Category: Dating, Love + Marriage

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

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

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

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

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

Switching to a biosimilar—the emotional and physical toll

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

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

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

Keeping track of it all

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

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

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

Writing your own appeal letter

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

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

Tips for expressing yourself in the appeal letter

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

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

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

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

I signed my letter:

My family deserves more and so do I.

Sincerely,

Natalie Hayden

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

Finding out we won the appeal

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

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

My kids 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.

The Skinny on Weight Loss Medications and IBD

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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

My Key Takeaways from the FDA Workshop: “Evaluating Immunosuppressive Effects of In Utero Exposure to Drugs and Biologic Products”

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More than 4 million babies are born in the United States each year, many to mothers who live with chronic illness. Historically, pregnant women are excluded from research, consequently there is limited to no safety data at the time of drug approval. Enormous gaps remain regarding the clinical impact of exposure to biologics and medications when so much is at stake for both mom and baby. July 11-12th the Food and Drug Administration (FDA) hosted a public workshop entitled, “Evaluating Immunosuppressive Effects of In Utero Exposure to Drug and Biologic Products.”

As a patient leader in the IBD community and mom of three children who were all exposed to anti-TNF medication in pregnancy, I was invited to provide the patient voice during this two-day discussion. I spoke on three different panels to share my perspective. This week on Lights, Camera, Crohn’s I’ll share what I learned and what I heard from top researchers and doctors at the workshop. The key overall message—healthy moms lead to healthy babies and a healthy society. Healthy meaning—having disease well-controlled in pregnancy so flares don’t lead to adverse outcomes for both mom and baby.

Pregnant women and lack of research

Often due to ethics, pregnant women have been omitted from research and clinical trials. The absence of human involvement in pharmacology studies can lead to uncertainty about what is deemed “low risk” and “safe” to the fetus, and the impact medications have on the placenta. Women who become pregnant must drop out of clinical studies, even if the drug class has known safety or is deemed low risk (anti-TNF, IL-23s).

According to study entitled, “Medication use during pregnancy with a particular focus on prescription drugs”, Pregnant women report taking an average of 2.6 medications at any time during pregnancy. Medication use may expose the fetus and infant to the medication through placental transfer.

It’s clear that reducing or stopping medications can put mothers at risk for flares, which in turn can lead to adverse effects in pregnancy. With my own children, I stayed on Humira until 39 weeks with my oldest (who is now 7), and 37 weeks with my other two children (who are now 5 and 3). All three of my children were a part of pregnancy studies (MotherToBaby and PIANO). My youngest will be followed until age 18! My oldest was followed through kindergarten. The current recommendation, globally (which has changed since I had my children) is to keep women on biologics throughout the entire pregnancy.

One of the key areas of discussion is whether animal data from research ever tells us the whole story about the safety and efficacy of medications—the answer is no. There is no substitute for a human placenta, but the challenge and dilemma are what can be done to get this human data. Approaching clinical trials in pregnant women is challenging and takes time to develop. Currently, animals are the best tool we have for educated guesses.

The benefit vs. risk discussion for Mom and Baby

Oftentimes decision making with chronic illness is a risk versus benefit thought process, whether you are pregnant or plan to carry a baby in the future or not. During the FDA workshop, there was an incredible presentation that really resonated with me about the multiple decisions women have to make for both themselves and their unborn children. The discussion highlighted the complexity and why it’s not a black and white decision. These series of decisions are nested in each other and revolve around the decision maker (Mom/Dad) and medical providers.

Key considerations we deal with as IBD moms:

Continue or discontinue medication?

Should we breastfeed on medication?

Should we give an attenuated live vaccine as scheduled or delay?

When making these decisions it’s imperative that patients feel heard and that communication take place between the parents and medical providers (gastroenterologist, maternal fetal medicine, and OBGYN). Knowledge is power and educating yourself going into these conversations and before and during pregnancy can make you feel more empowered in your decisions.

The power of the placenta

There were placentalogists at the workshop—yes, those exist!! And it was amazing to learn how dynamic the placenta is and how it changes throughout pregnancy. The placenta is not just a conduit, its function changes across gestation and with fetal sex and medical condition. It serves as the endocrine function, lungs, pituitary, drug processing center, neuro connections, and growth factors for the baby…to name a few.

For instance, according to this study, there are differing levels of placental chemokines and cytokines and even reduction of placental antibody transfer in male placentas.

Once the placenta is impacted it effects the fetus. There was also discussion about how Inflammatory Bowel Disease impacts placenta—and the possibility of looking at the placenta of an IBD women at delivery to compare them to women without the disease. Even when a woman has well-controlled disease or is in remission, it’s believed our placentas may appear differently at delivery due to the inflammatory nature of our disease. I joked during on one of the speaking panels that I would have gladly given all my placentas to research upon delivery! It’s  win-win for researchers and patients alike to do so.

Medication safety in pregnancy

There was also discussion about the importance of developing medications that are safer in pregnancy, much like children’s medications are created with a different formulation.

Prednisone causes minimal fetal exposure. Solumedrol at infusions is fine, and it’s ok to breastfeed on steroids, but high dose daily oral steroid can cause cleft palate and cleft lip.

Azathioprine has also been found to have no impact on breastfeeding, babies born to moms on Azathioprine have normal development and they do not have increased susceptibility to infection.

A graph outlined a study that looked at 107 pregnant women with IBD on Infliximab/Adalimumab:

Detectable anti-TNF levels after birth:

3 months of age—94%

6 months of age—23%

9 months of age—7%

12 months of age—3%

This illustrates why babies exposed to anti-TNF after believed to be immunocompromised until 6 months of age.

Vaccine response and impact of immunosuppressive medications

It is believed that women on immunomodulating medication who get the TDAP vaccination in pregnancy have the same immune response as healthy controls and that the baby receives the same benefits.

The recommendation for Rotavirus (which is the only live vaccine given the first 6 months of a baby’s life), is now to give this vaccine to babies. This updated guidance also applies even when babies are exposed to anti-TNF or immunosuppressive medications in pregnancy.

There’s no difference in vaccine response for babies across different biologics.

Limiting the burden on mom and baby in pregnancy and postpartum studies

Once babies are born and they are part of research studies to measure how their exposure in utero impacts or does not impact their future health, there’s often a burden on the mother about following up. As an IBD mom myself, I wasn’t big on having my babies get blood draws for medical studies—but that data is paramount in helping further that research. And knowing what I know now, I wish I would have been more willing to do so.

So how can studies ease this burden and stress on families?

This can be done by having well-trained phlebotomists who have experience working with children and using techniques to optimize venipuncture success to limit discomfort and pain. By timing blood draws for research at the same time of doctor’s appointments, it reduces the number of needle sticks and blood draws.

Dr. Mahadevan’s Presentation at the workshop

One of my favorite presentations was given by Dr. Uma Mahadevan. She is the key investigator of the PIANO (Pregnancy Inflammatory bowel disease and Neonatal Outcomes), and a well-respected gastroenterologist at UCSF. PIANO started in 2007 and looks at the safety of IBD medications on the pregnancy and short-and-long term outcomes of children. My youngest son is part of PIANO. We participated throughout pregnancy, provided cord blood from delivery, as well as blood draws. I just submitted his 3-year forms online.

I recorded Dr. Mahadevan’s presentation and have transcribed everything she said below so you could hear her expertise firsthand:

“Women of childbearing age—women of reproductive potential are not given JAK inhibitors—even though it may be the most effective medication for them. This is a result of fear—that maybe they’ll get pregnant and maybe there will be some harm. Medications with well-established safety records like anti-TNFs are discontinued in pregnancy now—68% of women who go off their anti-TNF did so from the advice for their rheumatologist, so these are the doctors telling them to do this.

What’s the importance of treating immune mediated disease in pregnancy?

Disease activity is the biggest driver of adverse outcomes in pregnancy. Women with IBD compared to general population have an increased risk of spontaneous abortion, pre-term birth, small for gestational age, hypertensive disorders of pregnancy including preeclampsia , post-partum hemorrhage, and 44% rate of C-section, most of them elective out of fear of disease.

Stopping the biologic which again is out of fear—you’re on a biologic, it’s stopped in pregnancy, still is in many rheumatology and psoriasis cases, less so with IBD, but when you stop it…reducing or stopping leads to an increase of disease flare.

Many of my colleagues who are rheumatologists say “oh many with rheumatoid arthritis get better in pregnancy…there is not a single study that shows that. In fact, this study from The National Inpatient Samples shows women with rheumatoid arthritis were more likely to develop complications of pregnancy both during pregnancy, but also in post-partum and in their neonates.

The American College of Rheumatology conditionally recommended continuing anti-TNF during pregnancy despite the available safety data and the voting panel agreed that if the patient’s disease is under control these medicines can be discontinued. This is happening now.

In this article from a prospective registry from Sweden and Denmark that looked at 1700 patients with RA, there was increase in pre-term birth and small for gestational age in RA compared to the general population and that odds ratio increased to three-fold with active disease.

So, there is data that it increases harm in not just IBD but RA as well. We know there’s a strong role for inflammation in pregnancy and in pregnancy outcomes. So, the significant increase in pregnancy and neonatal complications is closely linked to disease activity and inflammation and stopping these low-risk meds and steroid sparing therapies lead to increased suffering for the mother, and post-partum flares and worst outcomes for the infant.

Healthy mother=Healthy Baby

So, what are some of the study designs and limitations-these have been brought up before. Pregnant women are not included in clinical trials. There’s unmeasured confounding in uncontrolled studies. Disease activity impacts the decision to continue or discontinue therapy. It’s not random. The choice of therapy is not random it is linked to their disease severity and what they have.

If you have a series of 100 patients or 1000 patients or 10,000 patients, you may not pick up the signal. The types of studies that are used for the most part are large data sets, so birds eye view and the highest quality study are large population studies from countries in Scandinavia usually where they have longitudinal assessment, parent-child linkage, and a good assessment of diagnosis in pregnancy outcomes. However, these are limited by a fair assessment of medication because they can only measure prescription and not whether the patient is actually taking the medicine. At a very poor assessment of disease activity and very granular data.

People are more likely to report a complication than a healthy pregnancy—incomplete info.

Let me tell you about PIANO—this is a prospective national registry of pregnant women with IBD started in 2007. PIANO divides people into four groups:

  • The unexposed—which could include people on steroids, 5 ASAS, antibiotics.
  • Thiopurines: Azathioprine, 6-mercaptop, urine
  • Biologics: Infliximab, Adalimumab, Certolizumab, Natalizumab
  • Combination Therapy: Azathioprine + Biologic

We define exposure as anytime within 3 months of conception through pregnancy. We compare the offspring of women exposed to a medication to offspring of women with IBD who have not been exposed. We looked at multiple different outcomes including pregnancy and neonatal outcomes , we administered questionnaires each trimester of pregnancy, three times in the first year of birth and then annually and we continue to follow these patients out to age 18.

So, here’s some of the data that has been published:

Corticosteroids –I often hear from providers, “oh I’ll just stop their medication and if they flare, we’ll give them steroids.” This actually leads to increase rates of pre-term birth, low birth weight, and NICU admission. Of course, the use of steroids is mostly tied to disease activity. It’s hard to separate the two. But the whole point is that you don’t want disease activity, you don’t want steroid use, you want them to be on a steroid sparring effective therapy.

The primary results of PIANO were published in 2021 in Gastro. We looked at 1,400 IBD pregnancies, 379 were not on drugs, 242 were on thiopurine, 642 were on biologics (Primarily anti-TNF), and 227 were on both biologic and thiopurines so about 1,000 biologic exposed pregnancies. We found no increase in birth defects, spontaneous abortion, preterm birth, low birth weight, or infections in the first year of life. We saw an increase in spontaneous abortion with disease activity and we used the Ages and Stages questionnaires to look at developmental milestones and saw no reduction.

We measured placental transfer and we measured maternal and cord blood for inflammation on day of birth. The highest transfer was with infliximab—the lowest was certolizumab, which doesn’t have the FC portion. Vedolizumab had a lower level in the infant than the mother. When this data first came out the first reaction was – “oh we should stop the biologic early”…so in Europe they have more of a glass is half empty look at medications in pregnancy…US tends to be glass is half full. So, they decided to stop at 22 weeks and that was in their official guidance. And it was not until 2 years ago that that was changed to match US recommendations because their own data showed an increase in disease activity and worse outcomes with doing that.

The concern was if you have this placental transfer, if you have therapeutic drug levels in the infant for several months after birth, do they have higher rates of infection? And we showed in PIANO there is no increase in infection at 4 months of age and at 1 year and we looked at if infection rates were relative to the level of drug in the infant at the time of birth, and there was no association to drug level at birth and recent infection.

So based on that now, we don’t stop the biologic at all during pregnancy, we continue it throughout. A systematic review and meta-analysis looking at 8,000 women with IBD who were exposed to biologics showed no increase in infant infections, antibiotic—- showing that biologics do not cause harm.

This data from Antoine Meyer who uses a French patient sample looked at women on anti-TNF and thiopurines and showed no increase in the risk of early life malignancy in children.

We ask about infection—we ask about immune suppression—we ask about malignancy and so far in these 3700 thiopurines and 3400 anti-TNFs from 3 years of age going out to 11 years of age, no increase. Very reassuring data.

PIANO looks at developmental milestones—out to 12 months and up to 4 years—shows no decline, we actually showed patients on TNF had statistically superior developmental milestones in every category compared to the national average and even within PIANO—not to say that TNF’s make your kid smarter…but the whole idea of controlling inflammation is what allows these kids to lay down their neural pathways.

What about the newer biologics?

Ustekinumab and Vedolizumab—again showing no increase in harm for both pregnancy and infant outcomes.

Antoine Meyer again from the French database looked at 398 vedolizumab pregnancies, 464 Ustekinumab pregnancies…again, no increase in harm for all these important outcomes.

It’s not just congenital malformations, what else can happen with these medications?

We’re working with Susan Fisher who is a placental scientist at UCSF, a question was raised about Vedolizumab inhibits alpha 4 beta 7, which can inhibit MAdCAM, which is involved in the process of plasmatation—so if you inhibit MAdCAM are you going to have issues in plasmatation. This was just a pilot study. The first one here the patient also had pulmonary hypertension—this is a normal placental at birth…you can see how this looks distinctly abnormal. The second patient was born 39 weeks, mother was completely healthy with her UC had no other issues during pregnancy. Compared to normal placenta…so are there other things we are missing here?

We are conducting a larger study now with multiple biologics the question is it’s not the Vedolizumab is my hypothesis, it’s more a result of inflammation, having IBD…but it will be interesting to see what these placentas look like when we finish. But maybe this is why these patients have higher rates of preeclampsia, higher rates of hypertensive disorders in pregnancy, and preterm birth. It may be related to the impact of inflammation on the placenta.

Small molecules—I feel very comfortable when a new biologic comes out to continue in pregnancy, I feel reassured by the minimal to lack of transfer in the first 14-16 weeks of gestation, with small molecules—they will transfer and Tofacitinib showed teratogenicity at super therapeutic doses, Upadacitinib showed teratogenicity at the doses we use in humans at 30 mg daily—so that does raise concern. There is now some data, again from clinical programs—no increase in birth defects, in pregnancy loss.

Same for –in press—looking at Upadacitinib …128 maternal exposed pregnancies, 80 of which were in clinical trials…similar rates of live births, spontaneous abortion, compared to what is expected.

What about breastmilk? In PIANO, we do collect samples and found the amount of transfer was really miniscule. But all biologics had transfer—we found no increase rates of infection or impact on developmental milestones with patients who were breastfed while the mother was on an immunomodulator.

We talked about vaccines—if these patients had detectable level of biologics—the first 6 months of life will they have normal response to vaccines? We looked at Tetanus — and found the rates of response were similar to infants of mothers who were not exposed to biologics…that was reassuring. We had 40 inadvertent Rotavirus exposures in our TNF babies, they did just fine. This has also been shown in European data as well. And I want to make sure you are all aware of the study from Lancet looking at Rotavirus vaccine—this was a prospective study looking at infants exposed to biologics, they gave 168 biologic exposed infants Rotavirus vaccine—can only be given the first 3-4 months of life, after 6 months it’s not given—so if you say no in the first 6 months, baby never gets it. They found no harm—at this point, we are letting patients on TNF get Rotavirus vaccine, you can argue the US and most areas because of herd immunity, Rotavirus may not be that important, but in other parts of the world it is—and it’s fine to give to patients exposed.

BCG vaccine is different—especially in an anti-TNF exposed baby, it does have a higher rate of TB, having to do with mechanism. There was one death in a European study given vaccine at 1 month of age. BCG can be given after 6 months of age. So Rotavirus is fine within 6 months, but BCG is still recommended after 6 months.

MMR in high-risk populations can be given at 6 months—why did the Europeans, Asians, and Americans have such different guidelines? This May (2024) we all got together for the Global Consensus Conference to create one standard for pregnant women globally and to help spread the word.

Our recommendations are to continue 5ASA, continue sulfasalazine, continue steroids when necessary, stop methotrexate, and continue thiopurine, continue anti-TNF therapy. The US and Europe agree we will not be stopping TNF early, we will continue it on schedule. We’ll continue vedolizumab and ustekinumabon on schedule, and it’s ok to start these medications in the middle of pregnancy.

Biosimilars have equal safety as originator. The Europeans didn’t understand why we wanted to include this, but this is a common question that comes up in the US. We consider biosimilars safety to be equal to the originator drug.

IL-23 therapies… even though not well studied, we feel based on mechanism they can be continued.

Small molecules should be discontinued—but particularly for the JAKS though, unless there is no effective alternative, they can stay on them. I have had patients where they have to stay on Tofacitinib and Upadacitinib because there was nothing else that worked for them.

Inactive vaccines should be given on schedule. we suggest live rotavirus can be given to children exposed to anti-TNF and recommend BCG be avoided in the first six months.

Final thoughts

A recording of this two-day FDA workshop will be available online in the next two weeks. I will share the link as soon as it becomes available. on my Instagram (natalieannhayden). There were fantastic discussions and as an IBD mom who has gone through pregnancies while on a biologic I am grateful for the consideration and the research that’s going on to help couples feel more confident and at ease about bringing life into this world while juggling complicated health conditions. The conversations and presentations at the workshop were extremely complex, I did my best to translate the information, so the patient community has a better grasp of where we stand about IBD pregnancy research.

If you have IBD and are planning to be a mom or if you are currently pregnant, please consider joining the PIANO study and being a part of this life-changing research for our community.

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

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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:

  1. 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!
  2. 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.
  3. 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:

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

Create a Support System:

  1. 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.
  2. 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:

  1. 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”.
  2. 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:

  1. 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.
  2. Diet: Stick to a diet that works for you. Avoid foods that trigger flare-ups, and keep healthy snacks readily available.
  3. 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.
  4. 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:

  1. 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.
  2. 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:

  1. 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:

  1. 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.
  2. 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.

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

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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.

Planning for a Family with IBD: Essential Guidance and the Latest Recommendations

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When you live with a disease like Crohn’s or ulcerative colitis, family planning takes thought and special consideration. 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 pre-conception counseling and family planning. This week on Lights, Camera, Crohn’s hear from Dr. Uma Mahadevan who co-chaired the conference, along with Dr. Christopher Robinson, a maternal fetal medicine specialist. As an IBD mom of three kids and the patient lead for the United States on this initiative, I’m excited to start sharing the latest guidance for our community.

The latest recommendations for IBD women

  • Couples should get pre-conception counseling.
  • Remission prior to conception for at least 3-6 months with objective evidence of remission.
  • All women with IBD should be followed as high-risk pregnancies (however that monitoring works in each country)
  • Pregnant women should take low dose aspirin daily by 12-16 weeks gestation to avoid preterm pre-eclampsia.

These recommendations were voted on and determined by more than 50 medical providers and IBD patient advocates from around the world. They are the gold standard, and the hope is that the recommendations help clear up the gray area and bring clarity to couples who are planning to grow their family and wanting to conceive.

“Our goal was to have a universal guideline that was the same worldwide. This would reduce confusion and avoid the default of just not giving women appropriate therapy. The Consensus really tried to advise what we, as pregnancy in IBD experts, do with our patients, so that women everywhere can have the same high level of care,” said Dr. Mahadevan.

Considerations for women prior to conception

Dr. Mahadevan says when a woman starts medication, she generally tells her whether it is a compatible with pregnancy or not.

“I also tell them when they are ready to consider conception to meet with me first. So generally – the education and family planning discussions should start before you are even ready to consider pregnancy. For couples, they should give their GI a 6-month window ideally to make sure there is remission, a chance to optimize medication, and get any testing done that is needed.”

Personally, I had bowel resection surgery in August 2015 while I was engaged. We knew our wedding was in June 2016, and following the surgery I reached remission for the first time in a decade, so timing was of the essence. I told my GI at a post-op appointment in November 2015 that we were planning to start trying for a baby right after our wedding. Knowing that, she put me on a prescription prenatal and folic acid to start prepping my body for pregnancy, I also had a colonoscopy the month prior to my wedding to confirm I was in remission.

Recovering in the hospital after my bowel resection surgery, with hopes of one day being a mom.

Dr. Mahadevan recommends patients start 1 mg of folic acid daily when she learns they are considering conception.

“The prenatal with iron can be bothersome to some patients so I wait for the OB to start that. I check Vitamin D, B12, and iron labs to make sure those are all good.”

Dr. Christopher Robinson, MD, MSCR, Charleston Maternal Fetal Medicine says preconception care is an excellent way to plan out a pregnancy path.

He went on to say, “We recognize that the best outcomes are achieved when preconception care is employed prior to conception for optimization of disease management. This is especially true of IBD where there can be a number of misconceptions about safety of medications and goals for nutrition and surveillance of the pregnancy. Thus, I would recommend preconception counseling and establishing a care plan with Maternal Fetal Medicine early in pregnancy (first trimester).”

What does pre-conception counseling entail

Preconception counseling can be extensive. You should expect to go through an entire healthcare maintenance checklist of the following:

  • Checking labs—vitamin levels, sometimes drug levels
  • Updating vaccines
  • Cancer screenings—pap smear, colonoscopy if appropriate
  • Ensuring the patient is in remission which may require a colonoscopy, intestinal ultrasound or other imaging
  • Making sure medications are compatible with pregnancy
  • Reviewing prior pregnancy and if there were complications
  • Discussing mode of delivery, referring to a Maternal Fetal Medicine doctor prior to pregnancy if prior complications or if a woman is extremely high risk (for example, prior blood clots), has an ostomy, or if there is evidence of malnutrition or difficulty with weight gain.
  • Discuss starting aspirin at week 12 and set up a visit schedule with your GI, as you’ll generally see them once per trimester.

I had four pregnancies—three healthy, full-term babies and one miscarriage. As soon as I found out I was pregnant I alerted my GI. From there I set up an appointment with my “regular” OB for the initial ultrasound at 8-10 weeks, and then moving forward I had monthly ultrasounds with a maternal fetal medicine doctor, appointments with my GI each trimester, and the regularly scheduled in-office visits with my OB. Even though I had flawless pregnancies each time (aside from the baby I lost around 7 weeks), I was considered “high risk” because of my history of Crohn’s disease and prior surgery.

I had three scheduled c-sections, not because I had perianal Crohn’s, but because my care team allowed me to decide what I felt most comfortable given my health history. If I could do it all over again, I’d do it all the same. I appreciated the extra surveillance for my children and for me, healed beautifully after each abdominal surgery, and was grateful that by staying on Humira until 39 weeks with my first child and 37 weeks with my younger children, I maintained my remission throughout pregnancy and after.

Dr. Robinson said while each pregnancy has specific needs, in general he also follows pregnancy with serial growth checks every 4 weeks across pregnancy (following the targeted anatomic scan).

“It is possible, if a patient has longstanding, well controlled disease, and an optimum prior pregnancy outcome history, to check a 32- and 36-week ultrasound for growth. However, in the first pregnancy, I agree with serial growth scans.”

What remission before pregnancy really looks like

Remission is often a difficult word to define when it comes to living with IBD. As Dr. Mahadevan tells me, “Not everyone can achieve complete remission.” So, what are doctors looking for and what should your target be?

“We are looking to give moms-to-be the best chance at conceiving, keeping the pregnancy, and having a health pregnancy. I like to see normal labs, normal calprotectin, normal colonoscopy, and imaging without visible inflammation. Not everyone can achieve this, but that is the ideal three to six months prior to conception,” explained Dr. Mahadevan.

“IBD has both genetic and autoimmune underlying components that can interfere with development of the placenta and affect maternal nutrition across pregnancy. In these cases, optimization of disease management can improve care and reduce risk for both mother and fetus. The goal of interventions is to reduce the risk for mother and infant through coordinated care with GI, MFM and OB/Gyn in pregnancy,” said Dr. Robinson.

Stay tuned to Lights, Camera, Crohn’s next week when the latest recommendations for IBD medication in pregnancy and lactation is disclosed. A full manuscript with all the recommendations and guidance is in the works, with hopes of the information being publicly available by the end of this year. I’ll be working on the companion piece for the manuscript dedicated specifically to the patient community.

The Patient Experience: Childfree with IBD

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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)

The Patient Experience: Tips and Tricks for your next MRE with IBD

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Everybody copes and has their own unique tips and tricks for undergoing an MRE. I received more than 100 messages with recommendations, there was some overlap and similar advice—but I know our community could benefit from this information and find comfort in it. One of the most challenging aspects of undergoing medical scans and procedures is the mental health aspect—the wait, the wondering. Oftentimes these results do not go in our way and may indicate we are in a serious flare or need surgery. So, while the actual process of drinking contrast and dealing with claustrophobia can be intense, the challenges are often amplified by the dread of finding out the story behind our symptoms. Understand you are not alone in that. I try and just prepare myself for the worst, while hoping for the best. Nobody wants “bad” news, but once you go through the scan and have a better idea of what is going on and then you can go after the flare and get to feeling better.

Here’s the link to Part 1 of “Everything You Need to Know Before an MRE with IBD” in case you missed it.

Advice from the community to ease the MRE experience

“Whether it’s laying there saying prayers (like the Rosary) or focusing on doing something (like walking through Sun salutations or walking through doing something you love to do) that has helped me.”

 “As a pediatric patient, my mom was allowed into the MRE room, and she held my foot (the only thing she could reach). Just feeling she was physically there helps my anxiety a lot. Ask for goggles that let you watch a movie are gamechangers because you can’t see anything but the movie, even if you tried!”

 “I close my eyes and pretend that I’m lying on a beach and listening to country music. I feel comfortable knowing I can see my feet at the other end, and they can communicate with me. Honestly, I close my eyes and sing my heart out!”

 “I listen to the loud banging noises and try to find melodies or patterns. Then, I repeat them back in my head and by the time I’ve done it a few times I’m in a meditative state or the test is over.”

 “I try to look up/behind me if I start to feel claustrophobic and you can see outside! I also find it almost relaxing to count the loud clips and beeps. It gets your mind distracted.”

“Picture yourself someone you like; use deep breathing to help soothe your vagus nerve.”

“I know it’s not ideal, but if you are extremely overwhelmed you can always get the test under general anesthesia.”

“I focus on my breathing and imagine I’m in my favorite place.”

“Eye mask with no metal clasps and ear plugs (or music) helps to reduce the sensory overload for me.”

“Before you get in the tube, ask for a towel. Put it over your eyes and do not take it off until they let you out.”

“Deep breaths. Visualize you’re in your favorite place and ask for music. Ask your GI if moving forward Intestinal Ultrasound can replace getting an MRE.”

“I’m normally able to tilt my head up to see out the end of the tube. It helps me so much!”

“Breathing exercises can help.”

“Ask if there is a bariatric imaging machine so you have more room.”

“Slow deep breathing helps me prepare for it and calm down.”

“I close my eyes and envision being on a bench or somewhere hard but with open space for me.”

“Gadolinium has a high allergic reaction. Even if you have not had it before. Communicate with your care team and ask about taking Benadryl.”

“Meditation and Guided Imagery.”

“I take deep breaths and remind myself I am going to be ok. It was quicker than I had expected.”

“Take extra Xanax! I take it for flying and always need more than I think.”

“If they let you pick the music, pick it! Having my music really helps me.”

“See if an Open MRI is available. Otherwise, a big dose of benzos.”

“I’ve been Twilight sedated before, it’s the only way to go!”

“I took Zofran. I also wear MRI safe clothes, so I don’t have to change. I make sure there’s no metal in my bra.”

“Focus on breathing. Close your eyes before being rolled in. Think of something like planning a party or a holiday.”

“I hate it. Hate it. Hate it. Someone told me just don’t open your eyes and it worked.”

“I take Ativan and do breathing exercises.”

“Always ask for a towel or wash cloth to cover your eyes.”

“Keep your eyes closed the whole time. Do not peek. And ask for your favorite music to play.”

“I keep my mind focused on other topics and talk to God.”

“Take anxiety meds! If I have to do this again, I will take something.”

“Let your care team know before you enter the room that you’re claustrophobic.”

“Say Affirmations or imagine being on a vacation on a sunny beach. Anything to divert your mind.”

“Last time my nurse gave me an orange smelling strip that helped so much.”

“I close my eyes and pray or sing songs I like the most in my mind.”

“Slow breathing and counting (in for 4 seconds and out for 4 seconds) or listening to music while in the tube.”

“I always have a Life Saver candy between the contrast drinks.”

“I asked them to bring me back far enough so I could tip my head back and see the ceiling.”

“My sister needs to take 3 anxiety pills for the MRE.”

“Try to find your happy place and go to that in the tube.”

“Have all the good and happy plans run through your mind and ponder them. Daydreams! Mantras!”

“I write stories in my head—like manifestations.”

“Think of a beach on a sunny day.”

“Make lists in your head.”

“Definitely have anxiety meds on hand.”

“Bring a personal blanket. This always helps me.”

“Bring ear plugs in case they don’t have some for you.”

“Use a wedge pillow for your legs (ask for it).”

“Visualize the best vacation, start to finish. Try to remember every detail. Distract your mind!”

“Ask for a heated blanket, it can be chilly in there.”

“When your mind wanders, count. Count breaths in (5) and out (5) and focus on the numbers.”

“Some MRI machines offer a mirror, almost like a periscope. It shows you the outside!”

“Fast paced work out music helps me.”

“I ask before we start that they give me a time update every 15 minutes.”

“It makes me less anxious when I hear the weird and terrible sounds the machine makes if I have NSYNC playing. Have them play music you like that’s also light and funny. (As in 90’s boy bands!)

“My office gives lavender stickers to help calm you to place on the robe. It helped me!”

“I’m SO claustrophobic but I always self-talk “I’m a mother and set the example for my kids.”

“Tell the tech you are nervous. Ask them to check in with you more than they usually would.”

“Remember you can squirm out of the bottom if you need to. Knowing that makes me feel less trapped.”

“Lavender essential oil.”

“I took half a Xanax and enjoyed every second…haha.”

“Take the meds and extra, if possible. I’ve taken up to 4-5 mg of Ativan!”

“They let you choose your radio station or podcast, which can help.”

“I’ve listened to the Hamilton soundtrack. I struggle more with getting the contrast down.”

“Meditation! I always do it before, during, and after.”

“Prepare a playlist or an audiobook and ask if the tech can play it over the speaker.”

“I pray the entire time, so I don’t panic.”

“Try not to investigate too much about the details, it may worry you too much.”

“It’s easier to go in feet first, I don’t know why…but it is.”

“Use the help/panic button and take a break midway through if needed.”

“Be prepared to hold your breath a lot—the tech will guide you.”

“Request a helmet with a mirror. It’ll help you see out of the tube.”

“Try and see how many song lyrics you can remember.”

“Tell them you are nervous. They are more understanding and will talk you through it more.”

“Make sure you give the anxiety meds at least 30 minutes to work their magic.”

“The pills help tremendously, but I also bring an eye mask.”

“Thank you for doing this article, I’ve canceled my MRE twice now out of fear.”

Additional MRE resources

MRE Test for Crohn’s: Purpose, Procedure, and Risks (healthline.com)

The Role of Magnetic Resonance Enterography in Crohn’s Disease: A Review of Recent Literature – PMC (nih.gov)

How is IBD Diagnosed? | Crohn’s & Colitis Foundation (crohnscolitisfoundation.org)

MRE (MR Enterography) Imaging for Crohn’s Disease (healthcentral.com)MR Enterography in Ulcerative Colitis: Beyond Endoscopy | RadioGraphics (rsna.org)

Tips for Talking to Kids about Your Crohn’s and Colitis

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Kids are more intuitive than we tend to give them credit for. They are always watching us and even before they’re able to speak in sentences they have an innate sense of empathy and understanding. As an IBD mom of three, whose kids are almost 7, 5, and 2.5, I’ve started to think more lately about how to explain my Crohn’s disease to them in a way that will educate them, without scaring them. It can be a difficult balance.

I know my older two know mama gives herself shots, often needs to run to the bathroom, and gets “tummy aches” but I haven’t yet dropped the term “Crohn’s” or “disease” to them quite yet. It can be hard to explain and sometimes when I start trying to share more, I feel like it’s still going over their heads. Their concerned eyes when I’m in pain and how they watch me do my Humira injections is a reminder to me that they are aware something is going on. As we potty train my youngest, he commends himself for going on the potty by saying he’s “just like mama” …ah, what a great analogy!

This week on Lights, Camera, Crohn’s hear from several IBD parents about how they transparently communicate their experiences with Crohn’s disease and ulcerative colitis. It can be a fine line educating and being open, while also trying not to overwhelm and scare kids. I’ve found it extremely helpful tapping into the community and gaining input from others and I hope you do, too!

Helpful Guidelines for Navigating the conversation with your kids

  • Choose the right time. Pick a time when you won’t be interrupted and can focus on the conversation. Ensure it’s a moment when you and your children are feeling calm, at ease, and open to discussion. My recommendation as an IBD mom would be to have this conversation on a “feel good” day—rather than when you’re flaring or in the hospital.
  • Prepare yourself. Decide in advance how much detail you want to share based on your child’s age and maturity level. IBD is complicated, be ready for a range of emotions including sadness, fear, and even anger.
  • Use age-appropriate language. Explain your IBD in a way that is understandable to your child. Avoid using confusing or technical terms. For younger kids, it might be helpful to compare your illness to something they already understand.
  • Be honest but reassuring. You can be transparent and truthful, but also reassure them about all you do to manage and control your IBD. Empathize with the aspects of your daily life that won’t change, to provide them with a sense of stability and comfort.
  • Focus on practical impacts. Explain how your IBD might affect your daily routine or activities with them in a straightforward way. Use examples such as—“Mommy’s Crohn’s can be unpredictable, I may say we’re going to the park, but then I don’t feel well so we have a movie date and snuggle instead and plan to go to the park another day.”
  • Encourage questions. Allow your children to ask questions and express their feelings and know this will be an ongoing conversation throughout life. Go into the conversation without expectations. It’s ok to admit if you don’t have all the answers. You can explore some of the questions together.
  • Provide continuous support. Let your kids know that it’s okay to have and express their feelings about your IBD. Offer them ongoing support and reassurance. Let them know they can always come to you with questions or concerns at any time.
  • Seek support when needed. Consider enlisting the help of a therapist or a counselor, especially if you or your children are struggling to cope. Joining support groups and tapping into the online patient community and connecting with fellow IBD families in similar situations can be beneficial.
  • Keep the conversation going. Check in with your children regularly about your IBD and how you’re feeling. Be casual about it. Share when you see an opportunity to teach or calm fears that your kids may be internalizing.
  • Highlight the positives. While acknowledging the challenges, also focus on the positive aspects, such as the strength of your family unit or the support you have from friends and community. I always tell my kids when I’m doing my injection that mommy is strong, and we can all do hard things.

By approaching the conversation with honesty, sensitivity, and openness, you can help your children understand and cope with your chronic illness in a healthy way.

My 2-year-old trying to make me smile during a rough day in the bathroom.

IBD as a family disease

There’s a common saying in our community that IBD is a family disease, in that whether you have Crohn’s or ulcerative colitis or not, if someone in your nuclear family has it, the disease impacts your living experience in some way.

Emily and her husband have IBD and so do their three daughters, so discussions about IBD are frequent in their home since it’s a living reality for all five of them. She tells me the conversations tend to fall in one of the following categories:

1) Explanations of IBD details, procedures, surgeries, or diet needs for a member (or members) of the family.

2) Discussions to calm anxieties in one child about the presentation of IBD in themselves or in another family member.

She says the second category tends to be the more challenging conversations, by far.

“In the first category, we tend to stick to factual, age-appropriate explanations. For example, when our five-year-old needed to know about scopes and surgeries, we explained that a specific family member has “belly problems” and the doctor is helping by taking pictures of their belly and fixing the parts that were causing trouble,” explained Emily.

As the girls have gotten older, Emily says they add details about how the doctors do different procedures – always led by their child’s level of interest and desire for the knowledge.

“We are always honest about pain or discomfort related to medical procedures. Many things are NOT painful, and we want them to trust us that something does not hurt if we tell them. This has served us well. When surgery was needed for one daughter, we discussed how she would be sore afterwards, but we had ways to help the pain until it would subside. This was undoubtedly a challenging time for us, but our daughter did amazing,” Emily said.

As Emily’s girls have gotten older, as a preteen and teen, they understand more about their parents,’ and their own, IBD. They have lived through surgeries and many medical procedures in their family. Emily says now the more challenging conversations have started, related to knowing the possibilities around IBD.

“For example, I had a colon perforation following a routine monitoring scope for my IBD. It was a rare event that we are all warned about prior to a colonoscopy. It resulted in a more significant repair surgery and several days in the hospital. My daughters are old enough to realize that they also have scopes regularly and we had to have some discussions about the chance that the same thing could happen to them. It was challenging for our family for a few rounds of scopes!”

Emily says they addressed this topic mostly by focusing on the “helpers” as the iconic Mr. Rogers would! Yes, bad things can happen, but she reminded her daughters that they are so lucky to have doctors and medical professionals to “fix” these problems. She reminds them that they are lucky to have family and friends to help when they are not feeling well. She also talks about how they are lucky to have each other – who understand the ups and downs of this disease.

“This narrative has gotten our family through many challenges! I talk with my oldest daughter much more now about the details of her IBD. She is a teen and has had more than her fair share of IBD troubles. She has watched me deal with my challenges too. We are open with each other about the negative parts, and our frustrations having to deal with IBD. It is a double-edged sword to have her growing up! On the one hand – I hate that she is old enough to really understand the negatives. But she is also turning into an amazing young woman who is one of my closest confidants with this disease. We understand each other’s highs and lows like most cannot. We supported each other in challenging times and celebrate together for each win!”

Sari says she bought a couple of children’s books that feature a caregiver with chronic illness.

“One of them is titled ‘Some days’…it’s about a mom with multiple sclerosis, but it works for IBD, too. It goes over how some days are more exciting and others are simpler more restful days. If there are other kids’ books people have found, I’d love to hear about them!”

Kate also has a book by someone with Crohn’s, but says they’ve also always been very honest and open about it with her son.

“I always worried he would tell people too much, but I’ve found he’s incredibly respectful and it has made me feel less shame in my body because I talk to him so positively about it. Especially the perianal disease, which has been really hard to talk about with people. My son is six and understands my immune system attacks my digestive tract. We also have a puzzle of the body we have played with for years and he knows the colon, intestines, rectum, etc. because of that.”

Becca says one of her favorite memories as an IBD mom is when her daughter was learning body parts and said, “Mommy and I have vulvas, Daddy has a penis, Daddy and I have butts, and mommy has a bag!” She also often asks to see her “cut” on my belly (c-section scar), but I constantly remind her that she shares her “cut” with a lot of intestine.”

Becca also says for the longest time her daughter thought that EVERY mom gets an ostomy bag when they’ve had a baby.

“She didn’t realize I had mine for four years before she was born!”

As an IBD Dad, Brandon said he stumbled upon a video series when his son was around age five that provided a solid explanation. At the time his son had a broken arm.

“The video explained people have booboos you can’t see. I explained that I had what the girl in the video has. Nowadays, I show both my boys’ photos from my colonoscopies.”

You can watch the video Brandon showed his son here.

Here are additional books about chronic illness that others have recommended:

The Crohn’s Bucket by Keyaan Vegdani

My mom is sick and it’s ok by Angie McPherson

My tummy really hurts by Shawntel Bethea

Guts: A Graphic Novel by Raina Telgemeier

Like Me: A Story About Disability and Discovering God’s Image in Every Person by Laura Wifler

Some Days-A Tale of Love, Ice cream, and Mom’s Chronic Illness by Julie A. Stamm

Wonder Mommy by Jennifer Senne

Ursula and Her Ulcerative Colitis: Kids, You Can Call it UC by Michaela Morrisey

My Silly Illy by Campbell Dwyer

Aging and IBD: Key Considerations for the Patient Community

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Did you know within the next decade, one in three IBD patients will be over age 60 and that right now, adults over 60 make up the greatest portion of the IBD population? As someone who was diagnosed with Crohn’s disease at age 21, who is now 40, I’ve started to think more about what managing and living with IBD will look like as I continue to age. Managing IBD in older adults is complex and requires considering each person’s individual risk of complications and co-morbidities.

This week on Lights, Camera, Crohn’s a look at the research that’s available and what we can expect as an aging patient population. Before we get started, it’s important to note there are two groups—adult-and-pediatric onset IBD who are getting older and then a group of people who are diagnosed later in life (after age 60) referred to as “elderly-onset IBD”. Every review I saw online uses age 60 as the benchmark to differentiate these two groups. Elderly onset makes up about 10-20% of patients who are newly diagnosed with IBD.

Unfortunately, there’s limited data and studies that have followed patients for 20-plus years, so we don’t know a ton about how aging impacts patients who were diagnosed as pediatrics or as younger adults compared to those who are in their later years. While there’s a well-known belief that IBD can “burn out” as we age, meaning that symptoms for some quiet down, that is of course not the case for all.

Considerations when treating IBD in older age

Have you ever talked to your GI about how your IBD will be managed as you age? I know I haven’t. I feel that there’s so much to focus on in the “now” it can be overwhelming to think about how we’ll take care of ourselves 20-40 years from now! As we surpass age 50, there are important discussions to be had.

What patients and providers need to consider:

  • Risk of disease and treatment related complications
  • Tolerability of IBD therapies, which is unique to each person’s personal experience
  • Drug metabolism and how it alters with aging
  • Body composition changes which include a reduction in total body water and an increase in total body fat.
  • The delicate balance of disease-related risks vs. treat-related complications.
  • Risk of adverse events from medications vs. benefit shift (higher rates of infections, malignancy, and drug intolerance).

Given these factors alone, the way in which IBD is managed in older age isn’t as clear cut as when we’re younger. With both thiopurines and biologics, older patients are more likely to discontinue treatment. Older adults may value symptomatic remission (and quality of life) more than mucosal healing.

This study entitled, “The elderly IBD patient in the modern era: changing paradigms in risk stratification and therapeutic management” states, “Despite elderly onset IBD presenting with a less extensive or aggressive phenotype than adult-onset IBD, its disease course is not necessarily more benign. In Everhov et al.’s work,  22% of elderly onset Crohn’s patients underwent surgery by 5 years, although the rate was lower in UC patients (6%). Similarly, the cumulative probability of surgery at 10 years was 32% in Crohn’s patients compared with 8% in UC in another population-based study.”

According to an article in Time called “The Connection Between IBD and Aging”, whereas IBD was once thought as a disease with two spikes in onset—20s to 30s and 40s to 50s—doctors are learning there is a third spike that begins later in life. For those of us who are diagnosed when we are younger, our bodies have lived with decades of damage the disease has caused, often we’ve had surgery, been on medications with serious side effects, and ongoing flare-ups for much of our lives. For those who get IBD after 60, rather than seeing damage in various parts of the intestinal tract, more activity is seen in the colon.

The article goes on to say, “It’s no surprise IBD causes chronic inflammation, and so does aging. So, as we age with IBD, we’re at greater risk for inflammation linked-health issues, including cardiovascular disease, cancer, hypertension, chronic obstructive pulmonary diseases, chronic kidney diseases, obesity, skin issues, blood clots, arthritis, dementia, and skeletal muscle loss.”

Comorbidities and IBD

According to the Crohn’s and Colitis Foundation, people who have Crohn’s may also have a better quality of life as they age, partly thanks to modern medications and less use of steroids long term, which can trigger bone loss and cataracts over time, among other symptoms. Steroids are the most dangerous medication we have to treat IBD, sometimes of course they are necessary, but long-term use should be avoided at all costs.

People over 60 are more prone to infections and have a greater likelihood of being on medications for additional health conditions. They also often have visual, cognitive impairments, risks for falls, and surgery complications.

Underrepresentation in clinical trials

One of the main reasons we lack data about IBD in older age is because this population of patients is often excluded from clinical trials. This study from The Lancet Gastroenterology & Hepatology says, “A deeper understanding of biological and functional age, dynamic risk stratification strategies (including frailty-based risk assessment tools), comparative effectiveness and safety of current therapies and treatment strategies, and shared decision making to inform treatment goals and targets is needed to improve outcomes in older adults with IBD.”

A Crohn’s and Colitis Foundation study found that clinical trials for biologics only included 1% of people over age 65. How can patients feel safe about being put on biologics when there isn’t research to back up the safety and efficacy of these heavy-duty medications when they reach that age bracket?

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

As far as menopause goes, we still don’t know much yet about how this impacts women and the  role it plays in disease course. Some small studies have found a modest protective role for estrogen-replacement therapies for IBD activity. But there’s more research needed in this area. According to the Crohn’s and Colitis Foundation menopause may begin earlier in IBD patients, but this does not appear to have any negative effect on disease activity or progression. Women with IBD are at greater risk for osteoporosis in menopause, this is why it’s so important we’re proactive in younger age by getting bone density tests and taking calcium and vitamin D supplementation (if labs show you’re deficient). I have taken 50,000 IU of Vitamin D once a week for years to help combat bone loss and this past year I started seeing a Bone Health Doctor to keep a close eye on my osteopenia. My GI told me during my clinic visit this month he wants me to take 2 Tums a day for added calcium.

As far as men, aside from methotrexate, IBD medications do not usually cause erectile dysfunction. Ileal pouch anal anastomosis (IPAA or J-Pouch) surgery, while sometimes associated with loss of sexual function, is not associated with erectile dysfunction. There’s also no known connection between IBD and prostate cancer.

Patient input from those who are 60-plus

Patti says her age has changed how she manages her IBD.

“I’m 60 years old. Mostly, I compartmentalize social outing to 2 hours at a time. If I extend it, I’m exhausted and feel crummy for the entire next day or two. If there’s a situation where I know it will have to be more than three hours, I make sure to rest and eat less the day before, and then eat minimally until the last hour or so of the outing. This way, I don’t have to feel like I’m running on empty during the entire outing, and I can prepare to be home for whatever the food decides to do, in addition to the exhaustion and pain that I know are coming.”

Patti went on to say that she feels her Crohn’s brought on menopause sooner, but also that her Crohn’s may have masked menopause symptoms because she was used to low-grade fevers and sleep interruptions.

“I found out I was post-menopausal at 50 and I basically missed the transition (the symptoms). I took that as a win (ha), but I do feel like my body is older than my age. I can’t really explain why, but the constant inflammation, plus my body trying to resolve it—I believe it’s taken a toll on my aging. But recently turning 60 feels AMAZING. TO be sick since I was 8 years old and have fought my way to my sixth decade feels like I climbed a mountain! I’m proud of how hard I’ve fought all these years, while still thoroughly enjoying life, my marriage, my daughters, and my career!”

Heidi was diagnosed with Crohn’s at age 50 after years of being told she had IBS. She found out in July 2023 that she had a” severe Crohn’s reoccurance after 5 years on Stelara. Her options were Skyrizi or Rinvoq since she has a history of TNF inhibitors failing her. Even though Rinvoq had a slightly better chance of putting her in remission, her and her care team thought Skyrizi would be a safer option due to her age. Rinvoq has a warning regarding increased cardiovascular events, such as heart attack, stroke, or death in people 50 years or older, along with risk of blood clots.

“If I don’t respond well enough to Skyrizi, we will then try Rinvoq, but the safety profile seemed better especially for me being over 60, and that’s important to me. I also worry about what is going to happen when I retire and my medical insurance goes from commercial to Medicare! I think they often have a deductible that is much higher than commercial insurance.”

Heidi was also diagnosed with osteoporosis in her 50’s and took treatment for it for 5 years.

“My risk for fracture still increases as I age, so my GI ensures I have DEXA scans every 2 years.”

Brenda had diverticulitis for a few years, and beginning in December 2011 she started having other bowel problems. She went straight to her general practitioner, and he ordered a colonoscopy, which confirmed her Crohn’s disease diagnosis at age 63.

“After many failed medications, I had part of my colon removed and I had a temporary ileostomy. Unfortunately, I got an abscess which made me really sick and in 2015 I had more colon removed and the stoma was made permanent. Since that surgery, I’ve been quite well and basically get on with my life without any IBD medication.”

Brenda is now 75 and worries about getting sick again and needing additional surgeries. She also worries that as she ages that one day she may not be able to deal with her ostomy bag herself and that  concerns her.

Keith has ulcerative colitis and his wife was diagnosed in her 20s with ulcerative colitis. Her IBD was under control for years until she was hospitalized 20 years ago. She underwent her first operation then and it was successful. Fast forward two decades and she flared and required additional surgery.

“She’s doing ok now, but both surgeries were a result of her bowel narrowing.”

Jody is on Remicade and is currently in remission. She started with colitis in her 20s and then her diagnosis shifted to Crohn’s in her 60s. She’s in her early 70s now. She’s tried several biologics and medications.

“Not sure when I started Remicade. I have tried a few before and they were either too expensive or I had issues with them. I am in the United States so our insurance is not easy. I also have taken Mesalamine for years for colitis, which has worked great but it’s another expensive drug, so the prescription was cut in half due to cost a few years ago.

Sherry hasn’t changed much in her 44 years of living with Crohn’s, but has more of a focus on an overall healthy lifestyle.

“I’ve gotten better at avoiding trigger foods and being more diligent taking necessary vitamins. I’ve always been active (weight training, golf, and skiing) and remain so if not more these days. The introduction of biologics has obviously been a game changer a huge benefit.

Jeff says gastroenterologists seem to believe you more as you age.

“As you get older, more things in your body are broken. It’s a balancing act as to what is most critical. You also start running into unknown territory for GI docs, as many treatments do not have much data, if any, for seniors. GI docs do seem to believe you more when you need help.

Kanchan is currently 74. She has had a J-Pouch since 1989.

“For the last 4-5 months I am making probiotic yogurts at home and the last month I started making Kefir. I’m hoping for good results.”

Sherri– “I was diagnosed with IBD in 2015 when I was 56. I’m tired of the whole thing. What’s going to happen when I can’t look after myself?”

Closing Thoughts

It’s important for us to work closely with our healthcare teams, not only gastroenterologists, but all specialists, to manage IBD effectively as we age. It is beneficial to check in with a registered IBD dietitian, as aging may affect the body’s ability to absorb nutrients. I often wonder if when my kids are in high school or college (my youngest is 2.5!), if I’ll play a little Russian Roulette and try going off my biologic. I’ve been in surgery-induced remission since August 2015 and if this continues (God willing), I think I will try. Right now, as an IBD mom of 3 kids (ages 6, 5, and 2.5), I don’t feel confident enough that I won’t flare and need to pull out all the stops I can, so I can be present and well for my young family.

There’s a delicate balance with each decision we make along the way and the best we can do is advocate for ourselves, be proactive and take measures now to be healthy, do our research, and stay as educated as we can about what’s coming down the pipeline for the IBD community as we age. By controlling inflammation in our younger years, we can help improve our future quality of life and prevent age-related symptoms.

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