Kids are more intuitive than we tend to give them credit for. They are always watching us and even before they’re able to speak in sentences they have an innate sense of empathy and understanding. As an IBD mom of three, whose kids are almost 7, 5, and 2.5, I’ve started to think more lately about how to explain my Crohn’s disease to them in a way that will educate them, without scaring them. It can be a difficult balance.
I know my older two know mama gives herself shots, often needs to run to the bathroom, and gets “tummy aches” but I haven’t yet dropped the term “Crohn’s” or “disease” to them quite yet. It can be hard to explain and sometimes when I start trying to share more, I feel like it’s still going over their heads. Their concerned eyes when I’m in pain and how they watch me do my Humira injections is a reminder to me that they are aware something is going on. As we potty train my youngest, he commends himself for going on the potty by saying he’s “just like mama” …ah, what a great analogy!
This week on Lights, Camera, Crohn’s hear from several IBD parents about how they transparently communicate their experiences with Crohn’s disease and ulcerative colitis. It can be a fine line educating and being open, while also trying not to overwhelm and scare kids. I’ve found it extremely helpful tapping into the community and gaining input from others and I hope you do, too!
Helpful Guidelines for Navigating the conversation with your kids
Choose the right time. Pick a time when you won’t be interrupted and can focus on the conversation. Ensure it’s a moment when you and your children are feeling calm, at ease, and open to discussion. My recommendation as an IBD mom would be to have this conversation on a “feel good” day—rather than when you’re flaring or in the hospital.
Prepare yourself. Decide in advance how much detail you want to share based on your child’s age and maturity level. IBD is complicated, be ready for a range of emotions including sadness, fear, and even anger.
Use age-appropriate language. Explain your IBD in a way that is understandable to your child. Avoid using confusing or technical terms. For younger kids, it might be helpful to compare your illness to something they already understand.
Be honest but reassuring. You can be transparent and truthful, but also reassure them about all you do to manage and control your IBD. Empathize with the aspects of your daily life that won’t change, to provide them with a sense of stability and comfort.
Focus on practical impacts. Explain how your IBD might affect your daily routine or activities with them in a straightforward way. Use examples such as—“Mommy’s Crohn’s can be unpredictable, I may say we’re going to the park, but then I don’t feel well so we have a movie date and snuggle instead and plan to go to the park another day.”
Encourage questions. Allow your children to ask questions and express their feelings and know this will be an ongoing conversation throughout life. Go into the conversation without expectations. It’s ok to admit if you don’t have all the answers. You can explore some of the questions together.
Provide continuous support. Let your kids know that it’s okay to have and express their feelings about your IBD. Offer them ongoing support and reassurance. Let them know they can always come to you with questions or concerns at any time.
Seek support when needed. Consider enlisting the help of a therapist or a counselor, especially if you or your children are struggling to cope. Joining support groups and tapping into the online patient community and connecting with fellow IBD families in similar situations can be beneficial.
Keep the conversation going. Check in with your children regularly about your IBD and how you’re feeling. Be casual about it. Share when you see an opportunity to teach or calm fears that your kids may be internalizing.
Highlight the positives. While acknowledging the challenges, also focus on the positive aspects, such as the strength of your family unit or the support you have from friends and community. I always tell my kids when I’m doing my injection that mommy is strong, and we can all do hard things.
By approaching the conversation with honesty, sensitivity, and openness, you can help your children understand and cope with your chronic illness in a healthy way.
My 2-year-old trying to make me smile during a rough day in the bathroom.
IBD as a family disease
There’s a common saying in our community that IBD is a family disease, in that whether you have Crohn’s or ulcerative colitis or not, if someone in your nuclear family has it, the disease impacts your living experience in some way.
Emily and her husband have IBD and so do their three daughters, so discussions about IBD are frequent in their home since it’s a living reality for all five of them. She tells me the conversations tend to fall in one of the following categories:
1) Explanations of IBD details, procedures, surgeries, or diet needs for a member (or members) of the family.
2) Discussions to calm anxieties in one child about the presentation of IBD in themselves or in another family member.
She says the second category tends to be the more challenging conversations, by far.
“In the first category, we tend to stick to factual, age-appropriate explanations. For example, when our five-year-old needed to know about scopes and surgeries, we explained that a specific family member has “belly problems” and the doctor is helping by taking pictures of their belly and fixing the parts that were causing trouble,” explained Emily.
As the girls have gotten older, Emily says they add details about how the doctors do different procedures – always led by their child’s level of interest and desire for the knowledge.
“We are always honest about pain or discomfort related to medical procedures. Many things are NOT painful, and we want them to trust us that something does not hurt if we tell them. This has served us well. When surgery was needed for one daughter, we discussed how she would be sore afterwards, but we had ways to help the pain until it would subside. This was undoubtedly a challenging time for us, but our daughter did amazing,” Emily said.
As Emily’s girls have gotten older, as a preteen and teen, they understand more about their parents,’ and their own, IBD. They have lived through surgeries and many medical procedures in their family. Emily says now the more challenging conversations have started, related to knowing the possibilities around IBD.
“For example, I had a colon perforation following a routine monitoring scope for my IBD. It was a rare event that we are all warned about prior to a colonoscopy. It resulted in a more significant repair surgery and several days in the hospital. My daughters are old enough to realize that they also have scopes regularly and we had to have some discussions about the chance that the same thing could happen to them. It was challenging for our family for a few rounds of scopes!”
Emily says they addressed this topic mostly by focusing on the “helpers” as the iconic Mr. Rogers would! Yes, bad things can happen, but she reminded her daughters that they are so lucky to have doctors and medical professionals to “fix” these problems. She reminds them that they are lucky to have family and friends to help when they are not feeling well. She also talks about how they are lucky to have each other – who understand the ups and downs of this disease.
“This narrative has gotten our family through many challenges! I talk with my oldest daughter much more now about the details of her IBD. She is a teen and has had more than her fair share of IBD troubles. She has watched me deal with my challenges too. We are open with each other about the negative parts, and our frustrations having to deal with IBD. It is a double-edged sword to have her growing up! On the one hand – I hate that she is old enough to really understand the negatives. But she is also turning into an amazing young woman who is one of my closest confidants with this disease. We understand each other’s highs and lows like most cannot. We supported each other in challenging times and celebrate together for each win!”
Sari says she bought a couple of children’s books that feature a caregiver with chronic illness.
“One of them is titled ‘Some days’…it’s about a mom with multiple sclerosis, but it works for IBD, too. It goes over how some days are more exciting and others are simpler more restful days. If there are other kids’ books people have found, I’d love to hear about them!”
Kate also has a book by someone with Crohn’s, but says they’ve also always been very honest and open about it with her son.
“I always worried he would tell people too much, but I’ve found he’s incredibly respectful and it has made me feel less shame in my body because I talk to him so positively about it. Especially the perianal disease, which has been really hard to talk about with people. My son is six and understands my immune system attacks my digestive tract. We also have a puzzle of the body we have played with for years and he knows the colon, intestines, rectum, etc. because of that.”
Becca says one of her favorite memories as an IBD mom is when her daughter was learning body parts and said, “Mommy and I have vulvas, Daddy has a penis, Daddy and I have butts, and mommy has a bag!” She also often asks to see her “cut” on my belly (c-section scar), but I constantly remind her that she shares her “cut” with a lot of intestine.”
Becca also says for the longest time her daughter thought that EVERY mom gets an ostomy bag when they’ve had a baby.
“She didn’t realize I had mine for four years before she was born!”
As an IBD Dad, Brandon said he stumbled upon a video series when his son was around age five that provided a solid explanation. At the time his son had a broken arm.
“The video explained people have booboos you can’t see. I explained that I had what the girl in the video has. Nowadays, I show both my boys’ photos from my colonoscopies.”
You can watch the video Brandon showed his son here.
Here are additional books about chronic illness that others have recommended:
Did you know within the next decade, one in three IBD patients will be over age 60 and that right now, adults over 60 make up the greatest portion of the IBD population? As someone who was diagnosed with Crohn’s disease at age 21, who is now 40, I’ve started to think more about what managing and living with IBD will look like as I continue to age. Managing IBD in older adults is complex and requires considering each person’s individual risk of complications and co-morbidities.
This week on Lights, Camera, Crohn’s a look at the research that’s available and what we can expect as an aging patient population. Before we get started, it’s important to note there are two groups—adult-and-pediatric onset IBD who are getting older and then a group of people who are diagnosed later in life (after age 60) referred to as “elderly-onset IBD”. Every review I saw online uses age 60 as the benchmark to differentiate these two groups. Elderly onset makes up about 10-20% of patients who are newly diagnosed with IBD.
Unfortunately, there’s limited data and studies that have followed patients for 20-plus years, so we don’t know a ton about how aging impacts patients who were diagnosed as pediatrics or as younger adults compared to those who are in their later years. While there’s a well-known belief that IBD can “burn out” as we age, meaning that symptoms for some quiet down, that is of course not the case for all.
Considerations when treating IBD in older age
Have you ever talked to your GI about how your IBD will be managed as you age? I know I haven’t. I feel that there’s so much to focus on in the “now” it can be overwhelming to think about how we’ll take care of ourselves 20-40 years from now! As we surpass age 50, there are important discussions to be had.
What patients and providers need to consider:
Risk of disease and treatment related complications
Tolerability of IBD therapies, which is unique to each person’s personal experience
Drug metabolism and how it alters with aging
Body composition changes which include a reduction in total body water and an increase in total body fat.
The delicate balance of disease-related risks vs. treat-related complications.
Risk of adverse events from medications vs. benefit shift (higher rates of infections, malignancy, and drug intolerance).
Given these factors alone, the way in which IBD is managed in older age isn’t as clear cut as when we’re younger. With both thiopurines and biologics, older patients are more likely to discontinue treatment. Older adults may value symptomatic remission (and quality of life) more than mucosal healing.
This study entitled, “The elderly IBD patient in the modern era: changing paradigms in risk stratification and therapeutic management” states, “Despite elderly onset IBD presenting with a less extensive or aggressive phenotype than adult-onset IBD, its disease course is not necessarily more benign. In Everhov et al.’s work, 22% of elderly onset Crohn’s patients underwent surgery by 5 years, although the rate was lower in UC patients (6%). Similarly, the cumulative probability of surgery at 10 years was 32% in Crohn’s patients compared with 8% in UC in another population-based study.”
According to an article in Time called “The Connection Between IBD and Aging”, whereas IBD was once thought as a disease with two spikes in onset—20s to 30s and 40s to 50s—doctors are learning there is a third spike that begins later in life. For those of us who are diagnosed when we are younger, our bodies have lived with decades of damage the disease has caused, often we’ve had surgery, been on medications with serious side effects, and ongoing flare-ups for much of our lives. For those who get IBD after 60, rather than seeing damage in various parts of the intestinal tract, more activity is seen in the colon.
The article goes on to say, “It’s no surprise IBD causes chronic inflammation, and so does aging. So, as we age with IBD, we’re at greater risk for inflammation linked-health issues, including cardiovascular disease, cancer, hypertension, chronic obstructive pulmonary diseases, chronic kidney diseases, obesity, skin issues, blood clots, arthritis, dementia, and skeletal muscle loss.”
Comorbidities and IBD
According to the Crohn’s and Colitis Foundation, people who have Crohn’s may also have a better quality of life as they age, partly thanks to modern medications and less use of steroids long term, which can trigger bone loss and cataracts over time, among other symptoms. Steroids are the most dangerous medication we have to treat IBD, sometimes of course they are necessary, but long-term use should be avoided at all costs.
People over 60 are more prone to infections and have a greater likelihood of being on medications for additional health conditions. They also often have visual, cognitive impairments, risks for falls, and surgery complications.
Underrepresentation in clinical trials
One of the main reasons we lack data about IBD in older age is because this population of patients is often excluded from clinical trials. This study from The Lancet Gastroenterology & Hepatology says, “A deeper understanding of biological and functional age, dynamic risk stratification strategies (including frailty-based risk assessment tools), comparative effectiveness and safety of current therapies and treatment strategies, and shared decision making to inform treatment goals and targets is needed to improve outcomes in older adults with IBD.”
A Crohn’s and Colitis Foundation study found that clinical trials for biologics only included 1% of people over age 65. How can patients feel safe about being put on biologics when there isn’t research to back up the safety and efficacy of these heavy-duty medications when they reach that age bracket?
As far as menopause goes, we still don’t know much yet about how this impacts women and the role it plays in disease course. Some small studies have found a modest protective role for estrogen-replacement therapies for IBD activity. But there’s more research needed in this area. According to the Crohn’s and Colitis Foundation menopause may begin earlier in IBD patients, but this does not appear to have any negative effect on disease activity or progression. Women with IBD are at greater risk for osteoporosis in menopause, this is why it’s so important we’re proactive in younger age by getting bone density tests and taking calcium and vitamin D supplementation (if labs show you’re deficient). I have taken 50,000 IU of Vitamin D once a week for years to help combat bone loss and this past year I started seeing a Bone Health Doctor to keep a close eye on my osteopenia. My GI told me during my clinic visit this month he wants me to take 2 Tums a day for added calcium.
As far as men, aside from methotrexate, IBD medications do not usually cause erectile dysfunction. Ileal pouch anal anastomosis (IPAA or J-Pouch) surgery, while sometimes associated with loss of sexual function, is not associated with erectile dysfunction. There’s also no known connection between IBD and prostate cancer.
Patient inputfrom those who are 60-plus
Patti says her age has changed how she manages her IBD.
“I’m 60 years old. Mostly, I compartmentalize social outing to 2 hours at a time. If I extend it, I’m exhausted and feel crummy for the entire next day or two. If there’s a situation where I know it will have to be more than three hours, I make sure to rest and eat less the day before, and then eat minimally until the last hour or so of the outing. This way, I don’t have to feel like I’m running on empty during the entire outing, and I can prepare to be home for whatever the food decides to do, in addition to the exhaustion and pain that I know are coming.”
Patti went on to say that she feels her Crohn’s brought on menopause sooner, but also that her Crohn’s may have masked menopause symptoms because she was used to low-grade fevers and sleep interruptions.
“I found out I was post-menopausal at 50 and I basically missed the transition (the symptoms). I took that as a win (ha), but I do feel like my body is older than my age. I can’t really explain why, but the constant inflammation, plus my body trying to resolve it—I believe it’s taken a toll on my aging. But recently turning 60 feels AMAZING. TO be sick since I was 8 years old and have fought my way to my sixth decade feels like I climbed a mountain! I’m proud of how hard I’ve fought all these years, while still thoroughly enjoying life, my marriage, my daughters, and my career!”
Heidi was diagnosed with Crohn’s at age 50 after years of being told she had IBS. She found out in July 2023 that she had a” severe Crohn’s reoccurance after 5 years on Stelara. Her options were Skyrizi or Rinvoq since she has a history of TNF inhibitors failing her. Even though Rinvoq had a slightly better chance of putting her in remission, her and her care team thought Skyrizi would be a safer option due to her age. Rinvoq has a warning regarding increased cardiovascular events, such as heart attack, stroke, or death in people 50 years or older, along with risk of blood clots.
“If I don’t respond well enough to Skyrizi, we will then try Rinvoq, but the safety profile seemed better especially for me being over 60, and that’s important to me. I also worry about what is going to happen when I retire and my medical insurance goes from commercial to Medicare! I think they often have a deductible that is much higher than commercial insurance.”
Heidi was also diagnosed with osteoporosis in her 50’s and took treatment for it for 5 years.
“My risk for fracture still increases as I age, so my GI ensures I have DEXA scans every 2 years.”
Brenda had diverticulitis for a few years, and beginning in December 2011 she started having other bowel problems. She went straight to her general practitioner, and he ordered a colonoscopy, which confirmed her Crohn’s disease diagnosis at age 63.
“After many failed medications, I had part of my colon removed and I had a temporary ileostomy. Unfortunately, I got an abscess which made me really sick and in 2015 I had more colon removed and the stoma was made permanent. Since that surgery, I’ve been quite well and basically get on with my life without any IBD medication.”
Brenda is now 75 and worries about getting sick again and needing additional surgeries. She also worries that as she ages that one day she may not be able to deal with her ostomy bag herself and that concerns her.
Keith has ulcerative colitis and his wife was diagnosed in her 20s with ulcerative colitis. Her IBD was under control for years until she was hospitalized 20 years ago. She underwent her first operation then and it was successful. Fast forward two decades and she flared and required additional surgery.
“She’s doing ok now, but both surgeries were a result of her bowel narrowing.”
Jody is on Remicade and is currently in remission. She started with colitis in her 20s and then her diagnosis shifted to Crohn’s in her 60s. She’s in her early 70s now. She’s tried several biologics and medications.
“Not sure when I started Remicade. I have tried a few before and they were either too expensive or I had issues with them. I am in the United States so our insurance is not easy. I also have taken Mesalamine for years for colitis, which has worked great but it’s another expensive drug, so the prescription was cut in half due to cost a few years ago.
Sherry hasn’t changed much in her 44 years of living with Crohn’s, but has more of a focus on an overall healthy lifestyle.
“I’ve gotten better at avoiding trigger foods and being more diligent taking necessary vitamins. I’ve always been active (weight training, golf, and skiing) and remain so if not more these days. The introduction of biologics has obviously been a game changer a huge benefit.
Jeff says gastroenterologists seem to believe you more as you age.
“As you get older, more things in your body are broken. It’s a balancing act as to what is most critical. You also start running into unknown territory for GI docs, as many treatments do not have much data, if any, for seniors. GI docs do seem to believe you more when you need help.
Kanchan is currently 74. She has had a J-Pouch since 1989.
“For the last 4-5 months I am making probiotic yogurts at home and the last month I started making Kefir. I’m hoping for good results.”
Sherri– “I was diagnosed with IBD in 2015 when I was 56. I’m tired of the whole thing. What’s going to happen when I can’t look after myself?”
Closing Thoughts
It’s important for us to work closely with our healthcare teams, not only gastroenterologists, but all specialists, to manage IBD effectively as we age. It is beneficial to check in with a registered IBD dietitian, as aging may affect the body’s ability to absorb nutrients. I often wonder if when my kids are in high school or college (my youngest is 2.5!), if I’ll play a little Russian Roulette and try going off my biologic. I’ve been in surgery-induced remission since August 2015 and if this continues (God willing), I think I will try. Right now, as an IBD mom of 3 kids (ages 6, 5, and 2.5), I don’t feel confident enough that I won’t flare and need to pull out all the stops I can, so I can be present and well for my young family.
There’s a delicate balance with each decision we make along the way and the best we can do is advocate for ourselves, be proactive and take measures now to be healthy, do our research, and stay as educated as we can about what’s coming down the pipeline for the IBD community as we age. By controlling inflammation in our younger years, we can help improve our future quality of life and prevent age-related symptoms.
When you’re diagnosed with Crohn’s disease or ulcerative colitis it’s a lot to process. When I started this blog in 2016 and after living with Crohn’s for nearly 19 years, my focus has always been to be the voice I needed to hear upon diagnosis and what it was like to experience young adulthood with a chronic illness. As a 21-year-old, fresh out of college, I had to navigate my career, finding love, and becoming a mom with IBD on my own. The first decade I wasn’t publicly sharing my story and didn’t know there was a patient community to tap into online for support.
The first week I started experiencing Crohn’s symptoms-March 2005, Senior Spring Break in the Bahamas
Often as the years go by and we get beyond the initial shock of hearing the news and what this means for our lives, we tend to forget the challenges we faced to gain our footing. This week on Lights, Camera, Crohn’s I share some tokens of knowledge I’ve gained along the way that I hope will help you on your own journey, no matter where you find yourself at this moment.
Healing—physically, mentally, and emotionally is not linear. We all experience IBD uniquely—some people’s disease course is milder, others have it severe. We all cope differently with knowing and living with a chronic illness. Give yourself grace in the difficult moments. It’s ok to feel resentment or anger. It’s understandable to wonder at times “why me.” It’s “normal” to feel scared and anxious whether you’re a few weeks or a few decades in. Sometimes it’s taking things one hour at a time, other times it’s taking them one day at a time. Because of how quickly a flare up can strike, I try to live in the now and not worry about tomorrow.
You didn’t have control of getting your chronic illness, but you can control how you react and choose to heal from it. It’s easy to feel like you may be to blame if your health takes a turn for the worse. But understand this is not your fault. The unpredictability of IBD makes it feel like we’re often in the passenger seat and spiraling in circles, but this disease cannot control how you react, respond, and choose to heal from it. No matter what, you’re in control of the healing process. Whether it’s finding support through fellow patients and caregivers or through professional therapy, you won’t look back and you’ll be setting yourself up to take this on to the best of your ability.
There is no comparison game. Since the majority of people are diagnosed with IBD in their teens and into their 30s, it can be easy to try and measure your timeline and accomplishments to that of your peers who do not have chronic illness. It can also be tempting to look at people in the patient community who seem to have the world by the tail, when you’re struggling to get out of bed each day. This isn’t a competition of the sickest or a ploy to see who can smile through the pain and get more done. The only person you need to answer to, is who you see looking back in the mirror. You determine what you’re capable of and what you want in life. Your roadmap is yours and you’re right where you’re meant to be.
You set the benchmark for what’s possible. Your IBD is part of you, but it’s not your entire identity. Remember that even patient advocates are posting somewhat of a highlight reel. Even those who are working, in love, and parenting are dealing with their own struggles, too. My best advice would be to think about what you hope for in life (don’t even think of your IBD as part of the equation) and go after it. Yes, your health may cause some detours and roadblocks, but you won’t find your way unless you try.
No one knows your body better than you. I don’t care how many letters someone has after their name, they aren’t living in your body and experiencing what you feel each moment of every day. Be vocal when you need to be. Communicate as much as you can with your care team and paint the clearest picture of your reality. If you keep parts of your struggles to yourself or dumb down the severity of your day-to-day life, the only person you’re hurting is yourself. Learn about nutritional bloodwork and advocate for yourself to be tested for a full iron panel with Ferritin and Vitamin D. Get labs every 3-4 months so you can keep a finger on the pulse of what’s going on with your body. If you feel like your provider is being lackadaisical, don’t hesitate to get a second opinion. Take ownership of your health and find a provider who in your darkest moments you would feel most comfortable by your bedside in the hospital.
Make sure your GI specializes in IBD. There are gastroenterologists and there are gastroenterologists who specialize in Crohn’s and ulcerative colitis. Once you’re diagnosed with IBD, it’s imperative you try to find a GI who is an IBDologist. This can be tricky if you live in a rural area, it may mean you need to travel several hours to find a provider who fits the bill. If you move or are unsure of a good GI to check out, it’s helpful to reach out to your local Crohn’s and Colitis Foundation chapter and often they can help point you in the right direction.
Diet and stress levels matter. Read that again. Any doctor who tells you diet, and stress doesn’t impact your disease process is wrong. There are incredible registered dietitians throughout the US who specialize in IBD, and many of them have IBD themselves! Before you start restricting yourself or your child, make an appointment—most provide virtual options and this will help you get educated on what works best for you. What is a trigger for one person, isn’t necessarily a trigger for another. There isn’t a one-size-fits-all diet or else we would all do it.
Emotions will strike when you least expect them. Even almost 19 years in, I’ll sometimes break down and cry when I think about my Crohn’s or how it makes me feel. Just because you become a veteran patient doesn’t necessarily mean you fully ever heal from the hurt life with a chronic illness causes. It’s ok to have these moments where you may feel like you’re allowing your disease to control your emotions, you’re not. You’re human. It’s healthy to feel frustrated and to get emotional about what your life is like because you have IBD.
You’ve endured more than you give yourself credit for. As chronic illness patients we go through so much that often we don’t even bat an eye over experiences that would be extremely painful or stressful to the average person. Think about what a bad ass you are and how that carries over into each and everything you do in life. If you’re newly diagnosed you will get there—but even those initial weeks and months, you’re enduring more than the people who have their IBD under control and have a good handle on their body. No matter how many surgeries, scopes, scans, and IVs I’ve had, I always get a little teary eyed because it brings me back to 21-year-old me and then all the trauma that comes along with living with Crohn’s for 19 years. While those tears are sad, they also come from the strength of reflecting on what I’ve gone through to bring me to now.
Stay in tune with how your body is speaking to you through symptoms, do not ignore them. It can be challenging to communicate what you’re feeling to someone who does not have IBD. I get that. But by protecting loved ones, friends, and doctors from what you’re experiencing you’re preventing them from stepping in before it’s too late and before you know it your flare has gotten out of control and requires hospitalization. I used to be that person all the time. I would always internalize the pain, silently fighting through each day, doing anything possible to stay out of the hospital until the symptoms were simply unavoidable and required medical intervention. One hospitalization always sticks out in my mind. It was May 2009. I was a 25-year-old morning news anchor in Wisconsin. I was solo producing a 2-hour morning show dealing with horrible abdominal pain that kept making me throw up in the garbage can next to my desk in the newsroom as I struggled to put together the show. Finally, I couldn’t take it anymore and I had to call my co-anchor, who rushed me to the hospital. I was released from the ER hours later after my parents had driven from Chicago in the middle of the night only to return to the hospital that afternoon and have my dad carry me in his arms through the automatic doors. I was finally admitted and given the medical intervention I needed. Take it from me, you’re creating even more of an uphill climb for yourself if you don’t start speaking up when you initially notice something is awry.
The worst moments are just that, moments. When you hit your breaking point, when the pain seems overwhelming, and you can’t see the forest through the trees try to breathe. Go to your happy place. Recognize this is one day, one moment, I always tell myself “This too shall pass.” Go to your happy place mentally. Do mindfulness exercises. Shut out the outside world and focus on your breath. Detach from your body as best you can. Think of people who inspire you and bring you joy. Everything is fleeting. Each flare, each recovery, each prep, procedure, and surgery…it has a start and a finish. One day it will be a memory you talk about.
Pay attention to who is there when you when are quiet and when you’re going through the thick of it. IBD is too big to deal with alone. Lean on people you can trust, who you genuinely feel safe sharing your health woes with. This will be fewer people than you’d ever imagine. Be prepared to realize that many of the people you thought would be front and center to support you will be non-existent. It’s fine to mourn those friendships or relationships, but don’t waste your time or energy on them. Your disease will give you the ability to see who loves you and who wants to be present in not only the good times, but the bad. You can’t change people. Hold on tightly to the people who show up consistently, expecting nothing in return. Those are your people.
Emmanuel Acho shared a reel on Instagram recently that really hit home for me and caused me to reflect a bit on the people in my life and their roles. In the video he explains that friendship is like a house. You have your window, door, and floor friends. Window friends are outside looking in, they don’t know what’s going on in your house. They don’t have intimate access to what’s going on in your life. You can only let so many people into your house. Door friends come in and out of your life depending on the season. When life gets too hard or when your world turns cold, they might exit. Your friends might not be equipped for that season. Floor friends—aren’t going anywhere. You might track mud, but they will last regardless of the season. They are there to catch your tears and hear your fears. Remember—a house has more windows than it has doors and more doors than it does floors…if it has one good floor, you’re set.
Just because you need medication does not mean you’re taking the easy way out. I’ve been where you are. I remember lying helpless in a hospital bed and what it felt like to be told I needed to “break out the big guns” and start a biologic medication back in 2008 when there were only two options on the market for those with IBD. In that moment, we all naturally want to learn about side effects and what this could possibly mean for the long term. But please try and focus on the actual risk versus the benefit. As someone who has been on Humira since July 2008, I’m so grateful for my medication for allowing me to live a full life, bring babies into this world, and be a present, able-bodied, and active mom. It’s not all medicine, or all diet and lifestyle, often for many of us who have moderate to severe IBD we need a mix of both, and that’s ok. You can still thrive and be healthy, despite being on a medication with a black box label.
You are not a burden, and you deserve love. Any romantic partner who makes you feel less than, isn’t present when you need them most, or doesn’t show any empathy or interest in your daily reality isn’t going to stand the test of time. Use your IBD to your advantage to see your partner’s true colors. Be honest and upfront when you start dating and if you ever feel like you need to defend their actions or make excuses consider that a major red flag. Dating and marrying a person with a chronic illness isn’t for everyone, and that’s fine—but when it comes to people like you and me, we need a partner who is willing to take the challenge on beside us every step of the way. Find someone who you feel comfortable communicating openly with, who sees you for more than your disease.
IBD is not a battle to be “won” or “lost.” One of my pet peeves with any health condition or disease is when people say “so and so lost their battle”…they didn’t lose shit. Diseases are not a game. Oftentimes reaching remission is due to luck, disease severity, or surgery. I spent a decade of my life with active disease and have been in remission (thanks to surgery) for almost nine years. I don’t give myself credit for that, I’m not “winning.” It’s because of my efforts to stay diligent with my biologic, vitamins, safety labs, daily decisions, and check-ins with multiple specialists, but I also don’t think I’m at this point because of something special I’m doing compared to someone else. We’re all dealt a different hand of cards in life. Your IBD isn’t a win or lose situation—you’ll celebrate big victories and small ones, too, your disease can rob you at times, it’s a never-ending exchange and game of back and forth. You are not less than because you are flaring. You are not lazy for taking medication or failing because you struggle to follow a strict, regimented diet that may or may not help you. Once you stop thinking of everything as a “fight” it takes a bit of the stress, anger, and onus off your shoulders. IBD is a chronic illness, until there’s a cure, we’re in this situation until the day we die…that’s simply too long to be “fighting” anything.
Get ready to be extra proactive with your health. Due to the nature of our IBD and the medications many of us take, we are at greater risk for additional health problems. It’s important to get annual skin checks at the dermatologist. Make sure whether you have good vision or not that you’re seeing an eye doctor. Get cleanings at the dentist at least every six months. If you’re a female, make sure you get your well woman visits. We are greater risk for cervical cancer because many biologics don’t allow our bodies to fight off HPV, this may mean annual Pap smears. We’re also at an increased risk for breast cancer, so don’t delay your mammogram. Get a bone scan every 3-4 years, get one as close to diagnosis as you can so you have a baseline. Your GI may say it’s not necessary, it is. Steroids put us at risk for osteopenia and osteoporosis from an early age, this may mean you need to see a bone health doctor (yes, those exist). Those of us with IBD are at greater risk for pelvic pain, it can be helpful to see a Pelvic Floor Therapist who addresses those unique needs.
Faith can give you added strength and comfort. I understand faith is very individualized and looks different for each of us, but I can tell you as someone who is Greek Orthodox who has always been a faithful and prayerful person that I rely on my faith to guide me through my IBD each and every day. There’s a sense of comfort and hope that comes with believing God is watching over you through the good, the bad, and everywhere in between. When you’re diagnosed or flaring, it can test your faith. Hold on tightly to what you believe and lean on that (however it looks for you). I truly believe God gives his toughest lessons to his greatest teachers. One of my biggest fears as an IBD mom of 3 is that one of my children will get my disease one day. Each night before bed, I always pray with them and say, “keep my babies healthy, safe, and strong.”
My why. My motivation to push through each and every day.
Family planning takes time and effort. Just because you have IBD does not mean you can’t be a biological mom or dad one day. The journey will look a bit different, but this disease does not necessarily need to rob you of the experience if that’s what you want in your life. Communicate these desires with your GI so they can help prep your body for a baby. This can mean starting a prenatal vitamin and folic acid several months before trying. I had a colonoscopy before every pregnancy so that I could be given the ‘green light’ by my GI that we were cleared to try for a baby. When I was pregnant, my care was overseen by my OB, a maternal fetal medicine OB (high risk), and my GI. Unless you have perianal disease, you can have a vaginal birth, but oftentimes this is a discussion left to you and your care team. I personally chose to have 3 scheduled c-sections, because while I don’t have perianal Crohn’s, I didn’t want to risk tearing or causing a fistula to form. I would make the same choice if I had to do it all over again. I also stayed on my biologic through conception, pregnancy, and breastfeeding. These are all personal choices but there are many, many research studies available that show the safety and efficacy of doing so. If you feel you could have internal scarring due to past surgeries that could hinder your fertility, check in with a fertility specialist and have them help you investigate if there could be issues.
Educate yourself on insurance, prior authorizations, specialty pharmacies, and Pharmacy Benefit Managers (PBMS). Unfortunately, with IBD we are forced to do so much behind-the-scenes work to simply receive treatment and medication. You will waste countless hours and endless energy on the phone as these people give you the run around. Nobody ever seems to want to take ownership. Work with your gastroenterologist if you are denied a medication so they can write an appeal letter to insurance and go to bat for you. Stay on top of everything, don’t worry about annoying anybody. You gotta hustle. You gotta be frank and assertive. It’s not about hurting feelings; it’s about making sure people are doing their jobs and ensuring your course of treatment doesn’t get delayed because someone fumbles some paperwork. Our medications are time sensitive. Light a fire under people’s ass if you’re not getting responses you deserve. One of my friends on social media posted this over the weekend, “Managing specialty medications in January is an annual slap in the face to chronically ill people.” It sure is. This week will mark the first time I’ve ever received my injections late in the mail, due to a misstep in my GI office that I had to follow up on for over a week. Be extra proactive at the start of each year. Make sure your GI informs you about all the patient savings programs available, these can help you not only emotionally, but also financially.
You get the final say. No one but you gets to say what you do with your body. If a doctor wants you to do an enema before a scope and you don’t want to, don’t. If you don’t feel comfortable with taking a certain medication and your care provider keeps pushing it, they can’t physically make you pop a pill, take an injection, or receive an infusion. You must do your research, educate yourself every day, feel empowered by all you know and be ready to deal with the ramifications if you go against the grain or determine you want to try something differently. There’s not one “right” way to live with IBD. Be honest with your provider. Don’t say you’re taking a medication and then not take it, that’s not helping anyone or anything. Be a compliant patient, but an educated and empowered one at the same time. Measure all the risks and benefits and what your hopes and dreams are for your present life and for your future. Don’t ever feel like someone else can or should dictate what path your journey takes. Just because one biologic is a magic bullet for one person doesn’t mean it will be for you. You never fail treatments, they fail you. If a provider says “oh, you failed Remicade” … please correct them. “No, Remicade failed me.”
I write this as a 40-year-old mom of three—ages 6, 5, and 2.5 years old, married for almost 8 years, who has been on a biologic since 2008, who was diagnosed at age 21 in 2005. So much has changed for the better regarding the patient experience since that time. My perspective has come a long way. I used to be right where you are, so many are living your current reality. Instagram is the bread and butter for the patient community, that’s where you’ll find the most patients and caregivers transparently sharing. Follow the accounts, send a DM, comment on reels and posts, get engaged. Never hestitate to connect and reach out to me–natalieannhayden. Educate yourself through lived experiences and people who have paved the way for you, rather than Google. You don’t need to recreate the wheel, but this is your experience and your story. You get the final word on how you want each chapter to play out. Know each time you fall you will bounce back and that there’s a massive community of support here to catch you and cheer you on every step of the way as you rise once again.
It’s no surprise Inflammatory Bowel Disease can wreak havoc on more than just our guts. And dental health is no exception since it’s technically part of the digestive tract. I’ve had Crohn’s disease for nearly 19 years, and luckily, I feel my teeth and mouth have been mostly unaffected up until recently. That’s not the case for many in our community though. I ran an Instagram poll and asked, “Do you feel your IBD impacts your dental health?” Of the 372 people who responded, 51% said “yes”, 23% said “no”, and 26% were unsure.
To provide a little backstory on my personal situation, when I was pregnant with Reid (my oldest) in 2017, I developed an abscess on my molar that went away once he was born, so luckily no medical intervention was needed. And then, when I had COVID for the first time in January 2021 I started experiencing pain in that same upper molar. It’s been two years now, and after several visits to the dentist to investigate it further, we were never able to get to the root of the problem. The pain would come and go, so we just kept a close eye on it. A root canal felt like a last resort, and I didn’t want to do anything that drastic until absolutely necessary, so I kept choosing the conservative route.
Fast forward to December 30th, 2023. The pain came back with a vengeance. I randomly was directly exposed to COVID the day before but didn’t get the virus. I found it interesting that the pain began almost immediately after the exposure though. After the New Year, I went to the dentist and found out there was a lesion on one of the roots of my upper molars and a root canal and crown were needed. The pain was unbearable, but antibiotics (a Z-pack) helped get the pain under control after about five days. While I dreaded getting all this dental work, I’m ready to be able to eat on the left side of my mouth again after two years of avoiding it and not having any pain in my mouth.
This week on Lights, Camera, Crohn’s a deep dive into dental health and how it relates to our IBD. Some people with Crohn’s and ulcerative colitis deal with ulcers and inflammation in their gums, and then the medications we take and the malabsorption we deal with can cause our tooth health to be subpar.
Waiting to get my first root canal
Oral health and IBD
According to a study entitled, Oral Manifestations of Crohn’s Disease: A Systematic Review – PMC (nih.gov), ulcers, gingivitis, and angular cheilitis are the most frequent dental issues those with Crohn’s disease experience. This systemic review concluded that, “Some lesions develop silently and go unnoticed by the patient. Others become established, causing pain, and incapacitating the patient in their normal life, sometimes accompanied by gastrointestinal symptoms.”
A study, entitled, “Dental and periodontal disease in patients with inflammatory bowel disease” also investigated how IBD can manifest orally in patients. This looked at DMFT (Decayed, Missing, Filled Teeth) scores and looked at the electronic health records of 229 IBD patients in comparison to non-IBD patients. The results showed “Crohn’s disease patients have significantly more dental health problems compared to the control group.”
With my root canal this past week, the inflammation was so out of control it required three shots to the roof of my mouth, two in the side gum area, and a burst of prednisone after. As a veteran IBD patient, I feel anytime something with my health goes awry, I immediately wonder if there’s a correlation to my Crohn’s. It’s hard not to.
Grateful for headphones, Netflix, a stress ball and a blanket to help get me through the procedure.
This study found that people with IBD are at an increased risk of developing cavities and oral infections and that people with IBD have more dental treatments than those without IBD.
Lifestyle and dental health
How healthy our mouths are can also directly help or hurt how our IBD manifests. Recent research in the journal Cell showed that periodontitis, or gum disease, aggravates gut inflammation because the bad bacteria in the oral cavity migrates to the gut.
Steroids like prednisone can cause loss of calcium from our bones and lead to osteoporosis, this can also reduce the calcium in our teeth, causing them to weaken and decay. Talk with your GI and make sure you are getting enough calcium in your diet to keep not only your bones, but your teeth strong. Just this week, my GI advised I chew two Tums a day for added calcium, so I’ve added that to my Crohn’s management regiment.
People with IBD sometimes struggle to find foods they can tolerate—which can result in a high sugar diet or a low amount of essential nutrients. Teeth are affected by both. Some of us also deal with stomach acid and bile coming up through our mouths. An extra acidic mouth can be caused by poor gut health. Fruit juices, fizzy drinks, and pop/soda can increase the amount of acid in our mouths. Too much acid can cause tooth enamel to erode and makes our mouths the perfect breeding place for plaque (bacteria which can cause gum disease) and gingivitis (inflammation of the gums).
What patients have to say
“I’ve had so many root canals and crowns. Last spring, I had a molar pulled for an implant. The pain with a root canal is EXCRUCIATING!”
“A little bit of clove oil essential oil placed on a Q-Tip on the area helps. Typically, IBD patients are not supposed to take ibuprofen. But I have found three ibuprofen helps a bit, too temporarily.”
“Try swishing coconut oil.”
“I had two cavities in the last week. I never had dental issues before my ulcerative colitis.”
“I’ve had three molars fixed now, either via extraction or root canal and crown. I have one more molar that needs attention because it broke (thankfully didn’t expose a nerve or anything, so it’s hasn’t been painful). The pain before surgery with the others was unbearable! I did warm saltwater rinses and ate as many cold things as I could.”
“I’m a dental hygienist and a Crohn’s patient. You should be on antibiotics and should have pain meds. Find a new dentist if they don’t offer these options.”
“Tylenol and Ibuprofen cocktail! Works like Vicodin without the woo woo effect. 800 mg ibuprofen and 600 mg Tylenol, every 6 hours. The actual procedure itself is a drop in the bucket compared to what we go through.”
“INSIST on oral antibiotics after. Even if your dentist swears you don’t need them. Speaking from experience with a dentist who wouldn’t prescribe after a root canal while on Humira. Ended up in the emergency room with a massive abscess, and many further dental issues that resulted from that infection including a re-treatment of the tooth, cellulitis, and eventually oral surgery and an extraction.”
“There is nothing worse! This is such an overlooked topic in both the IBD and dental worlds! I have serious traumas about dental procedures due to the lack of knowledge in the dental industry. I’ve been told there’s no gluten in cleaning abrasives (there was), I’ve been told that I have poor hygiene, that I’m a bad example to my kids, that I’m lying to the dentist about my teeth care. I’ve been left in pain repeatedly from neglect, and I’ve switched dentist offices about 2 dozen times. It’s been a battle!”
“It’s the worst pain. They wanted me to wait for a root canal until after my wedding and honeymoon and I cracked, and had it done a few hours before my rehearsal dinner because I would not have enjoyed my wedding. I felt like a MILLION bucks after even though it still hurt. It’s not the type of pain you can ignore.”
“My gums always bleed, and I constantly used to get told at the dentist that I must not floss or brush daily. Not true. It drove me nuts. I would brush my gums so hard thinking that eventually they would stop bleeding for the next appointment at the dentist. This only caused receding gums. I told this to my new dentist and his staff, and they don’t say anything about my gums bleeding.”
“I have ulcerative colitis and had a root canal and crown 10 years ago; it was a great success. I never had any more issues. I had such a tough time finding antibiotics that helped. So, they gave me penicillin and that exacerbated my symptoms of UC.”
“Our teeth are a hot mess due to IBD and more specifically long periods of prednisone.”
“I had to get an emergency root canal while pregnant, so we had to limit anesthesia during the process. I would not recommend this. The process wasn’t great but wasn’t the worst considering Crohn’s and birth pain. One takeaway would be to know your gums might flare back up for a few months afterwards. As a mom with Crohn’s and gum disease, I would love to see a piece on IBD an dental health.”
“I would just have the tooth pulled personally. It can end up having an infection and you won’t know because the nerves are gone, and your teeth are connected to your whole body. There’s even a movie about it. Hypericum homeopathy would be great for nerve pain. You could rotate that with arnica every two hours. I would also place a clove in a little cotton and set it back there or clove essential oils in coconut oil and rub it around the gums in that area a couple times a day. Also, warm saltwater rinses.”
“I’ve never had a cavity and my dentist is amazed by this because I’ve had multiple root canals and crowns but that not because of decay…it’s from the tooth enamel breaking down from lack of nutrients and use of steroids over long periods of time.”
“Ice like crazy after a root canal. I’ve had three root canals with two failing and losing the teeth thanks to my Crohn’s. Putting a soft ice pack on my face post procedure was my lifesaver!”
“I’ve always been labeled “incredibly difficult to numb”—to the point where the dentist didn’t believe me, and I was about to hit the ceiling in pain when they started drilling. I never put two and two together that it could be related to IBD and none of my dentists have either.”
“I saw your post about your tooth. I would suggest following Dr. Michelle Jorgensen. She’s a functional dentist and talks a lot about gut health and dental health. She’s been on a few different podcasts talking about it as well. She also has a tooth powder that I use and love! For tooth pain, clove oil works great. Along with CBD oil—Met Naturals is my favorite. Turmeric oil is my go-to for pain. Arnica is also a natural pain reliever.”
“I have UC and have been incredibly nervous about my dental health since my diagnosis. I asked my dentist office about more frequent cleanings and found my insurance will cover four cleanings a year. So, now I go every three months. I know it can’t prevent everything, but I’m thankful for this bit of help.”
Some points to consider:
Shared Risk Factors: Some studies have found shared risk factors between periodontal (gum) disease and IBD. Smoking, genetic predisposition, and immune system dysregulation may contribute to both conditions.
Oral Health and Inflammation: Poor oral health, especially chronic gum disease, can lead to inflammation in the body. Inflammation is a common feature of both dental issues and IBD. The body’s response to oral bacteria in the gums may contribute to a systemic inflammatory response.
Microbiome Connection: Both the oral cavity and the gastrointestinal tract harbor complex microbial communities. Imbalances in the oral or gut microbiome may play a role in the development or exacerbation of inflammatory conditions.
Immune System Interactions: The immune system plays a crucial role in both maintaining oral health and regulating inflammation in the gut. Dysfunction in the immune system could contribute to the development or progression of both dental issues and IBD.
What you can do
Maintaining good oral hygiene practices, such as regular dental check-ups, proper brushing, and flossing, and addressing any dental issues promptly, is recommended for overall health, regardless of any potential association with specific medical conditions like IBD. If you have concerns about the relationship between your dental health and IBD, consult both your dentist and gastroenterologist for personalized advice based on your specific health situation. Some people in the IBD community reached out to me and said they get dental cleanings every three months and feel that’s a huge help in maintaining their dental health.
If you have IBD and need a dental procedure:
Communicate openly with both your dentist and gastroenterologist about your medical history, including medications and symptoms.
Follow a consistent oral hygiene routine to minimize the risk of dental issues.
Discuss any concerns or questions you have with your healthcare providers.
Because we often have chronic inflammation in our bodies due to IBD, this could potentially affect the body’s ability to heal after dental procedures, including root canals. For those with IBD, there may be an increased sensitivity to infections or challenges in managing inflammation, especially as we try and limit NSAIDS. Prior to a procedure, make sure your dentist or endodontist is aware of all medications you take to make sure there will not be any oral health implications or interactions with your dental treatments.
Final Thoughts
Keeping up with all our medical care, including dental, can feel like a part-time and sometimes even a full-time job. Getting teeth cleaned twice a year and taking care of oral problems may get pushed down the list of priorities, but oral health is not something to be ignored. Poor oral health is often a reflection of a person’s overall health and can even be the cause of systemic disease.
It’s important to note that correlation does not imply causation, and several factors may contribute to the relationship between dental health and IBD. Additionally, individual experiences vary, and not everyone with IBD will necessarily have poor dental health or vice versa. While there is some research suggesting a potential association, the evidence is not conclusive, and more studies are needed to establish a clear link between dental health and IBD.
It’s that time of year when sickness lurks around every corner. For those of us who are immunocompromised, run of the mill “regular people” sickness can hit us extra hard. Since the end of September, I’ve dealt with bronchitis for 5 weeks, followed by pink eye in both eyes, and I currently am dealing with a bacterial infection in my right eye. Being an IBD mom with young kids in preschool and elementary school brings extra germs into our house. While I’ve been under the weather, I keep second guessing what supplements are deemed “safe” and beneficial for me to take since I’m on a biologic. Even 18-plus years into the game, I still get confused about the gray area around supplements to help us improve or boost our immune systems and which we need to be careful of.
This week on Lights, Camera, Crohn’s we hear from three gastroenterologists who take a deep dive into this topic, along with a registered pediatric GI dietitian, and several people from the patient community. Before we get started, I want to preface this by saying this is a complex issue that is not black and white. Even after digging deep researching this topic—I’m still not completely clear on what’s best for myself.
There’s been conflicting beliefs on whether Elderberry is “smart” to take when you’re immunocompromised. I ran a poll on Instagram asking our community what they’ve been told. Of the 260 people who responded 72% said “This is a thing?!”, 21% of those polled said they were told to “Steer clear when on immunosuppressants”, and 7% of people were told by their provider that it’s “Safe and advised” to take Elderberry.
Let’s hear what patients have to say
Samantha: “I was advised not to boost my immune system. So, I focus on nourishing my body well when sick. I drink a lot of smoothies and fresh juice. I’d avoid Elderberry for sure. I take daily vitamins and get my levels checked regularly to make sure I’m getting enough of what I need. However, I have a kid in school who brings all those lovely germs home. I had a GI once explain it to me like this…my immune system is overactive; I have to take medication to weaken it, which brings it down to a “normal” range. If I try to “boost” it, I’m working against my medication.”
Cindy: “My mother-in-law purchased some Elderberry for my daughter with Crohn’s shortly after her diagnosis. “A woman at Whole Foods told me this could be good for her.” She meant well. Anyway, I understood that my daughter shouldn’t take Elderberry, after consulting with Dr. Google. I believe it was a reputable website that contraindicated Elderberry for patients on immune suppressing medications.”
Emily: “I have been told both—that Elderberry is safe and that it is not. My family doctor told me to avoid it and my GI nurse says that it’s ok sometimes when sick?! So confusing!”
Alyssa: “My husband has Crohn’s and is on Entyvio. He takes Elderberry if he has flu or cold symptoms, whereas I take it daily during the winter. Funny enough, I’m sick A LOT more than him!”
Jessie: “I’ve been told by some doctors not to take immune boosting supplements with biologics and others that it doesn’t matter, but I can’t find the concrete research/facts I need to be sure.”
Lindsey: “I find my symptoms flare when I have Elderberry!”
Rachel: “I’m always confused if I should be taking anything to “boost” my immune system when I’m on suppressive meds. I asked my provider years ago, but I didn’t really get a real answer. I’ve always thought it was good to take supplements to help my immune system, but then I get concerned about them counteracting my medication.”
Hermione: “I have been told it is a placebo effect by my immunologist.”
Kristen: “I read that you don’t want to boost your immune system since that’s the system you want suppressed and caused your disease in the first place.”
Bee: “I was told not to take things that will “boost” the immune system. In South Africa, it’s Echinacea. I was told not to take it. So, my approach has been to “indirectly boost” my immune system by taking vitamins and fresh fruit and vegetables as much as I can tolerate.”
Rocio: “I’ve had this conversation with providers, particularly when I had COVID. I was told NOT to take Elderberry because it has been shown to increase cytokine storm which is present in both COVID and IBD. From an IBD specific point of view, the anti-TNFs seem to calm that storm which is why some were used as COVID therapeutics. So, I wouldn’t say it’s because of being on immunosuppressants, but rather the disease itself.”
Julie: “I live on Elderberry but never asked my doctor, so I’m hoping it’s ok!”
Laura: “I’ve taken Elderberry for years on Remicade (also working as a nurse practitioner in pediatric primary care) and it has helped keep me well and my GI docs have never been opposed to me taking it. I do usually skip it the night before and after an infusion though.”
Jana: “I was told it could cause increased risk of cytokine storm for those with IBD in general, whether on immunosuppression or not.”
Heather: “My son’s GI said NO to Elderberry. We used to take it every winter, but once he was diagnosed with Crohn’s they said to stop using it. I always worry about this time of year and all the yucky stuff going around. My son takes the Liquid IV Vitamin C packets and puts those in his water. I don’t know if they help, but I feel better knowing he is taking something to maybe help give him a boost!”
Beth: “I’m so glad you’re covering this because there is so much confusion—should we try to boost our immunity or not? My personal experience is that I was taking it trying to boost my immunity before a busy event season when I needed to stay healthy. About three weeks later, I was wracking my brain trying to figure out what was flaring my Crohn’s because I’d been eating right, sleeping more, hydrating…and I think it was the Elderberry. In general, I have tried to shift my logic to “these are things that help keep me healthy” versus “how do I boost my immunity?”
Madison: “My first GI told me “No” if you’re on biologics. Not sure if that’s true, but I just trusted that guidance and still avoid it!”
Jess: “I was told to steer clear of Elderberry because of having IBD.”
Jaclyn: “I have asked so many times what I can take, and I’m always told there is basically nothing extra I can do. I have a 4-year-old and 5-month-old in daycare, so they are always bringing home sicknesses.”
Elderberry: To take or not to take?
After reading those firsthand experiences it’s clear—the patient population is unclear and hesitant about what is best when it comes to boosting immunity. While Elderberry has gained popularity for its potential immune-boosting properties, its safety for those of us with IBD is not well-established. Elderberry supplements are often promoted for their antiviral and immune-enhancing effects, primarily attributed to compounds like flavonoids and anthocyanins.
Before I became a patient advocate, I would take elderberry anytime I felt a sniffle or had a sore throat. I really felt like it made a positive difference. Fast forward a few years and I started hearing that Elderberry could interact with Humira and cause my immune system to become over-active, so I stopped taking it all together. To this day, I wonder about taking it—and I know many of you do, too!
There are a few considerations for those with IBD when it comes to Elderberry:
Sorbitol Content: Elderberry products, particularly some syrups and extracts, may contain sorbitol, a sugar alcohol. Sorbitol can have a laxative effect and may exacerbate symptoms for those with IBD, especially if you are sensitive to sugar alcohols.
Potential Interaction with Medications: Elderberry may interact with certain medications or treatments for IBD. Elderberry is believed to have immune-modulating properties. When taken with immunosuppressive medications like Humira or Remicade, there is a potential risk of enhancing the immunosuppressive effects, which might increase the susceptibility to infections. It’s important to discuss this with your healthcare provider to understand the potential implications.
Limited Research: There is limited research specifically addressing the safety and efficacy of Elderberry in individuals with IBD. The specific interactions can vary, and it’s essential you ensure there are no adverse effects or diminished efficacy of your prescribed medications.
The GI’s weigh in on the debate
Dr. Miguel Regueiro, M.D., Chief, Digestive Disease Institute, Cleveland Clinic, says that while he does not want to sound dismissive of supplements, that we lack good data to make claims for or against. Personally, he does not feel Elderberry is harmful, and does not have a problem with his patients taking it.
“I am not aware of good, randomized data to indicate true harm from Elderberry in immunosuppressive or immunomodulatory medications, even though there are warnings listed,” he said. “Theoretically, Elderberry will “stimulate” or “activate” the immune system and has been a popular supplement that some recommend for “cold/flu” or to prevent cold and flu. If that theory is true, then potentially elderberry as an immune stimulant would offset or counteract an immunosuppressive.”
Without good, randomized safety data, it is difficult to make this strong claim one way or another. Given that Elderberry may or may not help with cold/flu, in an abundance of caution it would be reasonable to avoid in patients on immunosuppression.
“My sense is that the dose of Elderberry is low enough that even with immunosuppression, there should not be a problem, but, again, without confirmatory evidence to say that Elderberry effectively “fights off” or “prevents” cold/flu, one could simply avoid it in patients who are immunosuppressed.”
Dr. Regueiro says the ideal health-related approach is to ensure that IBD patients are eating a whole food diet, avoiding processed/ultra processed foods, drinking plenty of water each day (1-2 liters), exercising regularly, and having good sleep hygiene.
“Regarding additional supplements, based on a patient’s history and certain IBD meds, we recommend different supplements. For example, for patients who have been on steroids in the past, we recommend a bone densitometer for osteopenia (and osteoporosis). If bone mineralization is low, we recommend supplemental calcium and Vitamin D. If a patient has had ileal (small bowel) surgery, we will check a vitamin B12 level and if it’s low, we recommend parenteral (subcutaneous) shots, as they will not be able to absorb oral B12.”
He went on to say that iron levels should be checked, as iron deficiency is common. If iron levels are low and a patient is anemic, parenteral (IV) form of iron is recommended, as oral iron can upset the stomach and even lead to more IBD symptoms.
“For patients with short bowel syndrome from extensive bowel surgery, they should be managed by a nutrition team who specializes in short gut as the evaluation of nutrients and vitamins is more comprehensive and detailed. Finally, for most of our IBD pts who do not have any of the above vitamin deficiencies, as long as they’re eating a well-rounded, healthy diet, they need no other vitamins. However, I tell my patients that taking a once per day over the counter vitamin is generally safe and ensures all nutrients are covered.”
Dr. Yezaz Ghouri, M.D., Director of Inflammatory Bowel Disease Services, University of Missouri School of Medicine at Columbia, says elderberries seem to have high amounts of antioxidants.
“The main antioxidant seems to be a bioflavonoid called Anthocyanin. These give purple pigment in the berries and have powerful antioxidant properties. Antioxidants have an anti-inflammatory and anti-carcinogenic effect in the body. Patients with IBD have chronic ongoing inflammation and are at increased risk of developing colon cancer. Carcinogenesis refers to the conversion of normal tissues to cancer. In general, we recommend the use of berries in IBD patients, and these are a good source of minerals, vitamins, and healthy carbs. The Crohn’s and Colitis Foundation cautions the use of Elderberry in IBD patients due to concerns that this fruit increases production of certain types of chemicals in the body that can cause IBD type inflammation. One of these chemicals is called tumor necrosis factor (TNF), the same which is blocked by medications used to treat IBD.”
Immunosuppressive medications and antioxidants work hand in hand in preventing inflammation.
“But there have been some studies that showed the effect of Anthocyanins on a group of immunosuppressive medications used in IBD called anti-TNF alpha inhibitors (examples: infliximab, adalimumab, certolizumab, golimumab). There is inconclusive evidence in this matter and there are no large clinical human studies showing that use of Elderberry is linked with an effect on TNF alpha inhibitors ,” explained Dr. Ghouri. “Please consult with your GI specialist prior to their use. Taking Elderberry in moderation should be ok, but if one develops any signs of disease flare, then stop the use,” he said.
Dr. Ghouri agrees that it is “ok” for IBD patients to take Elderberry.
“Elderberry has very strong anti-inflammatory properties that may contribute towards preventing damage from chronic ongoing inflammation and free radical based tissue injury.”
Dr. Ghouri recommends the following protocol for labs to indicate whether you need specific supplements/vitamins added to your regiment:
Checking Vitamin D levels at least once a year
Checking Vitamin B12, Folic acid and Iron (Ferritin) levels, if anemic
Specifically checking Vitamin B12 level once every 6 to 12 months in patients with Crohn’s disease involving the small bowel
Checking other mineral or vitamin levels may be patient dependent, please check with your GI specialist or PCP. There is a need for checking vitamin and mineral levels more frequently in patients who have lost most of their small bowel, due to Crohn’s disease. These individuals have a diagnosis of short-gut syndrome and sometimes require IV nutrition. These patients are at higher risk for developing all sorts of vitamin and rare mineral deficiencies. They need to be seen by a specialist with a background in managing such patients and require frequent blood testing for several minerals and vitamins.
The Pediatric Perspective
With young people often being the carriers of so many germs and being susceptible as school age kids—I wanted to hear from Dr. Michael Dolinger, M.D., MBA, Assistant Professor of Pediatrics, Associate Pediatric Gastroenterology Fellowship Program Director, Icahn School of Medicine at Mount Sinai.
“For any patient on immunosuppressive medications, it is important to have an open discussion with your treating gastroenterologist about Elderberry, specifically Sambucus nigra, which is used in most herbal supplements. This could stimulate the production of components of the immune system that cause inflammation, mainly cytokines and tumor necrosis factor,” explained Dr. Dolinger. “Many effective therapies target these cytokines or tumor necrosis factor to treat inflammatory bowel disease, as they are often elevated. There is no clear evidence to support this either way, but if you are on a therapy that targets tumor necrosis factor or cytokines for your inflammatory bowel disease, I would certainly have a discussion with your gastroenterologists to review the potential risks and benefits first.”
He went on to say that one of the largest issues with using supplements, particularly in children, is that they are not regulated by the Federal Drug Administration, and you have no way of knowing if what is on the label is in the supplement you would be giving your child.
“I always encourage parents who are thinking about giving supplements to children to assess if there have been any studies of this particular supplement in children or ongoing studies and if not, I urge them to use the same caution they have surrounding any therapy and that is to place safety at the forefront and not give unregulated supplements to children,” said Dr. Dolinger.
For children with IBD, a well-balanced diet with adequate calories for growth and development is the most important recommendation. Supporting supplementation with iron, vitamin D, vitamin B12, and calcium is needed when these levels are low.
“Routine monitoring of vitamins and micronutrients is essential in the care of inflammatory bowel disease patients. For example, vitamin C deficiency often goes unrecognized. We see zinc or selenium deficiencies not uncommonly too. It is most important to have routine monitoring for vitamins and micronutrients at diagnosis and when doing well, at least yearly,” he said.
Erin Feldman, R.D., CSP is a pediatric dietitian. She looked up Elderberry on a database called NatMed. Here’s what she found:
“On the natural medicine database, under “interactions with drugs” immunosuppressants are listed and it states—theoretically, Elderberry might interfere with immunosuppressant therapy, due to its immunostimulant activity. Elderberry has immunostimulant activity, increasing the production of cytokines, including interleukin and tumor necrosis factor. On the patient handout it states that Elderberry might cause the immune system to become more active. This could increase symptoms of autoimmune diseases. If you have one of these conditions, it is best to avoid Elderberry.”
Supplements and Lifestyle Choices that may offer general immune support
If you plan to incorporate any supplements into your routine, please consult with your care team, preferably a gastroenterologist or a registered dietitian, who is familiar with IBD and how it manifests in our bodies. Here are some different supplements you may want to check out:
Probiotics: Probiotics are beneficial bacteria that can help maintain a healthy balance in the gut microbiome. Some studies suggest that certain probiotics may be helpful for individuals with IBD, but their effectiveness can vary. Different strains may have different effects, so it’s crucial to consult with a healthcare professional before using probiotics.
Vitamin D: Adequate levels of vitamin D are important for overall health and immune function. Many people with IBD may have lower levels of vitamin D. This can be determined by a simple blood test. I personally have been vitamin D deficient for years, so I’m prescribed 50,000 IU a week right now.
Omega-3 Fatty Acids: Omega-3 fatty acids, found in fish oil, flaxseed oil, and certain nuts and seeds, have anti-inflammatory properties. They may help support the immune system and reduce inflammation. Again, consult with your healthcare provider for appropriate dosages.
Zinc: Zinc is essential for immune function. Some people with IBD may have lower levels of zinc, so supplementation may be considered under the guidance of a healthcare professional.
Turmeric/Curcumin: Turmeric, and its active compound curcumin, have anti-inflammatory properties. Some studies suggest that curcumin may have potential benefits for those with IBD, but more research is needed. It’s essential to consult with a healthcare provider before using curcumin supplements.
Quercetin: Quercetin is a flavonoid with antioxidant and anti-inflammatory properties. It is found in various fruits and vegetables. Some studies suggest it may have potential benefits for individuals with IBD, but more research is needed.
Lifestyle Factors: Adequate sleep, stress management, and regular exercise are crucial for overall health and immune function. Ensure you are getting enough rest and engaging in stress-reducing activities.
Final Thoughts
Given the potential for interactions and the need to manage the delicate balance of the immune system in individuals with IBD, it is highly advisable to consult with your healthcare provider before adding Elderberry or any new supplement to your routine. A lot more research is needed in this field to better understand supplements and their effects on medications.
There is no clear evidence that immune boosting supplements such as elderberry produce cytokines and tumor necrosis factor to counteract medications, but there is also no strong evidence that they do not either. We don’t know the way in which supplements support or do not support individual immune systems in patients with inflammatory bowel disease on therapies that target the immune system.
Your healthcare provider may guide you on whether elderberry or other immune-supportive supplements are appropriate for you, and if so, what dosage is safe. Always follow their recommendations to ensure the best possible outcomes and to minimize the risk of complications.
Ever look in the toilet and much to your surprise you see a full pill in your stool? I’ve been there—and so many of us in the IBD community can unfortunately relate. Our unique digestive systems put us at much greater risk for malabsorption problems. For those of us with Crohn’s disease or ulcerative colitis, it can be a challenge to retain nutrients in the small intestine—such as proteins, fats, sugars, vitamins, and minerals and this can also pose issues when it comes to receiving the benefits of medications.
This week on Lights, Camera, Crohn’s we explore the various issues those of us in the IBD community may encounter when trying to absorb medications and the strategies employed to overcome these challenges. I ran an Instagram poll and asked our community: “If you have IBD, have you dealt with issues absorbing nutrients and certain medications?” Of the 175 people who responded, 47% said “yes” they have a problem with malabsorption and 50% had “no idea” if they do.
The reason why
You may be wondering why or if you are at risk of having issues absorbing new or current medications. Let’s look at the reasons why many of us deal with this issue:
Altered Gastrointestinal Transit Time: In IBD, chronic inflammation can lead to changes in the motility of the gastrointestinal tract. Fluctuations in transit time through the digestive system can impact the absorption of medications, as they may not spend sufficient time in the intestines for proper uptake.
Intestinal Mucosal Damage: The inflammation associated with IBD often results in damage to the mucosal lining of the intestines. This compromised barrier can affect the absorption of medications, making it difficult for drugs to pass through the intestinal wall and enter the bloodstream effectively.
Drug Formulation and Coating Issues: Some medications are formulated to release their active ingredients at specific points along the digestive tract. In individuals with IBD, variations in pH levels, inflammation, and mucosal damage may interfere with the intended drug release, reducing the medication’s efficacy.
Nutrient Interference: Medications are sometimes absorbed through the same pathways as essential nutrients. Malabsorption issues in IBD can lead to competition between medications and nutrients for absorption sites, potentially reducing the effectiveness of both.
Impact of Surgical Interventions: For those of us who have undergone surgical procedures, such as bowel resection, ostomy, or Jpouch, the anatomy of our digestive tract is altered. Surgical changes can significantly impact the absorption of medications, requiring adjustments in dosage or alternative administration routes. The small bowel, with its large surface area and high blood flow, is the most important site of drug absorption. Personally, I’ve had 18 inches of my small intestine removed along with my terminal ileum and ileocecal valve. The larger amount of small bowel removed, the greater likelihood you will deal with drug absorption issues.
What IBD patients have to say about malabsorption and medications
One of the many struggles patients face is knowing whether the medications they are on for everything from mental health to fertility are being absorbed into their bodies. Here’s what the patient community had to share about their experiences. All quotes are anonymous to protect patient privacy.
“I found that my Wellbutrin was landing in my bag whole, so my doctor broke the dose up into 4 smaller amounts instead of once daily—I’m not seeing the pill in my bag anymore and I am getting the intended benefits. I also was prescribed an opium tincture to take ahead of those pills to help give them their best chance at dissolving.”
“I had to start taking anti-depressants that were dissolvable. Unfortunately, there’s not a ton of options. When I switched to dissolvable from tablet/capsule oral, it made a huge difference.”
“In the past I was on Wellbutrin which came in an Extended-Release pill, and I would often see the pill come out whole. I mentioned this to my doctor, and she was able to get an Immediate Release version prescribed. If someone is on an Extended-Release med this may be an option for easier absorption. A compound pharmacy may be able to make it if it’s not already available in immediate release form.”
“The only difference was I had to take the immediate release version 3x a day vs. once a day for extended release.”
“I’ve really been struggling, and my psychiatrist suggested an absorption problem and recommended a patch, but my insurance denied it.”
“I’m a med student in the UK with Crohn’s. If you look up your selected antidepressant (amitriptyline, sertraline, etc.) on the British National Formulary, there’s usually a bunch of different formulations of the drug, either in pill form, patch, depot injection, liquid suspension, etc. If the desired delivery method is not available for that specific drug (like not for fluoxetine, but you still want an SSRI), you can scroll down to other drugs in class, check for interactions with current meds, guidance also for hepatic or renal impairment, pregnancy, the works. It’s entirely free and very user friendly.”
“I had trouble with absorption this summer when I was waiting to get my hiatal hernia fixed and acid was eroding my esophagus and medication before it could make it into my digestive tract, but I have surgery in July and continue to fail antidepressants and have other health issues that are unexplainable (exhausted and starving all the time for example) so hearing this input is so helpful to me.”
“I switched from Effexor capsules to tablets and I wasn’t digesting them at all. I frequently saw them in the toilet bowl and had to switch back to capsules and just take two.”
“I’m on an antidepressant and it just rips me up. I have absorption issues with everything.”
“I’ve always been on liquid anti-depressants just to make sure I am absorbing all of it with my ostomy.”
“I haven’t had any issues with my Zoloft!”
“I am currently on Celexa and occasional Xanax, no issues.”
“I’ve always had a slight suspicion about whether my Crohn’s is the reason my antidepressants don’t work.”
“I take an antidepressant that is dissolved on the tongue. Lamictal. It’s a mood stabilizer also used to treat anxiety and depression. Just started it, so far so good. Everything else went right through me. It’s been a struggle finding the right fit. SSRIs are awful and with an ostomy (at least in my experience).”
“On occasion during more severe flares I’ve noticed undissolved pills that I’ve mentioned to my GI. The advice was to keep an eye on it and if I continued seeing them, we’d need to reassess but thankfully those episodes were intermittent. I am, however, going to bring this up to my shrink because my response to meds is usually very suboptimal. Don’t think there are other forms available other than pills, but something to keep in mind.”
“Sublinguals are another good option for IBD patients for better absorption. I take a few of my supplements sublingually and my levels have been maintained well!”
“Not sure about anti-depressants. But I take the liquid form of many nutritional supplements for better absorption like Vitamin D and Vit B-12. I find I absorb it better that way. Of course, injecting is even better in terms of absorption, and I have occasionally had B-12 injections.”
“A good time for a reminder to always look at your poo. If you see what you think is a pill, make a note and if you see it more than once, contact your doctor. Some pills I may split for more surface area or open capsule (maracas) into spoon of applesauce, if it doesn’t compromise the med.”
“When I was in the hospital, docs would give everything they could IV because of the concern about absorption. It’s never come up outpatient for me though.”
Added concerns and considerations for Ostomates, JPouches, and Short Gut
According to The Ostomy Files: The Issue of Oral Medication and a Fecal Ostomy, “Because portions of the intestinal tract have been removed or bypassed, people with an ileostomy or colostomy may experience difficulty in absorbing and, therefore, gaining maximum benefit from oral medications. The shorter the length of the remaining bowel, the greater the problem of absorption, particularly in the ileum.”
Generally, people with descending or sigmoid colostomies absorb medications as well as people who do not have an ostomy. However, “enteric-coated tablets, time-release products, or large tablets” are designed for gradual absorption along the entire intestine (the ileum AND the colon).
The article goes on to share a helpful trick to do at home, “Place the tablet in a glass of water and record the amount of time it takes for the tablet to begin to dissolve. If the tablet begins to dissolve in 30 minutes, most likely it can be adequately absorbed in the body. Patients should be instructed not to crush tablets without first checking with the pharmacist because the practice may expose the medication to gastric fluids, which could cause gastric upset or inactivate the drug.”
Amalia Karlin, MS, RDN, Owner of the Ostomy Dietitian, says, “When a portion of the bowel is removed, psychiatric medications have less time in the gastrointestinal tract to be fully absorbed. This may lead to medications coming out in the ostomy bag still intact. Fast transit time amongst the ostomy population in combination with having an ileostomy, specifically, are additional risks for pill remnants ending up in the bag. Troubleshooting this issue may require changing the timing of the medication and the foods with which the medication is taken to slow down and thicken ostomy output and give the medication the best chance of being fully absorbed. Ostomates should share these concerns with the physician managing their psychiatric medication.”
Amalia urges patients to ask the following questions:
What is the release action of the medication?
Is the pill a tablet, capsule, etc.?
Are you seeing pill remnants in your bag?
What foods are you eating them with (we want to slow output when taking these drugs)
Ostomates I spoke with say liquid iron helps them more than capsules for boosting hemoglobin levels.
“I have trouble with absorption due to my ileostomy. My anti-depressants had to be changed because I could not absorb Long Acting or Extended-Release meds. They are too hard and did not break down. I also need to get B12 injections every three weeks because of deficiencies.”
Medications that don’t dissolve quickly may be absorbed inadequately, making some medications ineffective. According to an article entitled, “Medication Considerations for People with an Ostomy,” Medications that may not be absorbed adequately include certain antimicrobial agents, digoxin, mesalamine, levothyroxine, and oral contraceptives.Enteric-coated or extended-release medications should be avoided by those with an ileostomy because the medication is absorbed or partially absorbed in the colon.”
It’s advised that prior to ostomy or extensive bowel resection surgery, patients and caregivers discuss how surgery will impact the way medication is absorbed moving forward. Ostomates and those with short gut syndrome should monitor output and look for undissolved pills or capsules. If you see your medication intact after it’s been ingested, make sure to alert your care team. Having care providers (especially those outside of the GI space), who are knowledgeable and understand how those with IBD often have unique bowel integrity, makes all the difference.
To assure proper absorption medications can be prescribed in the following ways:
Liquid
Soluble tablet
Transdermal patch (an adhesive patch that delivers medication into the blood stream)
Sublingual (under the tongue)
Buccal (placing medication between gum and cheek)
Parenteral (means “beyond the intestine”—an injection)
If you are receiving medications in one of these formats and still not reaching the therapeutic range, it’s not unusual to be prescribed above the recommended dose. It’s important as patients we understand that our prior surgeries can effect not only prescriptions, but over-the-counter medications, too.
According to this study, “the effectiveness of oral contraceptives might potentially be reduced in women with Crohn’s disease who have small-bowel involvement and malabsorption. Due to the nature of how family planning goes with IBD, it’s imperative women with IBD communicate openly with their OB and GI to avoid unintended pregnancy, as timing and trying to get pregnant while in a remission state is optimal for both mom and baby.
Strategies to Overcome Medication Absorption Challenges
Individualized Treatment Plans: Tailoring medication regimens to the specific needs of each patient is crucial. Healthcare providers must consider the severity and location of inflammation, as well as any surgical history, to optimize drug absorption.
Alternative Administration Routes: For individuals with severe absorption challenges, alternative routes of administration, such as intravenous or subcutaneous injections, may be considered. These routes bypass the gastrointestinal tract, ensuring direct delivery of medications into the bloodstream.
Monitoring and Adjusting Dosages: Regular monitoring of medication levels in the blood allows healthcare providers to adjust dosages as needed. This personalized approach ensures that therapeutic levels are maintained despite potential absorption difficulties.
Final Thoughts
Medication absorption issues for those of us with IBD poses a significant hurdle. By recognizing the unique challenges, we face, healthcare providers can develop personalized treatment plans that address absorption issues and optimize therapeutic outcomes. Ongoing research and advancements in drug delivery technology continue to contribute to the development of innovative solutions, offering hope for improved medication management for the IBD community.
Saturday, October 7th, 2023, the largest mass murder of the Jewish people since the Holocaust unfolded before our eyes in Israel. As of Tuesday night (October 17th) at least 1,400 people have died and 3,400 others have been injured in Israel. The rape, barbaric torture, kidnapping, and killing of Israeli civilians—including, children, the elderly, and infants is an atrocity, opening a wound that has never fully closed. This terrorist attack is unfathomable and unjustifiable. Sadly, this tragedy has been met with denials and rationalizations. People all over the world have paraded in the streets, many celebrating the darkest day in history for the Jewish people.
This week on Lights, Camera, Crohn’s a somber look at what it’s like to be Jewish right now and living with inflammatory bowel disease (IBD). You’ll hear firsthand accounts and perspectives from more than 30 Jews with Crohn’s and ulcerative colitis from around the world, along with Dr. Nathaniel A. Cohen, a gastroenterologist who specializes in IBD and works at a hospital in Tel Aviv, Israel.
Nicholas Kristoff, a New York Times reporter, shared a quote that I want to reiterate:
“If we owe a moral responsibility to Israeli children, then we owe the same moral responsibility to Palestinian children. Their lives have equal weight. If you care about human life only in Israel or only in Gaza, then you don’t actually care about human life.”
As I write this, the Health Ministry in Gaza says that since October 7th at least 3,000 Palestinians have died and more than 12,500 have been injured. As these numbers continue to rise at an alarming rate and as we sit in the comfort of our homes in the United States and watch on in disbelief at the devastation and destruction from afar, it’s important to hold space and prayer for all the innocent lives being impacted right now.
Prevalence of IBD in the Jewish community
Before we get into the heartfelt and painful accounts from the Jewish IBD community, it’s important to look at the history of prevalence of IBD in this group of people. Through my advocacy, I’ve been blessed to get to know and work alongside countless incredible Jewish IBD advocates—both patients and caregivers. Most of the people I know with IBD are Jewish. The only people I knew with IBD prior to my Crohn’s disease diagnosis in 2005 were family friends and neighbors, who are Jewish. This tragedy hits the IBD community right at the heart.
Those of Ashkenazi Jewish decent develop IBD, at higher-than-average rates. Genetics are just one suspected cause of IBD. It’s estimated more than 10 million people in the world have Crohn’s disease or ulcerative colitis.
An article by the Jewish Digest reports, “It now seems that Ashkenazi Jews are approximately four times more likely to develop Crohn’s disease or ulcerative colitis than non-Jews living in the same country. This means of course that the vast majority of individuals with IBD in the world are not Jewish but that the Jewish population is disproportionately affected.”
An article from the Jerusalem Post states, “The prevalence of such problems among Jews perhaps lies behind the well-known Yiddish expression, “Gezunt dir in pupik” (good health to your belly button), which was a common way for European Ashkenazi Jews to wish one another robust health.”
Professor Gilaad Kaplan of the Division of Gastroenterology at the University of Calgary’s department of medicine explains, “Research has found more than 200 genetic variants that make an individual more likely to develop IBD, and many of these genes are common in Ashkenazi Jews.”
In April 2023, a study shared by scientists from Cedars-Sinai and 5 other medical centers investigated the genetics of 18,745 individuals, including 5,685 Ashkenazi Jewish people. Researchers created a catalog of genetic variants to help clinicians screen and identify patients with increased risk of Crohn’s disease.
According to a Cedars- Sinai article, “They found 10 variations of the NOD2 and LRRK2 exomes that are associated with increased risk for Crohn’s and are more likely to occur among Ashkenazi Jews. The study suggests that this difference in genetics may predispose the Ashkenazi population to a higher risk of Crohn’s disease compared to non-Jewish people.”
Variations in the genetic material of an individual can be passed down and cause genetic diseases in future generations.
In the Cedars-Sinai article, Dr. Dermot McGovern, MD, PhD goes on to say, “These increased genetic risk factors seen in Ashkenazi populations appear to be rooted in a history of migrations, catastrophic reductions in population, and then re-population from a small number of surviving founder families over many centuries.”
Professor Kaplan highlighted that over the past 20 years, IBD has become more of a “global disease with rapidly increasing incidence in regions like Asia and Latin America where it was rarely diagnosed a generation ago.”
He went on to say, “IBD is a modern disease of modern times that is associated with industrialization and Westernization of society. The globalization of IBD suggests that genetics lay down the foundation of developing the disease, but environment builds the disease.” IBD occurs in all races and ethnicities.
Dr. Nathaniel A. Cohen, MD, is a gastroenterologist in Israel who specializes in IBD at Tel Aviv Medical Center. He says this is an exceptionally difficult time for patients with IBD throughout Israel.
“Obviously those in the southern areas have been severely impacted, some were in the communities so viciously attacked by Hamas terrorists and lost family members and witnessed the horrors. Those patients face challenges of access to care as they had to leave their community and move further north,” explained Dr. Cohen. “However, other patients across the country have also been affected. Israel is a small country with very close-knit communities and there is not one person who doesn’t know someone murdered, missing, or held hostage. Israel is so small that when I talk about southern cities and villages (where the terrorist attacks occurred) they are only around 30 miles away from where I am currently sitting in Tel Aviv.”
Dr Cohen says that in addition to the terrorist attacks on October 7th, Israel has been faced with “incessant rocket fire from Gaza and the need to go in bomb shelters through the day” ever since, even in central Israel. In addition, many have been called up for reserve duty or have loved ones called up.
“This severe stress has resulted in a significant uptick in IBD symptoms. I am a medical advisor on an IBD patient support application and many more patients than usual have been sending questions regarding increased symptoms. Also, at our IBD clinic in Tel Aviv Medical Center all our physicians have received countless emails from patients experiencing flares or at least worsening bowel symptoms,” said Dr. Cohen.
He went on to say this is a very trying time for people with IBD.
“Patients with IBD as always need to be assessed by a medical professional if they have a flare of symptoms to rule out infection and perform fecal calprotectin to distinguish symptoms resulting directly from stress and those related to their inflammation. Most GI specialists are still working and available for consultations, so it’s important for patients to reach out and get the help they need,” he said.
Dr. Cohen tells me multiple mental health support services have been set up throughout Israel – mainly virtually – to provide mental health support to those affected.
“I also recommend online mindfulness videos or apps and trying (as hard as it may be) to maintain some sort of routine, exercise if possible and yoga (which can be done online and at home) to my patients. Diet is also a vital component. Many patients will stress eat as well as eat food that may worsen disease activity – fried food, snacks, etc. – so I try to advise them on eating as healthy of a diet as possible, despite the times. Volunteering right now is also important, as it gives a sense of purpose and takes the mind off the difficult situation, we are all facing. Unfortunately, there is no easy solution during this most difficult of periods.”
Dr. Cohen says that in Israel they are fortunate to have a very strong public health system—despite the strains due to the war.
“Most GIs are still working normally and are readily available for consultations. There are concerns for patients directly affected by the terrorist attacks in the southern cities and villages, however the country’s health maintenance organizations are nationally distributed, so if a patient needs to move to a different area all their health records are readily available, and most shouldn’t find it difficult to access their medications. Our hospitals, at least in central Israel, are still performing all routine surgeries and as far as I know we are not delaying elective surgeries yet, so this hasn’t been as much of an issue, and we have the capacity to accept all patients from the south who may need care.”
I asked Dr. Cohen to paint a picture for those of us who are not in Israel about what it’s like to be there right now.
“During the Hamas terrorist attack, Israel and the Jewish people suffered the most significant loss of life in a single day since the Holocaust. I want to emphasize that this attack was against civilians – entire families including children, mothers, fathers, and grandparents were tortured, raped, and massacred. Young people at a music festival, celebrating peace, were massacred. We have close to 200 civilians (children, women, men, and elderly) currently held hostage in Gaza. Every single Israeli was affected. Almost every Jew around the world was affected. The Jewish population around the world is only around 16 million people – so for most of us this is exceptionally personal. At the beginning shock and horror took hold of the country, we felt helpless but very quickly the Israeli resilience has shone through, and the entire country has come together as one to defend our right to live in our homeland. The political divide that was present before 10/7 has largely disappeared and we’re united in the face of this evil.”
Dr. Cohen says he would like non-Jews to remember that Israel is the beacon of freedom in the Middle East.
“We are the only liberal democracy in the region and the only country in the region who truly shares the ideals so cherished by Americans and the western world. Israel is a diverse country where ALL citizens regardless of religion, race, ethnicity, sexual orientation, or political inclination live free and with equal opportunity. The largest group of Arabs who are part of the LGBTQ+ community live in the cities of Haifa and Tel Aviv. Israel places the value of human life above all others and, despite what the news will show, does everything in its power to protect the lives of innocent civilians.”
He says the best way to show support is to continue to stand up to terrorism.
“Share the horrors of what Israeli’s suffered on Saturday October 7th and defend and voice support for Israel’s obligation to defend her people and rid the world of Hamas just like the world did with the Nazis, Al-Qaeda, ISIS, and countless other groups whose aim was genocide and enforcing radical ideology upon others. It’s also important to remember that Jewish communities in the US and around the globe will be suffering emotionally and will also be threatened by radical groups abroad who support the violent hatred Hamas embodies. Please think about your Jewish friends, check in on them and make sure they are OK.”
Dr. Cohen would like to thank the global IBD community for the endless messages and support that he and his colleagues have received.
The Jewish community is reeling: What IBD patients and caregivers want you to know
The Hamas terror attack has highlighted the growing global threat to all Jewish communities. Antisemitism is extremely real and prevalent. This isn’t something to be taken casually or something to ignore or tune out because you don’t feel as though it impacts you.
Here’s anonymous input shared with me by members of our IBD community:
This American Israeli Jew with ulcerative colitis lives in Israel and is studying medicine to become a physician. She says her symptoms worsened after she got home from sheltering in a basement.
“I had a difficult time in the bathroom. My thoughts were: I could die being on the toilet, how would I run to shelter if I’m having another episode in the restroom, I need to bring all the toilet paper I just brought down to our apartment building basement. Because of the architectural layout of the basement, the bathroom is connected and shared by two “apartments” (essentially rooms), so anyone who has to enter the secure room, needs to go through the restroom. It’s just a mess. I’m hoping there won’t be a need to bunker down for awhile. I’m still going to the hospital as a med student to learn and help even though school is technically canceled. I don’t think I will go into a flare. After the shock of the events, I’ve decided I’m staying mentally strong. I’m not letting the enemy win.”
“My Crohn’s symptoms have flared more in the last five days than the last five years combined. It’s totally barbaric and no exaggeration to say it makes me feel physically sick. Four of our family friends were taken hostage, including 13- and 15-year-old girls and their parents, after terrorists broke into their home. My cousin was at the music festival in the desert where they shot 250 Israelis. He miraculously managed to survive, but witnessed so many of his friends being killed, abducted, and other atrocities too barbaric for words.”
“The horrific attacks on Israeli civilians by Hamas has left me heartbroken. My husband is a veteran of the IDF (Israel Defense Forces), and we have many friends living in Israel. The fear of their safety, the hesitance of non-Jewish friends to immediately condemn the heinous acts, and the uncertainty of the repercussions for Jews around the world, has put an enormous amount of stress on me. I feel a weight on my heart like never before and this most certainly is affecting my IBD. I’ve had more symptoms, which I attribute to lack of sleep and increased stress.”
“Although I don’t have anyone personally close living in Israel, I do know people from my prior Birthright trip, as well as some Israelis that are in St. Louis currently, but have lost close friends or family in the recent events and that is heartbreaking. It’s hard to be bombarded by the news constantly with images and videos of the attacks, and yet seeing so few non-Jewish friends posting about it.”
“I just saw my colorectal surgeon and I asked how he’s been affected. His sister-in-law’s cousin was killed. Age 21. So sad.”
“My 13-year-old daughter was diagnosed with Crohn’s a little over two years ago. She has been well managed with Remicade (now she takes the biosimilar Avsola). She woke up in the middle of the night with pain (rare) on Sunday (Oct. 8) night. We shield our kids from the worst of this nightmare, but we have open conversations, and the news is on occasionally. She is worried about my family in Israel. I wouldn’t know for sure if the IBD symptoms and her worry are related…but she rarely has pain…and before this her pain didn’t wake her up.”
“I am Jewish. My mom’s side is Israeli, I have relatives who live in Israel. This is an unfathomable crisis and it’s hard to describe the pain I am feeling for my community. I am feeling the physical manifestations of the grief I am feeling. I’m nauseous and have little appetite. I’m trying my best to limit my news and social media intake, but it’s hard to forget everything that is going on. There’s a fear for being Jewish and Israeli even here in the United States. But also, I feel deeply for those living in Israel dealing with this firsthand who have IBD and other chronic illnesses. My heart goes out to them.”
“It’s a real struggle. Many of us have family who live in Israel and are in the army, and some are on the front lines. I live in Pittsburgh, and we are coming up on the 5th anniversary of the Tree of Life shooting. That synagogue is within walking distance of our house. I had personal connections with many who lost their lives. I haven’t been able to concentrate on my own advocacy work. It’s been super hard.”
“My family is Jewish, and my husband is an IDF veteran. This week has been terrible. I’m angry and disheartened that even many of my close non-Jewish friends have been silent.”
“Non-stop crying over here. I’m a little grateful that I had a scope today so that I could have a long break from my phone.”
“I’m a mess. I was supposed to travel to Israel in two weeks, which is now cancelled for obvious reasons. My 22-year-old nephew just moved there for school 2 months ago. Many friends there are in bunkers…it’s just a horrible situation.”
“I’ve had no energy, I’m sad, sickened, nervous, and not doing very good at hydrating and eating.”
“I was feeling so amazing and symptom free from my Rinvoq, and then after the attack on October 7th, I saw a big increase in symptoms. I feel sad and scared. I’m so worried. And honestly, now I’m starting to feel angry at the alarming lack of response from most people and organizations. My colleague’s brother’s unit was called up and they don’t have enough supplies. The antisemitism is the most hurtful and scary.”
“As someone with IBD and Jewish roots, it’s been especially heartbreaking to read about the destruction of human life—innocent babies and children at that. Huge WTF. I’ve been on autopilot and subconsciously worried about my own child. Can’t say I noticed an uptick in gastro symptoms since the news. Prayers help to ease my mind.”
Omer Wenkert is 22 years old and was also at the music festival and hostage video was released of him. Omer has ulcerative colitis, and his family is concerned he’s not receiving his medication. Hamas denied an appeal to hand over medications for chronic illness patients.
The struggle of coping with the deeply emotional and physical pain
“My family was supposed to travel to Israel for two weeks on Sunday, October 8th. I feel lucky to be safe, but also deeply saddened by the acts of violence against Jews/Israelis and guilty for being safe when my family and friends are not. I work in healthcare, and I know Israel needs medical volunteers, but with my ulcerative colitis, I feel like I couldn’t go. I just started a new medication and am coming out of a flare, so how do I know that the stress of practicing medicine in a foreign country where there is war wouldn’t make my symptoms even worse? I can’t take care of others if I am sick. In a perfect world, I would go to Israel and volunteer to help the injured, but my IBD holds me back from that.”
“While my UC remains in remission, I’ve noticed my anxiety heightened. I avoided a public event for Israel because it was advertised on social media, and I was concerned about anti-Semitic violence that could occur with people knowing when and where a large group of Jews were gathering. It’s a scary and difficult time to be a Jewish person, even more with IBD. Thinking about what could happen for the people being held captive going without essential medications or medical care. Being scared to wear a Star of David necklace for fear of anti-Semitic threats…the list goes on.”
“Generational trauma is ingrained in our DNAs as Jews; we instinctively feel the defense to protect ourselves and our community due to the Holocaust and other occurrences in history. If we don’t defend ourselves, who will? That is what is scary. It’s also frightening that in 2023, there are videos of individuals waving flags that appear to be in advocacy for Palestine, but they chant “GAS THE JEWS” and other profanities. For those who did not grow up knowing what we went through, they disregard the truth. The ironic thing is Jewish people have the backs of other humans; we care for our community of fellow humans, regardless of whether people are Jewish. Even in tragedy as family and loved ones have suffered the most tragic things, they still help others in need. They don’t stay in hiding grieving; they help the community. It’s in our values and in our religion to do good for others while giving space for grief.”
“It’s affected me so much seeing people I know with missing family members and friends, uncertain if they’ve been murdered. I’ve been checking in with my Israeli friends every day. My stomach is acting up and is not feeling good these days. I’m coping with it by sharing how I feel. It’s true when they say, “your Jewish friends are not ok.” There’s a lot of fear and uncertainty going on. I had to cancel a flight that I had on Friday 10/13 because there was word going around that something was going to happen in our country to those who are Jewish.”
“I feel numb. I’ve seen an uptick in symptoms. The grief is heavy, and it hurts my stomach. It’s so hard. I don’t know what to say except this is our worst nightmare. I lived in Israel in 2007 for study abroad. Part of that country is my home. We have friends stuck there in bomb shelters unable to get flights back to America. I’ve been nauseous for days and having to take anti-diarrheal medication multiple times a day from the stress. Knowing people are stuck there amplifies the stress immensely.”
“I am Jewish, and I have Crohn’s. I’m so concerned about my possible physical reaction to my emotional reaction that I’ve been concerned about fully engaging in the news of what’s happening.”
“I am coping as best as I can. I make sure to work out and eat healthy to help with anxiety. Thankfully, I haven’t had any symptoms, this month marks 25 years since my ulcerative colitis diagnosis. I would like my non-Jewish friends to check in. Thankfully, I’ve seen some positive posts on social media. I am proud to be Jewish, but scared of what is going on.”
“I’m Jewish and have Crohn’s and my stomach has been a mess this last week and I didn’t put two and two together!!”
“I find it extremely sad that condemning Hamas and supporting Israel/Jews has become a political and taboo subject. I see a lot of “Free Palestine” and “Israel caused this by occupying Gaza” which breaks my heart. This is about a terrorist organization that is hungry for Jewish blood. The fact that this isn’t unanimously condemned doesn’t make sense to me. Of course, no one wants civilians on either side to be hurt. But Hamas did this. They use all their money to make rockets and bombs and tunnels. They could have made Gaza better for their people, but they don’t. They never will. I also don’t understand how organizations like Black Lives Matter can come out and say they stand with Palestine. It seems to me that whenever Israel has to defend itself, more people turn on Israel and Jews.”
“I am not coping. I find myself completely distracted when I’m with my son or when working with patients (I work in healthcare). My mind wanders, wondering about all the civilians impacted…about the state of our world and how it impacts our humanity here in the United States. My heart aches for the babies, older adults, and parents lost. My symptoms are absolutely worse! I can’t sleep, and I tend to flare worse with less sleep. I crave foods that are triggering. The overall anxiety and stress makes my gut hurt and sends me to the bathroom more often. It’s disruptive to my life routines for sure.”
“I’m choosing to surround myself with Jews and like-minded people. If I was at work, and hearing other people talk, maybe I would have worse symptoms.”
“I am a long time Crohnie and lifetime Jew. I appreciate this article and know it comes from a good place. Right now, we are not doing good at all. I’d be happy to circle back to this convo, but right now, we are terrified. There is no coping with these horrors. I feel too overwhelmed to have a coherent conversation and I’m sure others do, too.”
What does the Jewish community want the rest of the world to know?
There are reoccurring sentiments and heartache from the Jewish community about the silence around the terrorist attack from non-Jews. Take yourself back to the major social justice issues in recent years and think about what your online community posted and how they were there in solidarity with others—compared to the last 10 days.
“Check in with us, we’re not doing OK. It would be awesome to just see how we’re doing truly…and just letting us speak our truth without judgement, defense, or justification of something other than our truth. Acknowledge us. See us and fight against anything that brutally harms humans in general. Be a helper. See how you can help anyone whose been impacted by terrorism.”
“The most important thing our non-Jewish friends and family can do is to reach out to express solidarity with the victims and to unequivocally condemn antisemitic attacks. As a Jew and a mother, I’m deeply affected by the murders of innocent Israelis and Palestinians, especially the children. Regardless of anyone’s view of the broader conflict, I think we can all agree that the actions of Hamas cannot be condoned or ignored.”
“I’ve shared a couple of Instagram Stories saying, “Check in on your Jewish friends”, we are struggling in the wake of this massacre and have received responses attempting to justify the brutal murders, rape of teenage girls at the festival, and beheading of people in their homes…making it about ‘complex politics’. Standing up for human rights and against terrorism needs no ifs, ands, or buts.”
“It’s been extremely eye-opening watching who posts and how they post and the deafening silence from those who should know better and don’t hesitate to post on other issues.”
“I have zero family on my dad’s side because they all died in the Holocaust. I constantly wonder how that happened. How everyone just stood by and let it happen. And now, it just feels like that all over again. Silence.”
Dumisani Washington, Founder, CEO of Institute for Black Solidarity with Israel, and author of “Zionism & the Black Church, tweeted: “Imagine being a Jewish man or woman living outside of Israel, especially in the Western world (US, UK, Canada), and seeing hundreds of thousands of people—of various ethnicities and around the world—cheering the slaughter of your people in the Jewish homeland. Imagine trying to figure out where the safest place would be for you and your family. Now, multiply that by 1,000 and you may get a small glimpse of what our Jewish brothers and sisters are experiencing right now.”
“I can’t begin to thank you enough for bringing awareness to the brutal massacre in Israel. The silence of celebrities and organizations is deafening and feels so isolating. It is not about politics. It’s about right and wrong. There were barbarian Hamas terrorists who in ONE day brutally killed at least 1,400 Israeli civilians (children, elderly, moms, and dads) and hundreds are missing or being held hostage by these Hamas monsters. Jewish people were beheaded, raped, their bodies were paraded by Hamas, kids saw their parents get shot at point blank in their homes, people were gassed, and burned alive. This is the deadliest day since the Holocaust. We need everyone to speak out right now.”
“Can you imagine if after 9/11 people were silent? Or worse, people were in the streets rallying behind Hamas? This is what’s happening right now. It’s sickening. We are grieving so hard. My heart is in a million pieces and I’m crying every hour. Everything else feels so trivial right now. Thankfully my Crohn’s is in remission, and I haven’t had any new symptoms from the stress, at least not yet.”
“I’m destroyed. It’s a nightmare that I want to wake up from. My son goes to a Jewish high school, and I want to keep him home. All we have done is help and stand up for people and now this.”
“Done being silent. Done hiding. DONE. It’s been a hard few days for my family, so it doesn’t take much to make me cry. I have been terrified to share about Judaism and Crohn’s. I’m not scared to share the content; I’m just scared to be Jewish right now. I’m just in disbelief because I was ready to quit on the IBD/ostomy community. I thought if anyone would get it, it would be this community.”
“I have five cousins serving in the IDF right now. I have one fighting on the border of Gaza. I have one extended family member being held captive in Gaza. I’ve only recently begun serving the ostomy/IBD community and felt so passionately about it and my heart is now in such a different place. I’ve had several (I can count on one hand) people say nice things to me, but they won’t speak up publicly themselves.”
“A simple text message means more than you can imagine. Something along the lines of “I’m so sorry to hear about the horrific terrorist attacks in Israel. Is your family safe? How are you coping?” Using social media to speak out against the atrocities committed by the Hamas terrorists and assuring us you stand with Israel means a lot, too!”
“Posting support publicly and checking in with Jewish friends and coworkers goes a long way.”
“There are only 16 million Jews in the whole world. There are billions of Muslims and many Muslim countries. Jews only have Israel. Land all over the world has been conquered. Why is it that Israel is the only land people cannot accept? Also, I’m surprised the Crohn’s and Colitis Foundation took five days to say anything publicly. Jews and IBD overlap. Everyone I know personally who has IBD is also Jewish. They should be supporting us; the silence is loud. As a Jewish woman with IBD I feel alone. Sometimes alone with my IBD, but right now, alone as a Jew who is scared for her people and her country.”
The Crohn’s and Colitis Foundation shared an email with subscribers on the evening of October 16th.
To quote part of the email, FoundationPresident Michael Osso shared, “I want to be clear that we unequivocally condemn the terrorist attacks carried out by Hamas. There can be no justification for such heinous acts, which have launched violence that is now consuming the region and continues to destroy increasing numbers of innocent lives in Israel and Gaza. We grieve for the families that are devastated by loss and hope for peace and the safe return of all hostages.”
The email goes on to say—“for all those committed to the mission of the Crohn’s and Colitis Foundation, this is a moment for us to hold firm the Foundation’s core values, and specifically for me, I am thinking of compassion and inclusion. This Foundation will always stand for respect of human life, and against hate of any kind, including anti-Semitism, Islamophobia, and any form of xenophobia or racism.”
If you are experiencing stress-related flares, or other mental health challenges the Foundation encourages you to contact the IBD Help Center by emailing info@crohnscolitisfoundation.org or calling 1-888-MYGUTPAIN.
Final Thoughts and Resources of Support for Innocent Israeli and Palestine citizens
I want to make it clear that my wish and hope is for freedom and peace for ALL. My heart goes out to all the innocent and oppressed people in both Israel and in Gaza, and all over the world. There are countless victims here. Innocent lives that pay the ultimate price for crimes that have nothing to do with them. To quote a friend, “Supporting the Jewish people that I know, and love is not synonymous with supporting all of Israel’s policies. And it’s not synonymous with not caring about Palestinian civilian casualties as Israel attempts to stop terrorists.” My thoughts and hopes are for the safety and protection of all innocent civilians and for stability in the region as quickly as possible. I hope and I pray all IBD patients and caregivers—in Israel and Gaza—can stay well and stay safe in these soul-crushing times.
As a good friend of mine who is Jewish and has Crohn’s shared with me, “Hamas’ sole mission is to eradicate Jews, brutally and mercilessly while the whole world watches. By supporting Israel and Jews it does not mean that anyone is anti-Palestine or that we support the killing and mistreatment of any innocent human life. It just means we are anti-terrorist. We’re all anti-Hamas and anti-barbaric terrorism.”
Additional resources of support
Credit: Jay Shetty for compiling this list of resources
American Friends of Magen David Adom (Read Start of David): Supports Israel’s primary ambulance, blood services, and disaster-relief organization. Magen David Adom (MDA) provides medical care during crises and trains first responders. They play a crucial role in responding to emergencies in Israel and the region, including Gaza.
Alliance for Middle East Peace (ALMEP): The largest network of Palestinian and Israeli peace builders. ALMEP focuses on promoting peace and understanding between the two communities in the region.
CARE (Cooperative for Assistance and Relief Everywhere): A global humanitarian organization that provides emergency relief and works to fight global poverty. CARE’s work extends to providing assistance and support to vulnerable populations, including those affected in the Israel and Gaza region.
Doctors Without Borders:An international organization providing lifesaving medical humanitarian care worldwide. They respond to medical needs in conflict zones, offer mental health care, and address health crises.
Palestine Children’s Relief Fund (PCRF):A U.S.-based nonprofit sponsoring volunteer medical teams to treat sick and injured Palestinian children in the West Bank and Gaza. PCRF provides essential medical care and builds pediatric cancer departments to address the healthcare needs of children in the region.
United Hatzalah: The largest independent, non-profit, volunteer Emergency Medical Service (EMS) in Israel. Volunteers provide fast and free medical care 24/7, responding to emergencies across the country, including in Gaza.
UNRWRA: Provides assistance and protection for refugees, including those in the West Bank, Gaza, and surrounding areas. UNRWRA’s work is essential in supporting vulnerable refugee populations.
Please hold room and space in your heart for each innocent soul impacted by this.
When you have IBD and need a biologic, it used to be all infusions or self-injections. But starting in March 2022 (for ulcerative colitis) and May 2023 (for Crohn’s) a daily pill known as Rinvoq (Upadacitinib), entered the game. Rinvoq is the first approved oral product to treat Crohn’s. This once-daily pill is prescribed for those with moderately to severely active IBD who have had a lackluster response or an intolerance to one more TNF blockers (such as Humira and/or Remicade). Rinvoq is also prescribed for rheumatology and dermatology conditions, such as rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, non-radiographic axial spondylarthritis.
Doses range from 15 mg, 30 mg, or 45 mg. According to AbbVie’s website, “Rinvoq is a selective JAK inhibitor based on enzymatic and cellular assays. Rinvoq works with your body to fight the inflammation that can lead to IBD symptoms. Rinvoq stops the activity of some inflammatory proteins known as Janus kinase (JAK) to help reduce inflammation.
This week on Lights, Camera, Crohn’s we talk with 29 IBD patients about their personal experience on Rinvoq, along with Dr. Uma Mahadevan about key information for those in the family planning stages of their lives.
What patients have to say about the induction dose and the quick improvement in symptoms
Rinvoq is the first JAK inhibitor medication that Brooke tried and she didn’t know what to expect. She started Rinvoq in July and says her body has done a complete 180.
“All of my immediate issues have healed, and my long-standing symptoms have begun to fade. In the beginning during the loading dose, I felt a bit more tired. But after two weeks, I had more energy and have experienced less symptoms. Most of my extraintestinal manifestations have cleared up.”
Brooke says she has caught two colds since being on it, so she’s still masking and being diligent around crowded spaces, especially during flu season. She advises fellow patients to talk to their physicians about the dosage they need.
“Because of how much I’ve been flaring, I’m on a higher dose longer than I may have been if I started in a healthier place. Make sure you and your care team agree on a dosage that is not only good for you, but also that you agree with.”
Brooke sets alarms to take her meds because she is used to an infusion or subcutaneous injection, and it’s important not to miss a dose of Rinvoq.
Tonya: I’m only two weeks in, so still on the induction dose, but this is the first time my symptoms have been somewhat controlled in four years.”
Sarah: “I just started Rinvoq and it’s helping me come out of a flare up.”
Melissa: “My 17-year-old son has been on Rinvoq for about six months after Xeljanz failed him. He’s doing great on it and it’s super easy since it’s a pill once a day. He has also been on Humira and Entyvio in the past. Rinvoq has been the easiest transition so far.
Jennifer L.: “I went on Rinvoq after Remicade failed me and then went on Cyclosporine to bridge the gap before I could switch to Rinvoq. I started it in December of last year and this has been the one drug that has subsided a lot of the symptoms. No nocturnal bowel movements, the only major side effects I’ve had is some acne, but I would say it’s hardly noticeable. I did have to come off hormonal birth control as a side effect can also be blood clots, so you can’t have two drugs that increase your risk of that together. I’m single and wasn’t really thinking about dating coming out of a huge flare, so it was a no brainer for me there. If you’re looking to get pregnant, I’ve heard you can’t be on it because studies have shown birth defects, so that’s a concern potentially for some women or for contraceptive options given that you’re only limited to non-hormonal options while on this.”
Krista: “My fiancé just started Rinvoq and after one day he was feeling better. His energy is up, he has an appetite again, and is showing significantly less signs of inflammation. We still have a journey, but it’s been a miracle drug for him.”
Lizzie: “I have been on this now for 3 months after Humira and Stelara stopped working. So far, my Crohn’s symptoms have subsided. I’m no longer flaring. I would say since taking Rinvoq, I feel more fatigued, but apart from that, I feel really good.”
Marla: “I started Rinvoq 24 days ago, so I don’t have a lot to tell you. I don’t think it’s anything bad. It’s hard to tell if the medication is working yet. I do blood work in November.”
Lauren: “I’ve been on Rinvoq for about one year now. Didn’t work at first, but found out I simultaneously had C-diff. I was on vancomycin and Rinvoq for about 4 months and was scoped for the first time in 4 years because I was in remission. I ended vancomycin and flared again. I will be transitioning to Skyrizi soon, but even though I’m not in remission, Rinvoq has been the only thing that has gotten me in the best place I’ve been in 4 years. I love the ease of one pill a day, no infusions, no shots, etc.”
The main reason Lauren can’t stay on Rinvoq is that it’s not safe for pregnancy and she hopes to have another child. She’s bummed this medication is the only thing that’s shown her improvements and that she needs to switch.
Amber: “I just started Rinvoq last week, so perhaps it’s too early. I am adding Rinvoq to Entyvio for fistulizing Crohn’s. The one thing we are trying to figure out is how it works with an ileostomy. I tend to have a fast track and has passed pills in the past and Rinvoq is an extended release.”
Dana: “I’m currently on Rinvoq! Although I’ve only been on it for 3 weeks, I don’t have any real side effects so far.”
Lindsay: “I’ve only been on Rinvoq for about 3 weeks. I was hoping for a more dramatic change based on things I have read. My fevers have gone away, and I feel like I have more energy, but I still go to the bathroom just as much and the urgency has not changed. I also had to give up breastfeeding to start Rinvoq, so that was hard!”
Sarah: “I started Rinvoq after Humira was not putting me in remission after 1.5 years on it (even with methotrexate added to help). I saw an immediate improvement in my stools. I might have a few pimples as a side effect. It’s only been 3 weeks, but so far, so good!”
Erica: “I’ve been on Rinvoq since May. I haven’t had any improvement. I was hoping when I started that it would work for me. I heard so many people call it their miracle drug. I was scared to try it at first because of all the warnings, but once I started it, I was hopeful. Unfortunately, it was not my miracle drug and I had to add Skyrizi to it…I’m still not better.”
Denise: “I’ve been on Rinvoq for about 7 years. I’ve been part of a clinical trial. I don’t think I have anything bad to say about it. I was so sick with few options, so I took a risk, and it fixed me. I don’t think I’ve had any side effects. I still get scoped annually as part of the study and my intestines have looked great. Sure, I still have tummy troubles, but not the main Crohn’s ones! I get blood work done every 3 months and everything has been normal there as well.”
Abigail was prescribed Rinvoq in late August 2022. At the time, she was hospitalized with the worst flare she’s ever had and was admitted 3 separate times for a 37 day stay. She was facing steroid and Remicade failure and running out of time before requiring emergency surgery. Abigail was given the option of trying Rinvoq for 2 weeks. If it didn’t work, surgery would be required to remove her colon. Her care team got insurance to approve it and she started it right away. Abigail took a double loading dose. Usually, you do 45 mg for 8 weeks, but she did it for 16 weeks instead.
“This medication not only saved my colon, but arguably my life, as I had faced death twice during that hospitalization. I was able to get off steroids. I now take 30 mg of Rinvoq daily and I’m in clinical remission. My next colonoscopy is at the end of this month, so it may show even further remission. I was nervous to start Rinvoq, since it is so new, but given the circumstances, I agreed to it. I am honestly so glad I did. The only side effect I have experienced is high cholesterol. My care team will be addressing this after my colonoscopy. I am forever grateful to Rinvoq for giving me my life back. I choose to do medication and therapeutic diet (SCD). For me, this combination has really helped.”
The visible side effects
Jessie started on Rinvoq to treat her Crohn’s before it was FDA approved because of a flare she couldn’t get under control. She was put on the 45 mg dose for 2 months and saw quick improvements in how she was feeling. After years and years of being poked and prodded for infusions and labs she says she’s so grateful to give her body a rest and just take a daily pill.
“Rinvoq has been like a miracle drug for me. Despite the side effects of weight gain, constipation, and acne on my face and body, I don’t even care because it’s the best I’ve felt in more than 5 years. I’ll take the acne and backne any day.”
Jessie spent hundreds of dollars on skin products and through patient support groups she was recommended CeraVe Moisturizing Cream with Salicylic Acid and CeraVe Body Wash with Salicylic Acid and has noticed a huge improvement. Both products are available over the counter.
Madison: “I am on Rinvoq and I hate it. Let’s say first, it works fast. Within 48 hours, my symptoms were gone, and it’s done a great job at keeping my UC in check. However, the side effects are awful. Acne is the most common side effect and I have it everywhere. My face used to be dry, but now it’s VERY oily. My cholesterol has gone up, which is a known side effect and doctors are keeping close tabs on it. Lastly, weight gain. Weight gain was recently acknowledged as a side effect and I’ve had that, too. The first-generation JAK inhibitors were notorious for weight gain, so I’m not sure why it wasn’t acknowledged in this second generation.”
Madison adds that it’s hard to acknowledge that Rinvoq is working well, but it comes with its fair share of side effects. While the side effects are annoying, she says they are not as bad as a flare.
Alexandra: “I took Rinvoq for 5 months. It did absolutely nothing for my UC, but it gave me horrible acne.”
Lisa: “I was on 45 mg for 3 months. I hated it. I had some sort of infection the entire time and had bruises everywhere. I started Skyrizi three days ago.”
Elizabeth: “I’ve had great results on Rinvoq, I take 30 mg along with Entyvio. My only complaint with Rinvoq is the acne.”
Jenna: “I just stopped Rinvoq. I had a horrible face rash as a side effect. It seemed like an acne flare when it started back in early August and no matter what I tried, it got worse and worse. My dermatologist and doctors both believed it was some sort of rash caused by being on immunosuppressant drugs and stopped my Rinvoq. I took an anti-parasitic and the acne is mostly cleared up.”
Kelly: “I started Rinvoq and only completed 6 weeks (the loading dose and start of the treatment). Insurance issues were part of the reason why I stopped taking it. I also knew that I wanted another child. If I was able to…and there were minimal to no studies for a safe pregnancy. The only symptoms I had were small rashes on my hands and feet, kind of pimple like, not painful or concerning…just something I noticed.”
Jennifer V.: “On Rinvoq and love it!! It’s a pill so it’s easy and it has put me mostly into a therapeutic remission. The cons: weight gain, fatigue, elevated liver enzymes, and anemia. All in all, if you are not having any more children, I would highly recommend this medication. I would need to see more time and research if I were to recommend it prior to pregnancy.”
Jennifer V. had to go off Rinvoq last week while she was taking Paxlovid to clear up Covid and she lost weight for the first time in ages. Now she says she’s back on Rinvoq and the weight is coming right back.
Emily: “I have had Crohn’s and lupus since 2020 and I took the highest dosage of Rinvoq, and it didn’t do much to help me. While I was on it, I thought I saw some improvements, but as soon as I went off it, I realized it wasn’t doing much good. It made my skin break out really bad. I often would pass the pill whole when going to the bathroom. It’s a big pill, easy to see. I’m on Skyrizi now and hoping to reach remission.”
Kendall: “I’ve been on Rinvoq about 3 months. My symptoms have improved, but I’m surprised at how many of the side effects I have experienced: styes, mouth sores, cold sores, and acne. I’m planning to stay on it. My IBD is not stable yet, but I’m hopeful Rinvoq will get me there. Afterwards, I’ll see if diet and lifestyle can maintain remission. It’s nice that you can start and stop Rinvoq!”
Implications for pregnancy and breastfeeding to consider
Sarah: “I just started Rinvoq and it’s helping me come out of a flare up. I am wrapping up my third month. I started to feel improvement after two weeks. It’s such a relief to take a pill after self-injecting for the past 15 years. So far, I don’t have any bad side effects. The only thing that stresses me out is that you can’t be pregnant while taking it, so as a 34-year-old, ready to have a second child, it’s in the back of my mind—how am I going to get off (and back on this), how will I keep my Crohn’s under control when I’m pregnant next? But, in the meantime, I’m grateful that it’s helped me get control over a bad flare that caused me to take a medical leave from my job.”
Allie: “I feel like I had a good experience on Rinvoq. I would say the good is that it works very fast. I was starting to feel better from my flare within 3 days. I was able to get off prednisone because it worked so quickly. The bad is that Rinvoq made me gain weight that I haven’t been able to lose, but my doctors won’t confirm it’s related to the medication. I also felt very bloated all the time. I did not like having to take a pill every day (going from being on Entyvio), so I would sometimes forget to take it. The last thing for me is that I’m still hoping to have another child and it’s not safe for pregnancy, so it was not a long-term option for me, even though it helped me achieve healing from a flare.”
Carmen started taking Rinvoq in February after multiple biologics and non-biologics failed to treat and manage her ulcerative colitis. So far, she says her experience has been very positive. She went into clinical remission within the first month of being prescribed 45 mg.
“I’ve since been tapered down to 15 mg and it’s still looking very positive. Bloods, calprotectin, and how I generally feel has massively improved, along with my quality of life. The negatives I’ve experienced so far have been some mild skin issues, mainly rashes on my face, chest, and upper back, this is currently controlled by over-the-counter salicylic acid face and body wash. I’ve also picked up a few fungal infections and have lost my big toenail because of one of the infections that required antibiotics. For me, these are minor issues and outweigh the overall treatment plan. My GI believes as we’ve decreased the dose to 15 mg, that these minor side effects will disperse over time.”
Carmen says taking a once daily pill is much simpler than some of the other biologic drugs that require visiting an infusion center and taking multiple other medications either intravenously or orally. The cost for me is relatively high for Rinvoq at $150 a month, but this will depend on what medical insurance and copay you have. All in all, Carmen says Rinvoq has been a positive experience and has done what other medications have failed to do.
Important Considerations Regarding Family Planning While on Rinvoq
Dr. Uma Mahadevan, MD, Director of Colitis and Crohn’s Disease Center at University of California San Francisco and lead investigator of the Pregnancy in IBD and Neonatal Outcomes study (PIANO) says when it comes to Rinvoq, the medication has been associated with birth defects in animals at the same dose as given to humans (30 mg), so she avoids prescribing this in pregnancy.
“I do not prescribe Rinvoq to someone who is about to get pregnant. However, Rinvoq is generally given to people who have not responded to anti-TNF, so if Rinvoq is the best medicine for them, I do not hold the fact that they are a woman of child-bearing age against them and give them the therapy to best put them in remission.”
Dr. Mahadevan says if a woman is on Rinvoq and becomes pregnant she has successfully transitioned patients to Skyrizi. This can be more challenging with UC as there are fewer options. The PIANO study is currently researching the safety and efficacy of these drugs. There are several Skyrizi patients being monitored right now and 2 Rinvoq patients so far. You can learn more about being a part of PIANO here. I participated in PIANO with my youngest child as an IBD mom who is on Humira. Being a part of this research is invaluable for our community and helps current and future families.
It’s believed that Rinvoq crosses into breastmilk, so you should avoid feeding your baby that way if you are taking this medication.
Rinvoq Complete Patient Support
Much like other biologics, there are patient support services in place that you want to be aware of. RINVOQ Complete provides personalized patient support when you need it. With RINVOQ Complete, you get 1-to-1 assistance with finding potential ways to save on the cost of your prescription and more. I use Humira Complete for my prescription needs.
You can also get help making sense of your insurance and finding ways to fit Rinvoq into your everyday routine.
If you have commercial insurance, you may be eligible to pay as little as $5 a month for your prescription with the RINVOQ Complete Savings Card. Click here to sign up for your RINVOQ Complete savings card.
Final thoughts
It’s important to remember that just because someone has a miraculous experience or a terrible one with a specific drug, does not mean that you will. I will say, with all the biologics that I’ve covered on Lights, Camera, Crohn’s the visible side effects (weight gain and acne specifically) were the most widespread and common among the patient population. So many of you said you felt guilty feeling “vain” about not wanting to be on a drug because of that, and I want you to know those feelings are valid and matter. At the end of the day, we all must measure risk vs. benefit and what matters most when it comes to keeping our IBD in check.
You can check out other Patient Experience articles that I’ve covered here:
It can feel like a bad break up. You build trust and rapport with a medical specialist who feels like family after overseeing your complex chronic health condition for years and then boom out of nowhere you find out they are moving away. Or maybe you’re relocating and trying to rebuild your dream team of health care providers. Whether this change is brought on by you or your care team it can feel a bit overwhelming to start anew.
My gastroenterologist of 8 years announced she was leaving on the Patient Portal in August. I was out running errands with my kids when a fellow IBD patient and friend texted me and shared the news. My heart sank and my stomach dropped, it never crossed my mind that she would ever leave. What do you mean SHE’S leaving? The doctor who finally got me into remission and has kept me there for nearly a decade. The doctor who oversaw all my family planning, pregnancies, and postpartum. The doctor whose rooted me on after each scope and always had an aggressive and thoughtful game plan no matter what twists and turns we face.
Unfortunately, this is the nature of the beast. I wrote a heartfelt “thank you” explaining my genuine gratitude for her efforts to always go above and beyond and all that she did to be extremely responsive and attentive to my needs. For the past 8 years when I send a Portal message, I always received a phone call from her—whether she was in clinic or on her cell. This time was different. This time there was radio silence and a one line canned thank you message from a nurse in the office. Just like that our worlds were not interconnected. I made a point to get my routine safety labs the Monday of her last week so that she could provide insight one last time. This time she didn’t comment on any of them and left September 15th without saying goodbye. It felt a bit like a slap in the face and stung.
As a chronic illness patient, we tend to feel a sense of comfort by care providers who help manage so much of our lives. This was a reminder to me that at the end of the day it’s a job for many and that even though we may feel that closeness, that bond may just be a façade. At the same time, I’ve also learned that some medical settings don’t allow doctors to communicate with patients, so who knows.
This week on Lights, Camera, Crohn’s I share tips for how I’m navigating finding a new GI that I think may help you along the way. I’m still feeling a bit lost and don’t know what the future is going to hold or what IBD Center I am going to land at, but I want to take you along for the ride.
The first steps to take
If a care provider is leaving the office or moving out of state, you will generally be placed with another doctor from the same team. This is not always a seamless transition though. Each doctor has a reputation. Some people want to be seen by a female care provider; others want a male. Years of experience and the college they graduated from and where they did residency may be of utmost importance to you. Just because the office says you can see “so and so” now, doesn’t mean you can’t speak up and advocate for what you’re looking for. In the realm of the healthcare world, you’re back to being “single” now and you can find who is the right match for you. Don’t feel pressured into anything. The long-term goal here is for a long-lasting relationship with a care provider who makes you feel like more than a number.
I have seen three different GIs in my 18+ years since my Crohn’s disease diagnosis. The first was incredible. I just so happened to meet him during my initial hospital stay, the day after I was diagnosed in the emergency room. He practices in my hometown (a Chicago suburb) and oversaw my care for a decade—even when I lived in Minnesota and Wisconsin while I was a news reporter and anchor.
When I moved to St. Louis in 2014 and my Crohn’s was flaring, I knew I needed to find a local provider. So once again, during a hospitalization for a bowel obstruction, I connected with the GI who was doing rounds at the hospital and loved his bedside manner. I felt safe and like I had found another great doctor. Unfortunately, while under his care I was very sick. We couldn’t figure out why my Crohn’s was so out of control. By the third hospitalization in 15 months, even while ramping up Humira injections to every week, and after several ER visits, his partner called me while I was in the hospital and said I needed an MRE to get to the bottom of what was happening. I did the MRE and was called back by that same doctor (not my GI) and he coldly told me over the phone that I needed a bowel resection—either the next day or in 10 days. He said I could go home and build up my strength. I chose to wait the 10 days. My actual GI never visited me in the hospital, never followed up…I knew it was time to drop him like a bad habit.
Enter in my most recent GI. Everyone raved about her. My colorectal surgeon and friends from the local Crohn’s and Colitis Foundation chapter all said she was the one to go to. So, I did…and now 8 years later I feel a bit stressed about starting the hunt for a great doctor all over again.
Amazing doctors can fall right into your lap, but sometimes you need to do some digging and research.
The behind-the-scenes work
At the end of the day, I find the most helpful advice comes from fellow IBD patients. There are several ways you can approach this.
Look up GIs in your area who specialize in IBD. This is key. You don’t want a run of the mill GI, if you have Crohn’s or ulcerative colitis you need a GI who specializes in IBD.
Check out online reviews and what people have to say about them.
Do a call out on your social media and see if anyone locally has any recommendations or personal experience. You want to hear the good, the bad, and the ugly. I have gained incredible insight this way. I had one fellow IBD friend message me about her experience with the provider I made an appointment with—and it made me a bit concerned. This week during my well woman visit, another IBD mom, who happens to work as a nurse practitioner in my OB’s office, told me about her awesome GI who is in the same group—so I plan to switch my appointment per her recommendation. This insight is GOLD.
Interview several GIs. Don’t feel pigeon-holed by only meeting with one possible new provider. Make a few appointments and see who jives the best with you. I have two appointments in January with two new GIs. My last clinic appointment was March 2023. I was supposed to be seen in October…that’s the soonest I can be seen.
Come up with a list of questions and see whose responses give you peace of mind and make you feel empowered to take on your IBD.
Be mindful of the office staff and how they treat you on the phone.
Make a pros and cons list of staying with your current GI team or starting fresh.
Decide if the doctor’s gender matters to you. I’ve had two male GIs and one female. I personally enjoyed having a female during my family planning and pregnancies, but now that my family complete it’s not *as* important to me, but still preferred.
To switch offices all your records and a referral will be needed by your current office, so make sure all your ducks are in a row and that the two offices have communicated. I made it clear with my current office that I am being seen by both IBD Centers, to see who is the best fit for me.
What questions to ask possible new providers
You may be wondering what to ask a new doctor or where to even start with your saga-long health history. We all know how rushed clinic appointments can feel. Here are some of the questions I plan to ask in January once we get the basic health questions out of the way.
How often will you be seeing me in clinic?
How often do you like patients to get labs? What kind of labs will you draw?
Will I keep my current medication regiment (ex. Biologic)? Will I stay with the originator/reference product biologic or are you planning to switch me to a biosimilar. Note: For you to be switched, your GI has to write a script for that to happen.
What days of the week are you in the clinic to see patients? If you have childcare or work conflicts, this can help so you know if their schedule/availability matches with your needs.
What hospital(s) do you treat at?
Are you apart of any research studies going on?
How often do you like patients to get a colonoscopy?
If I need pain medication to manage my symptoms, will you prescribe it? My last GI refused to—and I found that to be ridiculous.
Do you perform intestinal ultrasound here and if you don’t yet, when do you plan to?
If I run into insurance issues, will you go to bat for me and write an appeal letter or do what it takes to make sure I receive my medications on time?
Final thoughts
It’s jarring and takes a lot of time and energy to find a new provider but stay positive and know there are so many incredible gastroenterologists out there who genuinely care about patients and about helping our community out in any way they can. You are not civilly bound or married to your doctor—it’s not about hurting feelings or trying not to be a bother, be bold and do what’s best for you. I’m grateful to be in remission right now. My heart hurts knowing so many patients going through this same ordeal, while flaring, don’t have the luxury of taking their time or the privilege of living near an IBD Center with options. I always try and tell myself and I think this perspective will help bring you clarity, too—think of yourself at your sickest, lying in a hospital bed. Would you want that person leading your care? If there is any doubt or hesitation, keep looking for the right doctor for you.
It’s no surprise IBD impacts so much more than just our guts. Not only is there the gut and brain connection, but also the complex nature of our chronic illness(es) that can cause serious anxiety, depression, and mental health issues. The isolating nature of Crohn’s disease and ulcerative colitis, the unknowingness of what the next day holds, and the never-ending laundry list of procedures, labs, scans, and surgeries, year after year is a lot for any person to go through.
Even though I’ve lived with Crohn’s disease for more than 18 years, and have seen three different gastroenterologists in that time, not once has my mental health been brought up during a clinic appointment. When treating a person for IBD, the health of the whole person needs to be considered. I ran a poll on Instagram asking the IBD community if they’ve ever been to therapy. Out of 185 respondents, 70% seek therapy, 18% have not, and 12% are considering it.
I did an article in September 2020 about why a specific public bathroom at a grocery store I used to shop at triggers me and shared tactics for coping. You can read the article that featured Dr. Tiffany Taft here.
This week on Lights, Camera, Crohn’s we hear from those in our community about the advice that’s resonated with them the most since receiving their IBD diagnosis.
The words that have made a lasting impact
Olivia: “3% effort is still effort. You’re not going to be able to give 100% every day and that’s OK. Your best can look different from day to day.”
Julie: “It’s not your fault, you didn’t do anything wrong.”
Kristen: “You can’t drive forward if you’re always looking in the rearview mirror.”
Sarah: “Medical trauma is trauma and to give myself credit for all I have overcome.”
Cindy: “Remove all IBD related stressors from the bedroom to avoid impacting sleep. In our case, this meant no Humira injections for my daughter while sitting on the bed or nearby it.”
Tina: “Imitation is the best form of flattery.”
Lauren: “Don’t Google things you’re worried about, like symptoms.”
Jennifer: “Stay in the present.”
Heather: “Sometimes you just need to take a nap!”
Myisha: “If it’s not going to matter in five years, don’t give it five minutes of your energy.”
Kate: “It’s not your fault.”
Susan: “I’ve never seen a therapist, but I always tell myself it could always be worse.”
Stacey said: “You can’t control how seriously people take Covid. You can only control how you protect your physical and mental health. You have to put your health first. And, if people don’t agree with your choices, then that’s their problem. You can’t risk your health just to make it easy for others or to placate them. You come first in your life.”
Robin: “The “things” I do—my work advocating for others, supporting others, helping others face challenges with their diseases—I deserve that, too. Not from other people, but from myself. The beauty in therapy is that you’re receiving a non-biased/outsider opinion. This person that has no side and will sometimes say something you’ve heard 1,000 times in a way you’ve never heard before or even in a better way that allows you to really listen to what’s being said. To absorb it. Even to say it multiple times with no judgement if that’s what’s needed. Also, EMDR, which is a whole other thing and only part of the therapy experience.”
What is EMDR therapy?
Several people said EMDR therapy was their favorite and has been lifechanging. So, what exactly is it? Eye movement desensitization and reprocessing (EMDR) is a fairly new, non-traditional type of psychotherapy that’s popular for treating post-traumatic stress disorder. EMDR focuses on the natural tendencies our brains have for healing from traumatic memories. There are mental blocks (such as feelings of self-esteem issues and powerlessness) that can prevent us from healing. During EMDR, you are allowed to process the bad memories and experiences to start healing yourself. This helps our brains process challenging thoughts and feelings in a healthier way. Chances are through your patient journey you’ve endured several vivid and significantly painful moments that you haven’t been able to process and heal from.
Supportive Resources about managing mental health and IBD
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