Month: January 2024

Aging and IBD: Key Considerations for the Patient Community

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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?

A study by The Lancet titled, “Is it time to include older adults in inflammatory bowel disease trials? A call for action shares that “the therapeutic management of older patients with IBD is challenging, particularly because of the absence of evidence-based guidelines for these patients, who too frequently are excluded from clinical trials.”

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 input from 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.

Check out this YouTube Video from the Crohn’s and Colitis Foundation entitled, “Aging and IBD: What Crohn’s and Colitis Patients Should Know” to learn more.

Diagnosed with IBD? What I want you to know as a veteran Crohn’s patient

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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.

Dental Health and IBD: What’s the correlation?

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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.