Words of Wisdom: What IBD Moms Wish They Could Tell Their Younger Selves

October 28, 2024October 29, 20241 Comment

If you’re a young girl or woman diagnosed with a chronic illness, prior or during your “childbearing” years, chances are you or your parents may wonder what this means for your future family. When I was diagnosed with Crohn’s disease at age 21 in 2005, the thought of settling down and having kids was not on the radar but ever since I was a little girl I always aspired to be a mom. Fast forward to 2008, I was hospitalized for an abscess and taken off Mesalamine and put on a biologic injection (Humira). I can still picture the discussion with my GI. My mom sitting on the couch alongside the hospital window, looking at me wide-eyed, and us wondering if I’d ever be able to have children on my new medication. A medication I was told I’d be on for the rest of my life. I was 24. Back then there was nowhere near the research or guidance available like we have today.

*August 2008-One month after starting Humira and on heavy duty steroids.*

It was the first time I really began to question and worry about whether I’d physically be able to be a mom. As the flare ups, ER visits, hospitalizations, and tests persisted for years, I honestly didn’t have the energy to think about what my life would look like down the road, I only had the energy to focus on what was going on in that moment. I was not a patient advocate and looking back I was a bit naïve and uneducated about what it meant to have not reached remission.

When I met my husband in 2013, little did we know that for the next two years I would be at my sickest. What we did know—is that we both wanted kids one day. After my third bowel obstruction hospitalization in 15 months, I needed bowel resection surgery in August 2015, which FINALLY put me into surgical remission. Ironically, I was engaged to be married. Babies were on the brain. Since I lived a decade without remission, we knew we were going to have to try for a baby as soon as we got married, as remission can be fleeting. At 32 years old, I didn’t want to take any chances.

A lot has happened since we got married. We got pregnant a month after getting married. Lost our second baby around 7 weeks. And then had our rainbow baby in 2019 and our caboose of the family in 2021. If you’ve followed my advocacy and blog, you know I’m passionate about showing all that’s possible despite your IBD. I know each of our journeys is incredibly intricate and unique, each of us deals with our own set of challenges. But I also know that my younger self would have benefited immensely from seeing and hearing fellow women who’ve been there and done it and have families to show for it despite their chronic illness.

This week on Lights, Camera, Crohn’s we hear from several IBD moms—with kids ranging from newborn age to now adults—who offer amazing perspective that I hope will make you feel comfort in what the future could hold for you.

What IBD moms want you to know

Jennifer: “It’s 100000000 percent worth it! And be honest with your kids and spouse about how you are feeling and what you are going through. Of course, make it age appropriate, but they need to know the struggle.”

Liz: “Your kids will learn their limits and love on you when you need rest. It’s ok to go slow. Even if you flare after birth, you will come out of it.”

Amber: “I would tell a younger me that my body WAS capable of carrying and delivering healthy BIG (lol) babies. After struggling with fertility and then conceiving twins and carrying them full-term, I realized my body hadn’t failed me (how I think so many of us with IBD feel. Motherhood is possible for us and thank you Natalie for reminding us of that.”

“Find your people and be honest with them about how you are doing. Don’t ever feel bad asking for help. It truly takes a village to help.”

Brooke: “One day, you will be better. One day, you will coach little league and make the playoffs. One day, you will work on Capitol Hill. One day, you will live in another country. One day, you will be the best mom and you will thrive through IBD. You’re almost there!”

Jaime: “I would tell my younger self that fertility is not something you take for granted especially with a chronic inflammatory disease that can leave you prone to developing scar tissue. I’d also tell her that IBD may make life hard for awhile but with the right doctors, life will improve and the family you dreamed of having will happen.”

Jessica: “Motherhood is hard. It’s ever harder when you have an illness. It’s ok to rest when needed without feeling guilty.”

Kaitlyn: “Your kiddos are more resilient and adaptable than you think they are. I had a major flare about 7 months after my son was born. I put off being admitted to the hospital for weeks because I was so scared and felt guilty for leaving my baby and thinking he would feel abandoned without any way to explain to him that I was gone. He ended up having a blast with my husband for a week and I finally was able to achieve some sense of relief (slowly coming out of that flare, but there is a light at the end of the tunnel). Also, you’re not a bad mom for not being able to do the things you think you should be able to do (Spoiler Alert: Your baby doesn’t know other moms take their babies on long walks around the park and don’t have to drag you into every public bathroom you pass while running errands).”

Patti: “You only get one chance to raise your babies, so don’t sweat the small stuff. And frequently remind yourself (on the roughest days) that you really ARE doing the absolute best you can…and that is OKAY.”

Alyssa: “Sometimes you’ll be holding your baby on the toilet, but you’ll be okay, and your baby will be okay. The road will be tough, but so worth it. Some days the kids will watch more TV than you want, but you must take care of yourself too so you can be present for them. They’re resilient and will love you no matter what.”

Ally: “Rest when you can! Your body will most likely go into remission once pregnant so not need to get scared or nervous about it.”

Liv: “Make yourself and your health a priority. I went into a huge flare after having my first baby because I was SO focused on her and not eating properly or showering or taking care of me. Meal prep to make the mental load of eating easier! And ask for help!”

Patra: “Don’t be so hard on yourself when you feel the need to rest.”

Phoebe: “I would tell her to follow Natalie Hayden’s blog and IG account (haha)…seriously though, when I see you and other people share about their pregnancies and family life, it gave me hope to have my child. I would also tell my younger self it’s ok if you’re a mom with chronic illness! My younger self assumed I had to have a perfectly healthy body to have babies and raise babies.”

“Take care of yourself, even if it means asking your loved ones to look for signs of your anxiety and exhaustion that you may just be trying to push through or ignore.”

Jenni: “I would tell myself not to be so hard on myself. I would say don’t take on all the sick mom guilt. To let them watch movies and eat cereal without stressing about it when I wasn’t feeling well. I would also say…you don’t have to pretend to be brave all the time. It’s ok for them to see you cry or feel frustrated or be sick. They can handle it, and it is creating such strong, caring, empathetic humans!”

Courtney: “I would tell my younger self that I am enough for my kids and that they will be better people because of what they learn and see.”

Mallory: “Your children are strong, and they understand that it’s not your fault.”

Meg: “You did the right thing by staying on your meds through pregnancy and your baby is perfect.”

Kelly: “You are enough. Don’t feel like you’re not able to be as great of a mom as a healthy mom is.”

Ryann: “All you need is love. While I’m sure my son loves the active days when we’re doing lots of activities, he’ll be fine on the days that I’m laying down on the couch as long as I show him love.”

Rachel: “You’re stronger than you know, and everything will work out no matter what happens.”

Amanda: “Not to let fear of the “whatifs” cripple you.”

Brenda: “You will do great and be sure to find a selfless hands-on partner.”

Kristin: “Give yourself some grace. I didn’t get diagnosed or have any Crohn’s issues until my son was 15 months old. The symptoms came on like wildfire and it took a village to help until I figured it all out.”

Anna: “I want to jump in this convo as a 50 year old who wanted to be a mom, but due to the severity of my disease (diagnosed at 18), was told at 29 to have children by 35 due to being high risk and at 34, I was told not to carry due to complications and unfortunately adoption was not in my future as a single woman with severe illness no another option (freezing eggs, etc.) at that point in time. I feel like that is the MAIN thing Crohn’s stole from me! After many years of therapy, I cope with it very well now; however, I still from time to time mourn not being able to have children that aren’t four-legged…#dogmama!”

Courtney: “I would tell my younger self not to worry about having to use the bathroom urgently so much and that you’ll be carrying around diapers, wipes, and a little potty in your car for years. Your kids will also be able to relate to having accidents. I would all tell her that fertility declines a lot faster for people with chronic inflammation and to get your AMH levels checked early. Or think about freezing embryos if you want a big family in your mid to late thirties. Lastly, that breastfeeding won’t stop your kid from having IBD, so don’t worry about giving them formula.”

Ashley: “So, one time I posted on Reddit about how I have ulcerative colitis and didn’t know if I should have kids…I got a lot of responses. I got 56 that told me not to do it. How they were miserable. Or how their mom had it and they suffered as a kid. It was honestly traumatizing. And int that moment, I made the decision not to have kids.”

Tricia: “There will be some really tough days with your illness, and trying to take care of your kids, but you’ll get through this, and better days are ahead.”

Shannon: “Nap when the baby naps is legit. But also, when the baby is 12, you’re still going to need to take a nap. And that’s okay. It doesn’t make you less than because your body requires rest and reset. It is productive to take a nap if it’s necessary.”

Chanel: “That this chronic illness has a direct effect on pregnancy. Having this disease since 7 years old, no doctors ever thought it would be helpful to mention how important being in remission was before getting pregnant or trying for a baby until I was 26 years old and happened to nonchalantly mention to my doctor at the time that we were going to start trying.”

Jennifer: “Don’t worry! You will be blessed with two beautiful children and IBD will not define who you are and will not hold you back from anything!”

Stephanie: “Be easy on yourself and don’t put high expectations on yourself. It will all be worth it. Take it a day at a time and do what you need to do to feel better. Your kids will learn and be more empathetic and compassionate people for it.”

Bhavna: “It’s going to be hard. More emotionally than physically. You will even doubt whether you should have kids for fear of passing it on. I know eventually I did. My daughter now has an autoimmune condition. But despite all of this, you will make it through. Stronger. Resilient. Sometimes a tad sadder.”

Rosanne: “Kids are more resilient than you think. Motherhood is worth having to potentially miss a few things because of a flare or a difficult day. Your kids will understand and be stronger because of it.”

Pie: “Mum guilt will chew you up on the days that you can’t get out of bed. It’s okay, your little one will grow up to be empathetic and understanding of others.”

Amy: “I was completely well for the 8 years I was pregnant and breastfeeding my three boys. Almost a year after finishing feeding my youngest, I immediately went into a massive flare and have not managed to recover yet (10 months now). I felt betrayed all over again by my body, just at the time when I needed it to be strong. I would tell her that the most important thing is that you’re well, so that you can be the best version of yourself. Children are beautiful, they will take you exactly as you. Try to follow their lead. You are enough. They will forget at times you were absent due to resting, appointments, etc. But they will remember how hard you fought for your health. My middle school boy now seems to be suffering with gastro issues and it’s essential to me that I show him that I have the disease, it does not have me (enough though some days that doesn’t quite work out).”

Megan: “Some days are hard, but you can do it! You will be shocked at how much compassion it gives your children. They understand “mommy doesn’t feel well” at such an early age and really want to help take care of us. Vivi asks me daily, “Mommy, does your belly hurt today?” and says, “I’ll take care of you, Mommy.”

Kara: “Don’t forget to take care of you before it’s too late! You are doing your best and your children will only remember that later. My kids are 8 & 10 now, but when I was pregnant with my youngest, I went into a flare and refused to tell anyone or acknowledge it, thinking it would make me a bad/weak mom…so dumb right? By the time my youngest was 1, I was making an appointment for a temporary ileostomy bag. But my kids only remember the sweet stuff.”

Stephanie: “Simply, it’s possible! It was worried for so long that it wasn’t possible, especially once on a biologic and your Instagram page, Natalie, gave me so much hope! Now, less than 2 weeks from delivering my second baby (but my first pregnancy on a biologic).”

Marnie: “I would tell my kids your disease becomes part of your everyday routine, but it doesn’t define you.”

Crystal: “Make sure your baby learns to take a bottle in case you end up in the hospital with a flare.”

Leslie: “Don’t be scared to be on all the medication you need. You’ll get pregnant one day like you always dreamed.”

Keyla: “This journey will be hard but no matter what your little one becomes stronger through it with you.”

Christine: “Here I am celebrating my 47th birthday with my teenagers! One of the first questions I asked my doctor, according to my mom, was will I be able to have kids? That was when I was 23 years old. Here I am at 47, and they have seen me at my best, and unfortunately, my worst. They are truly the reason why I keep going and want to keep fighting at the worst of times.”

Amy: “Your journey might look different than others, but you can still have a family. Also, accept help when you need it.”

Robin: “My kiddos are 27 and 25 now and I was diagnosed when the 27-year-old was 2.5 and the 25-year-old was a baby. She turned one and took her first steps in the family visiting room at the hospital. So, I have the benefit of living with the fruits of my parenting labor. My IBD has taught me that life is precious. Each moment is precious. Because of this, I really tried to take advantage of life when I was feeling well. AND ALSO, I tended to push through when I wasn’t feeling well if something was important to my family, specifically my children. Your first instinct as a parent will be to protect your children from what you are going through – but it’s ok to be open about what you are experiencing in age-appropriate ways. There is no one perfect way to be a parent, much less be a parent with a chronic illness. Give yourself some GRACE.

If dads, or aunts, or family friends, or grandparents are jumping in to chauffeur your kiddos and/or take them to do fun things that you can’t do – IT STILL COUNTS! Your kids are still getting to do the thing. Your kiddos will benefit from having other adults they know and trust in their lives.

Parenting isn’t for the faint of heart. Connect with people that can share the burden. It’s ok to ask for help. I write this while remembering my mantra was “suck it up and figure it out” when they were little. Granted – I was a single parent for a lot of their young life, and I was fortunate to have a strong support system. Even with the support it was difficult to ask for help. SO, ASK FOR AND ACCEPT HELP.

I don’t know what kind of mom I would have been without IBD, but based on who my girls are now, I’m ok with the mom I was and am with IBD.”

Final Thoughts

Hearing this firsthand perspective from all these incredible IBD moms is so inspiring and comforting. It’s a reminder we are not alone in our struggles or our fears—and let’s face it, motherhood isn’t all sunshine and rainbows. But the beauty motherhood brings to our lives and the unbelievable love you feel for your children is the sunshine and the rainbows that makes it all worth it. When you’re an IBD mom, yes there’s a lot of internalized pain and worry. But there’s also so much motivation and joy found in looking into the eyes of your children and knowing that you are enough and will always be enough for them because you’re you.

There are times when their diapers and bathroom habits may set off alarm signals in your head. Don’t think I haven’t brought one of my kids to the ER because I was fearful, they had IBD…wasn’t that. There have been moments where I’ve been bent over making school lunches. There are times I’m on the couch with a heating pad during bedtime stories or in the bathroom mapping out my game plan of how life will go on if I’m hospitalized, and all the moving places I have to orchestrate if I’m out of commission. But SO much overshadows those moments.

As an IBD mom of three, my kids give me such purpose to celebrate each day and soak in each experience I’m blessed to share with them. They provide me with renewed faith in my body and all that I’m capable of. They remind me to laugh and not take life so seriously. When I’m in pain or going through prep for a scope or an uncomfortable procedure my thoughts float to their sweet faces and the incredible memories we’ve shared and it’s the best reprieve from my painful current reality.

When you’re a mom with chronic illness, sure the days can feel long and the years short…but you have a different level of gratitude for what may seem mundane to others. You will second guess yourself more than your children ever will. They are sponges, watching and soaking up their lived experience with you and without even doing anything you’re raising a children with innate empathy and compassion that you’ll see play out as they grow up—I’ve seen it for YEARS with my kids—and while I wish they weren’t the way they are because of my health, I also wouldn’t have it any other way. IBD is a family disease, it impacts way more than just the patient and know that if you choose to carry children, adopt children, or have babies through surrogacy, you are never a burden to your family. You are enough and always will be to your beautiful babies.

My family planning advice for you

My advice family planning

Have the discussion about your future 3-5 years out (if possible) so you can get a game plan in place. Something as simple as letting your provider know…”someday I hope to be a mom”…is sufficient. This sets the stage for what makes the most sense medication wise, targeting and tracking remission, planning scopes so you can get the ‘green light’ before conception, etc.
Do not try and conceive if you haven’t been in remission for at least 3-6 months. Sure, pregnancies are not always planned and can be a surprise but try not to get pregnant while you’re flaring or have active disease as that increases the likelihood of flaring during pregnancy and after delivery.
Once you find out you’re pregnant, alert your GI the same day as your OBGYN and get the ball rolling on finding a maternal fetal medicine (high risk OB) to be part of your care team.
Do not try and go rogue and go off all medications for pregnancy. Talk with your care team. Do the research so you can see firsthand about the safety and efficacy of most IBD meds in pregnancy and breastfeeding and be confident that by keeping yourself well and your disease controlled in pregnancy, you are helping you and your baby.
Check out the PIANO study and MotherToBaby research opportunities so you can help pave the way for future IBD moms and contribute to research. It’s so rewarding, and your voice and input makes a world of difference. My older two were part of MotherToBaby studies and my youngest is part of PIANO, he’s being “followed” until age 18!
Never hesitate to reach out to fellow women with IBD on social media who are moms and receive firsthand advice about their journey so you can feel a bit more at ease about yours.

How to Appeal Insurance Decisions and Fight for the Care You Deserve

September 30, 2024September 30, 2024Leave a comment

If it’s happened to you, you know the feeling all too well. When I received a letter in the mail informing me that the biologic injection, I had been on for 16 years was no longer going to be covered, my stomach flipped, and my heart sank. When you live with a complicated disease like Crohn’s or ulcerative colitis and find a therapy that keeps your health in check and your IBD well-controlled, it’s extremely stressful and daunting to face the worry of being forced to switch your medication to a biosimilar or a different biologic all together.

Like many patients, I asked my gastroenterologist to appeal the forced medication switch. Even though I was almost positive we would be denied, I did not want to go down without a fight. As expected, within days of my GI’s appeal, we were told by insurance that Humira would no longer be covered and that I would need to choose a biosimilar or a different drug class all together moving forward.

I chose to go on the biosimilar Hyrimoz for many reasons—the first being that anti-TNF drugs have worked well for me for YEARS, by choosing to go off it and switch to a different drug class, I ran the risk of building up antibodies and possibly not responding as well to treatment. I also have a comfort level with self-injections and know how I have typically responded to anti-TNF medication in the past.

The emotions and heartache of having to say goodbye to a medication that carried me through for 16 years, allowed me to bring three healthy babies into this world, and stay out of the emergency room and hospital since becoming a mom 7.5 years ago tore me apart. I sobbed. I stressed. I was anxious.

Switching to a biosimilar—the emotional and physical toll

Much to my dismay, I started Hyrimoz in July 2024. The first eight days I felt the same and then my health began to crumble. I lasted four injections—and during that time I went from being in deep remission for years to needing pain medication to make it through elementary school PTO meetings and while coaching my kindergarten soccer team. I went from feeling well most of the time to running to the bathroom 15+ times a day and almost having accidents in public. I went from being able to eat whatever I wanted to worrying about how consuming anything was going to make me feel. I spent nights curled up in pain and days feeling bloated and on edge about whether every decision I made was going to make me unwell.

I knew something had to change. I refused to have my quality of life ripped from me without speaking up. I kept a detailed journal every single day since I started the biosimilar. I articulated my concerns to my care team repeatedly over the Patient Portal. We ran extra labs, I did a telehealth appointment, I spoke with GIs around the United States I have come to know and trust through my patient advocacy work. My care team told me that meeting in person for a clinic appointment or over telehealth would help build our case, as that carries more weight than just communicating over the Portal. Keep that in mind.

This week on Lights, Camera, Crohn’s I offer tips for building your case, writing your appeal letter, and making sure your voice is heard. Patients are constantly made to feel less than. It’s all about the profits and not about the patients. This needs to stop. Insurance companies and specialty pharmacies need to stop making our lives so damn difficult and start to recognize the havoc they cause by delaying treatment, blocking treatment options, and forcing us to change a medication that finally controls our disease. Living and managing chronic illness is a full-time job in this country. The hours and days wasted and spent on the phone dealing with all the red tape is an absolute nightmare, and unless you’ve experienced it, you have no clue the headaches it causes, the time suck it is, and how it puts the quality of our lives in jeopardy.

Keeping track of it all

When living with IBD, the bad days come and go and oftentimes we forget just how often or how horribly we feel because our “normal” is not normal. By journaling or writing in the Notes app on your phone anytime anything with your health is awry, this helps paint a clear picture for not only you, but your providers. If you can say, “On Tuesday, September 24^th I went to the bathroom 10 times, I couldn’t eat, I had joint pain in my hands, and abdominal pain that required a heating pad”—this illustrates the complexity of your symptoms. Imagine having that type of intel for two months. These details help your appeal in a big way. My IBD Nurse told me that she believes my typed-out symptom journal made all the difference in winning our second appeal.

So, take notes and be as descriptive as possible. If you have a random headache and you’re not sure why, write it down. If you get new pain, you haven’t experienced before keep track of it. If you eat and must run right to the bathroom or start feeling pain jot it down.

Many of my symptoms I’ve dealt with since switching to the biosimilar feel exactly like a Crohn’s flare. After weeks of this, I started to freak out that I was losing my remission all because of a forced medication switch. A world-renowned GI took the time to call me as I was making dinner for my family one night to hear more about my situation. He did this out of the goodness of his heart to provide additional guidance and support. After hearing more about my situation, he believed it was my body having adverse side effects to the biosimilar rather than a Crohn’s flare, since my labs were checking out fine. Everything started to make sense. While he wasn’t sure our appeal would be granted, he listened and empathized with what I was going through.

Writing your own appeal letter

My IBD team recommended I also write a patient letter that they would include with their second appeal. I was happy to take the time to offer my voice and share what the experience of being on a biosimilar was like for me. At the same time, I had never written an appeal letter. Before I started I did my research on how to approach and craft the wording.

I made sure not to come off angry or accusatory. I kept the letter as professional as possible, while also explaining very clearly how horribly I was responding to the medication. I backed up my letter with science and attributed research that’s been done regarding biosimilars. I learned from research published in the Journal of Crohn’s and Colitis (2020) that while around 80% of patients have a seamless transition, 10-20% have a negative response. It’s important to note that just because you are switched to a biosimilar, does not mean your health will deteriorate. Many people thrive and don’t notice a difference, but the issue is—you don’t know how you are going to respond. I went into the transition with an open mind and as positive as possible, but the unknown looms over and it’s emotionally draining to constantly wonder if you are going to feel unwell because of the forced switch.

Tips for expressing yourself in the appeal letter

I will use Humira as an example since that was my experience, but this goes for any biologic/medication.

Start with basic information—your name, date of birth, insurance ID number, and the policy number.
Provide the name of the medication you’ve been switched from (in my case Humira) and the one you’ve been switched to (Hyrimoz).
Mention the date when the change was made.
Clearly state the purpose of the letter. For example, “”I am writing to formally appeal the decision to switch my Crohn’s treatment from Humira to Hyrimoz.”
Briefly provide an overview of your health history with IBD, diagnosis date, and the treatments you’ve tried, hospitalizations/surgeries. If you’ve been on the same treatment for years and it’s helped you, highlight how effective the therapy has been. Mention the stability you’ve achieved with Humira—humanize your story. For instance, “While on Humira I was able to work full-time, have three healthy pregnancies and babies, and be a mom without my health holding me back.”
Reference any previous experiences with other medications that may have failed you or caused side effects.
Emphasize the risk of switching medications after long-term success. For IBD patients, changing medications can result in loss of response, worsening of symptoms or disease progression, potential adverse reactions.
Have your gastroenterologist provide their own letter that emphasizes the risks of switching, the stability you’ve achieved, and their professional recommendation. They will reference any studies that are available and be able to provide medical records showing your history on the medication.
If applicable, reference and cite insurance company policies that include provisions for medical necessity, or any pre-authorization that was previously approved.
Emphasize the impact on your health and finances and highlight the potential cost to both your health and your insurance provider if switching leads to disease flare ups, complications, hospitalizations, or the need for additional screenings, scopes, or treatments.

Close with a strong, respectful request. End the letter with a clear statement, such as:

“For the reasons stated above, I respectfully request that you reconsider your decision and allow me to remain on Humira as prescribed by my doctor.”

I signed my letter:

My family deserves more and so do I.

Sincerely,

Natalie Hayden

Ironically, when I wrote my appeal letter I was dealing with horrible abdominal pain, lying in bed with a heating pad.

Finding out we won the appeal

Once my appeal letter and journal of symptoms were finalized, I sent them to my GI and IBD nurse over the Patient Portal. I was on pins and needles wondering what was going to come next. I sent over the materials on a Friday morning and the following Monday, I received word from my nurse over the Portal that the insurance denied the 2^nd appeal because back in June when my GI submitted the first appeal, he deemed it “urgent”—in doing so, the insurance company considers those appeals “2^nd level appeals”—if those are denied, they consider the case closed. Imagine that— “closing a case” before a patient has even started a different medication. Makes sense…right?! Can’t make this stuff up. When I heard this, I felt incredibly defeated.

My care team was unaware of that and asked for a clinician to review our materials—the insurance company agreed and said there would be a decision in 72 hours. That same night, while I was making dinner for my family, I received an email from CVS Specialty pharmacy saying my prior authorization for Humira had been approved. I couldn’t believe my eyes. I’ll never forget how it felt to see those words and read that email.

My kids happened to be standing around me and I couldn’t help but scream and jump and dance with tears running down my cheeks—I yelled, “MAMA’s GOING BACK ON HER MEDICINE!!!!!” I grew up in Chicago…and for any Chicago Bulls fans from the Michael Jordan days, my celebratory jump was reminiscent of what Jordan did when we beat the Cleveland Cavaliers in 1989 and he pumped his arm over Craig Ehlo.

My kids all smiled and laughed and danced with me, no idea what was really going on. But the celebratory moment was so incredibly jubilant they were smiling ear to ear. These last two months they’ve witnessed me unwell way too many times. It’s a side of my Crohn’s I’m not sure they even knew existed prior to now.

This past Friday night the same abdominal pain I’ve been dealing with began as the kids got off the bus. I had to take a pain pill before an advocacy call that was ironically about How to Deal with Insurance—for an upcoming panel discussion at a medical conference I’m speaking at in December. After my call and rushing through a makeshift meal, I took all three of my kids to my son’s soccer practice and told my friends on the sidelines how sick I felt. I came home and had to take another pain pill, had difficulty with the bedtime routine, and laid on the couch with a heating pad. But it helped to know these shitty days will hopefully be ending.

Looking to the future

This blog article is coming out the same day as I go back on Humira after winning my insurance appeal. While it’s a big win for me, it’s a small win for our community because at the end of the day an incomprehensible number of people are forced off their medications or denied off-label dosing, all so insurance companies see a better bottom line. As patients we can’t stand for this. Medical providers should and need to have the FINAL say in what medications their patients are on and they should always be willing to go to bat for their patients and appeal even if they “know they’ll get denied.” I hear all too often from fellow patients that their GI won’t even appeal in the first place and does not empathize with the fear of being forced on a biosimilar.

For those providers, I ask…can you guarantee, 100%, no doubts whatsoever that your patient will thrive and do just as well on a biosimilar as they did their originator biologic? Does the benefit really outweigh the risk? Should IBD patients who already live with an unpredictable and complicated chronic illness have to endure the stress, medical trauma, and anxiety that result from forced medication switches or denials related to off-label dosing?

As patients, caregivers, and medical providers we are a team. We know what’s right. Doctors and nurses should not have to waste so much energy on fighting for off-label dosing, necessary treatments, and keeping their patients on medications that are working. A HUGE thank you to all the providers and nurses who go above and beyond and out of their way to fight for us and do everything in their power to make sure we receive the medical treatments we need to keep our IBD in check. Your efforts, whether successful or not, are not going unnoticed.

At the end of the day, the big argument is all about “accessibility” and “cost savings” in the United States, but are patients really reaping this benefit here? I paid at most 0-$5 for Humira injections, I paid $0 for Hyrimoz. Do you know how I paid? I paid with living more than two months with health issues that would bring the average person to their knees. I went from being in deep remission to re-living the trauma of how unpredictable life with IBD can be. I paid by being on a biosimilar for 71 days and spending more than half of them with debilitating pain and symptoms.

Big pharma can step up to the plate and lower their absurd pricing on biologics (originator drugs) so that biosimilars are of no monetary benefit to pharmacy benefit managers. Let’s make it an equal playing field and see what happens. Would Big Pharma rather lose all their patients because their biologic is being removed from the insurance formulary or keep patients, lower their costs of the drugs, and keep insurance companies from choosing biosimilars because it saves them money?

As a vocal IBD patient advocate and leader, I understand and feel for those who haven’t been able to go back on therapies or receive different dosage recommendations they depend on for their well-being. While I’m thrilled to be back on my biologic, now I have the worry about whether my body will respond the same as it did previously.

The medication I’ve depended on for 16 years to bring me comfort is finally back in my fridge and going to be back in my body today. The prior authorization lasts one year, so I’m not sure what the future will bring, but I’m focused on getting my health back on track right now and worrying about that later. I’m grateful my energy in dealing with my own appeal is over and now I can pour my efforts into trying to drive change for our community. We all deserve so much more. Let’s go after what is right and make forced medication switching and off-label dosing delays and denials by insurance companies illegal in the United States.

How GI Symptoms Influence Food Choices in IBD Patients & Strategies for Managing Pain, Bloating, and Nutrient Intake

September 23, 2024September 23, 2024Leave a comment

Imagine in a quick twist of events you go from having a wonderful day to dealing with IBD symptoms. Suddenly you go from feeling “fine” to having pain that’s gotten your attention quickly. You’re bloated and could pass for being 5 months pregnant, nothing sounds appetizing, you’re scared eating or drinking will further exacerbate your symptoms. The mere thought of ingesting anything makes you a bit nauseous. All your attention and focus is on tolerating the pain. Now pause.

It’s no surprise these symptoms significantly impact food choices and nutrient intake, as we’re forced to navigate the delicate balance between managing discomfort and maintaining proper nutrition. Understanding how GI symptoms influence dietary decisions and implementing strategies for managing these symptoms is crucial for IBD patients to ensure overall well-being.

Even as a veteran Crohn’s patient of nearly 20 years, I’ve been struggling to manage my diet while living with unpredictable painful symptoms that started to arise when I was put on a biosimilar medication in July 2024. I’ll be honest, lately when I’ve been dealing with abdominal pain and bloating, I’ve been refraining from eating. Turns out—surprise, surprise… that’s the last thing any of us should be doing. This week on Lights, Camera, Crohn’s hear from trusted registered IBD dietitian and ulcerative colitis patient extraordinaire, Stacey Collins, about how we can better navigate these challenges.

How have GI symptoms influenced your food choices?

If you’re in an active disease flare and dealing with an inflammatory response, you need protein and calories to overcome any risks for malnutrition. So how can we go about getting enough calories?

“Liquid calories aren’t always the tastiest—but smoothies and even nutrition shakes can be beneficial for those dealing with IBD symptoms and teetering on the line of a full-on flare. When you’re feeling well, try to designate part of one day a week where you make soups and smoothies ahead of time that you can freeze as a rainy-day investment to help you out on days when you aren’t able to expend the energy to prepare food,” says Stacey.

She also suggests “taking a holiday” from gut-health supplements you take—it’s not all or nothing. Take a break from your probiotic, prebiotic, anything that “helps with inflammation,” and enzymes (unless prescribed by your physician explicitly), and let your body relax from the burden of taking too many supplements.

Rather than avoiding eating altogether, which feels like the right thing to do when you’re in discomfort, try to maintain a consistent routine of eating to nourish your body to heal from a flare and avoid excess discomfort.

Our hypersensitive guts

When you live with IBD and you have a history of inflammation, visceral hypersensitivity, or an increased pain perception in the bowel, is a key factor to take into consideration.

“Acknowledge that a smoke alarm is going off, and then try deep belly breathing if that’s an accessible movement for you. I often tell people to lay down on the floor. If you have children, invite them to join! They can lay down beside you and do this exercise with you. Together, you can select a favorite toy or teddy bear: one for you and one for themselves. Put the bear on your belly and BREATHE! You should see the teddy bear move with your inhale as you breathe deep into your belly–see who can make the teddy bear go the highest. This can help you to return to your breath and welcome a sense of calm into your body. If this isn’t a great option for you, pausing to notice the exhale portion of your breath, intentionally making it a bit longer than the inhale, can be impactful in helping to calm the nervous system,” explains Stacey. “Clinically everything may be checking out okay with lab work, scans, and scopes, but it’s important to recognize if you’re dealing with pain, not everything is right. It can feel disorienting to not have that pain validated by labs and tests, which is why cultivating tools like these can be helpful to ride the waves of the pain while feeling just a little bit better in your body.”

When I decided to have soup last week after not eating all day, I was really taken aback by my abnormally loud bowel sounds while I was digesting. Stacey reminded me that when you go a long time without eating and then choose to eat something, that your gut will be working extra hard. This can lead to loud bowel sounds or Borborygmi. Anyone, including people with IBD, can experience hyperactive bowel sounds. When I heard my abnormally loud bowel noises the other day, it brought me back to past bowel obstructions where I would eat and people could hear my stomach making sounds in the other room.

What’s the deal with bloating?

Bloating in Crohn’s disease or ulcerative colitis is often caused by a combination of factors related to the underlying inflammation and the altered digestive processes associated with the disease. Some key factors include:

Inflammation of the Gut: The intestinal lining disrupts normal digestion and absorption of food. When the gut is inflamed, depending on location and severity, it can lead to malabsorption, causing undigested food particles to remain in the intestines longer, which can increase gas production and bloating.
Altered Gut Motility: Inflammation can impair the muscles in the intestinal walls that are responsible for moving food through the digestive tract. Slowed or irregular gut motility leads to delayed digestion and fermentation of food by gut bacteria, which can result in gas buildup and bloating.
Imbalance of Gut Bacteria (Dysbiosis): People with IBD often have an imbalance in their gut microbiome (dysbiosis), meaning there are fewer beneficial bacteria and more harmful bacteria. This imbalance can lead to increased fermentation of carbohydrates in the colon, producing excess gas, which contributes to bloating. Not getting enough nutrition can make dysbiosis worse.
Intestinal Gas Accumulation and Stool Burden: Inflammation in IBD can slow down the passage of gas through the intestines. This causes gas to accumulate in the gut, leading to bloating and discomfort.
Small Intestinal Bacterial Overgrowth (SIBO): SIBO, a condition where excessive bacteria grow in the small intestine, is more common in IBD patients who are not in clinical remission. This bacterial overgrowth can cause excessive fermentation of food, leading to bloating, gas, and diarrhea.
Dietary Factors: Certain foods, such as those high types of carbohydrates called Fermentable Oligo-Di-Monosaccharides and Polyols (FODMAPs), can sometimes be uncomfortable to digest and may temporarily need to be eliminated from the diet to help with bloating. Most often, this occurs in active Irritable Bowel Syndrome (IBS) flares.
- If IBD is in clinical remission but you’re experiencing IBS-symptom overlap, you may benefit from identifying FODMAP triggers with a dietitian. Re-introduction is an important phase of FODMAP-trigger identification, because these foods are often rich in pre-biotics, which are beneficial for the gut microbiome.
  - Note: A low-FODMAP diet will not impact IBD-related inflammation. However, it may help with alleviation of symptoms. This diet is meant to be short-term and with the support of a registered dietitian.
- Other dietary factors: sugar alcohols, chewing gum, carbonated beverages, sugar-sweetened beverages may also contribute to gas and bloating.
Food Intolerances: Food intolerances in IBD have not been studied adequately, but the most common food intolerance in IBD is lactose, where there’s a lack of enzyme available to help break down the lactose sugar, resulting in gas production and bloating. IBD patients can develop intolerances to certain foods, such as lactose, gluten, or high-fiber foods, which can trigger bloating. The gut’s reduced capacity to break down these components can result in gas production and bloating.
Inflammatory Strictures and Obstructions: Chronic inflammation can lead to scar tissue formation (strictures) that narrows parts of the intestines. This can cause a buildup of food and gas behind the narrow areas, resulting in bloating and abdominal discomfort. Discuss a monitoring strategy with your GI care team to ensure that you are not at risk for these complications.
Abdomino-phrenic dyssynergia (APD): this occurs when the diaphragm and abdominal muscles do not coordinate appropriately, which can lead to bloating, distention, constipation, and pain. Bloating may worsen throughout the day, even without food. Pelvic floor physical therapists (PFPT) can help evaluate and treat a person with APD.
Medications: Some medications used to manage IBD may contribute to bloating by altering the gut microbiome or affecting digestive motility.

Bloating can also be a result of constipation, but this certainly doesn’t feel like it makes sense when we’re going to the bathroom multiple times a day.

“This [urgency] can happen as a result of overflow diarrhea, when stool actually moves around more solid stool within our intestines, agitating the nerves and muscles, until there is a complete evacuation of all stool,” Stacey explains. (source)

Addressing symptom alleviation related to bloating typically requires a combination of anti-inflammatory treatments, dietary modifications (including hydration), gentle movement, behavioral modification techniques, and, in some cases, probiotics and/or antibiotics to rebalance the gut microbiome. I’ve found not wearing a tight waistband or anything that buttons at the waist can help reduce bloating. Whenever I wear Spanx, I usually end up feeling bloated.

A day in the life

I asked Stacey to walk us through a practice menu for making dietary choices to stay nourished when your IBD symptoms are getting in the way:

Practice menu
Note: this is not prescriptive; these are just some ideas. The key takeaway is to aim for consistent nourishment throughout the day in active disease flares, choosing nutrient-rich foods that will support you through a hard day. Work with a dietitian for personalization! No 2 diets necessarily look the same; no 2 days look the same.

Breakfast

Low-fat Greek yogurt that’s low in lactose, which is usually gentle on the gut and rich in protein, probiotics and bone health minerals. Add in some mashed raspberries and bananas with a nut or seed butter
Oatmeal—keep it simple, instant is fine. You can add a drizzle of olive oil to make it savory with additional omega-9 fatty acids for powerful anti-inflammatory support, soft boiled eggs, avocado, with a dash of thyme.
- If you simply can’t get over the idea of a savory oatmeal, just add some nut or seed butter and swirl it altogether with banana or applesauce and cinnamon
Smoothie: a liquid base, some frozen fruits (1 Cup or less at a time), and handful of greens, and a 3rd party-tested protein supplement may be a comfortable way to start the day, sipping slowly and gently

Lunch

cooked down starches, like squash, zucchini, cooked-down until fork-tender
- you can recycle these starches by adding them into a sandwich on sourdough, using tahini as a savory spread that will provide you with even more nutrition
Salmon is easy to digest while providing a rich source of omega 3’s
a nice pesto sauce to drizzle over the salmon would be delicious and rich in calories, perfect when you need additional nutrition and are feeling low on energy

Or, for something much simpler:

never, ever underestimate the power of a pb + j
a side of salty, simple-ingredient potato chips can replace any lost by diarrhea if you’re having an especially symptomatic day that causes you to make more bathroom trips

Dinner

Rotisserie chicken (you can buy this directly from the grocer- no cooking required!)
- you can recycle leftovers into chicken salad to be used as a protein-rich spread for lunches or snacks
Roasted potatoes, or potato soup (made in a slow-cooker for easy prep and clean-up!)
Cooked green beans or carrots. (If lacking energy, throw some veggies in the slow cooker with broth for extra nutrition)

Snack ideas:

peeled, salty edamame
Hummus, cucumber and pita for dipping (can opt to peel cucumber if that feels better for you)
Hummus, tahini, or guac on a tortilla, roll up some rotisserie chicken
Avocado toast (cheers, Millennials!)
Maybe pour yourself a cup of peppermint tea (unless you also deal with acid reflux)- this could give you some bloat relief, too!

Here’s more food ideas!

Identifying the triggers

Many IBD patients identify certain foods that trigger symptoms like bloating, cramping, or diarrhea. For example:

High-fiber foods: If too many are added at once, this can exacerbate bloating or diarrhea, leading many patients to avoid whole grains, raw vegetables, and legumes.
Dairy products: Due to lactose intolerance, some individuals avoid milk and all dairy foods.
Fried and fatty foods: These foods may slow digestion, causing discomfort or worsening symptoms.

The tendency to avoid certain food groups can result in nutrient deficiencies, especially if entire categories like fiber, fats, carbs, or dairy are removed from the diet. The unpredictability of IBD flare-ups can make patients apprehensive about eating. They may opt for bland or easily digestible foods, limiting their variety and nutritional intake. While this might offer temporary relief, it may not provide all the necessary nutrients, leading to long-term health complications such as malnutrition, weight loss, or vitamin deficiencies (e.g., vitamin D, B12, iron), or a poor food-related quality of life.

Tips for Managing Pain and Bloating While Ensuring Proper Nutrition

Work with a Dietitian: IBD patients should work with a registered dietitian, preferably one who specializes in gastrointestinal disorders. A personalized diet plan and support can help patients identify trigger foods, balance nutrient intake, and minimize symptom flare-ups.
Small, Frequent Meals: Eating smaller, more frequent meals can help reduce bloating and cramping. By spreading out food intake throughout the day, the digestive system may be less overwhelmed, potentially alleviating pain and bloating while allowing for better nutrient absorption. Reach for simple ingredients.
Eat mindfully in a relaxed environment: chew thoroughly, allowing more time for enzymes in the mouth to aid in digestion, so food is more comfortable to digest as it travels down the GI tract. Mindful eating is also associated with
Cooked and Pureed Vegetables: For patients struggling with fiber tolerance, switching from raw to cooked or pureed vegetables can provide some of the essential nutrients from vegetables without causing additional bloating or pain. Cooking helps break down the fiber, making it easier to digest. When in doubt, aim for “fork-tender” fruits and vegetables if you’re in a flare, rather than keeping them out of your diet altogether if you can.
Incorporate Nutrient-Dense Foods: Nutrient-dense, easily digestible foods like bananas, white rice, eggs, and lean meats (like chicken and turkey) can provide essential vitamins, minerals, and protein without aggravating symptoms. Incorporating bone broths, smoothies, and pureed soups can also help patients maintain a balanced diet while being gentle on the GI tract.
Stay Hydrated: Hydration is crucial, especially for IBD patients who experience diarrhea. Drinking water, broth, and electrolyte-rich fluids can help maintain fluid balance, prevent dehydration, and support digestion. Add salt to your food for hydration. If you’re struggling to maintain hydration, you may benefit from an oral rehydration solution (ORS).
Pain Management Techniques: Alongside diet adjustments, pain management techniques such as relaxation exercises, yoga, or gentle physical activity may help ease abdominal pain and bloating. Walking will help with bloating and gas. Don’t overdo it, even a walk to the mailbox after eating is beneficial. Additionally, medications like antispasmodics or anti-inflammatory drugs, as prescribed by a healthcare provider, can reduce inflammation and pain, allowing patients to eat more comfortably.

Final thoughts

IBD patients face daily challenges in managing symptoms like pain and bloating while trying to maintain adequate nutrition. During a Crohn’s flare, it’s essential to focus on easy-to-digest foods while maintaining hydration and nutrient intake. Consider how to alter the texture of colorful, nutritious fruits and vegetables for comfort, rather than taking them away altogether- your body needs the nutrition for healing! Working closely with healthcare professionals, including a dietitian and gastroenterologist, ensures that patients can minimize symptoms while meeting their nutritional needs, leading to better long-term health outcomes. The goal during a flare is to reduce irritation, manage symptoms like diarrhea, pain, and bloating, and to keep eating while welcoming more anti-inflammation through nutrition!

Helpful resources

Abdominal Pain in Inflammatory Bowel Diseases: A Clinical Challenge – PMC (nih.gov)

Chronic abdominal pain in inflammatory bowel disease: a practical guide | Frontline Gastroenterology (bmj.com)

What you need to know about diet and nutritional therapies for IBD patients – American Gastroenterological Association

Diet and Nutrition in Inflammatory Bowel Disease: A Review of the Literature – PMC (nih.gov)

Managing Pain & Fatigue in IBD (youtube.com)

IBD Diet Guide: Nutrition for Active Inflammatory Bowel Disease (uchealth.com)

Abdominal Pain in Inflammatory Bowel Disease: An Evidence-Based, Multidisciplinary Review – PMC (nih.gov)

Special IBD Diets | Crohn’s & Colitis Foundation (crohnscolitisfoundation.org)

What Should I Eat? | Crohn’s & Colitis Foundation (crohnscolitisfoundation.org)

The Gut-Brain Connection: Understanding Its Role in Inflammatory Bowel Disease

August 12, 2024August 12, 2024Leave a comment

Ever have a feeling in your gut that says you can trust someone or to make a certain decision? Get diarrhea or constipation when you’re under a lot of stress or anxiety? Your gut is so sensitive and smart scientists call it your “second brain! The human body is a complex ecosystem, with various systems interconnecting in intricate ways. One of the most fascinating of these connections is between the gut and the brain, often referred to as the “gut-brain axis.” This communication network plays a crucial role in maintaining our overall health, influencing everything from mood and cognition to immune function and digestive health. Emerging research indicates that the gut-brain axis may significantly influence the development and progression of IBD. The big question being—how?

This week on Lights, Camera, Crohn’s a look into how the Gut-Brain Axis works and what this means for the future of IBD treatment and care. Whether it’s stress, people pleasing, avoiding emotions, or anxiety—there are many triggers aside from food.

The Gut-Brain Axis: A Two-Way Street

Before we get started, it’s helpful to understand what the gut-brain axis involves and the multiple pathways it impacts, including the nervous system, the endocrine system, and the immune system. The primary components of this axis are:

The Enteric Nervous System (ENS): Think of this as how it feels when you get “butterflies in your stomach”. The ENS is a vast network of neurons (nerve cells that send messages all over your body to allow you to do everything from breathing to talking, eating, walking, and thinking) embedded in the walls of the gastrointestinal tract. It operates independently of the central nervous system but communicates with it via the vagus nerve, which runs from the brainstem to the abdomen.
Neurotransmitters and Hormones: The gut produces and responds to various neurotransmitters and hormones, including serotonin, dopamine, and cortisol. These chemicals are crucial for regulating mood, stress responses, and digestive functions.
The Microbiome: Trillions of microorganisms reside in the gut, forming a complex and dynamic community known as the microbiome. These microbes play a critical role in digestion, immune modulation, and even the production of neurotransmitters.

The Gut-Brain Connection and IBD

Chronic inflammation in IBD can affect the enteric nervous system, leading to alterations in gut motility and sensitivity. Those of us with IBD often experience abdominal pain, cramping, and changes in bowel habits, which are partly mediated by the nervous system. Conversely, stress and psychological factors can exacerbate IBD symptoms. Stress activates the hypothalamic-pituitary-adrenal (HPA) axis, leading to the release of cortisol and other stress hormones, which can, in turn, promote inflammation in the gut.

The Role of the Microbiome

The gut microbiome is crucial in maintaining intestinal health and regulating immune responses. For those with IBD, the composition and diversity of our gut microbiomes are often disrupted, a condition known as dysbiosis. Dysbiosis can contribute to the chronic inflammation seen in IBD by impairing the gut barrier function and promoting an overactive immune response. Interestingly, the microbiome also communicates with the brain through the production of metabolites and neurotransmitters, which influences mood and cognitive function.

You can optimize your gut microbiome with diet by eating:

Green leafy vegetables (broccoli, kale, Brussel sprouts, asparagus, spinach, garlic, etc.).
Healthy fats (extra virgin olive oil, sesame oil, coconut oil, nuts, seeds)
Protein (eggs, fish, grass-fed meats)
Low sugar fruits (avocado, bell peppers, cucumber, tomato, zucchini, limes, and lemons)

*Before altering your diet or incorporating foods that could trigger disease activity, please talk with your care team and discuss this further with a registered dietitian who specializes in IBD.

Psychological Factors and IBD

IBD is often associated with psychological conditions such as anxiety and depression. According to the Crohn’s and Colitis Foundation, we’re two to three times more likely to deal with anxiety and depression than the general population. These mental health issues can both contribute to and result from the physical symptoms of IBD. For instance, chronic pain and discomfort can lead to increased stress and anxiety, while anxiety and depression can exacerbate gut inflammation and symptom severity. It’s a vicious cycle that can often feel out of our control.

Therapeutic Implications

Understanding the gut-brain connection opens new avenues for the way we treat IBD. Traditional treatments focus on reducing inflammation and managing symptoms through medications and lifestyle changes. However, addressing the gut-brain axis could provide additional therapeutic benefits. Some potential approaches include:

Probiotics and Prebiotics: These can help restore a healthy balance in the gut microbiome, potentially reducing inflammation and improving gut health. Talk with GI about their thoughts on this, as each provider has their own opinion.
Psychological Interventions: Cognitive-behavioral therapy (CBT), mindfulness-based stress reduction (MBSR), and other stress-management techniques can help manage the psychological aspects of IBD, potentially reducing symptom severity. Tools such as breath work and gut-directed hypnotherapy can help to improve GI systems, while improving your mood and decreasing stress. This works by softening the body’s stress response, inhibiting the secretion of cortisol, decreasing inflammation, and supporting the immune system.
Dietary Modifications: Certain diets, such as the low-FODMAP diet, can help manage symptoms by reducing gut irritation and inflammation. Personalized nutrition plans based on an individual’s microbiome composition are also being explored. Connecting with a registered IBD dietitian can provide you with a personalized plan geared to where you’re at on your patient journey—this will differ if you’re recovering from surgery, pregnant, flaring, the list goes on. Diet is not a one size fits approach, it’s unique to you. Before you start eliminating entire food groups and putting difficult limitations on yourself, talk with a professional.
Pharmacological Treatments: Medications that target the gut-brain axis, such as those that modulate neurotransmitter levels, are being investigated for their potential to treat both the psychological and physiological aspects of IBD.

Final thoughts

Our gut and brain are in constant contact through nerves and chemical signals, and taking care of our mental health and our gut health goes hand in hand. The relationship between our gut and brain is a fascinating and complex one that significantly influences our overall health, playing a pivotal role in everything from mood and cognition to immune response and digestive health. For those of us living with IBD, understanding and addressing this connection can provide new insights into the management and treatment of our disease.

As research continues to uncover the complexities of the gut-brain axis, we move closer to a holistic approach to IBD care that considers the intricate interplay between mind and body. Know that there are psychologists who specialize in gastrointestinal illnesses as well as dietitians who do as well. By adding specialists like this to your care team, you’ll be better equipped to manage the unpredictability of life with Crohn’s and ulcerative colitis.

Additional Resources

The Gut-Brain Axis in Inflammatory Bowel Disease—Current and Future Perspectives – PMC (nih.gov)

Researching IBD and mental health through the gut microbiome – UChicago Medicine

The influence of the brain–gut axis in inflammatory bowel disease and possible implications for treatment – The Lancet Gastroenterology & Hepatology

The Gut-Brain Connection — Does It Go Beyond Butterflies? | Live Healthy | MU Health Care

Brain structure and function changes in inflammatory bowel disease – ScienceDirect

Crohn’s disease, gut health, and mental health: What’s the link? (medicalnewstoday.com)

Brain-gut connection explains why integrative treatments can help relieve digestive ailments – Harvard Health

The Skinny on Weight Loss Medications and IBD

July 29, 2024July 29, 2024Leave a comment

Imagine a medication that not only helps shed unwanted pounds but also holds the promise of alleviating the painful and debilitating symptoms of inflammatory bowel disease (IBD). For millions battling the dual challenges of IBD and weight management, this could be a game-changer. Some reported data suggest approximately 15 to 40% of IBD patients experience obesity. As obesity has been linked to more severe disease activity, anti-obesity medications, such as GLP-1 (glucagon-like peptide-1) receptor agonists (RA), could be a novel treatment strategy for IBD.

Recent research into GLP-1RA medications, primarily known for their role in weight loss and diabetes management, suggests they might have unexpected benefits for those with Crohn’s disease and ulcerative colitis. Could these medications pave the way for a new era in IBD treatment? This week on Lights, Camera, Crohn’s let’s dive into the intriguing possibilities that lie at the intersection of weight loss and inflammatory bowel disease management. You’ll hear from gastroenterologist and researcher Dr. Aakash Desai, along with 25 people who have IBD and have tried or are currently taking GLP-1RA medications.

What is a GLP-1RA medication?

GLP-1 (glucagon-like peptide-1) medications are primarily known for their role in managing type 2 diabetes and obesity. GLP-1 agonists, such as liraglutide (Victoza), semaglutide (Ozempic), and dulaglutide (Trulicity), mimic the action of the endogenous hormone GLP-1. These drugs enhance insulin secretion, inhibit glucagon release, slow gastric emptying, and promote satiety, thereby aiding in blood glucose control and weight loss.

The majority of these drugs are subcutaneous injections, with only one currently available orally. The frequency of taking the medication varies with each GLP-1RA and can be weekly, daily, or twice daily. But, the typical dose is a weekly self-injection, which can be done in your stomach, upper arm, buttocks, or thigh.

The Mechanistic Link to IBD

Anti-inflammatory Properties: GLP-1 receptors are present in the gastrointestinal tract and on immune cells. Activation of these receptors has shown anti-inflammatory effects in preclinical studies. This suggests that GLP-1 medications could theoretically modulate immune responses and reduce inflammation in the gut.
Mucosal Healing: Animal models have demonstrated that GLP-1 agonists can promote mucosal healing in the intestines, a critical aspect of managing IBD. This potential for enhancing intestinal barrier function and reducing inflammation holds promise for IBD therapy. Scroll to the bottom of the article to check out the latest research.

Considerations between providers and patients

Dr. Aakash Desai, MD, Allegheny Health Network in Pittsburgh, Pennsylvania says that before discussing if GLP-1RA is appropriate for his patients, he tries to understand their weight loss journey on a case-by-case basis.

“This is unique for every patient, so it’s important for the physician to understand where they’re at and the efforts that have been made. I like to ask what type of dietary and lifestyle modifications they have attempted, exercise (finding out actual numbers, number of days/minutes per week of exercise, moderate/strenuous intensity), prior consultations with nutrition and/or weight loss specialist, and prior exposure to weight loss medications. It’s also important to consider comorbidities, especially history of pancreatitis, gallbladder disease, type 2 diabetes mellitus, and psychiatric diseases including eating disorders.”

He tells me a “good” candidate is a patient who is obese or overweight with weight-related complications who is willing to undergo lifestyle interventions in close collaboration with nutrition and a weight loss specialist. From an IBD standpoint, before starting on this type of medication, Dr. Desai likes to see his patients in remission.

“GLP-1RA medications have several GI side effects, so it can be challenging to differentiate if a patient’s symptoms are related to GLP-1RA, active IBD or both. Patients should have their IBD in remission, clinical and endoscopic, and radiographic, if applicable,” explained Dr. Desai.

There is preclinical data suggesting that GLP-1RA can modulate inflammatory responses.

Dr. Desai explained, “Mechanisms include its impact on oxidative stress, immune cell recruitment, cytokine production, and gut microbiota modulation. There is also some clinical data from retrospective studies showing improved IBD outcomes, however we need data from prospective studies to see if these medications can be used as adjuncts with existing IBD therapies.”

He would not recommend starting GLP-1RA for obesity management during a flare/active disease given the risk of drug related GI side effects. This could worsen symptoms which could inadvertently lead to increased dose of steroids, prolonged steroid use or a change in IBD therapy. Additionally, providers prescribing GLP-1RA have a low threshold to discontinue the medication if patients with IBD develop even mild GI symptoms out of potential concern for worsening IBD.

Ongoing research underway

Dr. Desai is working on a study that involves 150 people with IBD who are obese and taking semaglutide.

“We found similar weight loss compared to patients without IBD. We also found higher weight loss with semaglutide compared to other anti-obesity medications except tirzepatide. We did not observe worsened IBD specific outcomes in patients on semaglutide. In another study from a large database, we found that GLP-1RA use for type 2 diabetes in patients with IBD was associated with a lower risk of surgery for ulcerative colitis and Crohn’s disease, but we did not observe a lower risk of steroid use.”

He tells me it’s important to note that this is retrospective observational data. However, Dr. Desai hopes this sets the stage for prospective studies and future randomized controlled trials.

From a safety standpoint, there is limited data, however it appears to be reassuring for serious side effects. Dr. Desai believes until we have more robust data, the key will be disease remission at the time of initiation of GLP1-RA. Keep this in mind if you are dealing with active disease and hope to start this type of medication.

There is no data to suggest that patients on biologics or small molecules cannot be on a GLP-1RA if their disease is in remission. The approach needs to be individualized factoring in clinical characteristics and disease profile.

Scope and Scans and GLP-1s

There seems to be confusion in the patient community about how these weight loss mediations can impact how we prep and undergo scopes and scans. Dr. Desai says there is currently no data supporting stopping GLP-1RA before elective endoscopy – which is a multi-society statement.

“I follow the clinical practice update published by American Gastroenterological Association (AGA) which suggests an individualized approach to each patient. If patients are on GLP-1RA only for weight loss, I think there is little harm in holding the medicine a week before elective endoscopy. An alternative would be to continue the GLP-1RA and place patients on a liquid diet the day before the procedure.”

For colonoscopy, a recent study in the American Journal of Gastroenterology found increased likelihood of repeat colonoscopy due to poor bowel prep in patients on GLP-1RA.

Dr. Desai says he likes to discuss extended bowel prep (2 days) with his IBD patients.

“Alternatively, I recommend a low fiber low residue diet for 5 days plus 2 days of a clear liquid diet with 1 day of prep. I would encourage patients to discuss management of GLP-1RA and bowel prep with their IBD providers prior to elective endoscopy as institutional protocols especially for anesthesia may vary.”

Hear what an IBD mom has to say about her experience

Emily says she’s been overweight most of her life. She tried everything to lose weight, and nothing seemed to work—or she’d lose weight and gain it right back. She talked with her primary doctor about the weight loss medications and her provider is a big fan of them for the right person and thought they’d be a great fit for her. As an IBD mom of two boys, Emily was worried about what her gastroenterologist would have to say.

“At first, I was nervous about it because I didn’t want him to tell me I couldn’t do it. But he was okay with it. He said if I didn’t have any IBD complications, that I would be fine to be on it. He didn’t have any hesitation since I have been in remission and my colonoscopy and upper endoscopy looked good. I explained that I was followed closely with my primary and that I would let him know if I had any issues that came up. Thankfully, my Crohn’s has stayed in remission!”

Emily started semaglutide in November 2022 and was on that for 7 months and then switched to tirzepatide. She’s now been on that for one year.

“I am starting the process of going into maintenance and will decrease my dose until I find what works for me and plan to stay on this long term.”

*Emily’s remarkable transformation from 2022 to now.*

She’s currently taking Stelara to manage her Crohn’s. Emily is down 93 pounds, and she feels amazing. She says she has dealt with minimal side effects—some nausea and constipation, but nothing that lasts long. As most of us are, she’s very conscious of her bathroom habits and says if she starts to feel constipated, she takes stool softeners.

Firsthand experience from an ostomate

Elizabeth has perianal Crohn’s and has participated in two clinical trials (stem cells). She has had two gracilis flap surgeries, among others. She says while many IBD patients struggle with keeping weight on, this has not been the case for her.

“I have always been in a larger body (even before my Crohn’s diagnosis 20+ years ago). I workout daily and eat a balanced diet but have, like many, found a natural weight plateau. Since my bloodwork always looks great, I really hadn’t thought about it as it would be seemingly for vanity’s sake.”

With more than a dozen IBD surgeries so far and at least one or two more in the future, she was discussing with her GI wanting to optimize future success post-operatively, when her doctor brought it up.

“Since I carry more weight in my mid-section and currently have a loop ileostomy, which also is poorly placed and with a hernia that causes further projection, addressing those issues was certainly on my mind. I was open to learning more and she was bullish, referring me to a fellow GI doctor who specialized in the area.”

As an ostomate, Elizabeth was concerned about blockages, in addition to insurance not covering the cost.

“My consulting doctor felt confident I was a good candidate, and we both thought it may actually improve my fast GI tract and high-output ostomy (which had been causing daily leaks recently). While insurance denied two different options based on plan carve outs, even after appeals, I decided to try paying out of pocket.”

She started on Zepbound four months ago, in conjunction with her biologic and small molecule medication to manage her IBD. Elizabeth says she was less concerned about adding a medicine but, like many of us, would like to be on fewer longer term.

So far, she has lost 30 pounds or about 12% of her starting weight!

“I wasn’t at my highest all-time weight, but I had gained. The effect was almost immediate for me — with the biggest short-term (and continued) win being the delayed gastric emptying, meaning less liquid output, less rapid output, and less visits to the bathroom to empty. I also stopped having leak issues almost completely and, in conjunction with my IBD meds, my symptoms and inflammation are the best they’ve been in years.”

In terms of the non-IBD effects, the impact on what they call “food noise” was huge and, because food stayed in her stomach for more than an hour or two, her hunger changed dramatically.

“I can’t explain how odd it feels to have to remind yourself to eat and to simply feel full. Fortunately, I have had few side effects as, thanks to my ileostomy, I was already focused on staying hydrated.”

Elizabeth encourages those with IBD to research and consult with a doctor who specializes in obesity medicine (and versed in IBD and/or willing to work with your IBD team). Unlike many of the medications we use to control our disease, antibodies aren’t a concern, and it could be worth a try. Also, she says not to be discouraged if it doesn’t work for you as, just like IBD meds, what works for one person may not work for someone else.

“While the weight loss is great, the impact on my IBD-related quality of life has been just as important. I hope there is more research in this area and potential a path for these medications to be considered as part of a covered treatment plan for patients with IBD and other chronic conditions.”

What other IBD patients have to say

Thank you to those who submitted input for this article—there’s nothing like hearing firsthand perspectives from those living our reality. I have purposefully left all the quotes anonymous.

“I have been on Wegovy for over a year, and I have ulcerative colitis. I’ve had a positive experience and from what my GI told me, there are clinical trials going on for its effect on IBD patients specifically.”

“I started Ozempic last week. My GI approved it. There is lots of research about reducing inflammation, along with other benefits. I am way overweight, and I needed help.”

“I’m on semaglutide, which is the generic compound of Wegovy. My GI approved it and it’s been great. It’s the only way I’ve been able to lose weight in years! It has helped me with cravings, with blood sugar stability, and with my emotional connection to food. The first six weeks, I lost my interest in food and had a weird metal taste in my mouth. But slowly that went away and now I am back to myself but feeling more in control and with a healthier view of food. I have not lost weight as fast as some, more like 1-2 pounds a week with a plateau where we found the dosage needed to be increased. Slow and steady has been fine for me.”

“I have ulcerative colitis and got a jpouch back in 2010. I was on Ozempic last year but got off to get pregnant. Once I’m six months postpartum I was told I could go back on it.”

“My CRP is back to normal, even though my SED rate is still elevated, my IBD is non-existent. My constipation did get worse though. But it’s nothing that daily Miralax can’t help. I had to come off it because it made my anxiety worse. Being on that medicine made me as close to feeling like a normal human being as ever.”

“I have been on Ozempic for the past month. No lie, best I’ve felt in years! It’s taken my 20 bowel movements a day down to 3-4. I have nausea, but it’s tolerable. I don’t have diabetes, so I’m paying out of pocket for it. Those with diabetes get a greater benefit from it. You have to be serious about eating protein and about eating better. Since the food you eat sits in your stomach longer, you’ll feel sicker if you’re just eating junk.”

“I would love to hear more about this as IBD is one of the contra indications for this medication and is not usually prescribed in the UK for people with Crohn’s/ulcerative colitis, as it can cause GI upset. So, I would love to hear more about people’s experiences with this as this is something I have looked into for my weight, and I have Crohn’s.”

“My PCP said in her experience they have helped GI outcomes, but I haven’t talked with my GI to see his response. I will say, as an OR nurse, we have been seeing a lot of exploratory laparoscopic surgeries with patients on these medications.”

“I have UC and they put me on Ozempic last year! One shot and I couldn’t stop vomiting. I lost 35 pounds, but I had to take Zofran daily and used a Scopalamine patch so I would not vomit. I started in April, and I didn’t get better until July or August. I went into the ER and urgent care several times for dehydration. It was mild pancreatis, but my labs were not bad enough for them to admit me.”

“I was on Victoza! My GI symptoms were exacerbated by the medicine, but my A1C went down significantly. Unfortunately, I was throwing up for the first month I was on it and because of that my appetite was not suppressed.”

“I was on Ozempic. It made me nauseous and sick. I had terrible stomach pains and TMI, but super gross mucus-y stools. As soon as I stopped, everything went back to normal. I lost 20 pounds and then gained it all back immediately.”

“I have Crohn’s and I’ve been on Saxenda for 8 months and I’m down 20 pounds. Other than a little nausea in the beginning, it’s been great for me!”

“Started semiglutide injections 2 weeks ago and I’ve been able to stop taking my Loperamide completely (I have ulcerative colitis and a jpouch). Semiglutide wasn’t covered by insurance even with appeals for weight loss and motility, but I got it pretty affordable online through Henry Meds. I’m still on the loading doses but haven’t had side effects so far. It takes about 2-3 months of weekly injections to build up to a full dose.”

“I experience nausea day two after taking the shot. Other than that, I haven’t dealt with anything negative. I lost weight that wasn’t coming off due to hormones being completely screwed from pregnancy and 60 mg of prednisone for almost 9 months. GLP-1s also constipate you, due to your gut not emptying as quickly as it normally would. This is one of the reasons it’s being explored as an IBD option. Taking magnesium, bulking up on fiber or taking fiber helps with this.”

“I am on semeglutide week 6 tomorrow—this is my second time—I did it last summer for about 3 weeks. I went up on my dose last week, I haven’t noticed a difference with anything yet, but I haven’t changed my diet much and that’s on me. There’s no difference in my ulcerative colitis symptoms, I’ve had mild active uc for awhile now. I’m trying to get it under control, but also need to lose a bit of weight.”

“Back in 2022, I was on Mounjaro for about 8 months. I was finally able to lose weight. I am a Crohnie who gains weight because my body has a hard time digesting nutrients. Because of this, my body is in starvation mode a lot. When I was on Mounjaro, I lost about 80 pounds, and my inflammation was well managed. It was the first time I was able to feel energetic and wasn’t tired all the time. It helped with my diarrhea because it made me constipated for the first time in 5 years. It then became regulated. I still had stomach pains and indigestion issues, but overall, the medication improved my quality of life quite a bit. I am pre-diabetic and now my insurance will not cover it. My doctor tried appealing it many times, explaining that Mounjaro was helping to manage my inflammation caused by Crohn’s disease, and they still denied it. I have gained 30 pounds back and have a hard time with energy and my diarrhea has returned on and off.”

“I’m on Mounjaro and taking it specifically to help with my high output ostomy. I have Type 2 diabetes, so I’m able to get it through insurance luckily, since we’re using it “off label”. A friend of mine who has a jpouch was on Saxenda, then Ozempic, for the same reasons. She recently had to go off it because of new insurance and she developed pouchitis within weeks of having to stop it. I have two other friends with ostomies taking it, both with a history of Crohn’s. One is a CEO of a biotech company and has been chatting with the different GLP-1 manufacturers trying to convince them to do trials in patients with short gut or high output ostomies.”

“The first thing I asked my GI doctor is HOW can someone have IBD and be overweight or obese? And he said it’s quite common! When I started to flare, he wanted to blame the diarrhea on GLP-1 (Wegovy). But I asked him for a colonoscopy which showed active ulcerative colitis, unrelated to the medication. I am now on Zepbound. For some reason, these medications don’t help me lose weight. I can’t help but wonder if the inflammation from IBD is preventing successful weight loss. I can have many bowel movements a day and not lose a single pound!”

“I have had a good experience with it. I have a really tough time eating vegetables and some fruits, nuts, etc. because of my Crohn’s. The fact that the medication decreases that hunger helps me maintain a healthy weight. I tell people that all the “food noises” I used to experience are gone.”

“I am researching this for Crohn’s myself. I am interested to see your article and opinion. I’m in the UK and recently heard about the benefits of microdosing and I wanted to see if IBD people had experienced positives.”

“I was originally on Ozempic, and it wrecked my stomach. I had to take a break from it, but I lost weight. I switched to Mounjaro due to insurance and have had way better luck with no GI issues. Altogether, I have lost almost 50 pounds. I should mention that I am pre-diabetic. I have a really hard time losing weight. When I was pregnant, I lost 35 pounds after I gave birth and didn’t gain a pound during. I felt amazing, not sure why I wasn’t hungry when I was pregnant. Mounjaro has allowed me to not think about food 24/7. It’s been a game changer.”

“I’ve Googled it before (because who that’s overweight hasn’t been at least curious) and I remember reading that because it slows digestion it can help IBD patients. I’m still worried about the unknown long-term effects to try to it.”

Final thoughts

It’s important to understand that these are chronic medications for obesity management. GLP-1RAs are not a substitute but should be used in conjunction with lifestyle interventions including diet and exercise. This is necessary for sustained long-term weight loss. This requires a multi-disciplinary team-based approach with nutrition, weight loss specialist, primary care and your IBD provider.

As you heard from the patient community, access and cost for these medications remains a key issue for many. The high cost and complex insurance landscape pose significant barriers for many patients seeking these treatments. The monthly cost of these drugs in the United States can range from several hundred dollars to over one thousand dollars, presenting a substantial financial burden for patients. Many insurance companies require prior authorization for GLP-1RA medications, necessitating extensive documentation and justification from healthcare providers. This process can be time-consuming, and as we’re all too familiar with, may delay treatment.

I’ll leave you with an impactful quote from Emily, “I think for the right person these meds are life changing. I know for me they have been. There is a lot of chatter on both sides, and I have learned to block it out. I work closely with my primary doctor and know that she would never steer me wrong. I also know that my GI is on board and that has helped, too. Don’t let the opinions of others deter you. If this is something you want to do and you have the support from your doctors that is all that matters!”

Additional Resources

Alimentary Pharmacology & Therapeutics | Pharmacology Journal | Wiley Online Library

GLP-1 based therapies and disease course of inflammatory bowel disease – eClinicalMedicine (thelancet.com)

The alleviating effect and mechanism of GLP-1 on ulcerative colitis – PMC (nih.gov)

Editorial: Pharmacotherapy for Obesity in Persons with Inflammatory Bowel Disease | Crohn’s & Colitis 360 | Oxford Academic (oup.com)

The Impact of GLP-1RA Use in Patients with IBD, with Priya Sehgal, MD, MPH (hcplive.com)

Why gastroenterologists and hepatologists should be involved in treating obesity – Mayo Clinic

Surviving and Thriving: Navigating Parenthood with IBD During the Summer Months

July 1, 2024July 1, 2024Leave a comment

Summer is officially here and while the sun and break from school and a routine is welcomed by many, the shift in schedules can be a struggle for parents with chronic illness. As a mom with Crohn’s disease with kids ages 7, 5, and almost 3, some days are easier than others on me. Even though I’ve been a stay-at-home mom and freelancer since my first child was born in March 2017, it’s a lot to juggle when every day can feel like Groundhog Day and when you get little to no breaks from mom or dad life. This week on Lights, Camera, Crohn’s some tips for navigating the summer months, when school is out and everyone is home, looking to be entertained and fed snacks around the clock.

Dealing with the unique challenges

Mom and Dad guilt can feel like it’s reaching epic proportions when you go on social media as a chronic illness parent and see all the daily adventures and trips other families are posting about. When fighting fatigue and coping with pain, making those efforts with kids can feel like an uphill battle. You want to be present and do all the things and make all the core memories, but it can be extremely difficult and exhausting physically and emotionally when you aren’t feeling well and trying to do it all in the heat of summer. The combination of managing a chronic illness and the increased demands of having children home from school can be overwhelming. However, with some careful planning and strategies, IBD parents can navigate the summer months more smoothly.

I try and remind myself that whether we have an adventure-filled day or a day at home playing in the backyard and having popsicles, my kids are having fun. It’s ok to have an “old-fashioned” summer, hanging out with the neighborhood kids and playing outside. Now that my youngest is about to turn 3 in July, I feel like I’m in a sweet spot this summer where I don’t need to lug the stroller and a diaper bag everywhere we go.

Tips for Managing IBD During Summer

Plan Ahead:

Summer Camps: Prior to summer and even during, I try and sign up my older two for camps and activities that I think they’ll enjoy. So far this summer, my kids have done soccer camps, volleyball camp, dance camp, and Vacation Bible School. Most of the camps are only 2-4 hours, but even having one child entertained helps ease the dynamic back at home. At the same time, I try not to overschedule camps, because it can be stressful to try and get everyone out of the house by 8 am and all the drop-offs and pick-ups can make some days stressful and overbooked. There’s a delicate balance!
Activities: Choose activities that align with your energy levels. Opt for outings that require less physical exertion or allow for breaks. Having a game plan ahead of time, and keeping it to yourself rather than getting your kids excited and then not being able to deliver on the promise is key.
Backup Plans: Have a backup plan for days when your symptoms are more severe. This could include indoor activities, quiet time, or arranging for help from friends or family.

Communicate with Your Children:

Honesty: Age-appropriate honesty about your condition can help children understand your limitations. Explain why you may need to rest or take breaks.
Involvement: Involve older children in planning activities and chores. This can lighten your load and teach them responsibility.

Create a Support System:

Family and Friends: Don’t hesitate to ask for help. Whether it’s babysitting, meal preparation, or just lending an ear, a support system is crucial. I find it a lot easier when I go on playdates with other moms and my kids can be entertained with their kids. Having downtime to talk with adults (or even be out of the house and in the same vicinity as other moms and dads) is a breath of fresh air. I’ve even see moms post about simply going for a drive to get everyone out of the house.
IBD Community: Connect with other IBD parents through support groups or online forums. There’s solidarity and understanding on social media and so many people living your reality. While summer is fun, it’s also a lot to get acclimated to when you are used to having children in school.

Utilize Resources:

Apps and Tools: Use health management apps to track symptoms, medication, and appointments. Parenting apps can help organize activities and chores. Chances are there are people in your town or city with accounts that highlight the best parks, pools, and activities to check out in the summer months. I follow a bunch of St. Louis parenting accounts and save or screenshot reels or posts so I have ideas of places I can take my kids that are “mom-approved”.
Professional Help: Don’t hesitate to consult your healthcare provider for advice on managing IBD during the summer. They may suggest adjustments to your treatment plan.

Prioritize Self-Care:

Rest: Make time for rest even amidst the chaos of summer activities. Create a schedule that includes downtime to help manage fatigue and reduce stress.
Diet: Stick to a diet that works for you. Avoid foods that trigger flare-ups, and keep healthy snacks readily available.
Hydration: Summer heat can exacerbate IBD symptoms. Drink plenty of water to stay hydrated. I never leave home without water for myself and my kids.
Stay on top of your health: Summer is not a break from doctor appointments, lab work, scans and scopes. Make sure you don’t let your IBD management go by the wayside. Unfortunately, we can never take a break or vacation from keeping tabs on our disease.

Activities and Coping Strategies

Indoor Activities:

Crafts and Games: Keep a stash of craft supplies and board games for days when going out isn’t feasible. Some days it’s just too hot to go outside. Hitting up the DollarStore or Hobby Lobby can be helpful for picking up easy crafts when you’re in a pinch.
Reading and Movies: Create a cozy reading nook or have a movie marathon with your kids. It’s ok to have slow, snuggle days. I try not to beat myself up about screen time when I’m feeling overwhelmed or need a chance to breathe. A trip to the library with the kids is always a nice reprieve from the heat and then you can return home, snuggle and read together.

Outdoor Fun:

Parks and Beaches: Choose locations with amenities like bathrooms and shaded areas. Bring a comfortable chair or blanket to rest. I love packing lunches or picking up food on the way to the park and having a picnic with my kids. I also brought one of those trendy snack containers off Amazon with the different dividers for snacks, and that’s a great way to save on having to buy food while you’re out and about. Splash pads are also great so that kids can burn off energy and get refreshed, without you having to keep a close eye with them in a pool or having to get in yourself.

Mindfulness and Relaxation:

Yoga, Meditation, and walks: Incorporate gentle yoga or meditation into your routine. These practices can help manage stress and improve overall well-being. After dinner, when the temperatures begin to drop, it’s a great time to take a solo walk outside, if your partner can stay back with the kids or ask friends to join you. It’s nice to decompress and get steps in, without having to deal with the sweltering sun.
Quiet Time: Speaking of quiet time for you, establish a daily quiet time where everyone in the household engages in calm activities, giving you a chance to recharge. It’s difficult for me to find quiet time these days, but I try and decompress after bedtime at least.

Final thoughts

Managing IBD while parenting during the summer requires a blend of planning, self-care, and support. By prioritizing your health and setting realistic expectations, you can create a summer that is enjoyable for both you and your children. Remember, taking care of yourself is not only beneficial for you but also sets a positive example for your kids. In moments of high stress, where my kids are not getting along, I try and remind myself that someday I’ll look back on these times as the good old days.

Talking to Your Boss and Coworkers About Inflammatory Bowel Disease

June 24, 2024June 24, 2024Leave a comment

Living with IBD can be especially challenging in a professional setting. Prior to becoming a stay-at-home mom and freelance/blogger, I worked full-time for 12 years. For 10 of those years, my Crohn’s was not in remission. This week on Lights, Camera, Crohn’s, guidance on how to approach conversations with your boss and co-workers effectively so you can feel supported.

The more they know

Before I became self-employed, I worked at three television stations, a public affairs PR agency, and in Corporate America as a communications specialist for a natural gas utility. With each interview and onboarding process, I waited until I was hired to disclose that I had Crohn’s disease to my boss. The first week of work, in a one-on-one meeting I openly shared about my disease and tried my best to educate my boss and my team about my health. Since I did not start blogging or any patient advocacy work until 2016, there was nothing online about my journey with Crohn’s. If I were trying to get a job nowadays, I wouldn’t have that luxury since my story is publicly shared. Every single boss, all my co-workers, and each employer were extremely understanding and empathetic about my struggles. I was incredibly lucky in that regard.

While working full-time I had several hospitalizations and bowel resection surgery that kept me out of work for 2.5 months. I was grateful for bosses who were generous with sick time and that my corporate job had a solid short-term disability plan I was able to utilize.

Everyone has a different opinion about when and how to best disclose your health or disability status. While some people consider their IBD a “disability,” others do not. I’m often asked how to navigate answering that question on a job application. I personally do not consider my IBD to be a disability, but it’s understandable if you do. Answer as you see best fit and most comfortable.

Why It’s Important to Share

Accommodation Needs: Explaining your condition can help you receive necessary accommodations, such as flexible work hours or the ability to work from home during flare-ups. One of the major benefits of the pandemic is how it altered how we work. Back when I was in the workforce, working from home wasn’t utilized as much as an option. I had high symptom days where I worked from home once or twice every few months, but it wasn’t a weekly occurrence. Hybrid working environments or remote jobs are ideal for those with chronic illness.

The flexibility work from home jobs provide is huge—whether it’s being able to work from your couch if you’re dealing with abdominal pain and it hurts to sit at a desk, being able to work in comfortable clothes or pajamas if the fatigue makes showering a challenge, or worrying about the commute and being able to travel without a bathroom mishap or having to go multiple times in a public employee bathroom…the list can go on and on.

Understanding: Colleagues aware of your condition are more likely to be supportive and understanding during challenging times. One of the most important aspects of IBD to share with others who do not have our disease is the unpredictability of our health. Since we’re able to look perfectly normal on the outside, it can be difficult for an average person to fully grasp or believe the pain we’re dealing with. I remember countless days in Corporate America having to unbutton my work pants and having to tell my co-workers I was on the struggle bus. I can still envision myself on the news desk when the camera shifted to a weather segment and slumping over in pain. Everyone I worked with was aware of when I was having an “off” day. I’ve had co-workers drive me to the emergency room during the workday. I always felt supported and was never made to feel like I was less than because of my Crohn’s and for that I am still grateful.

Reduced Stigma: Talking openly about Crohn’s and ulcerative colitis can help reduce the stigma associated with chronic illnesses and foster a more inclusive workplace. People may question or wonder why you may have unique work accommodations, while it’s none of their business, being transparent, and really stepping up to the plate and going above and beyond when you’re able will show others that you never use your disease as an ”excuse”. If you have an infusion or a doctor’s appointment that makes you arrive late, it’s helpful to inform your boss and co-workers so they know why you may be strolling in during the middle of the day.

Preparing for the Conversation

Know Your Rights: Familiarize yourself with your workplace’s policies on medical conditions and accommodations. Understanding your rights under laws such as the Americans with Disabilities Act (ADA) can provide a framework for your discussion. Check out these tips from the Crohn’s and Colitis Foundation.

Plan Ahead and Explain Your Needs: Choose an appropriate time and setting for the conversation. Ensure privacy and sufficient time to discuss your needs without interruptions. I always had a face-to-face conversation with my bosses, and they were appreciative of knowing. Clearly state what accommodations you need to manage your condition effectively. This could include flexible hours, a work-from-home arrangement, or having a desk closer to the restroom. Emphasize your dedication to your job and how these accommodations will help you remain productive. For example, “Having the ability to adjust my work schedule during flare-ups will help me stay on top of my responsibilities.” If I was prepping for a colonoscopy or having a scan, I let my team know.

Gather Information: Be ready to explain what IBD is, how it affects you, and what accommodations or support you might need. A high-level explanation is often sufficient.Your boss doesn’t need to know your entire patient journey. For example, “I have a chronic condition called Crohn’s disease/ulcerative colitis that affects my digestive system. This can sometimes cause severe abdominal pain and fatigue.”

Offer Solutions: Suggest practical ways to implement accommodations. For example, “During flare-ups, I could work from home and communicate via video calls and emails to stay connected with the team.” Your boss may have questions or concerns. Be prepared to address them calmly and provide any necessary documentation from your healthcare provider.

Communicating with Coworkers

You don’t need to share all the details. A brief explanation like, “I have a medical condition called Crohn’s disease/ulcerative colitis, which sometimes causes me to feel unwell,” can suffice. Explain how your condition might impact your work or interactions. For example, “There may be times when I need to step away from my desk more frequently.”

Reassure coworkers that while you have a chronic condition, you are still capable of performing your job. For example, “Most days, it doesn’t affect my work, but there might be times when I need a bit of flexibility.”

Encourage an open dialogue. Let them know they can ask questions if they want to understand better, but also respect your privacy. While I was hospitalized, I would often send an email to my team at work to provide them with a high-level update, so they heard the information from me versus someone else. For example, “Hi team! I appreciate all your well wishes. It’s been a difficult few days, but I’m hanging in there. I hope to be discharged from the hospital by the weekend and look forward to seeing you soon.”

Final Thoughts

Talking about IBD with your boss and coworkers can seem daunting, but it is a crucial step toward ensuring you have the support you need in the workplace. By being honest, clear, and proactive, you can foster a more understanding and accommodating work environment. Remember, your health and well-being are paramount, and having open discussions can help you maintain your health, while staying on top of your professional responsibilities. When interviewing for jobs, pay close attention to how an employer manages insurance benefits, short-term/long-term disability, and whether you feel like your boss and co-workers would be people you feel comfortable sharing your health struggles with. You aren’t married to your job, if you ever feel unsupported, seek employment elsewhere. Along with your boss, it’s helpful to talk with Human Resources, so you’re aware of all the medical benefits and support that is available for employees.

While IBD complicates life, I hope you continue to go after your dreams. Sure, there are going to be setbacks and roadblocks along the way, but you are worthy of whatever job or career you want to set out and do. Less than 3 months after my diagnosis, while on 22 pills a day, I landed a job 8 hours away from all friends and family and went after my dream of working in TV news. I’m proud of that and it’s a reminder that this disease doesn’t need to rob you of all you hope to be and all you hope to do. You are not a burden on employers and the sky is the limit for you.

Helpful Resources:

Employee and Employer Resources | Crohn’s & Colitis Foundation (crohnscolitisfoundation.org)

Inflammatory Bowel Disease Coverage Under the ADA (verywellhealth.com)

Navigating the workplace – My IBD Life (gastro.org)

How To Cope With Ulcerative Colitis at Work (clevelandclinic.org)

10 patient-backed tips for dealing with IBD at work – Oshi Health Crohn’s and Work: Your Rights, The ADA, Statistics & More (healthline.com)

Navigating Medications for IBD During Pregnancy and Breastfeeding: A Comprehensive Global Guide

June 10, 2024June 10, 2024Leave a comment

One of the main challenges and worries women face when it comes to pregnancy and IBD is feeling comfortable and confident staying on their medication. The first-ever Global Consensus Conference on Pregnancy and IBD was held during Digestive Disease Week (May 2024) and part of the discussion focused on the latest recommendations for medication during pregnancy and lactation. Last week on Lights, Camera, Crohn’s we covered the global guidance regarding pre-conception counseling and family planning.

Hear from the co-chairs of the Global Consensus Conference and esteemed gastroenterologists, Dr. Uma Mahadevan and Dr. Millie Long about what they want the IBD community to know about medication during pregnancy and postpartum.

The latest recommendations for IBD women

All biologics can be continued through pregnancy and lactation
5ASA can be continued
Thiopurines can be continued, but monitor liver enzymes for intrahepatic cholestasis of pregnancy
S1P agents and JAK inhibitors should be avoided in pregnancy unless there is no other viable alternative
Biosimilars are equally safe to originator drugs (biologics) in pregnancy
Wound healing after C-section/episiotomy: Thiopurines
delayed wound healing with episiotomy, but there’s no impact of biologics on
wound healing with C-section, tear, episiotomy

These recommendations were voted on and determined by more than 50 medical providers and IBD patient advocates from around the world. The hope is that this guidance will leave couples feeling empowered and more comfortable in their decision to stay on medications that are deemed low risk.

“We have learned that there are many different practice patterns in various locations globally regarding treating women with IBD during pregnancy. The goal of this Global Consensus was to have a consistent, evidence-based framework for management of pregnant women with IBD that will improve the quality of care globally. Most importantly, treating inflammation and continuing appropriate medications (such as biologics) improves outcomes for both mom and baby,” said Dr. Millie Long.

When I was pregnant with my children, I trusted what my care team (GI, OB, and Maternal Fetal Medicine doctors) told me regarding Humira and the risk versus benefit of staying on my medication through pregnancy and after. I credit my medication for keeping my Crohn’s under control while I carried my babies and after I brought them into this world. But I’m going to be honest—when you are 36 weeks pregnant and you feel the baby kicking and moving as you’re about to do your injection, it can feel emotional. At the same time, I always told myself I was doing what was best for me and for them. Now that my kids are 7, 5, and almost 3 (all perfectly healthy), I am reminded every day that I made the right choice for our family.

Handling the hesitations

Dr. Mahadevan says when patients come to her worried about staying on their medication while they are pregnant, she discusses the “very clear data” that shows disease activity is the strongest predictor of pregnancy complications.

“This includes having difficulty conceiving, higher miscarriage rates, higher complications of pregnancy, including pre-term birth. Pre-term birth has a strong correlation with reduced socioeconomic status and other issues later in life. Plus, if women are so sick and worn out by their IBD, they aren’t able to enjoy their new baby and struggle to take care of their child as well as they would like to. For medications like monoclonal antibody, where there is good safety data, it really makes sense to continue.”

“Women should stay on biologics during pregnancy without any alteration when they are pregnant. This reduces the risk of flare during and post pregnancy for the mom and improves outcomes for the baby. The strongest predictor of pre-term delivery (and the complications arising from this), is active inflammation,” said Dr. Long.

Clinical trials in pregnancy and drug safety rely on observational data. There are no randomized trials where one person is chosen to get therapy, and another is not.

“This is where the PIANO study and other such prospective (where we follow patients before we know the outcome) registries are so important. We can collect data quickly… as soon as a medication is approved for use. We also get data from large population datasets from countries such as France, where all patients are registered, and their outcomes can be collected. This takes longer but will have much larger numbers,” explained Dr. Mahadevan.

All three of my kids were part of research studies while in utero and after. My youngest who turns three in July was part of the PIANO study. I can’t say enough about the importance of contributing to research and helping to pave the way for future IBD families. We have the guidance we have today because of all the moms who took it upon themselves to be a part of studies like PIANO.

Biosimilars in pregnancy

As more and more patients are switched from a biologic to a biosimilar, there’s a great deal of interest in how this impacts family planning and pregnancy.

A total of 89 pregnant women with IBD enrolled in PIANO on Infliximab were included as part of a study presented at Digestive Disease Week entitled, “Use of Biosimilars to Infliximab During Pregnancy in Women with Inflammatory Bowel Disease: Data from the PIANO study” that Dr. Long and Dr. Mahadevan were a part of.

In the study, 76 women were on the originator drug (Infliximab/Remicade), while 13 women were on an Infliximab biosimilar.

“Though this study is small, Europeans noted that they did not differentiate between biosimilar and originator in their studies. There were no difference in clinical characteristics or significant differences in any pregnancy complications between the two groups. Developmental milestones were assessed at 12 months, with no differences in communication, fine motor, gross motor, personal/social interaction, or problem solving between groups,” said Dr. Mahadevan.

This data and ongoing research can reassure mothers with IBD on biosimilar IFX who wish to pursue pregnancy.

Avoiding S1P agents and JAK inhibitors in pregnancy

For those who don’t know—S1P agents and JAK inhibitors include: Ozanimod (Zeposia), Tofacitinib (Xeljanz) and Upadacitinib (Rinvoq).

If you’re currently taking one of these medications and finally have your IBD under control, it can be daunting to know what to do next for family planning.

“It is a case-by-case situation .In general, we would like to avoid these agents as, unlike with biologics which are antibodies, these agents are pills and cross the placenta during the first trimester during a key time in the baby’s development,” said Dr. Mahadevan. “Animal studies have shown harm with supratherapeutic (higher than human doses) levels of drug. Upadacitinib (Rinvoq) had birth defects in animals even at human doses. For S1Ps, usually there is another effective medicine patients can try. An exception may be if they also have multiple sclerosis as S1Ps are used to treat both conditions. For jak inhibitors, they are often the only effective therapy for a patient. We will discuss the risks, the benefits, and the options – using a surrogate, etc.”

Lactation considerations

The benefits of breastfeeding are similar in IBD and non-IBD moms.

“We do not have robust data that breastfeeding will specifically reduce the risk of IBD in offspring, but there are many studies in the general population that demonstrate that breastfeeding is beneficial to infants. The choice to breastfeed is an individual one, and it is important to support each family’s decision,” said Dr. Long.

Breastfeeding research is more challenging than pregnancy studies, as this is not collected in medical records or large databases.

“Breastfeeding research is data from registries like PIANO and individual studies from different IBD centers, which measure transfer in breastmilk and outcomes,” said Dr. Mahadevan.

She went on to say that breastfeeding is allowed on thiopurines, and there should be low to no risk to the infant.

“Ideally, if the mother can wait four hours, there is no drug transferred, but even earlier the amount that is transferred is very low,” explained Dr. Mahadevan.

As an IBD mom who fed each of my babies differently, I want to reiterate that whether you choose to breastfeed or not is a personal decision and you are not less than or a failure if you need to supplement or formula feed. Juggling chronic illness, postpartum, and motherhood is a lot. Give yourself grace and trust your child will thrive no matter how they are fed.

My oldest was only breastfed for three days because I wasn’t well-versed about the data regarding biologics and breastfeeding and because I was nervous about flaring and not being able to feed my baby. I breastfed my middle child for 6 months while supplementing, and my youngest was exclusively breastfed 14 months—all while on Humira. Your journey and your experience are personal to you. Try not to allow outside or societal pressure to contribute to your guilt as an IBD mom.

Gaps and strides in IBD research
Dr. Long says we need more data on the safety and efficacy of novel small molecules during pregnancy.

“This includes medications like tofacitinib, Upadacitinib, Etrasimod and ozanimod. This is why registries like PIANO are so important, to capture this information and inform patients and providers alike. Some of the strides being made in IBD pregnancy research include the effectiveness of pre-conception counseling, novel assessments of disease activity during pregnancy (such as intestinal ultrasound), data on novel biologics during pregnancy and lactation (including newly approved therapies such as Risankizumab or Mirikizumab) and data specifically on biosimilars. Through this data and the Consensus recommendations, we can improve pregnancy outcomes for many women with IBD,” said Dr. Long.

The overall hope is that the Global Consensus Conference recommendations will provide women with IBD all over the world with consistent and evidence-based care prior to, during, and post pregnancy.

The Patient Experience: Childfree with IBD

May 20, 2024November 17, 2024Leave a comment

The moniker “IBD Mom” is commonly used in the patient community. As a mom with Crohn’s disease who has three children, I focus a great deal of my advocacy efforts on family planning, pregnancy, and motherhood. But I recognize the decision and choice to have children isn’t for everyone. Studies on voluntary childlessness among people with IBD suggest a higher prevalence compared to the general population. Research has indicated that concerns about health, the impact of the disease on parenting ability, and the potential genetic transmission of IBD are significant factors influencing this decision.

So, what about the women who make the personal and often emotional decision not to have children or who didn’t have the option to choose, due to health complications? This week on Lights, Camera, Crohn’s a look at being childfree and the many factors that may deter people from becoming parents. You’ll hear from several women in the IBD community about their decision.

Key factors that influence being childfree

Disease Activity: Active IBD puts a halt on family planning, as women are told to be in remission 3-6 months prior to conception. The unpredictability of the disease can make finding the right timing to have a baby tricky. If a woman conceives while flaring, there is a much greater likelihood of flaring during pregnancy.
Medications: Some of the medications used to manage IBD can pose risks to a developing fetus. If a woman finally finds a treatment protocol that gets her IBD under control it can feel daunting to stop and risk losing remission.
Surgical History: Surgeries for IBD, especially those involving the intestines and rectum, can affect fertility and pregnancy outcomes.
Genetic Considerations: IBD has a genetic component, meaning there is a risk of passing the disease on to offspring. While this is a major deterrent for many, it’s important to understand what that risk is. For Crohn’s, there’s a 7% of passing on your disease and even less for ulcerative colitis. When both parents have IBD that number goes up astronomically.
Physical and Emotional Well-Being: Managing IBD is physically and emotionally demanding, trying to imagine what it is like to care for yourself and take care of a child can be overwhelming for many.

Firsthand accounts from the patient community

Kat: “This doesn’t mean I won’t change my mind in the future, but my health has had a huge impact on why I have decided not to have kids. I think a big part of not wanting to carry a baby anymore is because of the trauma my body went through when I was sick in my 20s.”

Rachel: “I was diagnosed with Crohn’s disease almost three years ago, and I’m on my second biologic. I’m 25 and have decided that I don’t want to carry my own children. Due to the currently unknown effects of biologic drugs on development, but also the risks for myself coming off a biologic and flaring. I have also considered the complications of having a c-section before or after other potential abdominal surgeries and the complications from that. The main one for me though is also the genetic chance of passing IBD on to my kids. I have always been open to adoption anyway and have decided this is the route I would pursue if I do decide to have children.”

Kate: “We are going through fertility treatments after five years of secondary infertility and I chose to stop to start Rinvoq and save my rectum. I am not having my eggs retrieved and frozen in the hopes that we find a gestational carrier for our embryos.”

Kendall: “I am 30 and single and haven’t made the firm decision to be childfree, but as I get older and my Crohn’s disease gets more challenging, it’s definitely something that I’ve been questioning. Wondering if I will have the health and energy to be able to take care of myself and my kids. I worry about the impact of pregnancy on my body and of course finances are also a consideration.”

Alesha: “I’ve questioned being a mother. I’m 33 and I was diagnosed with Crohn’s in 2022. After having a perforated small intestine in 2015, an ostomy for 6 months, and the reversal in 2016…only to suffer with so much pain from the scar tissue being so narrow. I’d visit the hospital a few times a year and try to work through the pain. Now, I’ve been on Stelara for a little over a year. It’s been helping, it’s just hard to be told that the medication will be lifelong. While I desire to be a mom, I just don’t know how my body will respond.”

Liz: “I have chosen not to have kids for many Crohn’s reasons: Having to come off meds to protect pregnancy, the risk of flares and them causing infertility anyway (my periods always stop in a flare), the massive risk from common childhood illnesses, adhesions due to surgery and just the added stress and time needed to devote to a kid to raise them is something I just can’t do on top of a career as a doctor.”

Meredith: “I’m currently in this situation now. My husband and I held off having kids until we were ready (different components here—moving, reaching career milestones, enjoying our lives as they were, but in the past few years we felt we were ready except my body wasn’t. I had a terrible flare that knocked me on my ass for about a year and then I was put on my methotrexate and was told I could not become pregnant, or I would need a medical abortion. I’ve since gotten off that medicine but was told to hold off trying until after my colonoscopy. I had another small flare, and my GI wants me to wait until I’m healthier. He says, “healthy mom, healthy baby” and I don’t think he’s wrong, but it isn’t what I want to hear. So now, I’m just waiting to see what happens.”

Sarah: “Not sure what I’m looking for because I have two kids, but I had them prior to my Crohn’s diagnosis at age 30. The diagnosis prevented us from having more children. We always planned on four kids, but because of my diagnosis, we didn’t continue to try and only have our two that I had before developing Crohn’s.”

Belinda: “We’ve decided not to have any kids. I know my history with my Crohn’s hasn’t been as bad as some other ladies who would struggle to conceive and carry a child. I might have been fine to. I had two resection surgeries, at age 24 and 39. The first one was very traumatic, and I was very sick for many, many years. I just didn’t ever feel I wanted to take a risk to “rock the boat” as I’m always trying to keep my health stable. I didn’t feel I had it in me to manage a potentially difficult or risky pregnancy or bad flare after the baby. I do think there might be other reasons why we’ve decided not to have kids, so it might not be fair to blame it all on my Crohn’s. I’ve never had the urge or yearning to be a mom. It’s very prevalent in my family, too. Three out of four cousins on my dad’s side have Crohn’s and my mom’s cousin does, too. The nature of the world, healthcare issues, and so many other issues make me wonder if it influences would-be mothers. Our health is already such a scary unpredictable element of our being…who has the capacity to navigate it all?”

Kelsey: “I’m childfree by choice! I’m a professional auntie. I was diagnosed with ulcerative colitis after I had already made that decision, but it has 100% solidified it. I’ve watched my other childfree friends waiver with their decisions and some choose to have children later in life.”

Deanna: “I got married in October and my husband and I talk about this a lot. I never expected I’d be childless, but I don’t have a strong drive to have children either. The fact that the decision was made for me is something I am trying to navigate emotionally.”

Jessica: “I was always on the fence about children, even when meeting my partner six years ago when we were 25. I decided a few years ago that I did not want to have children. While there were a few factors in my decision, my ulcerative colitis was a big decision to choose not to. Stress and lack of sleep (I need at least 8 hour a night) are a prime duo for flare ups for me. I knew that if I was going to be lacking sleep in the many stages of childhood, and stressed many times, I wouldn’t be able to care for myself, and therefore wouldn’t be able to truly take care of children. I know there are so many moms out there with IBD or another autoimmune disease that are rocking it, but this was the right choice for me.”

Courtney: “To be honest, having children was just never something that was on my mind in my twenties and thirties. I was diagnosed with ulcerative colitis in college and had a colectomy in graduate school. During most of that time, I was in a 10-year relationship. Towards the end, it became clear we had different ideas about where our futures were headed. He wanted a traditional family life in a small town, and I wanted to focus on my career and stay close to my medical team in an urban area.”

Ashley: “I’ve been really scared due to medical trauma and not feeling ready to trust my body. It’s hard because I have a strong desire to have a child, but it would also mean putting myself back into situations that genuinely scare me.”

Kaycie: “My IBD is one of the several reasons I decided to be childfree. I was so sick throughout my early to mid-20s when I finally went into remission in my late 20s, the last thing I wanted was to risk falling out of it to have a child. I’m in my mid-30s now, living abroad for work, traveling all the time, and able to have the freedom I craved in my 20s when I was chained to a toilet with my ulcerative colitis. A child just doesn’t fit the life I’ve built, and my husband and I are happy with that choice.”

Lauren: “I miscarried many years ago and was told I was high risk at the time and that it would be a battle to get pregnant and carry full term. After being diagnosed with Crohn’s, I didn’t think it would be healthy to try further with my body. With so many flares and surgeries, we decided if we had children we’d adopt. It was like grieving a major loss of something I’d always wanted. I love my life and my marriage. I had a few great years of remission and have been flaring for about one year now. I’m not comfortable adopting when my health is so on and off. I don’t think it’s fair to a child or my husband to not always be present.”

J: “For me, every time we were going to try for a second child, something my with health would come up. I’ve had a collapsed lung, broken rib, inflamed pleural pace, and IBD flares. Between all those health setbacks, coupled with chronic fatigue, it felt like I couldn’t get to a place healthy enough to support a second pregnancy and even if I could, I wouldn’t have the energy to survive the first three months postpartum with such little sleep going on. So, we opted to no go for more and be as present as we could for our existing child.”

Casey: “My husband and I have had a to delay trying to conceive due to a flare and were going to delay trying even further as I just had to switch from Humira to the biosimilar, Hyrimoz. I don’t want to be pregnant while navigating a chance in medication in case it doesn’t work the same.”

Hannah: “There is still quite a lot of taboo around being childfree and it isn’t something I feel I can share with everyone. I don’t have a strong desire to be a mother. It’s difficult to know how much of that is due to my challenging childhood and adolescence due to my Crohn’s. I have a vivid memory from when I was 11 years old watching my siblings playing outside from the bedroom window and of being very upset that I didn’t have the energy to join them. That memory is very poignant and painful for me. It’s one that has been at the forefront of my mind as a 34-year-old woman as I decide whether to remain childfree. I fear repeating that feeling of being at the periphery but this time as a mother, rather than as an 11-year-old girl. Another fear is that I might pass on Crohn’s to my child. While the risk is small, I would find that difficult to bear.”

Lizzy: “I’ve had IBD for almost two years. I am on Remicade and methotrexate. Since methotrexate can’t be taken during pregnancy, it would be concerning number one of having to switch to a pregnancy-safe alternative and hope it works as well as my current regimen. Additionally, periods make my Crohn’s symptoms worse, so I haven’t had a period in over a year due to birth control. Having to get off birth control and deal with horrible symptoms sounds miserable. I get sick when I don’t sleep, and it wouldn’t be fair to always make my partner get up in the middle of the night. I am also gay so going through the stress of IVF or artificial insemination when trying to maintain Crohn’s remission would be stressful.”

Sexual and reproductive considerations

Amy Bugwadia is an MD student with scholarly concentration in medical education/health equity and social justice at Stanford. She collaborated with some IBD patients and clinicians and authored a paper about sexual and reproductive health considerations. She says, “while we were writing and listening to patient feedback there were a few salient themes:”

Mis and dis-information
Stigma: patients being too shy or not knowing if this is a topic that they can or should talk to their GI about
Confusion about language: Doctors saying “you can’t get pregnant while on this med”—do they mean “difficulty getting pregnant” due to potential infertility or “should not get pregnant” due to potential medication impacts on the fetus.
Outdated information: Many patients (especially when young) have been on the certain medication for a long time, but as time has gone on, we have new/updated data on safety profiles that not all patients are up to date on, especially relevant for pediatric patients as they transition to young adulthood.

Read the full study that Amy co-authored here: Sexual and reproductive health considerations in the care of young adults with inflammatory bowel disease: A multidisciplinary conversation – ScienceDirect

Concluding thoughts and additional resources

Voluntary childlessness or being childfree among individuals with IBD is a multifaceted issue influenced by health concerns, genetic considerations, quality of life, and psychosocial factors. As you heard from several IBD women, the decision to remain childfree is often a carefully considered and personal choice determined after talking with healthcare providers, significant others, family, and support networks. I hope after reading this you feel less alone if this is your reality—whether it’s something you’ve always wanted or if it’s a decision you struggle with.

What Factors Might Drive Voluntary Childlessness (VC) in Women with IBD? Does IBD-specific Pregnancy-related Knowledge Matter? | Journal of Crohn’s and Colitis | Oxford Academic (oup.com)

Family planning in inflammatory bowel disease: childlessness and disease-related concerns among female patients – PubMed (nih.gov)

Voluntary childlessness is increased in women with inflammatory bowel disease – PubMed (nih.gov)

Sexual health and fertility for individuals with inflammatory bowel disease – PMC (nih.gov)

Risk Factors for Voluntary Childlessness in Men and Women With Inflammatory Bowel Disease – PubMed (nih.gov)

Get Creative, Give Hope: DIY Fundraising for the Crohn’s & Colitis Foundation

May 6, 2024May 5, 2024Leave a comment

It’s no surprise as a non-profit The Crohn’s & Colitis Foundation relies on donations to fund research to find cures for Inflammatory Bowel Disease (IBD) and sustain support programs for people living with Crohn’s and ulcerative colitis. But did you know there is a Do It Yourself (DIY) fundraising opportunity for anyone interested in raising money for the cause beyond their major campaigns like Take Steps and Team Challenge? This week on Lights, Camera, Crohn’s, here’s a look at how our community has risen to the challenge in the past and how you can get involved now.

How does DIY Fundraising Work?

If you’re interested in taking the reins and fundraising, you can create and manage your own fundraising activities based on your interests and motivation. The money you raise helps support research for finding a cure for) IBD. The Foundation staff offers one-on-one support, fundraising tools, and resources to help you along the way.

Michael Osso, President and CEO of the Crohn’s & Colitis Foundation says it is incredibly inspiring to see the Crohn’s and colitis community come together with such creativity and passion to raise awareness and funds for the mission to find cures and improve the lives of the 1 in 100 Americans with IBD.

“From walking 100 miles to hosting charity hikes in Alaska and livestreaming gaming events, our supporters have come up with innovative and impactful ways to turn their ideas into personalized fundraisers through our DIY program. I am deeply grateful for every person who gets involved because together we are unstoppable in our fight against IBD,” said Michael.

Melissa Scott serves as the National Marketing Manager for the Crohn’s & Colitis Foundation. She says volunteers have been hosting their own fundraisers since the Foundation’s inception. About four years ago, during the pandemic, the program was formalized, with a dedicated team, toolkits, and fundraising platform specifically for DIY fundraising.

“Every contribution, regardless of its size, plays a crucial role. The cumulative impact of our DIY fundraisers, big or small, is vital in our ongoing efforts to fund research and move closer to finding cures for Crohn’s disease and ulcerative colitis. Each fundraiser, by raising awareness and funds, helps us advance our goal of improving the lives of those affected by IBD,” said Melissa.

Inspiring DIY fundraising efforts

The sky is the limit and the options to raise money are, too. Oftentimes as IBD patients and caregivers, we may feel our well-being and health is out of our control. DIY Fundraising is a tangible way to make a difference and recognize how supported the IBD community is within your inner circle and among your peers. Not only are you raising money. but you’re raising awareness about your reality and educating others about IBD, which is priceless.

Stasia, an IBD warrior, hosted the “Alaska Hike for IBD Cures.” She made this happen by asking her network of friends, family members, and local businesses to donate in support of her mission and to join her on the hike. Stasia wants the IBD community to know that “Even if you don’t raise a lot of money that single dollar can pay for a test tube that might holds the cure.”

Robby founded “Gaming for Guts” 10 years ago. This is a team of online gamers who raise money for IBD and provide funds to support the Foundation’s mission. Robby says, “the first year we had two people participate, now we have a whole team and we’ve raised more than $20,000 for the cause.”

As a high school student with IBD, Hala used her love for baking to drive donations. She hosted a bake sale as part of her senior project. “I knew I wanted to do a bake sale and DIY is so customizable, it was perfect for me to raise funds in a meaningful way,” she said.

Ilie, Mack, Charlie, Lawson, and Thompson created “Dilworth Kids for Crohn’s and colitis Cures” and hosted a lemonade stand during the Dilworth Historic Home Tour. With the help of the Foundation, the kids had marketing materials to help get the word out.

How to learn more and get involved

As a trustworthy source in the IBD community, The Foundation is the driving force in the development of next-generation treatments and personalized medicine for IBD. The Foundation has played a role in every major research and treatment breakthrough in IBD. DIY Fundraising is a vital tool in helping the Foundation continue its quest for better treatments and cures, while also allowing for our voices to be heard. By getting creative, taking the plunge, and seeing where it takes you, you may feel more empowered and supported on your patient journey.

You can learn more about the Foundation’s DIY program (including livestream and gaming opportunities) here. Interested in getting started? Email the DIY team directly: diy@crohnscolitisfoundation.org

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Category: mental health

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