For those living with Inflammatory Bowel Disease (IBD), the pursuit of better health often extends beyond medications and doctor visits. As someone who has lived with Crohn’s for more than 19 years, I’m aware that lifestyle plays a significant role in how we manage our disease. That being said—many people are drawn to popular health trends that promise improved digestion, immune support, and overall wellness. Everywhere we look we see posts on social media promising the next best thing for us. However, some of these trends, though appealing, may pose risks for those with sensitive digestive systems and compromised immune systems. This week on Lights, Camera, Crohn’s, we look at why it’s important to be wary of popular remedies and hear advice from Dr. Neilanjan Nandi, MD, FACG, AGAF, FACP, a well-respected gastroenterologist from Penn Medicine who specializes in Crohn’s disease and ulcerative colitis.
Holistic practices in the IBD community and beyond
There’s a lot of talk about holistic practices in the IBD community (Raw Milk, Amra/Bovine Colostrum, Digestive Enzymes, Athletic Greens, Homemade Kombucha)–the list goes on… while people may have “success” stories or swear by the benefits, it’s important to talk with your healthcare provider first.
“For patients on immunosuppressants, I would caution against consuming raw milk due to the concern for lack of pasteurization. There are often significant heavy bacterial loads and infectious organisms that may behave poorly in a patient’s digestive system and cause infections and subsequent flares too. Fermented products are certainly not contraindicated but I would caution patients in overdoing ‘too much’ and taking many different types of fermented products as it may cause excess gas,” says Dr. Nandi.
DeBalko Photo
He recommends people with IBD stick with one option and it if provides benefit then you can consider continuing.
“However, if a person sees no benefit after 6 weeks, then stop or change. Supplements like Athletic Greens may help patients get in more nutrients and fiber than they otherwise would, but this might also reflect that a patient is not getting enough nutritional balance, so they are favoring this product to achieve that need. Instead, I would rather encourage patients to work with a dietitian who can provide them with more insight and a balanced nutrition plan where they can get their vitamins and minerals in a whole food package rather than a processed formula. Also, there is no data to support that the product provides benefit in IBD and may be a costly option too,” he says.
Why the IBD community needs to be a bit more skeptical
Many supplements lack benefit and/or evidence to provide healing or relief. Many may be minimal risk and possible benefit but this risk to benefit ratio is quite low for the majority of such supplements.
“The greatest risk to the IBD patient is more financial as they are often costly and IBD patients generally have more than enough bills to manage. The other reason for concern is that some supplements may have a small risk for hepatotoxicity or other rare adverse events that may not be predictable. While herbal teas and plant-based products may appear safe, I always recommend informing your personal physician if starting a supplement and they can decide if a conservative approach to monitoring may be more appropriate,” explains Dr. Nandi.
A closer look at the “trends”
Raw Milk—While this is nutrient rich it doesn’t come without its risks. Unpasteurized milk has natural nutrients, probiotics, and enzymes that are believed to aid digestion and immunity. However, the lack of pasteurization also means that harmful bacteria like E. coli, Salmonella, and Listeria can be present, posing significant risks. For those with IBD, it’s common for us to have an immune system that is already compromised or a gut lining that is inflamed or damaged. This puts us at greater risk for bacterial infections. An infection from contaminated raw milk can lead to severe gastrointestinal symptoms, including diarrhea, cramping, and even serious complications that can exacerbate IBD flare-ups. While raw milk may seem appealing for its benefits, its risks far outweigh potential gains for those with IBD. Pasteurized milk or dairy alternatives are much safer options.
Bovine Colostrum—This is the first milk produced by cows after giving birth, it’s rich in antibodies, growth factors, and immune-boosting nutrients. It’s marketed as a supplement that can heal the gut, reduce inflammation, and improve immunity. Some studies suggest that colostrum may benefit those with gastrointestinal issues by promoting gut repair and reducing intestinal permeability. However, research on its effectiveness for IBD is limited, and not all individuals with Crohn’s or ulcerative colitis may respond well. There’s also the potential for allergic reactions, especially for those who are sensitive to dairy. Additionally, its effects on a highly inflamed or damaged gut are not well understood. While bovine colostrum shows potential for gut health, more research is needed to confirm its safety and efficacy in people with IBD. Always consult with a healthcare provider before adding it to your routine.
Digestive Enzymes—These are often recommended to support digestion, especially for those with conditions that impair enzyme production. They can help break down food, alleviate bloating, and promote nutrient absorption. For some people with IBD, especially those with enzyme deficiencies or malabsorption issues, these supplements may provide relief. However, not all enzyme formulations are created equal, and taking the wrong type or dose can lead to side effects like diarrhea, cramping, or worsen digestive symptoms. In addition, over-reliance on these supplements can mask underlying issues that need medical treatment. Digestive enzymes may offer benefits for those with IBD, but they should be used under the guidance of a healthcare professional to ensure they are appropriate for your specific needs.
Athletic Greens—This is a popular green superfood supplement packed with vitamins, minerals, probiotics, and other nutrients. It’s marketed to boost energy, support digestion, and fill nutrient gaps. While this may seem like a convenient way to enhance your diet, those with IBD should be cautious. First, the high fiber content and presence of various herbal extracts may not agree with everyone. Some ingredients could irritate the gut or trigger symptoms in sensitive individuals. Additionally, people with IBD often have individualized nutrient needs, and a one-size-fits-all supplement may not address these properly. For example, certain vitamins and minerals may be needed in specific dosages, which Athletic Greens may not provide. While Athletic Greens can seem like an easy nutritional boost, people with IBD should be cautious due to its fiber and herbal content, and instead, focus on personalized nutrition guided by a healthcare provider.
Homemade Kombucha—This is a fermented tea that’s often praised for its probiotic components, which are beneficial to support gut health. Many people with digestive issues turn to kombucha for its potential to improve digestion and balance gut bacteria. However, homemade kombucha can be unpredictable, with variable levels of fermentation and alcohol content. For those with IBD, who often have a more sensitive gut environment, kombucha’s acidity and potential for bacterial overgrowth or contamination can worsen symptoms like bloating, diarrhea, and cramping. There is also a risk of introducing harmful pathogens during the fermentation process if not done carefully. Store-bought kombucha from a reliable source is a safer option, but even then, it should be consumed in moderation by those with IBD.
Not all health influencers are created alike
When you feel desperate to try something that could improve your quality of life, you may be willing to do whatever it takes to feel better. But please remember that not all health influencers and people on social media are created alike and many have an agenda or profit motive.
“I have often found that the most ‘popular’ products are being promoted by influencers who participate in affiliate marketing and receive a financial incentive if their followers purchase with their referral code. One should always be weary of this and question the intent behind this approach. When in doubt, ask your doctor about the product and always do your own research, if possible,” Dr. Nandi advises.
What to know before you try
Gastroenterologists are trained to look for medication interactions and understand how to conduct literature searches in publication databases that are not always accessible to the public.
“Physicians are more up to date than most online influencers and can at least provide clinical support should a complication occur because of the supplement. The widespread use of electronic medical records for patients to converse with their medical team through secure messaging also provides patients an opportunity to ‘cut and paste’ weblinks to potential therapies and/or supplements to their physicians. This way the clinician can review the same page and provide a prompt medical opinion,” he says.
A look at the future
Dr. Nandi says some exciting supplements are on the market now. One in particular is called Qing Dai, which may be helpful in ulcerative colitis shown in small placebo-controlled studies. The pharmaceutical industry is elucidating this pathway, too.
“More data is required to study the effect in large scale trials. Even this exciting supplement may benefit from laboratory and clinical supervision to ensure patient safety,” says Dr. Nandi.
With the growing popularity of wellness trends, it’s easy to be tempted by promises of better health and healing. However, for those with IBD, not all health trends are created equal, and some may pose significant risks to gut health. It’s always crucial to approach new supplements or diets with caution, especially when you’re managing a complex condition like IBD.
I personally get approached all the time to try a new or different supplement and I’m always hesitant to rock the boat or put something into my body that I don’t know much about. Just as we are forced to advocate for ourselves in the healthcare system, we also need to be cognizant that unfortunately not everyone has our best interest in mind when it comes to making a profit from our pain. Just like diet and medication—there is not a one size fits all approach to wrangle IBD. Just because your healthy friend who added raw milk into her diet swears by the benefits, doesn’t mean it’s right for you. People may genuinely be trying to help you but stay informed and be cautious. This especially goes for newly diagnosed patients and caregivers who may be grabbing at straws trying to improve the reality of life with IBD.
Before trying any new health trend, it’s important to consult with your healthcare team, including your gastroenterologist and IBD nutritionist, to ensure the approach is safe and appropriate for your specific health needs. What works for the general population may not necessarily be beneficial—or even safe—for those living with IBD.
If it’s happened to you, you know the feeling all too well. When I received a letter in the mail informing me that the biologic injection, I had been on for 16 years was no longer going to be covered, my stomach flipped, and my heart sank. When you live with a complicated disease like Crohn’s or ulcerative colitis and find a therapy that keeps your health in check and your IBD well-controlled, it’s extremely stressful and daunting to face the worry of being forced to switch your medication to a biosimilar or a different biologic all together.
Like many patients, I asked my gastroenterologist to appeal the forced medication switch. Even though I was almost positive we would be denied, I did not want to go down without a fight. As expected, within days of my GI’s appeal, we were told by insurance that Humira would no longer be covered and that I would need to choose a biosimilar or a different drug class all together moving forward.
I chose to go on the biosimilar Hyrimoz for many reasons—the first being that anti-TNF drugs have worked well for me for YEARS, by choosing to go off it and switch to a different drug class, I ran the risk of building up antibodies and possibly not responding as well to treatment. I also have a comfort level with self-injections and know how I have typically responded to anti-TNF medication in the past.
The emotions and heartache of having to say goodbye to a medication that carried me through for 16 years, allowed me to bring three healthy babies into this world, and stay out of the emergency room and hospital since becoming a mom 7.5 years ago tore me apart. I sobbed. I stressed. I was anxious.
Switching to a biosimilar—the emotional and physical toll
Much to my dismay, I started Hyrimoz in July 2024. The first eight days I felt the same and then my health began to crumble. I lasted four injections—and during that time I went from being in deep remission for years to needing pain medication to make it through elementary school PTO meetings and while coaching my kindergarten soccer team. I went from feeling well most of the time to running to the bathroom 15+ times a day and almost having accidents in public. I went from being able to eat whatever I wanted to worrying about how consuming anything was going to make me feel. I spent nights curled up in pain and days feeling bloated and on edge about whether every decision I made was going to make me unwell.
I knew something had to change. I refused to have my quality of life ripped from me without speaking up. I kept a detailed journal every single day since I started the biosimilar. I articulated my concerns to my care team repeatedly over the Patient Portal. We ran extra labs, I did a telehealth appointment, I spoke with GIs around the United States I have come to know and trust through my patient advocacy work. My care team told me that meeting in person for a clinic appointment or over telehealth would help build our case, as that carries more weight than just communicating over the Portal. Keep that in mind.
This week on Lights, Camera, Crohn’s I offer tips for building your case, writing your appeal letter, and making sure your voice is heard. Patients are constantly made to feel less than. It’s all about the profits and not about the patients. This needs to stop. Insurance companies and specialty pharmacies need to stop making our lives so damn difficult and start to recognize the havoc they cause by delaying treatment, blocking treatment options, and forcing us to change a medication that finally controls our disease. Living and managing chronic illness is a full-time job in this country. The hours and days wasted and spent on the phone dealing with all the red tape is an absolute nightmare, and unless you’ve experienced it, you have no clue the headaches it causes, the time suck it is, and how it puts the quality of our lives in jeopardy.
Keeping track of it all
When living with IBD, the bad days come and go and oftentimes we forget just how often or how horribly we feel because our “normal” is not normal. By journaling or writing in the Notes app on your phone anytime anything with your health is awry, this helps paint a clear picture for not only you, but your providers. If you can say, “On Tuesday, September 24th I went to the bathroom 10 times, I couldn’t eat, I had joint pain in my hands, and abdominal pain that required a heating pad”—this illustrates the complexity of your symptoms. Imagine having that type of intel for two months. These details help your appeal in a big way. My IBD Nurse told me that she believes my typed-out symptom journal made all the difference in winning our second appeal.
So, take notes and be as descriptive as possible. If you have a random headache and you’re not sure why, write it down. If you get new pain, you haven’t experienced before keep track of it. If you eat and must run right to the bathroom or start feeling pain jot it down.
Many of my symptoms I’ve dealt with since switching to the biosimilar feel exactly like a Crohn’s flare. After weeks of this, I started to freak out that I was losing my remission all because of a forced medication switch. A world-renowned GI took the time to call me as I was making dinner for my family one night to hear more about my situation. He did this out of the goodness of his heart to provide additional guidance and support. After hearing more about my situation, he believed it was my body having adverse side effects to the biosimilar rather than a Crohn’s flare, since my labs were checking out fine. Everything started to make sense. While he wasn’t sure our appeal would be granted, he listened and empathized with what I was going through.
Writing your own appeal letter
My IBD team recommended I also write a patient letter that they would include with their second appeal. I was happy to take the time to offer my voice and share what the experience of being on a biosimilar was like for me. At the same time, I had never written an appeal letter. Before I started I did my research on how to approach and craft the wording.
I made sure not to come off angry or accusatory. I kept the letter as professional as possible, while also explaining very clearly how horribly I was responding to the medication. I backed up my letter with science and attributed research that’s been done regarding biosimilars. I learned from research published in the Journal of Crohn’s and Colitis (2020) that while around 80% of patients have a seamless transition, 10-20% have a negative response. It’s important to note that just because you are switched to a biosimilar, does not mean your health will deteriorate. Many people thrive and don’t notice a difference, but the issue is—you don’t know how you are going to respond. I went into the transition with an open mind and as positive as possible, but the unknown looms over and it’s emotionally draining to constantly wonder if you are going to feel unwell because of the forced switch.
Tips for expressing yourself in the appeal letter
I will use Humira as an example since that was my experience, but this goes for any biologic/medication.
Start with basic information—your name, date of birth, insurance ID number, and the policy number.
Provide the name of the medication you’ve been switched from (in my case Humira) and the one you’ve been switched to (Hyrimoz).
Mention the date when the change was made.
Clearly state the purpose of the letter. For example, “”I am writing to formally appeal the decision to switch my Crohn’s treatment from Humira to Hyrimoz.”
Briefly provide an overview of your health history with IBD, diagnosis date, and the treatments you’ve tried, hospitalizations/surgeries. If you’ve been on the same treatment for years and it’s helped you, highlight how effective the therapy has been. Mention the stability you’ve achieved with Humira—humanize your story. For instance, “While on Humira I was able to work full-time, have three healthy pregnancies and babies, and be a mom without my health holding me back.”
Reference any previous experiences with other medications that may have failed you or caused side effects.
Emphasize the risk of switching medications after long-term success. For IBD patients, changing medications can result in loss of response, worsening of symptoms or disease progression, potential adverse reactions.
Have your gastroenterologist provide their own letter that emphasizes the risks of switching, the stability you’ve achieved, and their professional recommendation. They will reference any studies that are available and be able to provide medical records showing your history on the medication.
If applicable, reference and cite insurance company policies that include provisions for medical necessity, or any pre-authorization that was previously approved.
Emphasize the impact on your health and finances and highlight the potential cost to both your health and your insurance provider if switching leads to disease flare ups, complications, hospitalizations, or the need for additional screenings, scopes, or treatments.
Close with a strong, respectful request. End the letter with a clear statement, such as:
“For the reasons stated above, I respectfully request that you reconsider your decision and allow me to remain on Humira as prescribed by my doctor.”
I signed my letter:
My family deserves more and so do I.
Sincerely,
Natalie Hayden
Ironically, when I wrote my appeal letter I was dealing with horrible abdominal pain, lying in bed with a heating pad.
Finding out we won the appeal
Once my appeal letter and journal of symptoms were finalized, I sent them to my GI and IBD nurse over the Patient Portal. I was on pins and needles wondering what was going to come next. I sent over the materials on a Friday morning and the following Monday, I received word from my nurse over the Portal that the insurance denied the 2nd appeal because back in June when my GI submitted the first appeal, he deemed it “urgent”—in doing so, the insurance company considers those appeals “2nd level appeals”—if those are denied, they consider the case closed. Imagine that— “closing a case” before a patient has even started a different medication. Makes sense…right?! Can’t make this stuff up. When I heard this, I felt incredibly defeated.
My care team was unaware of that and asked for a clinician to review our materials—the insurance company agreed and said there would be a decision in 72 hours. That same night, while I was making dinner for my family, I received an email from CVS Specialty pharmacy saying my prior authorization for Humira had been approved. I couldn’t believe my eyes. I’ll never forget how it felt to see those words and read that email.
My kids all smiled and laughed and danced with me, no idea what was really going on. But the celebratory moment was so incredibly jubilant they were smiling ear to ear. These last two months they’ve witnessed me unwell way too many times. It’s a side of my Crohn’s I’m not sure they even knew existed prior to now.
This past Friday night the same abdominal pain I’ve been dealing with began as the kids got off the bus. I had to take a pain pill before an advocacy call that was ironically about How to Deal with Insurance—for an upcoming panel discussion at a medical conference I’m speaking at in December. After my call and rushing through a makeshift meal, I took all three of my kids to my son’s soccer practice and told my friends on the sidelines how sick I felt. I came home and had to take another pain pill, had difficulty with the bedtime routine, and laid on the couch with a heating pad. But it helped to know these shitty days will hopefully be ending.
Looking to the future
This blog article is coming out the same day as I go back on Humira after winning my insurance appeal. While it’s a big win for me, it’s a small win for our community because at the end of the day an incomprehensible number of people are forced off their medications or denied off-label dosing, all so insurance companies see a better bottom line. As patients we can’t stand for this. Medical providers should and need to have the FINAL say in what medications their patients are on and they should always be willing to go to bat for their patients and appeal even if they “know they’ll get denied.” I hear all too often from fellow patients that their GI won’t even appeal in the first place and does not empathize with the fear of being forced on a biosimilar.
For those providers, I ask…can you guarantee, 100%, no doubts whatsoever that your patient will thrive and do just as well on a biosimilar as they did their originator biologic? Does the benefit really outweigh the risk? Should IBD patients who already live with an unpredictable and complicated chronic illness have to endure the stress, medical trauma, and anxiety that result from forced medication switches or denials related to off-label dosing?
As patients, caregivers, and medical providers we are a team. We know what’s right. Doctors and nurses should not have to waste so much energy on fighting for off-label dosing, necessary treatments, and keeping their patients on medications that are working. A HUGE thank you to all the providers and nurses who go above and beyond and out of their way to fight for us and do everything in their power to make sure we receive the medical treatments we need to keep our IBD in check. Your efforts, whether successful or not, are not going unnoticed.
At the end of the day, the big argument is all about “accessibility” and “cost savings” in the United States, but are patients really reaping this benefit here? I paid at most 0-$5 for Humira injections, I paid $0 for Hyrimoz. Do you know how I paid? I paid with living more than two months with health issues that would bring the average person to their knees. I went from being in deep remission to re-living the trauma of how unpredictable life with IBD can be. I paid by being on a biosimilar for 71 days and spending more than half of them with debilitating pain and symptoms.
Big pharma can step up to the plate and lower their absurd pricing on biologics (originator drugs) so that biosimilars are of no monetary benefit to pharmacy benefit managers. Let’s make it an equal playing field and see what happens. Would Big Pharma rather lose all their patients because their biologic is being removed from the insurance formulary or keep patients, lower their costs of the drugs, and keep insurance companies from choosing biosimilars because it saves them money?
As a vocal IBD patient advocate and leader, I understand and feel for those who haven’t been able to go back on therapies or receive different dosage recommendations they depend on for their well-being. While I’m thrilled to be back on my biologic, now I have the worry about whether my body will respond the same as it did previously.
The medication I’ve depended on for 16 years to bring me comfort is finally back in my fridge and going to be back in my body today. The prior authorization lasts one year, so I’m not sure what the future will bring, but I’m focused on getting my health back on track right now and worrying about that later. I’m grateful my energy in dealing with my own appeal is over and now I can pour my efforts into trying to drive change for our community. We all deserve so much more. Let’s go after what is right and make forced medication switching and off-label dosing delays and denials by insurance companies illegal in the United States.
Imagine in a quick twist of events you go from having a wonderful day to dealing with IBD symptoms. Suddenly you go from feeling “fine” to having pain that’s gotten your attention quickly. You’re bloated and could pass for being 5 months pregnant, nothing sounds appetizing, you’re scared eating or drinking will further exacerbate your symptoms. The mere thought of ingesting anything makes you a bit nauseous. All your attention and focus is on tolerating the pain. Now pause.
It’s no surprise these symptoms significantly impact food choices and nutrient intake, as we’re forced to navigate the delicate balance between managing discomfort and maintaining proper nutrition. Understanding how GI symptoms influence dietary decisions and implementing strategies for managing these symptoms is crucial for IBD patients to ensure overall well-being.
Even as a veteran Crohn’s patient of nearly 20 years, I’ve been struggling to manage my diet while living with unpredictable painful symptoms that started to arise when I was put on a biosimilar medication in July 2024. I’ll be honest, lately when I’ve been dealing with abdominal pain and bloating, I’ve been refraining from eating. Turns out—surprise, surprise… that’s the last thing any of us should be doing. This week on Lights, Camera, Crohn’s hear from trusted registered IBD dietitian and ulcerative colitis patient extraordinaire, Stacey Collins, about how we can better navigate these challenges.
How have GI symptoms influenced your food choices?
If you’re in an active disease flare and dealing with an inflammatory response, you need protein and calories to overcome any risks for malnutrition. So how can we go about getting enough calories?
“Liquid calories aren’t always the tastiest—but smoothies and even nutrition shakes can be beneficial for those dealing with IBD symptoms and teetering on the line of a full-on flare. When you’re feeling well, try to designate part of one day a week where you make soups and smoothies ahead of time that you can freeze as a rainy-day investment to help you out on days when you aren’t able to expend the energy to prepare food,” says Stacey.
She also suggests “taking a holiday” from gut-health supplements you take—it’s not all or nothing. Take a break from your probiotic, prebiotic, anything that “helps with inflammation,” and enzymes (unless prescribed by your physician explicitly), and let your body relax from the burden of taking too many supplements.
Rather than avoiding eating altogether, which feels like the right thing to do when you’re in discomfort, try to maintain a consistent routine of eating to nourish your body to heal from a flare and avoid excess discomfort.
Our hypersensitive guts
When you live with IBD and you have a history of inflammation, visceral hypersensitivity, or an increased pain perception in the bowel, is a key factor to take into consideration.
“Acknowledge that a smoke alarm is going off, and then try deep belly breathing if that’s an accessible movement for you. I often tell people to lay down on the floor. If you have children, invite them to join! They can lay down beside you and do this exercise with you. Together, you can select a favorite toy or teddy bear: one for you and one for themselves. Put the bear on your belly and BREATHE! You should see the teddy bear move with your inhale as you breathe deep into your belly–see who can make the teddy bear go the highest. This can help you to return to your breath and welcome a sense of calm into your body. If this isn’t a great option for you, pausing to notice the exhale portion of your breath, intentionally making it a bit longer than the inhale, can be impactful in helping to calm the nervous system,” explains Stacey. “Clinically everything may be checking out okay with lab work, scans, and scopes, but it’s important to recognize if you’re dealing with pain, not everything is right. It can feel disorienting to not have that pain validated by labs and tests, which is why cultivating tools like these can be helpful to ride the waves of the pain while feeling just a little bit better in your body.”
When I decided to have soup last week after not eating all day, I was really taken aback by my abnormally loud bowel sounds while I was digesting. Stacey reminded me that when you go a long time without eating and then choose to eat something, that your gut will be working extra hard. This can lead to loud bowel sounds or Borborygmi. Anyone, including people with IBD, can experience hyperactive bowel sounds. When I heard my abnormally loud bowel noises the other day, it brought me back to past bowel obstructions where I would eat and people could hear my stomach making sounds in the other room.
What’s the deal with bloating?
Bloating in Crohn’s disease or ulcerative colitis is often caused by a combination of factors related to the underlying inflammation and the altered digestive processes associated with the disease. Some key factors include:
Inflammation of the Gut: The intestinal lining disrupts normal digestion and absorption of food. When the gut is inflamed, depending on location and severity, it can lead to malabsorption, causing undigested food particles to remain in the intestines longer, which can increase gas production and bloating.
Altered Gut Motility: Inflammation can impair the muscles in the intestinal walls that are responsible for moving food through the digestive tract. Slowed or irregular gut motility leads to delayed digestion and fermentation of food by gut bacteria, which can result in gas buildup and bloating.
Imbalance of Gut Bacteria (Dysbiosis): People with IBD often have an imbalance in their gut microbiome (dysbiosis), meaning there are fewer beneficial bacteria and more harmful bacteria. This imbalance can lead to increased fermentation of carbohydrates in the colon, producing excess gas, which contributes to bloating. Not getting enough nutrition can make dysbiosis worse.
Intestinal Gas Accumulation and Stool Burden: Inflammation in IBD can slow down the passage of gas through the intestines. This causes gas to accumulate in the gut, leading to bloating and discomfort.
Small Intestinal Bacterial Overgrowth (SIBO): SIBO, a condition where excessive bacteria grow in the small intestine, is more common in IBD patients who are not in clinical remission. This bacterial overgrowth can cause excessive fermentation of food, leading to bloating, gas, and diarrhea.
Dietary Factors: Certain foods, such as those high types of carbohydrates called Fermentable Oligo-Di-Monosaccharides and Polyols (FODMAPs), can sometimes be uncomfortable to digest and may temporarily need to be eliminated from the diet to help with bloating. Most often, this occurs in active Irritable Bowel Syndrome (IBS) flares.
If IBD is in clinical remission but you’re experiencing IBS-symptom overlap, you may benefit from identifying FODMAP triggers with a dietitian. Re-introduction is an important phase of FODMAP-trigger identification, because these foods are often rich in pre-biotics, which are beneficial for the gut microbiome.
Note: A low-FODMAP diet will not impact IBD-related inflammation. However, it may help with alleviation of symptoms. This diet is meant to be short-term and with the support of a registered dietitian.
Other dietary factors: sugar alcohols, chewing gum, carbonated beverages, sugar-sweetened beverages may also contribute to gas and bloating.
Food Intolerances: Food intolerances in IBD have not been studied adequately, but the most common food intolerance in IBD is lactose, where there’s a lack of enzyme available to help break down the lactose sugar, resulting in gas production and bloating. IBD patients can develop intolerances to certain foods, such as lactose, gluten, or high-fiber foods, which can trigger bloating. The gut’s reduced capacity to break down these components can result in gas production and bloating.
Abdomino-phrenic dyssynergia (APD): this occurs when the diaphragm and abdominal muscles do not coordinate appropriately, which can lead to bloating, distention, constipation, and pain. Bloating may worsen throughout the day, even without food. Pelvic floor physical therapists (PFPT) can help evaluate and treat a person with APD.
Medications: Some medications used to manage IBD may contribute to bloating by altering the gut microbiome or affecting digestive motility.
Bloating can also be a result of constipation, but this certainly doesn’t feel like it makes sense when we’re going to the bathroom multiple times a day.
“This [urgency] can happen as a result of overflow diarrhea, when stool actually moves around more solid stool within our intestines, agitating the nerves and muscles, until there is a complete evacuation of all stool,” Stacey explains. (source)
Addressing symptom alleviation related to bloating typically requires a combination of anti-inflammatory treatments, dietary modifications (including hydration), gentle movement, behavioral modification techniques, and, in some cases, probiotics and/or antibiotics to rebalance the gut microbiome. I’ve found not wearing a tight waistband or anything that buttons at the waist can help reduce bloating. Whenever I wear Spanx, I usually end up feeling bloated.
A day in the life
I asked Stacey to walk us through a practice menu for making dietary choices to stay nourished when your IBD symptoms are getting in the way:
Practice menu Note: this is not prescriptive; these are just some ideas. The key takeaway is to aim for consistent nourishment throughout the day in active disease flares, choosing nutrient-rich foods that will support you through a hard day. Work with a dietitian for personalization! No 2 diets necessarily look the same; no 2 days look the same.
Breakfast
Low-fat Greek yogurt that’s low in lactose, which is usually gentle on the gut and rich in protein, probiotics and bone health minerals. Add in some mashed raspberries and bananas with a nut or seed butter
Oatmeal—keep it simple, instant is fine. You can add a drizzle of olive oil to make it savory with additional omega-9 fatty acids for powerful anti-inflammatory support, soft boiled eggs, avocado, with a dash of thyme.
If you simply can’t get over the idea of a savory oatmeal, just add some nut or seed butter and swirl it altogether with banana or applesauce and cinnamon
Smoothie: a liquid base, some frozen fruits (1 Cup or less at a time), and handful of greens, and a 3rd party-tested protein supplement may be a comfortable way to start the day, sipping slowly and gently
Lunch
cooked down starches, like squash, zucchini, cooked-down until fork-tender
you can recycle these starches by adding them into a sandwich on sourdough, using tahini as a savory spread that will provide you with even more nutrition
Salmon is easy to digest while providing a rich source of omega 3’s
a nice pesto sauce to drizzle over the salmon would be delicious and rich in calories, perfect when you need additional nutrition and are feeling low on energy
Or, for something much simpler:
never, ever underestimate the power of a pb + j
a side of salty, simple-ingredient potato chips can replace any lost by diarrhea if you’re having an especially symptomatic day that causes you to make more bathroom trips
Dinner
Rotisserie chicken (you can buy this directly from the grocer- no cooking required!)
you can recycle leftovers into chicken salad to be used as a protein-rich spread for lunches or snacks
Roasted potatoes, or potato soup (made in a slow-cooker for easy prep and clean-up!)
Cooked green beans or carrots. (If lacking energy, throw some veggies in the slow cooker with broth for extra nutrition)
Snack ideas:
peeled, salty edamame
Hummus, cucumber and pita for dipping (can opt to peel cucumber if that feels better for you)
Hummus, tahini, or guac on a tortilla, roll up some rotisserie chicken
Avocado toast (cheers, Millennials!)
Maybe pour yourself a cup of peppermint tea (unless you also deal with acid reflux)- this could give you some bloat relief, too!
Many IBD patients identify certain foods that trigger symptoms like bloating, cramping, or diarrhea. For example:
High-fiber foods: If too many are added at once, this can exacerbate bloating or diarrhea, leading many patients to avoid whole grains, raw vegetables, and legumes.
Dairy products: Due to lactose intolerance, some individuals avoid milk and all dairy foods.
Fried and fatty foods: These foods may slow digestion, causing discomfort or worsening symptoms.
The tendency to avoid certain food groups can result in nutrient deficiencies, especially if entire categories like fiber, fats, carbs, or dairy are removed from the diet. The unpredictability of IBD flare-ups can make patients apprehensive about eating. They may opt for bland or easily digestible foods, limiting their variety and nutritional intake. While this might offer temporary relief, it may not provide all the necessary nutrients, leading to long-term health complications such as malnutrition, weight loss, or vitamin deficiencies (e.g., vitamin D, B12, iron), or a poor food-related quality of life.
Tips for Managing Pain and Bloating While Ensuring Proper Nutrition
Work with a Dietitian: IBD patients should work with a registered dietitian, preferably one who specializes in gastrointestinal disorders. A personalized diet plan and support can help patients identify trigger foods, balance nutrient intake, and minimize symptom flare-ups.
Small, Frequent Meals: Eating smaller, more frequent meals can help reduce bloating and cramping. By spreading out food intake throughout the day, the digestive system may be less overwhelmed, potentially alleviating pain and bloating while allowing for better nutrient absorption. Reach for simple ingredients.
Eat mindfully in a relaxed environment: chew thoroughly, allowing more time for enzymes in the mouth to aid in digestion, so food is more comfortable to digest as it travels down the GI tract. Mindful eating is also associated with
Cooked and Pureed Vegetables: For patients struggling with fiber tolerance, switching from raw to cooked or pureed vegetables can provide some of the essential nutrients from vegetables without causing additional bloating or pain. Cooking helps break down the fiber, making it easier to digest. When in doubt, aim for “fork-tender” fruits and vegetables if you’re in a flare, rather than keeping them out of your diet altogether if you can.
Incorporate Nutrient-Dense Foods: Nutrient-dense, easily digestible foods like bananas, white rice, eggs, and lean meats (like chicken and turkey) can provide essential vitamins, minerals, and protein without aggravating symptoms. Incorporating bone broths, smoothies, and pureed soups can also help patients maintain a balanced diet while being gentle on the GI tract.
Stay Hydrated: Hydration is crucial, especially for IBD patients who experience diarrhea. Drinking water, broth, and electrolyte-rich fluids can help maintain fluid balance, prevent dehydration, and support digestion. Add salt to your food for hydration. If you’re struggling to maintain hydration, you may benefit from an oral rehydration solution (ORS).
Pain Management Techniques: Alongside diet adjustments, pain management techniques such as relaxation exercises, yoga, or gentle physical activity may help ease abdominal pain and bloating. Walking will help with bloating and gas. Don’t overdo it, even a walk to the mailbox after eating is beneficial. Additionally, medications like antispasmodics or anti-inflammatory drugs, as prescribed by a healthcare provider, can reduce inflammation and pain, allowing patients to eat more comfortably.
Final thoughts
IBD patients face daily challenges in managing symptoms like pain and bloating while trying to maintain adequate nutrition. During a Crohn’s flare, it’s essential to focus on easy-to-digest foods while maintaining hydration and nutrient intake. Consider how to alter the texture of colorful, nutritious fruits and vegetables for comfort, rather than taking them away altogether- your body needs the nutrition for healing! Working closely with healthcare professionals, including a dietitian and gastroenterologist, ensures that patients can minimize symptoms while meeting their nutritional needs, leading to better long-term health outcomes. The goal during a flare is to reduce irritation, manage symptoms like diarrhea, pain, and bloating, and to keep eating while welcoming more anti-inflammation through nutrition!
Living with IBD can be especially challenging in a professional setting. Prior to becoming a stay-at-home mom and freelance/blogger, I worked full-time for 12 years. For 10 of those years, my Crohn’s was not in remission. This week on Lights, Camera, Crohn’s, guidance on how to approach conversations with your boss and co-workers effectively so you can feel supported.
The more they know
Before I became self-employed, I worked at three television stations, a public affairs PR agency, and in Corporate America as a communications specialist for a natural gas utility. With each interview and onboarding process, I waited until I was hired to disclose that I had Crohn’s disease to my boss. The first week of work, in a one-on-one meeting I openly shared about my disease and tried my best to educate my boss and my team about my health. Since I did not start blogging or any patient advocacy work until 2016, there was nothing online about my journey with Crohn’s. If I were trying to get a job nowadays, I wouldn’t have that luxury since my story is publicly shared. Every single boss, all my co-workers, and each employer were extremely understanding and empathetic about my struggles. I was incredibly lucky in that regard.
While working full-time I had several hospitalizations and bowel resection surgery that kept me out of work for 2.5 months. I was grateful for bosses who were generous with sick time and that my corporate job had a solid short-term disability plan I was able to utilize.
Everyone has a different opinion about when and how to best disclose your health or disability status. While some people consider their IBD a “disability,” others do not. I’m often asked how to navigate answering that question on a job application. I personally do not consider my IBD to be a disability, but it’s understandable if you do. Answer as you see best fit and most comfortable.
Why It’s Important to Share
Accommodation Needs: Explaining your condition can help you receive necessary accommodations, such as flexible work hours or the ability to work from home during flare-ups. One of the major benefits of the pandemic is how it altered how we work. Back when I was in the workforce, working from home wasn’t utilized as much as an option. I had high symptom days where I worked from home once or twice every few months, but it wasn’t a weekly occurrence. Hybrid working environments or remote jobs are ideal for those with chronic illness.
The flexibility work from home jobs provide is huge—whether it’s being able to work from your couch if you’re dealing with abdominal pain and it hurts to sit at a desk, being able to work in comfortable clothes or pajamas if the fatigue makes showering a challenge, or worrying about the commute and being able to travel without a bathroom mishap or having to go multiple times in a public employee bathroom…the list can go on and on.
Understanding: Colleagues aware of your condition are more likely to be supportive and understanding during challenging times. One of the most important aspects of IBD to share with others who do not have our disease is the unpredictability of our health. Since we’re able to look perfectly normal on the outside, it can be difficult for an average person to fully grasp or believe the pain we’re dealing with. I remember countless days in Corporate America having to unbutton my work pants and having to tell my co-workers I was on the struggle bus. I can still envision myself on the news desk when the camera shifted to a weather segment and slumping over in pain. Everyone I worked with was aware of when I was having an “off” day. I’ve had co-workers drive me to the emergency room during the workday. I always felt supported and was never made to feel like I was less than because of my Crohn’s and for that I am still grateful.
Reduced Stigma: Talking openly about Crohn’s and ulcerative colitis can help reduce the stigma associated with chronic illnesses and foster a more inclusive workplace. People may question or wonder why you may have unique work accommodations, while it’s none of their business, being transparent, and really stepping up to the plate and going above and beyond when you’re able will show others that you never use your disease as an ”excuse”. If you have an infusion or a doctor’s appointment that makes you arrive late, it’s helpful to inform your boss and co-workers so they know why you may be strolling in during the middle of the day.
Preparing for the Conversation
Know Your Rights: Familiarize yourself with your workplace’s policies on medical conditions and accommodations. Understanding your rights under laws such as the Americans with Disabilities Act (ADA) can provide a framework for your discussion. Check out these tips from the Crohn’s and Colitis Foundation.
Plan Ahead and Explain Your Needs: Choose an appropriate time and setting for the conversation. Ensure privacy and sufficient time to discuss your needs without interruptions. I always had a face-to-face conversation with my bosses, and they were appreciative of knowing. Clearly state what accommodations you need to manage your condition effectively. This could include flexible hours, a work-from-home arrangement, or having a desk closer to the restroom. Emphasize your dedication to your job and how these accommodations will help you remain productive. For example, “Having the ability to adjust my work schedule during flare-ups will help me stay on top of my responsibilities.” If I was prepping for a colonoscopy or having a scan, I let my team know.
Gather Information: Be ready to explain what IBD is, how it affects you, and what accommodations or support you might need. A high-level explanation is often sufficient.Your boss doesn’t need to know your entire patient journey. For example, “I have a chronic condition called Crohn’s disease/ulcerative colitis that affects my digestive system. This can sometimes cause severe abdominal pain and fatigue.”
Offer Solutions: Suggest practical ways to implement accommodations. For example, “During flare-ups, I could work from home and communicate via video calls and emails to stay connected with the team.” Your boss may have questions or concerns. Be prepared to address them calmly and provide any necessary documentation from your healthcare provider.
Communicating with Coworkers
You don’t need to share all the details. A brief explanation like, “I have a medical condition called Crohn’s disease/ulcerative colitis, which sometimes causes me to feel unwell,” can suffice. Explain how your condition might impact your work or interactions. For example, “There may be times when I need to step away from my desk more frequently.”
Reassure coworkers that while you have a chronic condition, you are still capable of performing your job. For example, “Most days, it doesn’t affect my work, but there might be times when I need a bit of flexibility.”
Encourage an open dialogue. Let them know they can ask questions if they want to understand better, but also respect your privacy. While I was hospitalized, I would often send an email to my team at work to provide them with a high-level update, so they heard the information from me versus someone else. For example, “Hi team! I appreciate all your well wishes. It’s been a difficult few days, but I’m hanging in there. I hope to be discharged from the hospital by the weekend and look forward to seeing you soon.”
Final Thoughts
Talking about IBD with your boss and coworkers can seem daunting, but it is a crucial step toward ensuring you have the support you need in the workplace. By being honest, clear, and proactive, you can foster a more understanding and accommodating work environment. Remember, your health and well-being are paramount, and having open discussions can help you maintain your health, while staying on top of your professional responsibilities. When interviewing for jobs, pay close attention to how an employer manages insurance benefits, short-term/long-term disability, and whether you feel like your boss and co-workers would be people you feel comfortable sharing your health struggles with. You aren’t married to your job, if you ever feel unsupported, seek employment elsewhere. Along with your boss, it’s helpful to talk with Human Resources, so you’re aware of all the medical benefits and support that is available for employees.
While IBD complicates life, I hope you continue to go after your dreams. Sure, there are going to be setbacks and roadblocks along the way, but you are worthy of whatever job or career you want to set out and do. Less than 3 months after my diagnosis, while on 22 pills a day, I landed a job 8 hours away from all friends and family and went after my dream of working in TV news. I’m proud of that and it’s a reminder that this disease doesn’t need to rob you of all you hope to be and all you hope to do. You are not a burden on employers and the sky is the limit for you.
The moniker “IBD Mom” is commonly used in the patient community. As a mom with Crohn’s disease who has three children, I focus a great deal of my advocacy efforts on family planning, pregnancy, and motherhood. But I recognize the decision and choice to have children isn’t for everyone. Studies on voluntary childlessness among people with IBD suggest a higher prevalence compared to the general population. Research has indicated that concerns about health, the impact of the disease on parenting ability, and the potential genetic transmission of IBD are significant factors influencing this decision.
So, what about the women who make the personal and often emotional decision not to have children or who didn’t have the option to choose, due to health complications? This week on Lights, Camera, Crohn’s a look at being childfree and the many factors that may deter people from becoming parents. You’ll hear from several women in the IBD community about their decision.
Key factors that influence being childfree
Disease Activity: Active IBD puts a halt on family planning, as women are told to be in remission 3-6 months prior to conception. The unpredictability of the disease can make finding the right timing to have a baby tricky. If a woman conceives while flaring, there is a much greater likelihood of flaring during pregnancy.
Medications: Some of the medications used to manage IBD can pose risks to a developing fetus. If a woman finally finds a treatment protocol that gets her IBD under control it can feel daunting to stop and risk losing remission.
Surgical History: Surgeries for IBD, especially those involving the intestines and rectum, can affect fertility and pregnancy outcomes.
Genetic Considerations: IBD has a genetic component, meaning there is a risk of passing the disease on to offspring. While this is a major deterrent for many, it’s important to understand what that risk is. For Crohn’s, there’s a 7% of passing on your disease and even less for ulcerative colitis. When both parents have IBD that number goes up astronomically.
Physical and Emotional Well-Being: Managing IBD is physically and emotionally demanding, trying to imagine what it is like to care for yourself and take care of a child can be overwhelming for many.
Firsthand accounts from the patient community
Kat: “This doesn’t mean I won’t change my mind in the future, but my health has had a huge impact on why I have decided not to have kids. I think a big part of not wanting to carry a baby anymore is because of the trauma my body went through when I was sick in my 20s.”
Rachel: “I was diagnosed with Crohn’s disease almost three years ago, and I’m on my second biologic. I’m 25 and have decided that I don’t want to carry my own children. Due to the currently unknown effects of biologic drugs on development, but also the risks for myself coming off a biologic and flaring. I have also considered the complications of having a c-section before or after other potential abdominal surgeries and the complications from that. The main one for me though is also the genetic chance of passing IBD on to my kids. I have always been open to adoption anyway and have decided this is the route I would pursue if I do decide to have children.”
Kate: “We are going through fertility treatments after five years of secondary infertility and I chose to stop to start Rinvoq and save my rectum. I am not having my eggs retrieved and frozen in the hopes that we find a gestational carrier for our embryos.”
Kendall: “I am 30 and single and haven’t made the firm decision to be childfree, but as I get older and my Crohn’s disease gets more challenging, it’s definitely something that I’ve been questioning. Wondering if I will have the health and energy to be able to take care of myself and my kids. I worry about the impact of pregnancy on my body and of course finances are also a consideration.”
Alesha: “I’ve questioned being a mother. I’m 33 and I was diagnosed with Crohn’s in 2022. After having a perforated small intestine in 2015, an ostomy for 6 months, and the reversal in 2016…only to suffer with so much pain from the scar tissue being so narrow. I’d visit the hospital a few times a year and try to work through the pain. Now, I’ve been on Stelara for a little over a year. It’s been helping, it’s just hard to be told that the medication will be lifelong. While I desire to be a mom, I just don’t know how my body will respond.”
Liz: “I have chosen not to have kids for many Crohn’s reasons: Having to come off meds to protect pregnancy, the risk of flares and them causing infertility anyway (my periods always stop in a flare), the massive risk from common childhood illnesses, adhesions due to surgery and just the added stress and time needed to devote to a kid to raise them is something I just can’t do on top of a career as a doctor.”
Meredith: “I’m currently in this situation now. My husband and I held off having kids until we were ready (different components here—moving, reaching career milestones, enjoying our lives as they were, but in the past few years we felt we were ready except my body wasn’t. I had a terrible flare that knocked me on my ass for about a year and then I was put on my methotrexate and was told I could not become pregnant, or I would need a medical abortion. I’ve since gotten off that medicine but was told to hold off trying until after my colonoscopy. I had another small flare, and my GI wants me to wait until I’m healthier. He says, “healthy mom, healthy baby” and I don’t think he’s wrong, but it isn’t what I want to hear. So now, I’m just waiting to see what happens.”
Sarah: “Not sure what I’m looking for because I have two kids, but I had them prior to my Crohn’s diagnosis at age 30. The diagnosis prevented us from having more children. We always planned on four kids, but because of my diagnosis, we didn’t continue to try and only have our two that I had before developing Crohn’s.”
Belinda: “We’ve decided not to have any kids. I know my history with my Crohn’s hasn’t been as bad as some other ladies who would struggle to conceive and carry a child. I might have been fine to. I had two resection surgeries, at age 24 and 39. The first one was very traumatic, and I was very sick for many, many years. I just didn’t ever feel I wanted to take a risk to “rock the boat” as I’m always trying to keep my health stable. I didn’t feel I had it in me to manage a potentially difficult or risky pregnancy or bad flare after the baby. I do think there might be other reasons why we’ve decided not to have kids, so it might not be fair to blame it all on my Crohn’s. I’ve never had the urge or yearning to be a mom. It’s very prevalent in my family, too. Three out of four cousins on my dad’s side have Crohn’s and my mom’s cousin does, too. The nature of the world, healthcare issues, and so many other issues make me wonder if it influences would-be mothers. Our health is already such a scary unpredictable element of our being…who has the capacity to navigate it all?”
Kelsey: “I’m childfree by choice! I’m a professional auntie. I was diagnosed with ulcerative colitis after I had already made that decision, but it has 100% solidified it. I’ve watched my other childfree friends waiver with their decisions and some choose to have children later in life.”
Deanna: “I got married in October and my husband and I talk about this a lot. I never expected I’d be childless, but I don’t have a strong drive to have children either. The fact that the decision was made for me is something I am trying to navigate emotionally.”
Jessica: “I was always on the fence about children, even when meeting my partner six years ago when we were 25. I decided a few years ago that I did not want to have children. While there were a few factors in my decision, my ulcerative colitis was a big decision to choose not to. Stress and lack of sleep (I need at least 8 hour a night) are a prime duo for flare ups for me. I knew that if I was going to be lacking sleep in the many stages of childhood, and stressed many times, I wouldn’t be able to care for myself, and therefore wouldn’t be able to truly take care of children. I know there are so many moms out there with IBD or another autoimmune disease that are rocking it, but this was the right choice for me.”
Courtney: “To be honest, having children was just never something that was on my mind in my twenties and thirties. I was diagnosed with ulcerative colitis in college and had a colectomy in graduate school. During most of that time, I was in a 10-year relationship. Towards the end, it became clear we had different ideas about where our futures were headed. He wanted a traditional family life in a small town, and I wanted to focus on my career and stay close to my medical team in an urban area.”
Ashley: “I’ve been really scared due to medical trauma and not feeling ready to trust my body. It’s hard because I have a strong desire to have a child, but it would also mean putting myself back into situations that genuinely scare me.”
Kaycie: “My IBD is one of the several reasons I decided to be childfree. I was so sick throughout my early to mid-20s when I finally went into remission in my late 20s, the last thing I wanted was to risk falling out of it to have a child. I’m in my mid-30s now, living abroad for work, traveling all the time, and able to have the freedom I craved in my 20s when I was chained to a toilet with my ulcerative colitis. A child just doesn’t fit the life I’ve built, and my husband and I are happy with that choice.”
Lauren: “I miscarried many years ago and was told I was high risk at the time and that it would be a battle to get pregnant and carry full term. After being diagnosed with Crohn’s, I didn’t think it would be healthy to try further with my body. With so many flares and surgeries, we decided if we had children we’d adopt. It was like grieving a major loss of something I’d always wanted. I love my life and my marriage. I had a few great years of remission and have been flaring for about one year now. I’m not comfortable adopting when my health is so on and off. I don’t think it’s fair to a child or my husband to not always be present.”
J: “For me, every time we were going to try for a second child, something my with health would come up. I’ve had a collapsed lung, broken rib, inflamed pleural pace, and IBD flares. Between all those health setbacks, coupled with chronic fatigue, it felt like I couldn’t get to a place healthy enough to support a second pregnancy and even if I could, I wouldn’t have the energy to survive the first three months postpartum with such little sleep going on. So, we opted to no go for more and be as present as we could for our existing child.”
Casey: “My husband and I have had a to delay trying to conceive due to a flare and were going to delay trying even further as I just had to switch from Humira to the biosimilar, Hyrimoz. I don’t want to be pregnant while navigating a chance in medication in case it doesn’t work the same.”
Hannah: “There is still quite a lot of taboo around being childfree and it isn’t something I feel I can share with everyone. I don’t have a strong desire to be a mother. It’s difficult to know how much of that is due to my challenging childhood and adolescence due to my Crohn’s. I have a vivid memory from when I was 11 years old watching my siblings playing outside from the bedroom window and of being very upset that I didn’t have the energy to join them. That memory is very poignant and painful for me. It’s one that has been at the forefront of my mind as a 34-year-old woman as I decide whether to remain childfree. I fear repeating that feeling of being at the periphery but this time as a mother, rather than as an 11-year-old girl. Another fear is that I might pass on Crohn’s to my child. While the risk is small, I would find that difficult to bear.”
Lizzy: “I’ve had IBD for almost two years. I am on Remicade and methotrexate. Since methotrexate can’t be taken during pregnancy, it would be concerning number one of having to switch to a pregnancy-safe alternative and hope it works as well as my current regimen. Additionally, periods make my Crohn’s symptoms worse, so I haven’t had a period in over a year due to birth control. Having to get off birth control and deal with horrible symptoms sounds miserable. I get sick when I don’t sleep, and it wouldn’t be fair to always make my partner get up in the middle of the night. I am also gay so going through the stress of IVF or artificial insemination when trying to maintain Crohn’s remission would be stressful.”
Sexual and reproductive considerations
Amy Bugwadia is an MD student with scholarly concentration in medical education/health equity and social justice at Stanford. She collaborated with some IBD patients and clinicians and authored a paper about sexual and reproductive health considerations. She says, “while we were writing and listening to patient feedback there were a few salient themes:”
Mis and dis-information
Stigma: patients being too shy or not knowing if this is a topic that they can or should talk to their GI about
Confusion about language: Doctors saying “you can’t get pregnant while on this med”—do they mean “difficulty getting pregnant” due to potential infertility or “should not get pregnant” due to potential medication impacts on the fetus.
Outdated information: Many patients (especially when young) have been on the certain medication for a long time, but as time has gone on, we have new/updated data on safety profiles that not all patients are up to date on, especially relevant for pediatric patients as they transition to young adulthood.
Voluntary childlessness or being childfree among individuals with IBD is a multifaceted issue influenced by health concerns, genetic considerations, quality of life, and psychosocial factors. As you heard from several IBD women, the decision to remain childfree is often a carefully considered and personal choice determined after talking with healthcare providers, significant others, family, and support networks. I hope after reading this you feel less alone if this is your reality—whether it’s something you’ve always wanted or if it’s a decision you struggle with.
It’s no surprise as a non-profit The Crohn’s & Colitis Foundation relies on donations to fund research to find cures for Inflammatory Bowel Disease (IBD) and sustain support programs for people living with Crohn’s and ulcerative colitis. But did you know there is a Do It Yourself (DIY) fundraising opportunity for anyone interested in raising money for the cause beyond their major campaigns like Take Steps and Team Challenge? This week on Lights, Camera, Crohn’s, here’s a look at how our community has risen to the challenge in the past and how you can get involved now.
How does DIY Fundraising Work?
If you’re interested in taking the reins and fundraising, you can create and manage your own fundraising activities based on your interests and motivation. The money you raise helps support research for finding a cure for) IBD. The Foundation staff offers one-on-one support, fundraising tools, and resources to help you along the way.
Michael Osso, President and CEO of the Crohn’s & Colitis Foundation says it is incredibly inspiring to see the Crohn’s and colitis community come together with such creativity and passion to raise awareness and funds for the mission to find cures and improve the lives of the 1 in 100 Americans with IBD.
“From walking 100 miles to hosting charity hikes in Alaska and livestreaming gaming events, our supporters have come up with innovative and impactful ways to turn their ideas into personalized fundraisers through our DIY program. I am deeply grateful for every person who gets involved because together we are unstoppable in our fight against IBD,” said Michael.
Melissa Scott serves as the National Marketing Manager for the Crohn’s & Colitis Foundation. She says volunteers have been hosting their own fundraisers since the Foundation’s inception. About four years ago, during the pandemic, the program was formalized, with a dedicated team, toolkits, and fundraising platform specifically for DIY fundraising.
“Every contribution, regardless of its size, plays a crucial role. The cumulative impact of our DIY fundraisers, big or small, is vital in our ongoing efforts to fund research and move closer to finding cures for Crohn’s disease and ulcerative colitis. Each fundraiser, by raising awareness and funds, helps us advance our goal of improving the lives of those affected by IBD,” said Melissa.
Inspiring DIY fundraising efforts
The sky is the limit and the options to raise money are, too. Oftentimes as IBD patients and caregivers, we may feel our well-being and health is out of our control. DIY Fundraising is a tangible way to make a difference and recognize how supported the IBD community is within your inner circle and among your peers. Not only are you raising money. but you’re raising awareness about your reality and educating others about IBD, which is priceless.
Stasia, an IBD warrior, hosted the “Alaska Hike for IBD Cures.” She made this happen by asking her network of friends, family members, and local businesses to donate in support of her mission and to join her on the hike. Stasia wants the IBD community to know that “Even if you don’t raise a lot of money that single dollar can pay for a test tube that might holds the cure.”
Robby founded “Gaming for Guts” 10 years ago. This is a team of online gamers who raise money for IBD and provide funds to support the Foundation’s mission. Robby says, “the first year we had two people participate, now we have a whole team and we’ve raised more than $20,000 for the cause.”
As a high school student with IBD, Hala used her love for baking to drive donations. She hosted a bake sale as part of her senior project. “I knew I wanted to do a bake sale and DIY is so customizable, it was perfect for me to raise funds in a meaningful way,” she said.
Ilie, Mack, Charlie, Lawson, and Thompson created “Dilworth Kids for Crohn’s and colitis Cures” and hosted a lemonade stand during the Dilworth Historic Home Tour. With the help of the Foundation, the kids had marketing materials to help get the word out.
How to learn more and get involved
As a trustworthy source in the IBD community, The Foundation is the driving force in the development of next-generation treatments and personalized medicine for IBD. The Foundation has played a role in every major research and treatment breakthrough in IBD. DIY Fundraising is a vital tool in helping the Foundation continue its quest for better treatments and cures, while also allowing for our voices to be heard. By getting creative, taking the plunge, and seeing where it takes you, you may feel more empowered and supported on your patient journey.
You can learn more about the Foundation’s DIY program (including livestream and gaming opportunities) here. Interested in getting started? Email the DIY team directly: diy@crohnscolitisfoundation.org
Crohn’s disease and ulcerative colitis can cause symptoms both in and out of the gut. When our disease wreaks havoc on other parts of our body, outside of our intestines, it’s known as an extraintestinal manifestation (EIM) or complication. Did you know, according to the Crohn’s and Colitis Foundation, anywhere between 25-40% of people with IBD experience some type of EIM? EIMs arise in the joints, skin, eyes, bones, kidneys, and liver or as anemia. This week on Lights, Camera, Crohn’s a deep dive into the heavy toll of living with not only IBD but the EIMs that come along with them and how more than 30 patients manage these issues that can significantly impact the quality of life and overall health of IBD patients.
One of the most interesting quotes from a patient was that while one man doesn’t like EIMs, he’s grateful for them because that’s often the only time family, friends, and medical providers can see with their own eyes what a serious illness IBD is. It’s heavy, but it makes sense. IBD is so much more than a bathroom disease and EIMs go to show how severe Crohn’s and ulcerative colitis can be and how this is a full body disease.
The most common EIMs associated with IBD
Joint problems: This is the most common EIM and affects around 25% of IBD patients. The pain normally occurs in the knees, ankles, and wrists, but can also happen in the spine in the form of ankylosing spondylitis. For many of us, our biologics or biosimilars are approved to treat both IBD and rheumatoid arthritis and this can help alleviate joint pain.
Skin Conditions: The two main conditions are Erythema nodosum and Pyoderma gangrenosum. EN is characterized by tender red nodules that usually occur on the shins. PG is a more severe skin condition that causes painful ulcers. Those with IBD also have a greater chance of developing skin tags, anal fissures, and fistulas, both Enterocutaneous (from the intestine to the skin) and Perianal (around the anus that can drain blood, pus, and/or stool.
Eye Disorders: When those with IBD deal with red eyes, pain, and vision problems, uveitis and episcleritis tend to be the culprit.
Kidney complications: Medications tend to cause this, and serious kidney complications associated with IBD are rare, but still can happen in the way of kidney stones, hydronephrosis (an obstruction of the ureters, which connect the kidney to the bladder), and fistulas (abnormal connections between the intestines, bladder, or ureter). Amyloidosis (an abnormal deposit of protein in the kidneys) and Glomerulonephritis (inflammation in the kidney that limits its ability to filter properly) can also occur.
Liver and Biliary Tract Diseases: Primary sclerosing cholangitis (PSC) is a serious liver disease is most commonly seen in conjunction with ulcerative colitis. This is often discovered when lab works show liver markers are out of whack and it’s diagnosed with a liver biopsy to determine the stage and level of severity. Fatty Liver Disease, Hepatitis, and Gallstones are also considered EIMs.
Bone Health Issues: Osteoporosis and osteopenia can result from years of chronic inflammation, steroid use, and malnutrition. It’s a good idea to get a baseline DEXA bone scan and to get scans periodically to make sure you’re not experiencing this.
Lung Issues: While this is less common, lung involvement can include airway inflammation and interstitial lung disease.
Managing EIMs along with your IBD
Managing and treating EIMs is no easy feat and often necessitates a multidisciplinary approach, including your gastroenterologist, rheumatologist, dermatologist, and other specialists, depending on what organs are affected. Treatment strategies might include non-steroidal anti-inflammatory drugs (NSAIDs), immunosuppressive medications, and biological therapies which are tailored to reduce inflammation and manage symptoms.
You may wonder if there’s any way to prevent EIMs from happening in the first place. There are several strategies that can help reduce your risk, but much like anything with IBD, don’t blame yourself if EIMs keep happening to you and feel out of your control.
Effective IBD Management: Controlling your IBD through appropriate medical therapy is crucial, whether that’s in the way of aminosalicylates, steroids, immunomodulators, and biologics/biosimilars. The goal is to reach and sustain remission of your IBD, which can help reduce the risk of EIMs popping up.
Communicating when you see a change: Once you notice a possible EIM, it’s imperative you share this with your healthcare provider. Early detection and treatment of EIMs can prevent them from getting more severe. A simple message on the Portal to your GI addressing your concern or worry helps alert your doctor so they can take the appropriate measures before symptoms spiral out of control.
Lifestyle Modifications: Smoking is known to worsen the course of IBD and increase the risk of EIMs, especially in Crohn’s disease. Consulting with a dietitian who specializes in IBD can help ensure you are receiving adequate nutrition and getting regular exercise can help reduce inflammation, improve bone health, and enhance your overall wellbeing. Speaking of bone health, calcium and vitamin D supplements can help counteract the lasting effects of steroid use and malnutrition.
Collaborative Care: By branching out from your GI and seeking care from specialists, you have the best bet of ensuring EIMs are treated promptly and effectively. Talk with your GI about the potential signs and symptoms of EIMs so you know what to watch out for and have a game plan in place if one were to arise to feel more in control.
Medical gaslighting and EIMs
Unfortunately, far too many patients and caregivers feel symptoms are dismissed or not taken seriously by healthcare providers, which can be particularly discouraging and frustrating.
“I had a tough time getting my consultant to take me seriously. The eye problems were “probably just bad eye strain,” the mouth ulcers were “maybe the cups in the office not properly being cleaned, and the rashes were “probably a reaction to laundry detergent or maybe insects getting on my clothes while they are on the clothesline outside.”
Here are some helpful strategies to help you speak up in these situations and feel empowered to advocate for your health effectively:
Document Your Symptoms: You may think you’ll remember what’s going on, but life with chronic illness gets hazy and when we think back, we can lose sight of the actual frequency and intensity of what we’re going through. A detailed diary will help provide concrete evidence to discuss with your healthcare provider and may even help assist in identifying patterns that are relevant to your diagnosis and treatment.
Seek Second Opinions: If you don’t feel listened to or heard, don’t hesitate to get a second opinion, and find a provider you jive well with. Each doctor has varying levels of experience with IBD and EIMs, find the person who best understands your personal situation and is willing to get you to where you need to be, rather than dumbing down or belittling your experience.
Be Prepared for All Appointments: Write down a list of questions and concerns before your appointments. Bring your symptom diary and any other relevant medical records. By being prepared, you can better focus and ensure that you’re capitalizing on the one-on-one time you have with your doctor while you’re face to face.
Bring an Advocate: Having a trusted friend or family member at your appointment can provide support and help ensure that your voice is heard. That person can also help remember details on the appointment that you may not.
Be Clear and Assertive: There is a delicate balance between being assertive about your concerns without being confrontational. Be descriptive and transparent about the impact your symptoms have on your daily life, paint as clear a picture as you can and explain why it’s important for these symptoms to be addressed.
Educate Yourself: By understanding what EIMs are ahead of your appointment you can feel more confident about asserting your concerns and how best to improve your health. If you’re able to “talk the talk” with medical language about your condition, your healthcare professional will be more apt to listen.
Formal Complaints: If you repeatedly feel as though you’re dealing with an unprofessional doctor who has a dismissive attitude, or if you feel your care is compromised, it may be necessary to share a formal complaint with the medical facility.
Let’s hear from IBD patients and caregivers
Leah daughter was diagnosed with Crohn’s when she was five.
“Little did we know our most difficult days would come a few years later and be due to an extraintestinal manifestation of her IBD. It started off as bruises on my daughter’s shins. I thought it was related to her sledding on her knees with the recent snowfall. Unfortunately, I had never learned about Erythema nodosum being related to IBD and would later learn this is what she had. The spots on her legs grew and grew. They eventually got raised and painful. I emailed our GI nurse and thankfully she instantly knew and sent us for stat labs. My daughter was on Humira and wasn’t in remission, so the drug was increased. Week by week things got worse and more painful. The redness and swelling covered her entire shins. The bumps spread to the bottom of her feet and were extremely painful. Her feet swelled and she was crying in pain and no longer able to walk on them.”
Leah ended up taking her daughter to the ER where she got steroids and started on antibiotics as it looked like the spots had turned into cellulitis on her feet.
“I was not prepared that EN could be associated with IBD. I wish I had known earlier, so her condition could have been treated more aggressively from the beginning. It was many months before she healed, and her maintenance medication was switched.”
Emilie– “This is such an important topic and I wish it were discussed more! Most of my UC complications have revolved around extraintestinal manifestations (as opposed to typical UC symptoms). I have had arthritis and uveitis and for me, extraintestinal manifestations always come first, before a typical flare and always stay long after the typical UC symptoms have resolved. At times, I’ve just had extraintestinal manifestations without any typical UC flare symptoms. The most frustrating part about EIM symptoms is that most GI doctors aren’t super familiar with them and only think they happen after a UC flare. Thankfully, I’ve been followed by a rheumatologist since I was diagnosed (because I had EM symptoms long before I had typical UC symptoms and saw a rheumatologist first). My rheumatologist is always like, “we follow people with these symptoms to see if they develop IBD” and many of my GI doctors have said, “this can’t be because of your UC.”
Dina was diagnosed with UC in January 2022 after experiencing IBD-related symptoms six months prior. Since then, she’s had pneumonia, mono, CMV, RSV, and other illnesses. She went from weighing 150 pounds to 120 and was so weak she could barely walk. She was switched to Entyvio/Rinvoq as a combo therapy along with an anti-viral drug used to treat HIV to try and keep the CMV virus at bay. The CMV made her liver markers skyrocket, and it was discovered she has Stage 1 PSC, in addition to everything else.
“I consider this a blessing because once I went back on the full dose of anti-viral my liver counts normalized. We never would have known about the PSC until it got severe or at a later stage. My GI said he’s never seen PSC in this early stage, so I’m grateful we can start earlier than most to monitor it.
Lynette-“I’ve dealt with many EIMs. To manage my anemia, I take iron and having a hysterectomy helped. For my kidney stones, I stay hydrated with electrolytes daily. I had surgery for hemorrhoids and fistulas. I’m on medication to manage my joint pain and use my heating pad. I use a special toothpaste to prevent cavities and I floss daily. I do everything I can to reduce stress and anxiety—from breathwork, to meditation, and openly communicating with my family.
Madison-“My personal experience is severe joint pain and swelling, as well as erythema nodosum. My IBD flares typically begin with joint pain. At times, it can be so severe I can’t walk up and down stairs because my ankles are so swollen. When I was first diagnosed with Crohn’s, in addition to my joint pain, I started to develop red tender bumps all over my legs up to my knees. They were so painful to touch, and they were diagnosed as Erythema nodosum which only occurs in about 10-15% of Crohn’s patients. Once we got my IBD under control and found the underlying cause of my joint pain and erythema nodosum they thankfully got better.”
Myisha- “I experience inflammation in my eyes three to four times a year. I also deal with osteoarthritis. Mentally, I’ve checked out on my Crohn’s awhile ago. I just take it day by day. I have eye drops that I have to use daily to help with inflammation, but osteoarthritis is painful and some days I want to cut my limbs off. I always try to remind myself that someone out there has it worse and today might be a high pain day, but the darkness doesn’t stay around forever, eventually the sun will shine again, and I’ll have a low pain day.”
Christopher- “I’m 46. I was diagnosed with Crohn’s about two years ago. Three years before that I began having panic attacks and anxiety out of nowhere. I went from never having anxiety or panic to multiple incidents per week. At the same time, I had new joint pain in my knees, and developed arthritis in my shoulder joint as well as mild lower right quadrant pain. Now, looking back, these were all related to systemic inflammation from the undiagnosed Crohn’s. Now that I’m in remission, it’s all gone away.”
Vern– “OMG EIMs!?! I have so many. Along with Crohn’s, I have developed Gilbert’s Syndrome, short gut, Reynaud’s, rigors, kidney stones, skin problems, anemia, B12 and vitamin D deficiency, joint pain, fissures, fistulas, and hair loss. There’s not much to do when it comes to Gilbert’s, Reynaud’s, rigors, or skin…but with kidney stones I drink a lot of water everyday plus cranberry juice or tea every once in awhile. To manage my anemia, B12 and D, I take easily soluble supplements and B12 shots every month. I take Tylenol to manage my joint pain and rest. The fissures and fistulas have a mind of their own, so not much I can do until it’s taken care of surgically if it gets bad enough. The hair loss is from medication and even when I tried different treatments (home remedies) nothing worked until I was off the medication.”
Pao-“I have been experiencing skin issues for the last year and a half. I have a lesion under my armpit, behind my ear, and a gangrenous epidermis, which is healed. I had a biopsy on the lesion and then a corticosteroid cream healed it. The lesion on my ear won’t go away after months of putting cream on it.”
Kerry-“I deal with intense joint and muscle pain all over my body. My left hand got so swollen at one point that I tried to learn to write with my right hand. This was during my initial diagnosis. Once I started on Remicade it helped and now my joint pain is an indicator of disease activity for me. I log symptoms using the Wave app, I increase my rest, and use diclofenac gel as a topical analgesic. I also see a rheumatologist who has experience treating other IBD patients.”
Rocio: “One of my most debilitating and constant EIMs I’ve had over the last 20+ years is iron-deficiency anemia (IDA). The fatigue levels I live with are beyond frustrating. I know the disease itself can add to my fatigue, but even when at my healthiest, I’m constantly tired. And it’s the kind of tired no on understands. I’ve received countless IV iron infusions for my IDA as I can’t tolerate oral iron due to my previous history of chronic constipation. Fortunately, infusions and I’m able to go months without iron, but there have been times where I’ve received 5 infusions in 1 month – yikes!”
One of Rocio’s other debilitating EIMs is uveitis. She says it is truly one of the most excruciatingly painful manifestations.
“Despite having a high pain tolerance due to chronic illness, uveitis has been one experience I don’t wish upon anyone. And uveitis can progress to glaucoma or vision loss. I did have glaucoma along with my uveitis, but we treated it immediately. Due to recurrent uveitis flares and limited treatments that worked for me, I dealt with uveitis for nearly 3 years. The ophthalmological EIMs that can occur with IBD are not one to take lightly…we need our vision!”
The earliest EIM Rocio experienced were perianal fistulas – a common type of enterocutaneous fistulas. Unfortunately, she did not receive proper care initially, or her actual IBD diagnosis, for five years. She could have suffered far less had her fistulas been identified as an EIM of Crohn’s disease.
Jennifer-“So many doctors are just unaware or unwilling to see extraintestinal manifestations for what they are. When I was in my late teens and struggling with depression and a ton of stress in my first year of college, I was shamed by a doctor and told (without any testing) that I had herpes. Mind you, I had never been sexually active and never had symptoms before this point. I was in extreme pain and had painful ulcers from my mouth to my anus and genitalia. I left the appointment in tears and wanted to die. It was only years later that I learned of external manifestations of Crohn’s and had a doctor confirm that is what happening all those years earlier.”
Jennifer says she had far too many unpleasant encounters with doctors over the years. From doctors telling her that she was just a bored homemaker (because he felt my complaints were made up) to dentists shaming her in front of her kids (because her mouth health was in his opinion from lack of hygiene vs. effects of Crohn’s disease).
“I was also told by a GI doctor once that if my Crohn’s disease flared while pregnant that I should just have an abortion (for a pregnancy that I very much wanted). This is not a commentary on my stance on abortion, but rather the lack of empathy and respect that this male doctor had towards me, my health, and my choice in that moment.”
Becky- “Erythema nodosum is so scary and I had no idea what was happening to my legs. It was so painful to even walk. I’ve lived with Crohn’s for 30 years. I was admitted to the hospital and given steroids and the doctors drew black Sharpie circles around the red swollen lumps on my legs to see if they grew larger. I was there several days, and the doctor finally figured out what was going on based off my medical history. I was on steroids for awhile and then it finally cleared up.”
Liz- “Extraintestinal manifestations are one of the toughest parts of Crohn’s for me. I have joint aches, eye inflammation that is so painful and disruptive when it flares and chronic severe anemia. Each result in another doctor, another expensive treatment, and time not feeling well. Getting doctors to recognize that they are all connected is difficult as well.”
Anthony has lived with Crohn’s for almost 18 years and EIMs have been a big part of his journey. To him, they’re often a key indicator that a flare up is on the way and unfortunately EIMs have become a regular part of his life for the past decade.
“I get a lot of eye problems (swelling, overly sensitive to light, foggy vision). Once I woke up with my left eye swollen shut. I get a lot of ulcers on my gums, tongue, and in my throat along with rashes that break out on my arms, back, and hands. When I get ulcers, I have difficulty swallowing and need to consciously put effort into swallowing my tablets and often I’m forced to stay away from solid food and meals.”
Anthony goes on to say EIMs bring on depressive episodes for him, along with brain fog, and having issues concentrating and remembering.
“Some days I wake up at 4 or 5 in the morning with a cement block of sadness in my chest, preparing to go about a “normal” day and hoping not to feel the urge to burst out crying. Before I learned how to live with it and got mental therapy, I had to write almost everything down to the point of keeping a note on my phone with bus and train times that would get me to and from work or to various parts of the city because I’d draw a complete blank at times or couldn’t figure out the timetables. I am an engineer and almost had to give up my career because I couldn’t get through a workday.”
Deb– “I’ve had reoccurring Pyoderma Gangrenosum under the flange or baseplate of my ostomy to the point that the skin and tissue diminished and has now caused a very significantly sized peri stomall hernia. We haven’t landed on a treatment of late that has any amount of effect on the inflammation in my colon, so no hernia repair until we get the CRP way down.”
Courtney-“I’ve experienced blepharitis, which is an inflammation of the eyelid that may commonly be confused with pink eye. I’m not fully clear if it is an extraintestinal manifestation or side effect of immune suppression, but after 5 years “in the clear” it’s back. One of the few occasions when I actually “look sick” but feel fine. It’s treated with antibiotic eye drops. I saw a specialist who recommends a special cleanser with tea tree oil.”
Amanda-“During a particularly bad Crohn’s flare, I developed Erythema nodosum. They were painful welts that went up and down both legs. My legs got so swollen and covered with welts that I couldn’t bend them to walk. It was incredibly painful and difficult to need help just getting out of bed. They took awhile to go down and left bruises all over my legs. No one ever mentioned this to me as a possibility, so I didn’t even think to contact my GI, but my local emergency room doctor pointed me in the right direction.”
Krista– “Oof. Alopecia. I lost probably 50-75% of my hair. Now it’s thicker than it’s ever been. Very strange. I also have experienced bursitis and inflammation in my knees, but that’s only flared up once since my IBD diagnosis.”
Melanie-“I was diagnosed with IBD when I was 12 and by 15, I could no longer walk upstairs due to Crohn’s-related arthritis. I went on Remicade which got me walking again but have since been looking for options. Sometimes my Crohn’s and Arthralgia flare together, but in my experience, when I get one under control, I start having issues with the other one which can make disease management a challenge.”
Tish- “I got Uveitis and must always be on the watch for signs of it now. It was misdiagnosed as an eye infection, and I was sent to the eye and ear emergency, but they also misdiagnosed it. Thankfully, I was able to see my ophthalmologist who correctly identified and treated it properly. I also have very dry eyes, so I always use drops to avoid it leading to another Uveitis flare up.”
Eliza– “I’ve dealt with bone density issues related to my ulcerative colitis. I now take a prescribed high dose of D3 and incorporate calcium and other minerals as often as I can into my diet. I have been getting DEXA scans since I was 19!”
Allison-“Skin!! Why are there no IBD-expert dermatologists anywhere?! Why can’t my doctors give me more information about extraintestinal Crohn’s related skin issues? Are we really suggesting bleach baths as the only path for resolution because that feels insane. I’m struggling to find the right resources to help.”
Stacey-“I developed Type 2 diabetes as a result of the inflammation in my pancreas. In addition to diabetes, I also have Rosacea caused by my Crohn’s. We first thought it was an allergic reaction to my Stelara. However, the Rosacea persisted after I stopped Stelara. I saw a Dermatologist who made the diagnosis, and I was then able to get back on it. Like many IBD patients, I also deal with dry eyes, dry mouth, fatigue, and achy joints.
Dana– “I’ve struggled with cutaneous Crohn’s (perianal and elsewhere) and oral Crohn’s, including mouth sores, gum inflammation, and recession. I’ve been prescribed a lot of various topical medications (tacrolimus, taclonex, steroids…just to name a few). It causes a huge gluteal cleft fissure and a lot of damage to my skin in the perianal area in general, which was resolved when I had my proctocolectomy surgery. They had to cut my rectus abdominis muscle to create a flap and place it in the area where they had to cut out all the tissue and skin. Regarding oral Crohn’s, I have steroid ointment that I use as needed for inflammation/sores and I’ve had three gum graft surgeries so far.”
Gabriella-“I have chronic urticaria and dermatographia that was triggered by a rare reaction to the carrier protein used in Humira and Remicade. The reaction hasn’t gone away despite stopping those medications, and despite taking Xyzal and Benadryl daily. I still have extremely high IgE levels. I had had all the major inflammatory skin conditions associated with Crohn’s as well: Erythema nodosum, Pyoderma gangrenosum, and just general infections from “normal skin flora.” I’ve had multiple bad IBD flares where I’ve experienced inflammatory arthritis in all joints from my hips down.”
Ben-“I was diagnosed with gastroduodenal Crohn’s and UC over 30 years ago when I was six. Back then, it started with Erythema nodosum, which led to a colonoscopy, when then ended in my first polyps removed and a diagnosis. I still have issues with it today. I also picked up an obscure kidney cancer about five years back. My oncology and GI teams feel it is related to my Crohn’s/UC somehow, as they don’t see this type of cancer in patients under age 80. Crohn’s also gives me severe anemia.”
Stephane– “After 15 years of partial obstructions, during which I amazingly enough, managed to avoid diagnosis or treatment, it was the obviousness of an extra-intestinal manifestation, my left ankle swelling for no reason, which marked the beginning of the end of my epic denial. Over the summer, my knees swelled too, and walking became painful and slow. By September, I couldn’t walk at night because of the pain in my joints and had to crawl to the bathroom. Finally appearing in the ER, sent by my GP, ankles, and knees puffy and swollen, anemic, malnourished and down 30 pounds, the doc only needed to glance at my chart and test results to give me a diagnosis of Crohn’s.”
Amanda-“Extraintestinal manifestations I’ve dealt with include mouth ulcers, inflammation of my eyes (so red!), joint pain (specifically knees and hands), TMD (no classic clicking or popping, just mass inflammation of the joint and muscles), eczema, anxiety, slow wound healing, fatty liver (non-alcohol, I don’t drink, I am a fitness and nutrition professional so I know my lifestyle is on point), and kidney stones.
Amanda manages this by having exceptional oral hygiene. She brushes and flosses twice a day and uses Orajel mouth wash. She sees an Ophthalmologist to ensure she doesn’t have damage to her eyes and uses Lumify drops to combat the redness. Amanda takes a curcumin supplement (primary bioactive substance in turmeric) for its anti-inflammatory properties, which may also help with joint pain. She uses a bite splint and warm compresses for her TMD and eczema patches on her face, around her ears, eyes, and neck. Amanda has two different prescriptions from her dermatologist to address this: hydrocortisone cream and fluocinolone oil. She also uses Skin Smart antibacterial eczema spray every night. To deal with the remainder—she practices stress reduction when and where she can, continues to focus on her diet and weightlifting and keeps her sugar intake low. She doesn’t drink alcohol and only takes moderate caffeine each day. She’s also hyper focused on micronutrients, specifically fiber, vitamin D, iron, zinc, folate, and B vitamins for overall health and wound healing. Her Avsola infusion for her IBD also is approved to treat Rheumatoid Arthritis so she feels that helps her joints feel significantly better.
Dealing with the mental health challenges of EIMs
Much like IBD, EIMs take a toll on our mental and emotional wellbeing. By seeking mental health support from a psychologist or counselor trained in chronic illness management, you can receive valuable support. Cognitive behavioral therapy (CBT) is particularly effective for managing depression and anxiety associated with IBD. If this article has done anything, I hope it’s shown you that you are not alone and sadly how common these complications are in our community. By simply going on social media and looking up hashtags for your EIM, you will see so many others who are living your reality and can learn a thing or two and feel understood, seen, and heard. There’s so much power that comes from us joining forces as a shoulder to cry on and an ear to listen, even if we’re thousands of miles apart.
By educating yourself and being proactive about what could happen to your body now or in the future, it can help reduce fear and anxiety that is associated with these unexpected and often unruly symptoms.
Everybody copes and has their own unique tips and tricks for undergoing an MRE. I received more than 100 messages with recommendations, there was some overlap and similar advice—but I know our community could benefit from this information and find comfort in it. One of the most challenging aspects of undergoing medical scans and procedures is the mental health aspect—the wait, the wondering. Oftentimes these results do not go in our way and may indicate we are in a serious flare or need surgery. So, while the actual process of drinking contrast and dealing with claustrophobia can be intense, the challenges are often amplified by the dread of finding out the story behind our symptoms. Understand you are not alone in that. I try and just prepare myself for the worst, while hoping for the best. Nobody wants “bad” news, but once you go through the scan and have a better idea of what is going on and then you can go after the flare and get to feeling better.
Here’s the link to Part 1 of “Everything You Need to Know Before an MRE with IBD” in case you missed it.
Advice from the community to ease the MRE experience
“Whether it’s laying there saying prayers (like the Rosary) or focusing on doing something (like walking through Sun salutations or walking through doing something you love to do) that has helped me.”
“As a pediatric patient, my mom was allowed into the MRE room, and she held my foot (the only thing she could reach). Just feeling she was physically there helps my anxiety a lot. Ask for goggles that let you watch a movie are gamechangers because you can’t see anything but the movie, even if you tried!”
“I close my eyes and pretend that I’m lying on a beach and listening to country music. I feel comfortable knowing I can see my feet at the other end, and they can communicate with me. Honestly, I close my eyes and sing my heart out!”
“I listen to the loud banging noises and try to find melodies or patterns. Then, I repeat them back in my head and by the time I’ve done it a few times I’m in a meditative state or the test is over.”
“I try to look up/behind me if I start to feel claustrophobic and you can see outside! I also find it almost relaxing to count the loud clips and beeps. It gets your mind distracted.”
“Picture yourself someone you like; use deep breathing to help soothe your vagus nerve.”
“I know it’s not ideal, but if you are extremely overwhelmed you can always get the test under general anesthesia.”
“I focus on my breathing and imagine I’m in my favorite place.”
“Eye mask with no metal clasps and ear plugs (or music) helps to reduce the sensory overload for me.”
“Before you get in the tube, ask for a towel. Put it over your eyes and do not take it off until they let you out.”
“Deep breaths. Visualize you’re in your favorite place and ask for music. Ask your GI if moving forward Intestinal Ultrasound can replace getting an MRE.”
“I’m normally able to tilt my head up to see out the end of the tube. It helps me so much!”
“Breathing exercises can help.”
“Ask if there is a bariatric imaging machine so you have more room.”
“Slow deep breathing helps me prepare for it and calm down.”
“I close my eyes and envision being on a bench or somewhere hard but with open space for me.”
“Gadolinium has a high allergic reaction. Even if you have not had it before. Communicate with your care team and ask about taking Benadryl.”
“Meditation and Guided Imagery.”
“I take deep breaths and remind myself I am going to be ok. It was quicker than I had expected.”
“Take extra Xanax! I take it for flying and always need more than I think.”
“If they let you pick the music, pick it! Having my music really helps me.”
“See if an Open MRI is available. Otherwise, a big dose of benzos.”
“I’ve been Twilight sedated before, it’s the only way to go!”
“I took Zofran. I also wear MRI safe clothes, so I don’t have to change. I make sure there’s no metal in my bra.”
“Focus on breathing. Close your eyes before being rolled in. Think of something like planning a party or a holiday.”
“I hate it. Hate it. Hate it. Someone told me just don’t open your eyes and it worked.”
“I take Ativan and do breathing exercises.”
“Always ask for a towel or wash cloth to cover your eyes.”
“Keep your eyes closed the whole time. Do not peek. And ask for your favorite music to play.”
“I keep my mind focused on other topics and talk to God.”
“Take anxiety meds! If I have to do this again, I will take something.”
“Let your care team know before you enter the room that you’re claustrophobic.”
“Say Affirmations or imagine being on a vacation on a sunny beach. Anything to divert your mind.”
“Last time my nurse gave me an orange smelling strip that helped so much.”
“I close my eyes and pray or sing songs I like the most in my mind.”
“Slow breathing and counting (in for 4 seconds and out for 4 seconds) or listening to music while in the tube.”
“I always have a Life Saver candy between the contrast drinks.”
“I asked them to bring me back far enough so I could tip my head back and see the ceiling.”
“My sister needs to take 3 anxiety pills for the MRE.”
“Try to find your happy place and go to that in the tube.”
“Have all the good and happy plans run through your mind and ponder them. Daydreams! Mantras!”
“I write stories in my head—like manifestations.”
“Think of a beach on a sunny day.”
“Make lists in your head.”
“Definitely have anxiety meds on hand.”
“Bring a personal blanket. This always helps me.”
“Bring ear plugs in case they don’t have some for you.”
“Use a wedge pillow for your legs (ask for it).”
“Visualize the best vacation, start to finish. Try to remember every detail. Distract your mind!”
“Ask for a heated blanket, it can be chilly in there.”
“When your mind wanders, count. Count breaths in (5) and out (5) and focus on the numbers.”
“Some MRI machines offer a mirror, almost like a periscope. It shows you the outside!”
“Fast paced work out music helps me.”
“I ask before we start that they give me a time update every 15 minutes.”
“It makes me less anxious when I hear the weird and terrible sounds the machine makes if I have NSYNC playing. Have them play music you like that’s also light and funny. (As in 90’s boy bands!)
“My office gives lavender stickers to help calm you to place on the robe. It helped me!”
“I’m SO claustrophobic but I always self-talk “I’m a mother and set the example for my kids.”
“Tell the tech you are nervous. Ask them to check in with you more than they usually would.”
“Remember you can squirm out of the bottom if you need to. Knowing that makes me feel less trapped.”
“Lavender essential oil.”
“I took half a Xanax and enjoyed every second…haha.”
“Take the meds and extra, if possible. I’ve taken up to 4-5 mg of Ativan!”
“They let you choose your radio station or podcast, which can help.”
“I’ve listened to the Hamilton soundtrack. I struggle more with getting the contrast down.”
“Meditation! I always do it before, during, and after.”
“Prepare a playlist or an audiobook and ask if the tech can play it over the speaker.”
“I pray the entire time, so I don’t panic.”
“Try not to investigate too much about the details, it may worry you too much.”
“It’s easier to go in feet first, I don’t know why…but it is.”
“Use the help/panic button and take a break midway through if needed.”
“Be prepared to hold your breath a lot—the tech will guide you.”
“Request a helmet with a mirror. It’ll help you see out of the tube.”
“Try and see how many song lyrics you can remember.”
“Tell them you are nervous. They are more understanding and will talk you through it more.”
“Make sure you give the anxiety meds at least 30 minutes to work their magic.”
“The pills help tremendously, but I also bring an eye mask.”
“Thank you for doing this article, I’ve canceled my MRE twice now out of fear.”
Nearly 19 years of living with Crohn’s disease and this past week I experienced an MRE (Magnetic Resonance Enterography) scan for the second time. I felt nervous, overwhelmed, and scared leading up to the test. The only other time I had an MRE was in July 2015 while hospitalized with a bowel obstruction. The scan was used to determine whether I needed surgery. I was out of it and have little to no recollection of the experience. The results from my MRE in 2015 informed my GI team back then that I needed 18 inches of my intestine removed. Fast forward to the present day, and after being in deep remission since that surgery, I started to experience a worrisome uptick in symptoms beginning in early March 2024.
It took a month to get in for the MRE, but I knew in my heart-of-hearts I needed to get answers. Leading up to the scan, I crowdsourced questions on Instagram and received an outpouring of support that helped make the experience nearly seamless for me. This week on Lights, Camera, Crohn’s I provide a behind-the scenes look at what it’s like to get an MRE and share firsthand advice from a patient advocate who is truly an “MRE pro”. Due to the amount of information, we’re breaking this bad boy up into two parts.
Walking you through the process
I had to arrive at the medical center at 10:15 am and was advised not to eat or drink four hours prior. I set my alarm for 6 a.m. and drank some water. When it was time to get in the car with my husband to head to my MRE, I took a Zofran to help prevent nausea from drinking all the contrast. After arriving at the imaging center, I was brought back to a room where I answered health questions and changed into a hospital gown and pants. I wore a sports bra without metal but was told I couldn’t wear it due to some synthetic fabrics. Then, I received my IV. The nurse took one look at my arms and grabbed a vein finder machine. For those who don’t know, this looks like a wand and puts a light over your arm to highlight veins so the nurse can pick the best option. My husband held the wand for her as she did my IV and she got it on the first try. That was a big win for me.
Once the IV was in, an MRI tech brought me three bottles of contrast (450 ml) to drink, about 46 ounces of fluids. I was told I had 20 minutes for each bottle and hopefully that I would have all three bottles down in an hour. Worst case the tech said I needed two. She told me not to chug too fast as that might make me nauseous. I took it with a straw and scrolled on my phone to distract myself. The contrast tasted like a super flat Sprite with a dull citrus taste. I’ve heard many people must do this in a public waiting room, I was grateful to be in a private room with my husband.
Due to my claustrophobia and anxiety about the test, my GI prescribed pre-meds for me that I picked up from Walgreens prior to the day of my test. He prescribed me four, 0.25 mg Xanax. I had never taken Xanax and did not know how it would make me feel. I called the Radiology center the day before the scan to ask whether I’d be able to get anything in my IV if I was too anxious, and they said if you’re outpatient you can only take anxiety meds orally.
Fellow IBD patients advised I take one Xanax the night before to have an idea of how it made me feel. I followed that advice and I’m so glad I did! Knowing how I responded took a bit of the stress off my shoulders. I took my first Xanax the moment I started the contrast (1 hour prior to the MRE) and then 30 minutes later I took .50 mg (2 pills) because I didn’t feel calm enough. For me, that was the perfect dosage. I felt completely coherent but chill and relaxed.
When I walked into the MRI room I asked if I could have headphones and listen to music. The techs asked me what kind of music I wanted; I said something upbeat like Taylor Swift. Then, I asked for a washcloth to put over my eyes. The scan took 45 minutes, I didn’t have one moment of fear or anxiety. There are lots of loud banging sounds and you hear the tech’s voice instruct you when to hold your breath and when to breathe. I felt very at ease and at the end started to doze off!
Since I had been NPO all day and it was 1 p.m. I was given a bag of pretzels and a bottled water after I changed back into my clothes. My husband had to leave during the scan to pick up our younger two from preschool, but the timing was perfect, and he swung back and grabbed me, so I did not have to drive after the scan. I felt tired afterwards.
After about 3 hours I started to get excruciating abdominal pain that I was not expecting. I’ve since been told by fellow patients that this is a result of the contrast and that it’s not unusual. I was very uncomfortable for about four hours. I spent a long time in the bathroom and on the couch with the heating pad. By about 9 p.m. I felt back to normal.
Guidance from a Veteran IBD Warrior and MRE Pro
Rocio Castrillon has lived with Crohn’s disease for more than 20 years and underwent countless MRIs specific to her IBD, but also for a multitude of other reasons including—Brain, Face/Sinus, Shoulder, Cervical Spine, Lumbar Spine, Legs, and Knee. She’s a true patient advocate in every sense of the word and someone I admire greatly. Through my recent experience, Rocio helped me immensely and even texted me the morning of my scan on her own accord, throughout my test as I drank the contrast, and after when I was stuck in the bathroom in pain. This is a true example of someone who goes out of their way behind the scenes to be a source of comfort and support for others. We have never met in person (yet!) and there’s this level of friendship between us.
“While MREs are specifically used for IBD patients, due to the contrast ingested, as well as injected, they are more complex than the traditional MRI and tend to be lengthier in time. Due to my anxiety and claustrophobia, I’ve had to utilize coping techniques to undergo MRIs and although they are still challenging, it’s yet another aspect of my IBD I’ve overcome. While these recommendations are primarily for IBD patients, many can be considered for a traditional MRI,” explained Rocio.
Check out Rocio’s step-by-step advice as your gear up for your next MRE:
PLANNING
At the time that an MRE is ordered by your gastroenterologist, there are a few considerations to keep in mind. MREs will require prior authorization which may take weeks. Fortunately, this time will allow you to explore options for locations.
In most cases, the MRE is ordered to be performed at the imaging facility that is affiliated with your provider, but you do not have to do your MRE there.
Oftentimes, there are private imaging centers, not affiliated with an academic institution, which can be more cost-effective.
MRI machines are now available in a wider bore design to help reduce anxiety and are recommended for claustrophobic patients. The feeling of a more “open” machine is beneficial. But to locate one, you must call around to determine if your recommended imaging facility has them and/or if you need to seek out an external facility.
At the time of your gastroenterologist appt., and if you have anxiety and/or claustrophobia, Rocio strongly suggests requesting a prescription for a sedative used for panic disorders, such as: Ativan, Klonopin or Xanax, which are short-to-intermediate in duration. While you will only need a prescription for one pill, keep in mind that there are many states that now require identification to pick up controlled substances.
Please note that if you do take a sedative, you will be required to have a driver to accompany you, as you will not be allowed to drive yourself.
Also, at the time of your gastroenterologist appt., and if you have nausea, Rocio strongly suggests requesting a prescription for Zofran to be utilized prophylactically.
Once the prior authorization for your MRE is approved, you will be able to schedule. Request an appt. time that works with your personal eating schedule. Because MREs require fasting, as well as contrast ingestion, patients may find it challenging to drink contrast early in the morning. Rocio tends to have more nausea in the mornings, so she prefers to schedule mid-day scans. While this does mean a longer fasting time, it also allows her to drink more contrast.
DAY BEFORE
Rocio eats a light diet the day before the MRE to prevent nausea as much as possible. While this is not necessary, she’s found it helps with nausea and vomiting.
HYDRATE…before AND after your MRE. While the technicians will explain the need to hydrate following an MRE, hydrating beforehand will allow for easy access to veins for the IV needed to inject the contrast. Hydrating after is crucial to eliminate the contrast from your body.
DAY OF MRE
Before leaving home, be sure to remove all jewelry and/or metal from your body. Because an MRI machine uses a magnetic field, you cannot have any metal on you. Women will be asked to remove their undergarments which have metal.
Additionally, if you continue masking in medical facilities, your mask will be switched out for a mask without metal that the technician will provide you.
An hour prior to the scheduled arrival time, take the prescription Zofran so it has time to kick in before needing to begin the contrast. It will help prevent/reduce the level of nausea and/or vomiting from the contrast.
Upon arrival at the imaging facility, you can take the sedative, as this will allow it time to kick in before you begin the imaging. Because there will be a window of time when you need to consume the contrast and when the imaging begins, this typically works well.
Contrast! While many academic institutions have shifted to a new contrast, Breeza, which is lemon-lime flavored, it is not always available to patients. In the past, Rocio has consumed other contrasts. She wholeheartedly agrees that Breeza is certainly better “tasting” than those in the past. But in full transparency, it still is contrast…haha.
For all her MREs, Rocio has been provided with three bottles of Breeza. Unfortunately, she cannot consume all of them, and at best, she’s drank a maximum of one bottle. While this is certainly not ideal from an imaging perspective, and is NOT medical advice, she’s been fortunate to have been “allowed” to perform the test with just one contrast bottle. The imaging that has resulted has sufficed for the radiologist to review and for her gastroenterologist to see results.
Insider Tip: While this may not be available to all patients at all facilities, Rocio always requests to sit near a bathroom and/or near a trash can if she is in the main waiting area. She says she already has enough anxiety about the MRE, and having people watch her drink contrast tends to make her more anxious. Note this is NOT always readily available, and you will have to adapt to what is available at your facility.
MRE START
Upon finishing the contrast, the technician will take you back to the MRI machine where you will be laid flat. If you have anxiety and/or claustrophobia, be sure to alert the technician as they can make you more comfortable in a few ways.
Typically, a technician will ask for your music preference as they’re able to control the music that you hear via headphones (provided to you)
Rocio prefers relaxation/spa music as it helps to keep her calm.
Depending on your facility, there are mirrors that can be placed to allow you to “see” the surroundings and not actually have a view of the MRI tube. It enables patients to have the “illusion” that they can see the outside – either images displayed on the ceiling, or the room where the technician is sitting. This has been a lifesaver for her!
During the MRE, the technician will explain everything to the patient through a speaker that you can hear in the machine. You will also be able to respond to the technician and they can always hear you. You will also be provided with an emergency panic button to press, should you need to come out of the machine for any reason.
During the MRE, the technician will advise when they are starting the contrast through your IV. You should not feel anything except a quick sensation of nausea that passes immediately. This doesn’t happen to everyone, but it’s common.
Rocio says for some patients, like herself, who have been unable to consume all the contrast or who have slow motility, sometimes an injection called Glucagon will be utilized. This improves the quality of the images, but it does cause side effects. You will be instructed to ease into resuming eating and avoid any high protein foods due to slow digestion.
At the conclusion of the exam, you will be instructed to hydrate and begin eating slowly. Much like post-colonoscopy, Rocio recommends light meals for a few hours.
Due to Rocio’s extreme nausea and vomiting, she typically does not tolerate the contrast after the exam and tends to get sick shortly after. This is NOT the norm, but she recommends having an emesis bag in your car. As a reminder, if you have taken a sedative, you will not be allowed to drive yourself.
Considerations regarding contrast
While the actual scan experience was more pleasant than I had anticipated, about 3 hours after getting home I started getting terrible stabbing pains in my abdomen and had to run to the bathroom multiple times. At one point my husband came upstairs to check on me because I had been in the bathroom for so long. I was not aware or told that the contrast could cause this type of response. When sharing this on Instagram and after talking with Rocio, I learned how common this is within our community, especially for those who are symptomatic.
An IBD mom whose daughter has Crohn’s shared helpful insight for those who are on special diets or have difficulty tolerating contrast drinks.
Kristen tells me for MRE’s her daughter mixes Miralax in a specific amount of water that the MRI tech recommends, if she had to guess 40-60 oz over an hour. She says this helps prevent stomach cramping and uptick in symptoms. Kristen says some patients on the Specific Carbohydrate Diet (SCD) also drink pineapple juice (Lakewood brand or another organic fresh pressed brand) with Miralax.
“I found through this experience with my daughter that there was not much knowledge about how what you put in your body in the way of contrast, may affect inflamed intestines. Large amounts of sugar alcohol in contrast causes my daughter terrible pains for hours afterwards. Everyone is obviously different, and this disease is unique to each person, but I did a lot of research and we have found that the combo of a biologic plus SCD diet has really helped my daughter maintain remission, for now anyway.”
Kristen’s daughter had bowel resection surgery to remove strictures in her terminal ileum 7 years ago when she was 13 years old. She’s added some food back, but she’s strict with eating only whole foods and great about taking her medication.
Tomorrow on Lights, Camera, Crohn’s hear input and helpful MRE advice from 80 IBD warriors along with how to cope with the mental health aspect of going into a test and not knowing how the results are going to impact your life. As I was working on this article, I found out from my IBD nurse that my MRE results were within normal limits and that there is no evidence of active inflammatory bowel disease. While I’m thrilled and grateful to receive this news, it’s always perplexing when you’re more symptomatic than normal and your labs and scans don’t reflect a reason why.
It’s the first of its kind program dedicated to training dietitians about IBD-focused nutrition. Cedars Sinai Hospital in Los Angeles, California launched its IBD Dietitian Apprenticeship in July 2023.
Registered IBD dietitian Stacey Collins was the first registered dietitian to be selected, participate, and complete the program. I’ve been amazed at all she does for our community and been excited to dig deep and learn what her key takeaways have been from this experience. As someone whose lived with ulcerative colitis since 2012, when she was 21-year-old, Stacey has a unique perspective and approach.
This week on Lights, Camera, Crohn’s we’ll hear about her firsthand experience and why this Apprenticeship program is just what our community needs. The hope is that registered dietitians who participate in the program can take their knowledge from the experience and be able to plug themselves into an IBD Center to build and strengthen an IBD program.
Going up against lack of education and funding
Stacey tells me there is little to no education that they receive in dietitian training on how to do nutrition specific to gastroenterology, much-less IBD, and she says this Apprenticeship program fills the gaps and then some.
“So much of what I learned was through self-study before this program. But in the Apprenticeship, whether I was part of the team rounding on patients in the hospital, or seeing a newly diagnosed patient in clinic, or sitting on the floor with a 3-year-old patient asking about their Paw Patrol toys, I left every encounter feeling that special kind of discomfort and gratification that comes with growth and learning. This was truly a hands-on learning experience from many different sides of the IBD rubix cube, and I’m so grateful I wasn’t learning it all by reading slides from a PowerPoint and taking a test- who learns that way anyway?!”
Addressing the unmet needs
Once registered dietitians complete the Apprenticeship they can work in an academic center or a private practice that values IBD nutrition and has the financial backing to justify the need for a dietitian.
“There are institutions and people in places of power who are advocates for the profession of IBD RDs, and this work is simply impossible without them. IBD RDs have the potential to support patients throughout their journey as an accessible, consistent member of their multidisciplinary care team. Unfortunately, a lot of this potential is systemically handicapped by the lack of funds: RDs are investments rather than quick money-makers for a clinic without physician advocates and creativity, and we NEED people at institutions to see our value,” said Stacey.
The main programmatic goals are to provide a structured, supervised training program for dietitians to learn a model wherein dietitians work together with physicians and advanced practice providers for the care of adults and children with IBD.
Places do exist (and many are coming) that support this multidisciplinary model of healthcare delivery, but there’s such an unmet need, especially for people who don’t have access to these IBD centers. The hope is for this Apprenticeship program to fill the gaps of that unmet need by signaling to physician advocates at these institutions that a nutrition professional with intense training and experience DOES exist, ESPECIALLY for more complex patients who have IBD.
So much to be done for patients Registered IBD dietitians can assess people for malnutrition regardless of their stage of IBD, which is common even in remission and linked to poor health outcomes, along with so much more. Stacey says:
We can help catch micronutrient deficiencies or insufficiencies that many other care team members might miss, and we can correct and monitor them.
We can help patients experiencing food insecurity find ways to nourish themselves within their budget constraints with an eye toward prevention of other comorbidities.
We can help nutritionally prepare patients for surgery.
We can help patients in need of a medical or therapeutic diet intervention find a way to make it a sustainable intervention for themselves.
We can help patients nourish themselves using a whole-person approach, whether they are juggling multiple diagnoses, starting a new job, headed off to college, or too tired to eat: we have tools for helping patients feeling like they can handle it all
We can help prevent re-hospitalizations from small bowel obstructions or dehydration by giving patients IBD-specific tools for understanding their body.
We can save physicians time by inheriting questions about nutrition and/or supplementation regimens, and we can personalize these for each patient.
We can even show GI or IBD Fellows what it’s like to feel spoiled working with an IBD dietitian, and hopefully they’ll advocate to hire one of us wherever they make their final clinical stop
She’s confident IBD dietitians can make nutrition an accessible tool when it so often feels inaccessible with IBD!
Stacey’s top apprenticeship moments that left a lasting impression
Six months is a long time to pick up your life, move to another state temporarily, and fine tune your knowledge and expertise on nutrition and IBD. Here are the key takeaways Stacey says she took away from the experience:
1. Patience with patients is key; everyone is on their own timeline.
“I got to see a doctor celebrate with a patient who finally quit smoking cigarettes for good. After that encounter, he told me that he had been pleading with that patient for 20 years to stop, but he never blamed the patient for having a tough time stopping. He really was empathetic to the fact that they had a lot going on, and he knew they’d get around to it once life allowed. That was really enlightening to see: patients really are doing their best. How can I support them, especially if their timeline looks differently than the expectations that I have?”
2. It doesn’t have to be all-or-nothing; don’t let perfection be the enemy of good nutrition.
“One day I was with Erin Feldman, RD (Cedar’s Pediatric GI and IBD RD). She was listening to a worried mom talk about how she didn’t want her kid to eat sugary cereal, but that’s ALL they would eat for breakfast: it was the sugary cereal, or it was nothing at all. The child was exercising their choice autonomy and exploring what that looked like around mealtimes, and it was a challenge for the parents. Erin had a rapport established with the family, and I could see that they really trusted her. Plus, Erin is a mom, too, so she speaks the same first language as parents, and she really empathizes with the fact that many IBD parents are blamed for their child’s symptoms or disease. She truly met the parents right where they were at that moment.”
“Instead of focusing on the PERFECT breakfast with beautifully-balanced macronutrients and color that the child certainly would refuse, she said, “What if you just added PLAIN Cheerios and a couple of raspberries to their sugary cereal, that way they’re getting some antioxidants from the berries and a more diverse source of grains into their breakfast?” It was TOO easy, and the parents were like, “YES. We can do that.” and just like that: not a perfect solution, but a practical intervention that would work for where the child is right now.”
And that’s the power in having multiple touchpoints to a dietitian: next time they see the doctor again, they’ll see Erin, too, and they can make more adjustments for how life is being lived around food at that stage, too. So often people have the ambitious idea of going from zero to specific carbohydrate diet (SCD) all in one encounter, and the reality is that often multiple conversations and coordination of resources are needed, and meeting patients where they are looks different for everyone.
3. Nutrition interventions can be hard, and multidisciplinary support really is key.
“So often as dietitians, it’s easy to get stuck in the weeds of research and to get excited over interventions that have promising outcomes. This happened with a patient needing Exclusive Enteral Nutrition, but ~5-7 days into it, they were uncomfortable, and they really missed food. I was able to have a conversation with the patient alongside their doctor in the same room, who patiently reiterated our rationale behind the intervention and said, “not if it compromises your mental health. Let’s stop it if your brain is telling you we need to stop- we need to respect that. You should be proud that you tried this, and now you know!” And I could tell the patient was so relieved to have reassurance from their doctor that no matter what THEY chose for THEIR body they’d be supported by their doctor and by their dietitian. It really does take a team.”
4. GI Doctors REALLY do not get exposure to solid nutrition in their training
Kelly Issokson, MS, RD (Clinical Nutrition Coordinator, Course Director: DIET Executive program, Apprenticeship Director) arranged for Stacey to lead a learning session with the GI Fellows at Cedars, and in a room full of some of the smartest and most compassionate clinicians.
“They wanted to know all about the different nutrition interventions that we can recommend for patients. It felt like they had been rewarded for being the best of the best all by themselves their whole lives, and now they had an opportunity to learn more about how to collaborate effectively. They were all so enthusiastic.”
Stacey noticed after that session that the GI Fellows felt comfortable texting her while on rounds if she wasn’t there to ask if she’d stop by a patient’s room, or they’d text to ask about B12 supplementation after remembering to screen for a deficiency.
“They really understood the value that IBD RDs bring, and it’s not because I’m a great public speaker (I’m really not); it’s that they had this additional exposure to working with a dietitian with specialized training. This really made everything click for me: doctors don’t always know the right questions to ask patients about our nutrition needs, because most of them haven’t had the education OR the exposure to team members with the expertise to be truly helpful for patients. Working in silos keeps patients isolated, and I’m hopeful that the GI Fellows, when/if they leave Cedars become physician advocates to ensure that their patients have access to an IBD experienced RD.”
Plans for the future
When Stacey completed her Apprenticeship this winter, she did not envision returning full-time to her online private practice. She thought she’d start working at an academic institution, because the purpose of the program is for the dietitian to seamlessly integrate into a multidisciplinary GI care team.
“I am still holding out on hope that one day I could have both (but I’ll never give up my private practice- I love it so much). Truthfully, I’m thrilled to be back with such a passion for teaching patients how to implement some of the skills that I’ve learned into their own life, plugging it into their existing care teams, even if I’m on my own in private practice. I already helped patients through perioperative nutrition before this program, but now I’ve got some RICH resources to help make IBD surgery and nutrition really make sense for patients now in a much clearer way,” Stacey explained.
She’s able to take the research that they did from the perioperative IBD Nutrition program that exists at Cedars and put it into practice with her patients, and it’s a bit of a full-circle moment for her, having lived through IBD surgery with limited support.
“I’m a much better listener than I was before this program, a skill I learned from Kelly Issokson, MS, RD (Clinical Nutrition Coordinator, Course Director: DIET Executive program, Apprenticeship Director). Additionally, I’m more practical in my approaches and meeting patients where they really are, too, a skill I learned from Erin. I’m working on some ways to expand IBD RD accessibility, too. I’m a much more confident advocate on behalf of my patients now, too.”
Advice for the newly diagnosed
If you’re reading this and you or a loved one was recently diagnosed with IBD, ask your GI doctor to hire an IBD Dietitian. Stacey knows this doesn’t exist in most places, and as a patient, she understands how silly it is to constantly be burdening patients with requests. But the field of IBD Nutrition exists because enough patients asked, “What can I eat?” and enough doctors paid attention to it to be documented research. This is the next piece of the puzzle.
If your care team provides a registered dietitian who doesn’t specialize in IBD, that’s not going to cut it. Be assertive in asking your GI office to hire an IBD Dietitian, or invest in training their Dietitian, if they really want to help their patients.
Stacey advises patients and caregivers to stay off online forums. There’s so much food fear there, and life is bigger than that. Lastly, she advises reaching out for help. Even if Stacey may not be a good fit for you, she’s happy to provide patients with other RDs that she’d enthusiastically see, because an informed decision is a good one.
During her Apprenticeship, Stacey chose to do a research project to examine the effects of malnutrition and perioperative nutrition supplementation on surgical outcomes in people getting IBD surgery, whether that be for j-pouch, permanent ostomy, lysis of adhesions, or a resection.
“We had a small sample size (n=25). Regardless, we found that perioperative nutrition supplementation had a statistically significant impact on decreasing the length of stay, meaning that greater adherence to the nutrition supplementation protocol was associated with a shorter time spent in the hospital. Regardless of nutrition status (malnourished or not), everyone seemed to benefit from the nutrition supplementation protocol that we recommended for before and after surgery.”
Stacey is hopeful that more research with an even larger sample size will help inform these results so that this can be a resource more widely available for patients!
The future is bright
“If I dared to dream about what this could look like in the future, the closest possible model in existence is at UCLA under Dr. Niru Bonthala who is the Director for Women’s Health in IBD. Basically, I see the RD’s role evolving to cover every nutritional aspect of IBD with specialized knowledge to support patients in each life circumstance: from surgical prehabilitation to home nutrition support (TPN or EEN) and transitioning back to eating; to the overlap of eating disorders; to fertility and perimenopause; from anywhere along the spectrum of LGBTQIA+ care and/or transgender care; from peds transitioning to adult care, and even adults to aging adults; even athletics and/or eating disorders.”
There’s a rich opportunity within all these Venn-diagrams for a specialist interest and training to exist in IBD Nutrition, and this learning opportunity exists at Cedars.
“I’d also love to see the RD in an outpatient clinic even able to do community outreach: teaching basic cooking skills, procuring menu items for their medical diet (and beyond), and even showing patients and their families what this could look like by partnering with local food banks. Again, this is just me dreaming here in a world that I think should exist for people who have IBD and for RDs who are trained in IBD Nutrition,” said Stacey.
The current IBD Apprentice Yi Min Teo (@herbsandfood) came from both clinical and private practice backgrounds like Stacey. Yi Min will finish her training in July 2024. The program is supported by a grant from Leona M. and Harry B. Helmsley Charitable Trust.
In addition to dietitians wanting more IBD nutrition education, there’s also an Executive Program for MDs/DOs, APPS, and includes both virtual and in-person learning opportunities. You can apply here.
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