been on Rinvoq since May. I haven’t had any improvement. I was hoping when I started that it would work for me. I heard so many people call it their miracle drug. I was scared to try it at first because of all the warnings, but once I started it, I was hopeful. Unfortunately, it was not my miracle drug and I had to add Skyrizi to it…I’m still not better.”
Denise: “I’ve been on Rinvoq for about 7 years. I’ve been part of a clinical trial. I don’t think I have anything bad to say about it. I was so sick with few options, so I took a risk, and it fixed me. I don’t think I’ve had any side effects. I still get scoped annually as part of the study and my intestines have looked great. Sure, I still have tummy troubles, but not the main Crohn’s ones! I get blood work done every 3 months and everything has been normal there as well.”
Abigail was prescribed Rinvoq in late August 2022. At the time, she was hospitalized with the worst flare she’s ever had and was admitted 3 separate times for a 37 day stay. She was facing steroid and Remicade failure and running out of time before requiring emergency surgery. Abigail was given the option of trying Rinvoq for 2 weeks. If it didn’t work, surgery would be required to remove her colon. Her care team got insurance to approve it and she started it right away. Abigail took a double loading dose. Usually, you do 45 mg for 8 weeks, but she did it for 16 weeks instead.
“This medication not only saved my colon, but arguably my life, as I had faced death twice during that hospitalization. I was able to get off steroids. I now take 30 mg of Rinvoq daily and I’m in clinical remission. My next colonoscopy is at the end of this month, so it may show even further remission. I was nervous to start Rinvoq, since it is so new, but given the circumstances, I agreed to it. I am honestly so glad I did. The only side effect I have experienced is high cholesterol. My care team will be addressing this after my colonoscopy. I am forever grateful to Rinvoq for giving me my life back. I choose to do medication and therapeutic diet (SCD). For me, this combination has really helped.”
The visible side effects
Jessie started on Rinvoq to treat her Crohn’s before it was FDA approved because of a flare she couldn’t get under control. She was put on the 45 mg dose for 2 months and saw quick improvements in how she was feeling. After years and years of being poked and prodded for infusions and labs she says she’s so grateful to give her body a rest and just take a daily pill.
“Rinvoq has been like a miracle drug for me. Despite the side effects of weight gain, constipation, and acne on my face and body, I don’t even care because it’s the best I’ve felt in more than 5 years. I’ll take the acne and backne any day.”
Jessie spent hundreds of dollars on skin products and through patient support groups she was recommended CeraVe Moisturizing Cream with Salicylic Acid and CeraVe Body Wash with Salicylic Acid and has noticed a huge improvement. Both products are available over the counter.
Madison: “I am on Rinvoq and I hate it. Let’s say first, it works fast. Within 48 hours, my symptoms were gone, and it’s done a great job at keeping my UC in check. However, the side effects are awful. Acne is the most common side effect and I have it everywhere. My face used to be dry, but now it’s VERY oily. My cholesterol has gone up, which is a known side effect and doctors are keeping close tabs on it. Lastly, weight gain. Weight gain was recently acknowledged as a side effect and I’ve had that, too. The first-generation JAK inhibitors were notorious for weight gain, so I’m not sure why it wasn’t acknowledged in this second generation.”
Madison adds that it’s hard to acknowledge that Rinvoq is working well, but it comes with its fair share of side effects. While the side effects are annoying, she says they are not as bad as a flare.
Alexandra: “I took Rinvoq for 5 months. It did absolutely nothing for my UC, but it gave me horrible acne.”
Lisa: “I was on 45 mg for 3 months. I hated it. I had some sort of infection the entire time and had bruises everywhere. I started Skyrizi three days ago.”
Elizabeth: “I’ve had great results on Rinvoq, I take 30 mg along with Entyvio. My only complaint with Rinvoq is the acne.”
Jenna: “I just stopped Rinvoq. I had a horrible face rash as a side effect. It seemed like an acne flare when it started back in early August and no matter what I tried, it got worse and worse. My dermatologist and doctors both believed it was some sort of rash caused by being on immunosuppressant drugs and stopped my Rinvoq. I took an anti-parasitic and the acne is mostly cleared up.”
Kelly: “I started Rinvoq and only completed 6 weeks (the loading dose and start of the treatment). Insurance issues were part of the reason why I stopped taking it. I also knew that I wanted another child. If I was able to…and there were minimal to no studies for a safe pregnancy. The only symptoms I had were small rashes on my hands and feet, kind of pimple like, not painful or concerning…just something I noticed.”
Jennifer V.: “On Rinvoq and love it!! It’s a pill so it’s easy and it has put me mostly into a therapeutic remission. The cons: weight gain, fatigue, elevated liver enzymes, and anemia. All in all, if you are not having any more children, I would highly recommend this medication. I would need to see more time and research if I were to recommend it prior to pregnancy.”
Jennifer V. had to go off Rinvoq last week while she was taking Paxlovid to clear up Covid and she lost weight for the first time in ages. Now she says she’s back on Rinvoq and the weight is coming right back.
Emily: “I have had Crohn’s and lupus since 2020 and I took the highest dosage of Rinvoq, and it didn’t do much to help me. While I was on it, I thought I saw some improvements, but as soon as I went off it, I realized it wasn’t doing much good. It made my skin break out really bad. I often would pass the pill whole when going to the bathroom. It’s a big pill, easy to see. I’m on Skyrizi now and hoping to reach remission.”
Kendall: “I’ve been on Rinvoq about 3 months. My symptoms have improved, but I’m surprised at how many of the side effects I have experienced: styes, mouth sores, cold sores, and acne. I’m planning to stay on it. My IBD is not stable yet, but I’m hopeful Rinvoq will get me there. Afterwards, I’ll see if diet and lifestyle can maintain remission. It’s nice that you can start and stop Rinvoq!”
Implications for pregnancy and breastfeeding to consider
Sarah: “I just started Rinvoq and it’s helping me come out of a flare up. I am wrapping up my third month. I started to feel improvement after two weeks. It’s such a relief to take a pill after self-injecting for the past 15 years. So far, I don’t have any bad side effects. The only thing that stresses me out is that you can’t be pregnant while taking it, so as a 34-year-old, ready to have a second child, it’s in the back of my mind—how am I going to get off (and back on this), how will I keep my Crohn’s under control when I’m pregnant next? But, in the meantime, I’m grateful that it’s helped me get control over a bad flare that caused me to take a medical leave from my job.”
Allie: “I feel like I had a good experience on Rinvoq. I would say the good is that it works very fast. I was starting to feel better from my flare within 3 days. I was able to get off prednisone because it worked so quickly. The bad is that Rinvoq made me gain weight that I haven’t been able to lose, but my doctors won’t confirm it’s related to the medication. I also felt very bloated all the time. I did not like having to take a pill every day (going from being on Entyvio), so I would sometimes forget to take it. The last thing for me is that I’m still hoping to have another child and it’s not safe for pregnancy, so it was not a long-term option for me, even though it helped me achieve healing from a flare.”
Carmen started taking Rinvoq in February after multiple biologics and non-biologics failed to treat and manage her ulcerative colitis. So far, she says her experience has been very positive. She went into clinical remission within the first month of being prescribed 45 mg.
“I’ve since been tapered down to 15 mg and it’s still looking very positive. Bloods, calprotectin, and how I generally feel has massively improved, along with my quality of life. The negatives I’ve experienced so far have been some mild skin issues, mainly rashes on my face, chest, and upper back, this is currently controlled by over-the-counter salicylic acid face and body wash. I’ve also picked up a few fungal infections and have lost my big toenail because of one of the infections that required antibiotics. For me, these are minor issues and outweigh the overall treatment plan. My GI believes as we’ve decreased the dose to 15 mg, that these minor side effects will disperse over time.”
Carmen says taking a once daily pill is much simpler than some of the other biologic drugs that require visiting an infusion center and taking multiple other medications either intravenously or orally. The cost for me is relatively high for Rinvoq at $150 a month, but this will depend on what medical insurance and copay you have. All in all, Carmen says Rinvoq has been a positive experience and has done what other medications have failed to do.
Important Considerations Regarding Family Planning While on Rinvoq
Dr. Uma Mahadevan, MD, Director of Colitis and Crohn’s Disease Center at University of California San Francisco and lead investigator of the Pregnancy in IBD and Neonatal Outcomes study (PIANO) says when it comes to Rinvoq, the medication has been associated with birth defects in animals at the same dose as given to humans (30 mg), so she avoids prescribing this in pregnancy.
“I do not prescribe Rinvoq to someone who is about to get pregnant. However, Rinvoq is generally given to people who have not responded to anti-TNF, so if Rinvoq is the best medicine for them, I do not hold the fact that they are a woman of child-bearing age against them and give them the therapy to best put them in remission.”
Dr. Mahadevan says if a woman is on Rinvoq and becomes pregnant she has successfully transitioned patients to Skyrizi. This can be more challenging with UC as there are fewer options. The PIANO study is currently researching the safety and efficacy of these drugs. There are several Skyrizi patients being monitored right now and 2 Rinvoq patients so far. You can learn more about being a part of PIANO here. I participated in PIANO with my youngest child as an IBD mom who is on Humira. Being a part of this research is invaluable for our community and helps current and future families.
It’s believed that Rinvoq crosses into breastmilk, so you should avoid feeding your baby that way if you are taking this medication.
Rinvoq Complete Patient Support
Much like other biologics, there are patient support services in place that you want to be aware of. RINVOQ Complete provides personalized patient support when you need it. With RINVOQ Complete, you get 1-to-1 assistance with finding potential ways to save on the cost of your prescription and more. I use Humira Complete for my prescription needs.
You can also get help making sense of your insurance and finding ways to fit Rinvoq into your everyday routine.
If you have commercial insurance, you may be eligible to pay as little as $5 a month for your prescription with the RINVOQ Complete Savings Card. Click here to sign up for your RINVOQ Complete savings card.
Final thoughts
It’s important to remember that just because someone has a miraculous experience or a terrible one with a specific drug, does not mean that you will. I will say, with all the biologics that I’ve covered on Lights, Camera, Crohn’s the visible side effects (weight gain and acne specifically) were the most widespread and common among the patient population. So many of you said you felt guilty feeling “vain” about not wanting to be on a drug because of that, and I want you to know those feelings are valid and matter. At the end of the day, we all must measure risk vs. benefit and what matters most when it comes to keeping our IBD in check.
You can check out other Patient Experience articles that I’ve covered here:
It can feel like a bad break up. You build trust and rapport with a medical specialist who feels like family after overseeing your complex chronic health condition for years and then boom out of nowhere you find out they are moving away. Or maybe you’re relocating and trying to rebuild your dream team of health care providers. Whether this change is brought on by you or your care team it can feel a bit overwhelming to start anew.
My gastroenterologist of 8 years announced she was leaving on the Patient Portal in August. I was out running errands with my kids when a fellow IBD patient and friend texted me and shared the news. My heart sank and my stomach dropped, it never crossed my mind that she would ever leave. What do you mean SHE’S leaving? The doctor who finally got me into remission and has kept me there for nearly a decade. The doctor who oversaw all my family planning, pregnancies, and postpartum. The doctor whose rooted me on after each scope and always had an aggressive and thoughtful game plan no matter what twists and turns we face.
Unfortunately, this is the nature of the beast. I wrote a heartfelt “thank you” explaining my genuine gratitude for her efforts to always go above and beyond and all that she did to be extremely responsive and attentive to my needs. For the past 8 years when I send a Portal message, I always received a phone call from her—whether she was in clinic or on her cell. This time was different. This time there was radio silence and a one line canned thank you message from a nurse in the office. Just like that our worlds were not interconnected. I made a point to get my routine safety labs the Monday of her last week so that she could provide insight one last time. This time she didn’t comment on any of them and left September 15th without saying goodbye. It felt a bit like a slap in the face and stung.
As a chronic illness patient, we tend to feel a sense of comfort by care providers who help manage so much of our lives. This was a reminder to me that at the end of the day it’s a job for many and that even though we may feel that closeness, that bond may just be a façade. At the same time, I’ve also learned that some medical settings don’t allow doctors to communicate with patients, so who knows.
This week on Lights, Camera, Crohn’s I share tips for how I’m navigating finding a new GI that I think may help you along the way. I’m still feeling a bit lost and don’t know what the future is going to hold or what IBD Center I am going to land at, but I want to take you along for the ride.
The first steps to take
If a care provider is leaving the office or moving out of state, you will generally be placed with another doctor from the same team. This is not always a seamless transition though. Each doctor has a reputation. Some people want to be seen by a female care provider; others want a male. Years of experience and the college they graduated from and where they did residency may be of utmost importance to you. Just because the office says you can see “so and so” now, doesn’t mean you can’t speak up and advocate for what you’re looking for. In the realm of the healthcare world, you’re back to being “single” now and you can find who is the right match for you. Don’t feel pressured into anything. The long-term goal here is for a long-lasting relationship with a care provider who makes you feel like more than a number.
I have seen three different GIs in my 18+ years since my Crohn’s disease diagnosis. The first was incredible. I just so happened to meet him during my initial hospital stay, the day after I was diagnosed in the emergency room. He practices in my hometown (a Chicago suburb) and oversaw my care for a decade—even when I lived in Minnesota and Wisconsin while I was a news reporter and anchor.
When I moved to St. Louis in 2014 and my Crohn’s was flaring, I knew I needed to find a local provider. So once again, during a hospitalization for a bowel obstruction, I connected with the GI who was doing rounds at the hospital and loved his bedside manner. I felt safe and like I had found another great doctor. Unfortunately, while under his care I was very sick. We couldn’t figure out why my Crohn’s was so out of control. By the third hospitalization in 15 months, even while ramping up Humira injections to every week, and after several ER visits, his partner called me while I was in the hospital and said I needed an MRE to get to the bottom of what was happening. I did the MRE and was called back by that same doctor (not my GI) and he coldly told me over the phone that I needed a bowel resection—either the next day or in 10 days. He said I could go home and build up my strength. I chose to wait the 10 days. My actual GI never visited me in the hospital, never followed up…I knew it was time to drop him like a bad habit.
Enter in my most recent GI. Everyone raved about her. My colorectal surgeon and friends from the local Crohn’s and Colitis Foundation chapter all said she was the one to go to. So, I did…and now 8 years later I feel a bit stressed about starting the hunt for a great doctor all over again.
Amazing doctors can fall right into your lap, but sometimes you need to do some digging and research.
The behind-the-scenes work
At the end of the day, I find the most helpful advice comes from fellow IBD patients. There are several ways you can approach this.
Look up GIs in your area who specialize in IBD. This is key. You don’t want a run of the mill GI, if you have Crohn’s or ulcerative colitis you need a GI who specializes in IBD.
Check out online reviews and what people have to say about them.
Do a call out on your social media and see if anyone locally has any recommendations or personal experience. You want to hear the good, the bad, and the ugly. I have gained incredible insight this way. I had one fellow IBD friend message me about her experience with the provider I made an appointment with—and it made me a bit concerned. This week during my well woman visit, another IBD mom, who happens to work as a nurse practitioner in my OB’s office, told me about her awesome GI who is in the same group—so I plan to switch my appointment per her recommendation. This insight is GOLD.
Interview several GIs. Don’t feel pigeon-holed by only meeting with one possible new provider. Make a few appointments and see who jives the best with you. I have two appointments in January with two new GIs. My last clinic appointment was March 2023. I was supposed to be seen in October…that’s the soonest I can be seen.
Come up with a list of questions and see whose responses give you peace of mind and make you feel empowered to take on your IBD.
Be mindful of the office staff and how they treat you on the phone.
Make a pros and cons list of staying with your current GI team or starting fresh.
Decide if the doctor’s gender matters to you. I’ve had two male GIs and one female. I personally enjoyed having a female during my family planning and pregnancies, but now that my family complete it’s not *as* important to me, but still preferred.
To switch offices all your records and a referral will be needed by your current office, so make sure all your ducks are in a row and that the two offices have communicated. I made it clear with my current office that I am being seen by both IBD Centers, to see who is the best fit for me.
What questions to ask possible new providers
You may be wondering what to ask a new doctor or where to even start with your saga-long health history. We all know how rushed clinic appointments can feel. Here are some of the questions I plan to ask in January once we get the basic health questions out of the way.
How often will you be seeing me in clinic?
How often do you like patients to get labs? What kind of labs will you draw?
Will I keep my current medication regiment (ex. Biologic)? Will I stay with the originator/reference product biologic or are you planning to switch me to a biosimilar. Note: For you to be switched, your GI has to write a script for that to happen.
What days of the week are you in the clinic to see patients? If you have childcare or work conflicts, this can help so you know if their schedule/availability matches with your needs.
What hospital(s) do you treat at?
Are you apart of any research studies going on?
How often do you like patients to get a colonoscopy?
If I need pain medication to manage my symptoms, will you prescribe it? My last GI refused to—and I found that to be ridiculous.
Do you perform intestinal ultrasound here and if you don’t yet, when do you plan to?
If I run into insurance issues, will you go to bat for me and write an appeal letter or do what it takes to make sure I receive my medications on time?
Final thoughts
It’s jarring and takes a lot of time and energy to find a new provider but stay positive and know there are so many incredible gastroenterologists out there who genuinely care about patients and about helping our community out in any way they can. You are not civilly bound or married to your doctor—it’s not about hurting feelings or trying not to be a bother, be bold and do what’s best for you. I’m grateful to be in remission right now. My heart hurts knowing so many patients going through this same ordeal, while flaring, don’t have the luxury of taking their time or the privilege of living near an IBD Center with options. I always try and tell myself and I think this perspective will help bring you clarity, too—think of yourself at your sickest, lying in a hospital bed. Would you want that person leading your care? If there is any doubt or hesitation, keep looking for the right doctor for you.
It’s no surprise IBD impacts so much more than just our guts. Not only is there the gut and brain connection, but also the complex nature of our chronic illness(es) that can cause serious anxiety, depression, and mental health issues. The isolating nature of Crohn’s disease and ulcerative colitis, the unknowingness of what the next day holds, and the never-ending laundry list of procedures, labs, scans, and surgeries, year after year is a lot for any person to go through.
Even though I’ve lived with Crohn’s disease for more than 18 years, and have seen three different gastroenterologists in that time, not once has my mental health been brought up during a clinic appointment. When treating a person for IBD, the health of the whole person needs to be considered. I ran a poll on Instagram asking the IBD community if they’ve ever been to therapy. Out of 185 respondents, 70% seek therapy, 18% have not, and 12% are considering it.
I did an article in September 2020 about why a specific public bathroom at a grocery store I used to shop at triggers me and shared tactics for coping. You can read the article that featured Dr. Tiffany Taft here.
This week on Lights, Camera, Crohn’s we hear from those in our community about the advice that’s resonated with them the most since receiving their IBD diagnosis.
The words that have made a lasting impact
Olivia: “3% effort is still effort. You’re not going to be able to give 100% every day and that’s OK. Your best can look different from day to day.”
Julie: “It’s not your fault, you didn’t do anything wrong.”
Kristen: “You can’t drive forward if you’re always looking in the rearview mirror.”
Sarah: “Medical trauma is trauma and to give myself credit for all I have overcome.”
Cindy: “Remove all IBD related stressors from the bedroom to avoid impacting sleep. In our case, this meant no Humira injections for my daughter while sitting on the bed or nearby it.”
Tina: “Imitation is the best form of flattery.”
Lauren: “Don’t Google things you’re worried about, like symptoms.”
Jennifer: “Stay in the present.”
Heather: “Sometimes you just need to take a nap!”
Myisha: “If it’s not going to matter in five years, don’t give it five minutes of your energy.”
Kate: “It’s not your fault.”
Susan: “I’ve never seen a therapist, but I always tell myself it could always be worse.”
Stacey said: “You can’t control how seriously people take Covid. You can only control how you protect your physical and mental health. You have to put your health first. And, if people don’t agree with your choices, then that’s their problem. You can’t risk your health just to make it easy for others or to placate them. You come first in your life.”
Robin: “The “things” I do—my work advocating for others, supporting others, helping others face challenges with their diseases—I deserve that, too. Not from other people, but from myself. The beauty in therapy is that you’re receiving a non-biased/outsider opinion. This person that has no side and will sometimes say something you’ve heard 1,000 times in a way you’ve never heard before or even in a better way that allows you to really listen to what’s being said. To absorb it. Even to say it multiple times with no judgement if that’s what’s needed. Also, EMDR, which is a whole other thing and only part of the therapy experience.”
What is EMDR therapy?
Several people said EMDR therapy was their favorite and has been lifechanging. So, what exactly is it? Eye movement desensitization and reprocessing (EMDR) is a fairly new, non-traditional type of psychotherapy that’s popular for treating post-traumatic stress disorder. EMDR focuses on the natural tendencies our brains have for healing from traumatic memories. There are mental blocks (such as feelings of self-esteem issues and powerlessness) that can prevent us from healing. During EMDR, you are allowed to process the bad memories and experiences to start healing yourself. This helps our brains process challenging thoughts and feelings in a healthier way. Chances are through your patient journey you’ve endured several vivid and significantly painful moments that you haven’t been able to process and heal from.
Supportive Resources about managing mental health and IBD
There’s no doubt life with IBD brings on financial, social, and emotional pressure. These constant looming stressors can contribute to flares and unpleasant symptoms. This is where Project Crohn’s comes in. It’s a ministry that supports young adults with Crohn’s disease and ulcerative colitis. The main mission of this 501(c)3 non-profit, which launched in 2022, is to offer free access to mental health counseling, financial planning, and 1-1 mentoring. Anyone with IBD ages 18-30 is invited to apply for support programs that are possible thanks to generous donors.
This week on Light’s, Camera, Crohn’s we hear from the creator of Project Crohn’s and learn more about his mission to make a difference in the IBD community.
How Project Crohn’s came to be
Two weeks after John Christian Kuehnert’s 18th birthday, he started to experience intense gastrointestinal pains.
“It culminated in me passing out and being rushed to the hospital. A surgeon performed an emergency bowel resection, after finding a mass the size of a grapefruit on my intestines,” said John. “My surgeon saved my life, and I spent the next week in the hospital recovering. It took another eight months of slow recovery and meeting with gastroenterologists to discover I had Crohn’s disease.”
For the next 7-8 years, during college and after, John dealt with chronic pain that disrupted almost every aspect of his life. In recent years, he’s reached remission, but it took him a long time to get to where he is today.
“In college I started to see a clear connection between highly stressful situations and flare-ups of my disease. Sometimes, the internal pain would start less than a minute after being put in a stressful situation. Humira and 6MP have been crucial for me reaching remission. However, learning how to manage the primary stressors in my life has had a major impact on me reaching remission. I created Project Crohn’s to help others manage their stress and flare-ups more effectively,” said John.
The debilitating and unpredictable pain from IBD can lead to depression and anxiety and cause college students and young adults to have difficulty managing stressful coursework, while trying to juggle the debt from medical bills and college combined. John is determined to help ensure that no college students with IBD in the US face IBD alone. Project Crohn’s was created to provide the support his younger self could have benefited from.
Putting Mental Health and Financial Literacy in the Spotlight
Mental health is the primary focus of Project Crohn’s. The mind-to-gut connection is strong. This year, Project Crohn’s goal is to raise $100,000 to cover program costs for 25 young adults in the United States who are taking on IBD. Every penny from every dollar donated to Project Crohn’s is given to program recipients. By reducing stress and helping those with IBD learn to navigate life while managing their mental and emotional health, Project Crohn’s focuses on providing counseling and therapy services, while also building other helpful resources.
Here’s a look at the three main pillars of support that Project Crohn’s provides:
Personal mentoring: Ask helpful career-specific questions to help process challenging situations, while putting life’s crossroads in a positive perspective.
Financial advising: 1:1 virtual meetings to discuss your current and future financial situation, explore options, and suggest changes.
Counseling therapy: Promotes positive attitudes and develops effective coping strategies.
How to get involved and apply for assistance
You can apply for support directly on the Project Crohn’s website. It takes about 60 seconds. John wants people in our community to apply ASAP. Everyone who is accepted receives a scholarship, but currently, there are a limited number of scholarships available.
“We’re building a world where every young adult with IBD has full and free access to the secondary health resources they need to reach remission,” said John.
One of the worst aspects of life with IBD (in my opinion) are the side effects of the devil’s tic tacs aka steroids and what they do to your outward appearance. It’s a shock to the system to go from looking malnourished and thin to having a moon face and an insatiable appetite coupled with irritability, the shakes, acne, and insomnia. The weight fluctuations patients endure throughout their journey is a rollercoaster of unexpected twists and turns. Our bodies transform from being thin and sickly to healthy and in remission with weight we’re not used to. While IBD is called an “invisible” illness, our outward appearances take a hit more often than most might think. Those around us often compliment us when we’re “skinny” and stay silent when we’re a normal weight—this is detrimental because there is SO much more than meets the eye.
These photos are three months apart. Pre-diagnosis and on 22 pills a day (60 mg of prednisone).
This week on Lights, Camera, Crohn’s we peel back the layers of complexity regarding body image and self-esteem with IBD. Hear the candid commentary and often heartbreaking reality from 27 patients and caregivers.
The steroid struggle
I always know that after 3 weeks of prednisone my face and looks change dramatically. I went from someone with aspirations to work in TV news, on camera every day, to not letting my mom take pictures of me. I started in the TV business as a producer and once I was off prednisone and well managed, I got promoted to an on-air role, talk about messing with your head. I used to dread being a morning show anchor and returning to the news desk after being out for weeks. Nobody knew I had IBD or what my health struggles were, but they could see something was up. The calls to the newsroom and the comments were mortifying. I used to chew gum all day long while on prednisone to try and curb my appetite. My former GI told me to be careful doing that because the ingredient Sorbitol can cause stomach upset and diarrhea.
Katie: “The moon face with prednisone really did a number on my body image. I was in seventh grade and the kids and teachers would ask me what happened and why my face was like that. My school nurse, after I was out for two weeks because of a flare, came up to me and said, “Glad to see you, but honey, you look like crap.” I was in middle school when this happened, so I always just associated having Crohn’s with being ugly and that has been a long and hard battle. When you’re relapsing and you lose a lot of weight, people tell you that you look great, but when you’re healthy and in remission and you’ve gained weight back, people stop commenting about how good you look.”
Katie’s awful experience as a middle schooler inspired her to go into education. She is now a high school teacher. She says half the reason she went into teaching was to make sure students who have chronic illnesses, or who were absent, had someone who could empathize with them and just try to make sure that the experience never happens to anyone.
Danielle: “Prednisone destroyed my body image. When you look in the mirror and don’t recognize yourself, it’s really an emotional experience. In so many ways, prednisone is amazing, it got me out of my flare, but it turns my face into a swollen balloon. I can’t look at pictures of myself during that time. I am always so self-conscious when I’m on prednisone and feel like everyone can see it. IBD does many things, one of which is controls how you look which is a difficult part of the disease. I just got married and am in a minor flare and I delayed starting budesonide because I didn’t want to risk any moon face.”
Ross: “For me, what’s had the biggest negative impact is the side effects of steroid use, specifically back acne. This developed the first time I took steroids for my Crohn’s six years ago and it still has never gone away. It has had such a negative impact on my body image even though it’s not something anyone would really see. It has stopped me from taking my shirt off during summer months in public, or I’m self-conscious of having my top off at the gym changing room or even around friends or anyone I was dating. It’s something that I would almost always be conscious of these last six years. Even now, when it’s not too active, the scars and pigmentation and redness would stop me from taking my shirt off or make me very self-conscious around other people. I don’t think it will ever go away. It used to get me so down when I was already struggling with flare ups, etc.”
Laura: “Long-term steroid use was the most damaging for me. I was unrecognizable to myself and to others. I never found much support for those body changes and the mental health impact from ‘roids.”
Chanel: “I have struggled much more with weight gain from steroids and other medications than I ever have with the weight loss that is oftentimes common in IBD. Many informational graphics and articles out there about IBD always mention weight loss, but never the issue with weight gain. I’ve always had an unhealthy relationship with my body image because of the constant weight fluctuations due to medication.”
The fluctuations from being thin to gaining weight
I’ll never forget back in 2012 noticing that I was getting thinner and thinner by not eating any differently or increasing my physical activity. I was a morning news anchor at the time in Springfield, IL and I remember weighing myself each morning and seeing 1-2 pounds drop off each day…for weeks. At the time I wasn’t very well informed about IBD and didn’t realize that was a sign I was flaring. I was in my late twenties and gearing up for a trip to the Dominican for a childhood friend’s wedding. To be honest, I was happy, and I liked how my sickly body looked.
Fast forward to 2015, I was engaged and had bowel resection surgery. I had never weighed more than 127 pounds in my life and had dropped to the teens when I was unwell. My first post-op appointment with a new GI I gained seven pounds, and I wasn’t happy about it. My GI said, “this is what happens when you’re healthy and finally absorbing nutrients.” When you’re planning a wedding, healthy weight gain hits a bit differently.
Ever since then, I’ve been in remission and I’m so grateful for that, but my weight has been something I think about now—not only because of my IBD being in check, but after having three kids. My self-confidence and how I feel about my reflection in the mirror has taken a blow as the years have gone on.
Madison: “ When I was in a severe flare in 2020 after being diagnosed, I dropped 20 pounds unintentionally. I was normally around 127 pounds and during my worst flare I was down to 107 pounds. It was absolutely horrifying. I was devastated. I remember going to American Eagle to buy shorts in a 00 size because none of my clothes fit me. I felt sick and looked sick, which made everything 10 times worse. Not being able to eat food and constantly running to the bathroom in pain led me to be malnourished. I remember being at my GI appointment when we were trying to figure out a treatment plan and my nurse said after taking my blood pressure, “Madison are you eating?” I started to cry to her and said “everything hurts me. I can’t eat.”
While Madison was growing up, she always thought being thin was attractive. After being so severely sick, she now personally affiliates being thin with being sick.
“Being on prednisone to help was both a blessing and a curse as it helped get my flare under control, but also led to unwanted weight gain in my face, which makes me super self-conscious, especially in pictures. I know that side effects are temporary, but it can really hurt someone’s self-esteem.”
Fast forward to now—three years later, Madison is on a treatment plan that works for her and she’s proud of her body. She says she looks forward to being weighed at the doctor and at infusions appointments just to see a healthy weight.
“Weight and IBD is very fluid, and I constantly remind myself to give my body grace. When you’re losing weight on top of being sick, it can be detrimental to your mental health. You look in the mirror and see someone you don’t recognize.”
Ashley: “I’ve kept three different sized sets of clothes with my ulcerative colitis. My normal size, a smaller size for when I’m extremely sick, and a larger size for when I’m on prednisone. I’ve always been super self-conscious about my body size because a lot of time it’s out of my control. I also feel self-conscious when I’m so sick and lose weight and people comment about how good I look. I’ve felt guilty because I didn’t work out to “earn” that body. Then, I’ve felt frustrated because it made me mad that to look a certain way that got me compliments, I had to be extremely sick and unhealthy. Now, I have a permanent ileostomy. I am more confident in my body than I have ever been. I think that’s mainly because I’m so healthy now and I have more control over my body and life.”
Danielle: “So many things come to mind. I was 14 when I was diagnosed, and while I was sick prior to being diagnosed, I was judged for being too thin and accused of being anorexic or bulimic. Then upon diagnosis, I gained 30 pounds in 2 weeks from prednisone. At 14 years old, I was swollen and chubby and self-conscious. Since being diagnosed, I haven’t struggled with being “too thin” again, but with weight gain from prednisone and other medications. I’ve been told far too many times that “anyone can lose weight by eating right and exercising” but it’s not that easy with a chronic condition. Some mornings, I’m so fatigued and achy, I can’t get out of bed, and it takes my energy to get ready for work. My diet is extremely limited as I had a bowel resection and I’m allergic to dairy products. So, I live off protein and carbs which are not ideal for weight loss or even maintenance.”
Amber: “I have been on Stelara and have reached remission, but the thing people don’t talk about is after being in constant flares, you have no idea how much weight you might gain because of not flaring. It is a great thing and I’m so happy to be in remission, but now I must learn how to work on the nutrition aspect of it all. To be honest, all these years of being sick, I never had to worry about weight gain. I had to worry how much weight loss affected me and most people do more posting about that. Not the up sides of remission, but also what we do now to get onto a new lifestyle change. We have to learn a whole new way of nourishing our bodies.”
Stephanie: “I have found that when I’m flaring at my worst, I lose weight from not being able to eat and my body not retaining anything that I eat. I get so many compliments about the weight loss, but it breaks my heart because I might look good to others, but I’m at my sickest.”
Jennifer: “It’s crazy to know how jarring it can be to see your weight fluctuate so much so fast. Diagnosed with UC about a year ago and went through a huge flare, lost like 35 pounds. I hated looking at my body because I was under 100 pounds as an adult woman. Fast forward to now and I’m back to my “normal” weight, but still have issues with how my body looks as weight came back. It’s softer and less toned than before. I’m sure it’ll get back to the place where I was, but what if it doesn’t? Our bodies can go through so much and I’m thankful for its resilience, but the mental toll the fluctuations can be a lot to try and manage and reflect on as we navigate this journey.”
Louise: “I’m newly diagnosed and dealing with my second flare. I worry about the impact it has on me mentally because I am happier with my body when I’m very ill, and unhappy with it when I’m on steroids and feeling better. It can’t be good for us. Negative comments (from my mother!) when my face gets chubby on steroids and compliments from people when I’m not eating and very unwell are difficult to process. I get angry when they compliment me on how well I look just because I’m skinny, because I feel like it minimizes how bad things are and how unwell I am. I also like it because I like being slimmer. It is so messed up! When I get my appetite back, I try to fight the cravings and then binge and then feel awful for it. I have never been this way pre-IBD. I was always fit and healthy and in control of my relationship with food. There’s also a weird part of me that wants to look thinner because it’s an invisible illness, I want people to see how unwell I’ve been, so they don’t think I’m lying.”
Louise said it felt good to let it all out and that she’s never said any of this. Coping with big health issues comes first, but this annoys her during quiet moments. Her sentiments ring true for so many of us.
Myisha: “I struggle with body image a lot. I’m naturally 127 pounds, but with prednisone I got to 210 pounds and no longer recognized the person I was staring at in the mirror. I cried for weeks unable to recognize myself. I still cry now and I’m down to 139. My clothes still don’t fit, and I still have clothes that are a size 12-14 because I know that prednisone is an ongoing possibility and that I might get back to that size if I have a bad flare.”
Jessie: “The constant weight fluctuations have always made me self-conscious. It messes with your head too because when you lose weight from a flare, people say “oh my gosh you’re so skinny you look great, what did you do?”…but then when you gain weight (from medications not from becoming healthier) no one comments and you’re just self-conscious about it.”
Celia: “Before I was diagnosed, I was happy with losing weight. I was 13 and hated my body. I remember I had my diagnostic colonoscopy and the day after I took a picture of my stomach, it was as flat as it’s ever been. I felt good about how I looked, but keep in mind I was barely 100 pounds and 5’5’. I felt awful and I was tired all the time. As I started Humira and was gaining weight, I missed my old (very unhealthy) body. I constantly am reminded by loved ones that this weight gain is good. I just returned to the weight I was pre-symptoms almost 4 years later and I feel good overall! I still struggle with how I look and have developed a connection between food, weight gain and loss, and pain from Crohn’s that I still need to work on, but I’m doing my best. As a 17-year-old, we all tend to struggle with how we look, and I need to remember all my body has been through and done for me.”
Kindra: “Along with IBD, I also have Primary sclerosing cholangitis (PSC), so when I flare or I’m unwell, I lose weight and I can’t do anything to keep it on. I will eat all day long and you can count my ribs and see all my chest bones sticking out. I get compliments from people who don’t know me well about how thin I am/how they wished they could eat like me, and I never quite know what to say. When I am healthy and can gain weight and I have to shop for bigger clothes, I get a complex thanks to years of the American media diet culture.”
Leah: “I feel like weight gain after a flare has been challenging. All the body yo-yo and knowing the weight coming back on is so healthy and just what your body needs, but I believe it can be tough at times.”
Kelly: “I’m scared to go below a certain weight in fears of having a flare, but on the backside, I feel unattractive for my partner and fight with self-image.”
Bloating is a bitch
Even in remission, bloating is one of my main IBD symptoms. I often tell my husband, friends, and family, “you can physically see my pain right now. Feel how hard my stomach is. I look like I’m 5 months pregnant.” The reaction is always one of shock, raised eyebrows, and a bit of sympathy. Because of this I usually wear elastic waistbands or dresses. You’ll rarely ever see me wearing pants or shorts with a button. When I used to work in corporate America, my Crohn’s was out of control, and I would repeatedly have to unbutton my pants in the board room and lean back in my chair during meetings with co-workers. It was humiliating, but I always tried to make light of it. It’s amazing how we can wake up with a flat stomach and have a distended belly that truly looks like there’s a pregnancy going on by dinner.
Courtney: “Being emaciated from poor nutrient absorption, but bloated from gas and inflammation at the same time can lead to a confusing relationship with food. I don’t think it’s quite the same psychology as an eating disorder, but when eating causes you pain, or makes you literally change your pant size pre and post meal, it can be easy to want to postpone meals if you have plans, eat little in social situations, and can create an unhealthy relationship with food. Food is not the enemy, it’s a necessity—it’s all about finding the proper treatment and lifestyle to manage your IBD.”
Courtney adds that living with an ostomy is a huge adjustment with major impacts on how you perceive your body and appearance.
“My first ostomy was such a shock to the system. It feels almost surreal to see a piece of your intestine outside your body. If you have no control over output timing, which can leave you feeling broken and helpless during bag changes. It wasn’t until my second ostomy that I was able to recognize and be grateful for the benefits it affords me. I now live a healthy, active, pain-free life and couldn’t be more grateful.”
Patti: “My everyday bloated belly is like a giant dark cloud that blankets my self-image. I really try to embrace the rest of my healthy body and be grateful that I’m able to leave the house and do some functional activities and can sometimes hide my ugly belly if I’m completely emptied out, but my typical mantra is that I look disgusting because of my belly. I know this is negative thinking and messes with my mental health, but after dealing with Crohn’s for the past 51 years, I’m not sure I can ever stop that thinking.”
Alyson: “Bloat makes a girl feel AWFUL. Add in intestinal dysmotility with Crohn’s and I literally start the week at a size 8 and end in a size 10. Then we just switch to those wide leg pants with the elastic. Prior to my diagnosis, I never had to unbutton pants before or after eating. Now, it’s the first move the second we get in the car to leave because, ouch. It really makes you feel cute.”
Alannah: “For me weight fluctuation is my biggest struggle. One week I’m slim with minimal bloating then the next I’m bigger and bloating more. My partner has always struggled with confidence with his stoma due to weight gain even though he’s perfect as he is. He will never go without a top off ever.”
Naima: “Bloating is the worst. I am getting married in three weeks and I’m so worried about being bloated or gassy or having a minor flare. It’s hard to feel pretty when you can’t control how your body is feeling. Some days I feel strong and look lean—other times I hate how I look.”
Post surgery swelling, scars, and ostomies
Sabrina: “I’ve struggled with my body image after being diagnosed and going through three surgeries in a matter of two years. Seeing myself with a bag was hard and the changes that came with post-surgery swelling, scars, and fluid buildup. Body image and my new body will always be something I struggle being comfortable with.”
Mark: “I’ve had Crohn’s for more than 37 years and in that time multiple operations. I have many scars, but they are a part of my life and badges of honor in my constant battle with this disease. My IBD has thrown everything at me including short bowel syndrome, liver failure, osteoporosis, broken vertebrae, septicemia, lymphoma, coma, hepatic encephalopathy, and the list keeps growing. When I see my scars, it reminds me to keep fighting. Crohn’s will not win or stop me from living a full life. If someone asks me about them, I don’t hide. I tell them it’s battle scars. Body image is important to me, and it reflects how strong I am, and no one can take that away. I’ve worked all my life and traveled the world. This year (one year after coming out of a coma) I’ve been on a Pole-to-Pole journey.”
Martin says body image is both how you feel and how you look to others, as well as yourself in the mirror. In his early days post-diagnosis, as a young adult starting a career, he felt anxious and angry, but looked normal.
“Post surgery and with time came the additional stress of looking and behaving differently and additional comorbidities that accompany IBD. This included dental and bone issues. I was hugely lucky to have found my lifetime soul mate before my Crohn’s became active, illness and surgery haven’t changed anything for us. I have been various shades of ill with Crohn’s all my adult life and it hasn’t helped self-love, including self-image on any level. I survived and thrived because of my family’s support and very little real-world commentary on my body from others, although I sometimes preempt this by joking about looking like Homer Simpson these days. I now face further life changing surgery and I worry about the impact of my quality of life on my family. I no longer care about how others see me.”
From a caregiver perspective
Cindy: “My daughter is so deeply at war with her body, and I know thanks to chronic illness it’s so much more complex than simple teenage-girl-in-the-age-of-Insta feelings of “I don’t like my shoulders” or “I should watch my calories” (both of which are things she thinks). It is rooted in a real fear of and discomfort with her body and what it puts her through. She has so many years to live in her body and I wish more than anything I could give her peace with it…the same relative peace and confidence I have always had with my body. I just can’t relate.”
Keyla and her teenage son have IBD: “The struggle is real. Not only do we have a condition that there is stigma about, then we have constant weight issues, scars, bruising, and so much more that leaves us with body image issues. Our bodies have been through enough and done so much for us. Let’s care for it, nourish it, nurture it, and be kind to it.”
Taking on body image one day at a time
Focus on strength and resilience. Recognize your ability to navigate through challenges and adapt to changing circumstances. Once you’ve been through the flare and recovery process once, you know what to expect. Find comfort in knowing you’ve done this before and know most of the unpleasant side effects are temporary.
Seek support. Surround yourself with a strong support system of family, friends, or support groups who understand and empathize with your experiences. Sharing your thoughts, concerns, and emotions with others who have similar experiences (hello online IBD fam!) can help you feel heard and supported. Surround yourself with people and media that promote positive body image and self-acceptance. Be selective in the content you consume, ensuring it supports a healthy perspective and challenges unrealistic beauty standards.
Educate yourself. Learn more about IBD and its impact on the body. Understanding the reasons behind changes in your body and recognizing that they are a result of the disease, not a reflection of your worth, can assist in developing a more positive body image.
Practice self-care. Engage in activities that promote self-care and boost your self-confidence. This can include hobbies, exercise, meditation, or anything that brings you joy and helps you connect with your body in a positive way. Oftentimes our fatigue can hinder what type of daily activity we feel capable of, take everything in stride and don’t overdo. Start with a 10-minute walk and build up from there. The fresh air and simple movement will do wonders.
Focus on what your body can do. Shift the focus from how your body looks to what it can do. Appreciate the functionality of your body, such as its ability to heal, fight illness, and carry you through daily activities.
Reece was diagnosed with Crohn’s disease in 2014. Since then, he’s endured countless surgeries, flares, and setbacks, but chooses to focus on the beauty his life still bestows despite the challenges.
“I’m a shell of my former self, but I am okay with it. I’m grateful for my life. I have people who love me and care for me. When I look in the mirror, I see a fighter. All of the marks and scars are just evidence of my battles. It was not easy to get here, but here I am. I will never be the person I was before Crohn’s, but my disease has taught me so much about myself and life.”
Communicate with your healthcare team. Discuss any concerns or insecurities related to body image with your healthcare team. They can provide guidance and offer resources to support you in addressing these concerns. Therapy may help you cope with these struggles and provide helpful tools for living with the uncertainties and challenges.
Remember, your worth is not defined by the physical changes caused by IBD. Surround yourself with positivity, celebrate your strengths, and prioritize self-care to foster a positive body image and improve overall well-being. Most importantly, after reading this I hope you feel seen and realize that your struggles and insecurities are not unique to you.
There’s not a magic bullet for helping us cope with these insecurities, I know it can be a daily challenge. I truly believe we are our own toughest critics. If family members or friends compliment you when you’re unintentionally thin, respond by saying it’s because your IBD is out of whack. Speak up and inform those who have no idea what’s going on in your mind, with your body, when you look in the mirror, get on a scale, or have to think about how your outfit choice could impact your physical symptoms every day…it’s a lot. You are beautiful. You are strong. You are capable. There’s no one like you in the world. Your body, no matter the size, is working overtime with IBD, please take a moment to show yourself and it, some love.
To receive biologic infusions at home or within a medical setting? That is the question. As an IBD mom of three who has done self-injections for 15-plus years, it’s intrigued me to see how many people in the IBD community now receive at-home infusions. This inspired me to dig deeper and hear firsthand what fellow patients have to say about their experience. When polled on Instagram—out of 260 votes, 55% of IBD patients prefer at home infusions compared to 45% who would like to receive their medication in a medical setting. This week on Lights, Camera, Crohn’s hear advice, guidance, the role insurance plays in all of this, and perspective on treating your IBD at home versus at an infusion clinic or hospital. I learned a lot and I think you will, too!
Discussing Home Infusions with your Care Team
If receiving your infusion at home interests you, here’s what you can do to get the ball rolling on making it happen.
Talk with your GI about whether home infusions are an option in your area and if they feel comfortable with you doing so. Discuss the risks and benefits. Your GI will need to write a prescription.
Call your insurance and make sure home infusions are covered in your health plan.
Amanda has been doing Remicade infusions at home since the pandemic started and she says it’s been much better for her. Being able to receive her medication at home and cuddle with her 4-year-old daughter and dog are big wins for her. Recently, she also receives daily IV fluids, and thanks to her Port and home health, she’s been able to do it herself.
Amanda: “Home infusions have changed the game for me. They make me feel safer as someone whose immune compromised. I almost always have the same nurse, and I don’t have to commute before or after. How grateful am I!”
She says how you coordinate setting up home infusions is dependent on your insurance. Personally, after talking with her insurance she found a list of home health agencies within 30 miles of her house and called and spoke with a few.
“Some did not administer my medication, some charged separately for nursing fee, and some were not taking new patients. Once I found a good option for my family, the home health company reaches out to your GI doctor, who then sends the script to the Specialty Pharmacy, rather than to an infusion center.”
When Bad Veins and IV issues Set You Back
One of the main reasons I chose to do a self-injection rather than an infusion was because of how horrible my veins are. When I was told I needed to start a biologic during a hospitalization in July 2008, it was the same hospitalization where it took three people and eight tries to start an IV on me. To this day, I’m still a bit fearful of getting IVs because of that traumatic situation. Several people wrote to me with the same concerns—this is something to consider if you typically need a Vein Finder for hospital visits and procedures.
Olivia: “I initially loved the idea of doing infusions at home. My first one went smoothly, the nurse had a bit of trouble finding a vein and drawing blood, but no problems after that. The ability to do my infusion in my bed or on my couch was so much more comfortable than the hospital! But then, the next two infusions, the nurse had trouble getting a vein and one had to be rescheduled because of hospital policy. That infusion took over an hour to find a vein. After that, we spent a month trying to convince insurance to let me go back to the hospital so I could use the ultrasound to get IVs placed. Ever since, I’ve been doing infusions at the hospital. The idea of doing infusions at home was nice, but it didn’t work for my situation.”
Meredith: “I get my Entyvio infusion at home. I don’t love it. It is more convenient than having to go to the hospital/office, but nurses often have trouble starting IVs on me and at home they are the only option. There is no backup and I’ve had a few bad experiences. Things have gotten better because I now have in my profile that I need pediatric needles, but they aren’t the standard, so those types of needles are not always supplied. The insurance decided for me that I would receive my infusions at home because it’s cheaper and since I’ve never had allergic reaction. The service by me is different, but there is no future scheduling. You know around the date that your next infusion is and then you’re contacted one day beforehand with a time. I’m too high strung to be comfortable with that, but it is what it is.”
Much like Amanda, Meredith loves having her dog there for support. When she initially started getting home infusions her dog needed to stay outside the room because she was too interested in what was going on, but now she’s used to the process and equipment and can snuggle.
Heidi: “My insurance made me switch to home infusions. At first, I was nervous because I’m a hard stick and always require a vein finder. I also just felt safer in a hospital setting. But, I’ve been doing home infusions for three years and I love it. I have my “old faithful” vein and I like being in my own home with my own bathroom and other comforts. I also have wonderful nurses whom I look forward to seeing each time. Everything is so much more personal this way.”
Melissa: “Sadly my veins are awful, and I wouldn’t want to chance the one person who comes not being able to get an IV started.”
Concerns from the Community Regarding Home Infusions
Ashley: “With my ulcerative colitis, comes other chronic illnesses. Which is true for a lot of people in our community. I have POTS, so having my infusions done in a healthcare setting is more reassuring for me because there’s more safety nets in place.”
Emilie: “I don’t get my infusions at home anymore (I used to!) because I hated it. The nurse was always texting me to reschedule, I was always having to deal with CVS trying to get my medication delivered on time, and I had to store all the stuff. It also made me feel like a “patient” in my own home. Mentally it was incredibly stressful organizing and coordinating everything and feeling like I was constantly sick because the medical equipment was always around. I much prefer going to an infusion center, where I just show up and they have everything ready to go. Just another perspective—I know a lot of people love getting infusions at home and I’m in the minority, but there are cons to consider.”
Mary: “I don’t currently do an infusion medication, but I have in the past with Remicade. My GI office set home infusions up for me after I did the first few in the office. It was more convenient for me due to the office being about 1.5 hours away from where I live. I was provided with an IV pole to keep at home among other supplies and a nurse came to my house to do the infusion. It was awkward at first, but after a few times it got better. Unfortunately, during one infusion, I had an allergic reaction unexpectedly, during which the nurse had to give me Benadryl and another medication. After that happened, I couldn’t do them at home anymore and had to go to the office. After two more infusions, my GI discovered I wasn’t responding to Remicade anymore and I had to switch to Stelara. The cons are the risk of something happening and not being in a medical setting. Luckily, I had a great nurse who knew what to do.”
Adam: “I prefer the clinic and the reason is, when I was on Humira and had to self-inject, I always worried I didn’t get it in the right spot or the full injection and miss some of my medication. For me, it’s a piece of mind that my infusion is done properly.”
IBD Moms Experience
Miranda was diagnosed with Crohn’s during the height of the pandemic. When she started Entyvio it was in an infusion center, and she felt like she was putting herself and her family at risk each time she went in. By receiving infusions at home, you can potentially be exposed to fewer hospital-acquired infections. This is especially important for individuals with compromised immune systems, as it helps minimize the risk of additional health complications.
“I saw a few ladies (connections on Instagram) who were receiving home infusions, so I asked my doctor about it. He said it would be no problem to connect me with a company in Dallas that handles nursing and medications for in-home infusions. My only obstacle was seeing if my insurance company would approve home nursing. After calling them to go over benefits, my insurance informed me I could receive in-home nursing. I did have to escalate the call to get it pushed through. At the end of the day home infusions were approved. The same company that ships my meds provides nursing. I do have to make a phone call every January to make sure coverage is good, but other than that it’s a flawless process. The nurse and I are close friends.”
Christina: “I specifically told my GI I don’t want to get infusions at home because I like my “me” time in the infusion clinic. Two hours to read my Kindle in peace! I also decline the accelerated rate…perspective changes when you have kids. My nurse jokes they’re my spa days!”
Krista: “I moved to home infusions once I had my daughter. It was more convenient because I didn’t have to find someone to watch my daughter (I had nobody to help or to ask) so that I could attend my infusions. I had a pleasant experience, and the nurse was fantastic. Being able to do infusions in the comfort of my home was fantastic, especially needing an infusion only 2 weeks postpartum, while recovering from a c-section.”
Getting adjusted to receiving medication without support from fellow patients in the room
Kristi has been receiving Remicade at home monthly since January. Her GI office stopped doing infusions at their office due to staffing issues. After a time or two at the hospital-run infusion center, her insurance company called her to see if she’d be interested in home infusions. Since she had been driving an hour each way for years, she jumped at the chance!
“The idea of not having to worry about getting my infusion during a winter storm was enough for me. My doctor’s office was hesitant at first. I was always on board with the idea, and I was shocked to see the cost was similar to my doctor’s office but significantly less than an infusion center. Home infusions have allowed me more flexibility in scheduling. I also feel like my resting period post-infusion is much easier since I’m already home. While I love home infusions, there are some downsides. I don’t think I would have wanted this back years ago when I started infusions. There’s a lot to be said about the community and the support I received just by being in an infusion room with similar patients. It was also nice to be in my doctor’s office monthly, where I could easily report any symptoms, I was having health wise. I am the person that needs to have my house looking perfect before company comes over, so that adds an extra level of stress during an infusion week. It’s also a bit odd to have the nurse here for so many hours. However, I’ve had two nurses so far and they’ve always been very good and very respectful in my home and if I wanted quiet time. Overall, I don’t think I could go back to going somewhere.”
Kristi says now that she doesn’t have the infusion room support, she relies even more on the social media community and the IBD family online. She also loves getting to snuggle with her dog and use him as a heating blanket while she receives her infusion.
Final Thoughts
Balancing the risks vs. benefits. As you’ve read, home infusions are not a one-size-fits-all approach. What works for one person, doesn’t for another. While the benefit of being at home is a big one, having to worry about the sole nurse at your house finding a vein and not knowing if you’re going to have a bad reaction are just some of the cons that can make the experience worrisome for people.
The convenience of home. Home infusions offer the convenience of receiving treatment in the comfort of your own home. This eliminates the need to travel to a medical facility and allows you to maintain your daily routine more easily. For IBD parents and caregivers it alleviates the need of finding childcare. By fitting infusions into your daily life, it helps to reduce the disruption that may come with hospital or infusion center visits. So many of us deal with medical PTSD and having the comfort and familiarity of home can help to ease that burden a bit.
Kat: “I received home infusions for years for UC. My doctor’s office got them set up because I live in a rural area. The pros were the convenience and being in the comfort of my home. The cons were having a stranger in my home for over an hour. Dealing with the company’s billing department was also horrendous.”
A more personalized treatment experience. You can have a dedicated healthcare professional who gets to know you and your specific needs, creating a customized care plan to address your individual symptoms and concerns. Many IBD people I speak with have a close bond with the nurse who visits their home and feel supported during the process.
Jill started on Humira and was later switched to Remicade infusions. She started receiving infusions at the hospital and then her GI recommended she try home infusions to limit exposure to germs.
“My GI’s office took care of the paperwork and I had the choice between two home health companies. This has been a game changer for any guilt I felt around missing work, because the nurse comes to my home and I can continue working on my laptop, if needed. Or I schedule infusions to begin at the end of my work day. I have a great relationship with my home health nurse and she knows me and my veins so well now. I value the relationship and level of care as well as the flexibility I have found with this option. It’s a win for my mental health as well.
Matt received home infusions for seven years. If he could pass along any advice, he says to be even more proactive about your health.
“I had to always coordinate shipments, supplies, and the infusion schedule. The pros are the flexibility and comfort, but the cons are not being at an infusion center where you can unplug and be in your own thoughts.
It’s important to discuss the option of home infusions with your healthcare team to determine if it’s a suitable choice for you. Your care team can address any concerns or questions you may have, educate you on the process, and help you make an informed decision. Remember, you have options and support to manage your IBD effectively, even when it comes to receiving necessary infusions.
Lights, Camera, Crohn’s: An Unobstructed View is officially SEVEN years old! If you told me when I started blogging what a labor of love this website would become for me, I never would have been able to imagine what it would become for my life, for the IBD community, and for patient advocacy efforts. I went into blogging blindly. I had no clue how to format the site, but I knew the types of stories I wanted to share and the messages from patients that I wanted to get across.
As a seasoned journalist who spent nearly a decade as a TV news anchor, reporter, and producer, I’ve used my love for storytelling to try my best to be the voice I so desperately needed to hear upon diagnosis, through my professional life, finding love, family planning, pregnancy, motherhood and beyond. It’s been quite the ride these last seven years. My first article went live July 23, 2016, on the 11th anniversary of my Crohn’s disease diagnosis. I found out I was pregnant with my now six-year-old, two days later. The first six years of Lights, Camera, Crohn’s (and 3 kids later), I shared a new article every single Monday.
Through these seven years, Lights, Camera, Crohn’s has been viewed half a MILLION times, by more than 320,000 people around the world. On this site alone, I’ve shared 368 articles, which does not account for the countless other IBD articles I’ve created for other websites. As I reflect on this milestone, I’m proud of what I’ve accomplished thus far, but know there’s much more work to be done.
This week I want to give you a behind-the-scenes look at how my storytelling process comes to life—I often get asked “how do you become a patient advocate?” and “how do you start blogging?” I hope this advice inspires you to take the plunge, as there are endless seats at the proverbial advocacy table and your voice, your story, your valid experiences, deserve to be heard.
Choosing What’s Newsworthy
It can be overwhelming trying to come up with content that is new and fresh for your blog and social media. I’ve found it extremely beneficial to have an editorial calendar that helps guide the stories that I share. My editorial calendar is in my email in the draft folder. I simply list out the dates (articles have always been shared on Mondays on Lights, Camera, Crohn’s…so I list out all the Mondays for the next 3-4 months). This serves as a reminder of my game plan and when I need to do outreach for the stories.
As a journalist you’re taught and it’s almost innate in some ways to always be on the lookout for a story. I’m always keeping my eye out for tweets and posts on Instagram, conversations in real life, experiences that happen to me when I see my GI or get a scope, that I think will resonate with our community. I think about the pain points I’ve felt along the way and the advice I wish I had when I was struggling in certain moments. I think about the questions I’ve had along the way when Google was scaring the bejesus out of me, and I just wanted real life advice from someone who understood my reality. Think about what uncertainty, questions, concerns you’ve had and what you want to learn more about and then go after the story.
Writing for the Reader
Everyone has a unique writing style, but one of the most common “mistakes” I tend to see with blogging is when writers go on and on and on about their own experience. The articles sound more like a diary entry—and if that’s what you’re going for, great—but usually, you’re wanting to draw readers in. To do this, I use my own experience as a foundation—a sentence or two in the intro and then the rest of the article is written to and for the reader. Try to write your blog articles like a news story. Use sub heads, get reliable sources, attribute studies, share credible information. Give readers in the chronic illness community news they can use. Empower others on their patient journeys so they learn something by checking out your content. Let others see that they are not alone in what they are going through and that you get where they are coming from. By including the expertise of medical professionals, it helps your articles really come to life and allows you to build a rapport and a reputation with the GI community. It’s always incredible to hear when a GI shares Lights, Camera, Crohn’s with their patients.
If you’re unsure how to reach a GI who is not your doctor, I advise going on Twitter and sending doctors a DM asking if they’d be interested in providing input for an article you’re working on. 9 out of 10 times you’ll get a yes. As we all know, doctors are busy, so try and give them a longer lead time to respond to interview questions. I like to include a headshot when I quote a doctor, so I have them send you one.
My Patient Experience articles have become one of my favorite parts of Lights, Camera, Crohn’s—these articles are a major labor of love. I interview 10-20 patients, along with physicians, and spend upwards of 20+ hours out of the goodness of my heart to create a resource that a patient and caregiver can have at their fingertips when they’re trying to make major decisions about how they choose to manage their disease. Topics range from biologics to infertility or life with an ostomy. Rinvoq is coming up next, folks…I just need a breather since I finished writing Skyrizi earlier this month. By crowdsourcing and sharing the good, the bad, and the ugly I’ve been able to provide a complete look at the reality patients face and provide background that shows more than just my experience.
The Art of Interviewing
Whether you’re interviewing a fellow patient or a healthcare professional, the same process goes a long way. Try thinking about the main points of the article and the flow before you write the questions. You almost must think backwards. I do all my interviews over email—for multiple reasons. The number one reason, is that as a mom of a 6-year-old, 4-year-old, and 2-year-old, I don’t get many breaks and trying to conduct an interview over the phone or Zoom and capturing the true essence of what someone is saying is nearly impossible. I also prefer email because it gives people a chance to articulate their responses and enables me to accurately share their quote—word for word, without paraphrasing. I rarely give interviews over the phone, as I like fellow writers/editors/journalists to have what I’m saying verbatim.
When I send the interview email for Lights, Camera, Crohn’s, I provide a deadline in bold and then list the questions. I always ask for a high-level explanation of a person’s patient journey so I have an understanding of what they’ve been through and so I can paint a clear picture for the reader. Try to never ask “yes” or “no” questions—you want people to give good explanations and descriptions.
An example of email outreach to a pediatric gastroenterologist for an article I worked on.
Often the most important question you can ask if “Anything you’d like to add?”—in TV, podcasts, you name it, this is when people let loose a little bit and can provide you with key nuggets of information.
Once I receive the interview responses, I open up Word, and take all the content and start compiling what’s going to be a quote and what’s going to be a part of my wording/storytelling. Then, much like journalists do in TV news, I write the story around the quotes.
Have a Copy Editor (aka family member/friend review your content)
It’s always helpful to have an extra set of eyes on your articles before you share them. Since the day I launched Lights, Camera, Crohn’s, my mom has been my “copy editor.” I email her a draft of the article along with an explanation of what I’m hoping to get across and then she goes through each article with a fine-tooth comb and provides edits and feedback. If I get too fired up about something, she may politely advise I take a certain line of the story out or re-think how I word a sentence. She’s been my voice of reason through this entire process and as my mom, she’s my biggest cheerleader in not just life with Crohn’s, but everything. As a nurse of more than 40+ years, she’s also well versed in medical situations, as well as grammar.
Be Vulnerable and Transparent
Despite how many people advocate for IBD, Crohn’s and ulcerative colitis still have stigmas. It can be daunting to put your words down on paper and share them with the world. I spent the first decade of my disease just telling close family members and friends. What I’ve found since blogging and being a vocal patient advocate, is that by being open, you open yourself up to endless support and camaraderie. There is such strength that comes from saying you’re not ok or need help. Tell it like it is and don’t sugarcoat your story. At the time same, one of the main pillars of my advocacy has to always been to be transparent, while also positive.
Back in the day when I was diagnosed, and those first 10 years when I was living in silence, most of the content I read was pretty doomsday. While I understand and empathize with the pain and horror Crohn’s can cause in one’s life, I’ve tried to never sit in that sadness for long. If anything, IBD has given me perspective and clarity about the fact that IBD doesn’t have to destroy your life or who you are. Yes, it can create major complications, unpredictable setbacks, and hurdles, but those detours don’t have to rob you of what you hope to accomplish or become. While it’s important to be real, I find it just as important to provide hope and inspiration for those who wonder what their futures may hold.
Keep on Swimming
Due to social media algorithms and the lack of engagement many of us see online, it can feel disappointing at times when you put all this effort into an article or a blog and feel like you’re talking or reaching no one. I’ve been there countless times. Don’t let the “likes” or the follows deter you. Know that your words and your stories just need to get into the hands of one person who needs them, and that makes all the effort, time, and energy worth it. Your articles have legs—meaning that once you post them, continue to post, and share for months and years to come because these “evergreen” articles are always timely and necessary. Try to collaborate with others when you can. If news outlets reach out for a quote or if a health website asks for your input, give it—and then ask for your blog to be a part of how you’re attributed in the quote. If you see someone’s Instagram story referring to an article topic you’ve covered, grab the link and send it their way over DM.
If you feel like you’re in a rut or if you’re having a tough time creating content—don’t force it. Ask your followers what topics they’d like you to cover. Use the timing of the year to help come up with stories (for example, navigating diet around the holidays or back to school time and being an IBD teacher). Support the content of fellow advocates—comment and share articles that intrigue you and help others get their words out and the same will be done for you. Rather than seeing advocacy as a competition, view others as your ally—we’re all doing this to help others, spread awareness, drive research, and together we can truly amplify the patient voice—one article at a time.
There’s no telling what Lights, Camera, Crohn’s will look like seven years from now, but I don’t plan to stop storytelling anytime soon. Thanks for all your kind words, for telling me when my stories have touched your life or helped you make a tough decision, and for being there for me when I need support. If you’d ever like to collaborate with me to share your story or if you have a topic you’d like me to write about—please don’t hesitate to reach out.
Here’s to another seven years of breaking stigmas, spreading awareness, and making everyone in the IBD community feel seen.
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