Tag: Lights Camera Crohn’s

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.

Talking to Your Boss and Coworkers About Inflammatory Bowel Disease

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

The more they know

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

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

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

Why It’s Important to Share

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

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

  • Understanding: Colleagues aware of your condition are more likely to be supportive and understanding during challenging times. One of the most important aspects of IBD to share with others who do not have our disease is the unpredictability of our health. Since we’re able to look perfectly normal on the outside, it can be difficult for an average person to fully grasp or believe the pain we’re dealing with. I remember countless days in Corporate America having to unbutton my work pants and having to tell my co-workers I was on the struggle bus. I can still envision myself on the news desk when the camera shifted to a weather segment and slumping over in pain. Everyone I worked with was aware of when I was having an “off” day. I’ve had co-workers drive me to the emergency room during the workday. I always felt supported and was never made to feel like I was less than because of my Crohn’s and for that I am still grateful.
  • Reduced Stigma: Talking openly about Crohn’s and ulcerative colitis can help reduce the stigma associated with chronic illnesses and foster a more inclusive workplace. People may question or wonder why you may have unique work accommodations, while it’s none of their business, being transparent, and really stepping up to the plate and going above and beyond when you’re able will show others that you never use your disease as an ”excuse”. If you have an infusion or a doctor’s appointment that makes you arrive late, it’s helpful to inform your boss and co-workers so they know why you may be strolling in during the middle of the day.

Preparing for the Conversation

  • Know Your Rights: Familiarize yourself with your workplace’s policies on medical conditions and accommodations. Understanding your rights under laws such as the Americans with Disabilities Act (ADA) can provide a framework for your discussion. Check out these tips from the Crohn’s and Colitis Foundation.
  • Plan Ahead and Explain Your Needs: Choose an appropriate time and setting for the conversation. Ensure privacy and sufficient time to discuss your needs without interruptions. I always had a face-to-face conversation with my bosses, and they were appreciative of knowing. Clearly state what accommodations you need to manage your condition effectively. This could include flexible hours, a work-from-home arrangement, or having a desk closer to the restroom. Emphasize your dedication to your job and how these accommodations will help you remain productive. For example, “Having the ability to adjust my work schedule during flare-ups will help me stay on top of my responsibilities.” If I was prepping for a colonoscopy or having a scan, I let my team know.
  • Gather Information: Be ready to explain what IBD is, how it affects you, and what accommodations or support you might need. A high-level explanation is often sufficient.Your boss doesn’t need to know your entire patient journey. For example, “I have a chronic condition called Crohn’s disease/ulcerative colitis that affects my digestive system. This can sometimes cause severe abdominal pain and fatigue.”
  • Offer Solutions: Suggest practical ways to implement accommodations. For example, “During flare-ups, I could work from home and communicate via video calls and emails to stay connected with the team.” Your boss may have questions or concerns. Be prepared to address them calmly and provide any necessary documentation from your healthcare provider.

Communicating with Coworkers

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

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

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

Final Thoughts

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

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

Helpful Resources:

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

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

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

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

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

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: The Challenge of Extraintestinal Manifestations with IBD and how to deal

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Crohn’s disease and ulcerative colitis can cause symptoms both in and out of the gut. When our disease wreaks havoc on other parts of our body, outside of our intestines, it’s known as an extraintestinal manifestation (EIM) or complication. Did you know, according to the Crohn’s and Colitis Foundation, anywhere between 25-40% of people with IBD experience some type of EIM? EIMs arise in the joints, skin, eyes, bones, kidneys, and liver or as anemia. This week on Lights, Camera, Crohn’s a deep dive into the heavy toll of living with not only IBD but the EIMs that come along with them and how more than 30 patients manage these issues that can significantly impact the quality of life and overall health of IBD patients.

One of the most interesting quotes from a patient was that while one man doesn’t like EIMs, he’s grateful for them because that’s often the only time family, friends, and medical providers can see with their own eyes what a serious illness IBD is. It’s heavy, but it makes sense. IBD is so much more than a bathroom disease and EIMs go to show how severe Crohn’s and ulcerative colitis can be and how this is a full body disease.

The most common EIMs associated with IBD

  • Joint problems:  This is the most common EIM and affects around 25% of IBD patients. The pain normally occurs in the knees, ankles, and wrists, but can also happen in the spine in the form of ankylosing spondylitis. For many of us, our biologics or biosimilars are approved to treat both IBD and rheumatoid arthritis and this can help alleviate joint pain.
  • Skin Conditions: The two main conditions are Erythema nodosum and Pyoderma gangrenosum. EN is characterized by tender red nodules that usually occur on the shins. PG is a more severe skin condition that causes painful ulcers. Those with IBD also have a greater chance of developing skin tags, anal fissures, and fistulas, both Enterocutaneous (from the intestine to the skin) and Perianal (around the anus that can drain blood, pus, and/or stool.
  • Eye Disorders: When those with IBD deal with red eyes, pain, and vision problems, uveitis and episcleritis tend to be the culprit.
  • Kidney complications: Medications tend to cause this, and serious kidney complications associated with IBD are rare, but still can happen in the way of kidney stones, hydronephrosis (an obstruction of the ureters, which connect the kidney to the bladder), and fistulas (abnormal connections between the intestines, bladder, or ureter). Amyloidosis (an abnormal deposit of protein in the kidneys) and Glomerulonephritis (inflammation in the kidney that limits its ability to filter properly) can also occur.
  • Liver and Biliary Tract Diseases: Primary sclerosing cholangitis (PSC) is a serious liver disease is most commonly seen in conjunction with ulcerative colitis. This is often discovered when lab works show liver markers are out of whack and it’s diagnosed with a liver biopsy to determine the stage and level of severity. Fatty Liver Disease, Hepatitis, and Gallstones are also considered EIMs.
  • Bone Health Issues: Osteoporosis and osteopenia can result from years of chronic inflammation, steroid use, and malnutrition. It’s a good idea to get a baseline DEXA bone scan and to get scans periodically to make sure you’re not experiencing this.
  • Lung Issues: While this is less common, lung involvement can include airway inflammation and interstitial lung disease.

Managing EIMs along with your IBD

Managing and treating EIMs is no easy feat and often necessitates a multidisciplinary approach, including your gastroenterologist, rheumatologist, dermatologist, and other specialists, depending on what organs are affected. Treatment strategies might include non-steroidal anti-inflammatory drugs (NSAIDs), immunosuppressive medications, and biological therapies which are tailored to reduce inflammation and manage symptoms.

You may wonder if there’s any way to prevent EIMs from happening in the first place. There are several strategies that can help reduce your risk, but much like anything with IBD, don’t blame yourself if EIMs keep happening to you and feel out of your control.

  • Effective IBD Management: Controlling your IBD through appropriate medical therapy is crucial, whether that’s in the way of aminosalicylates, steroids, immunomodulators, and biologics/biosimilars. The goal is to reach and sustain remission of your IBD, which can help reduce the risk of EIMs popping up.
  • Communicating when you see a change: Once you notice a possible EIM, it’s imperative you share this with your healthcare provider. Early detection and treatment of EIMs can prevent them from getting more severe. A simple message on the Portal to your GI addressing your concern or worry helps alert your doctor so they can take the appropriate measures before symptoms spiral out of control.
  • Lifestyle Modifications: Smoking is known to worsen the course of IBD and increase the risk of EIMs, especially in Crohn’s disease. Consulting with a dietitian who specializes in IBD can help ensure you are receiving adequate nutrition and getting regular exercise can help reduce inflammation, improve bone health, and enhance your overall wellbeing. Speaking of bone health, calcium and vitamin D supplements can help counteract the lasting effects of steroid use and malnutrition.
  • Collaborative Care: By branching out from your GI and seeking care from specialists, you have the best bet of ensuring EIMs are treated promptly and effectively. Talk with your GI about the potential signs and symptoms of EIMs so you know what to watch out for and have a game plan in place if one were to arise to feel more in control.

Medical gaslighting and EIMs             

Unfortunately, far too many patients and caregivers feel symptoms are dismissed or not taken seriously by healthcare providers, which can be particularly discouraging and frustrating.

“I had a tough time getting my consultant to take me seriously. The eye problems were “probably just bad eye strain,” the mouth ulcers were “maybe the cups in the office not properly being cleaned, and the rashes were “probably a reaction to laundry detergent or maybe insects getting on my clothes while they are on the clothesline outside.”

Here are some helpful strategies to help you speak up in these situations and feel empowered to advocate for your health effectively:

  • Document Your Symptoms: You may think you’ll remember what’s going on, but life with chronic illness gets hazy and when we think back, we can lose sight of the actual frequency and intensity of what we’re going through. A detailed diary will help provide concrete evidence to discuss with your healthcare provider and may even help assist in identifying patterns that are relevant to your diagnosis and treatment.
  • Seek Second Opinions: If you don’t feel listened to or heard, don’t hesitate to get a second opinion, and find a provider you jive well with. Each doctor has varying levels of experience with IBD and EIMs, find the person who best understands your personal situation and is willing to get you to where you need to be, rather than dumbing down or belittling your experience.
  • Be Prepared for All Appointments: Write down a list of questions and concerns before your appointments. Bring your symptom diary and any other relevant medical records. By being prepared, you can better focus and ensure that you’re capitalizing on the one-on-one time you have with your doctor while you’re face to face.
  • Bring an Advocate: Having a trusted friend or family member at your appointment can provide support and help ensure that your voice is heard. That person can also help remember details on the appointment that you may not.
  • Be Clear and Assertive: There is a delicate balance between being assertive about your concerns without being confrontational. Be descriptive and transparent about the impact your symptoms have on your daily life, paint as clear a picture as you can and explain why it’s important for these symptoms to be addressed.
  • Educate Yourself: By understanding what EIMs are ahead of your appointment you can feel more confident about asserting your concerns and how best to improve your health. If you’re able to “talk the talk” with medical language about your condition, your healthcare professional will be more apt to listen.
  • Formal Complaints: If you repeatedly feel as though you’re dealing with an unprofessional doctor who has a dismissive attitude, or if you feel your care is compromised, it may be necessary to share a formal complaint with the medical facility.

Let’s hear from IBD patients and caregivers

Leah daughter was diagnosed with Crohn’s when she was five.

“Little did we know our most difficult days would come a few years later and be due to an extraintestinal manifestation of her IBD. It started off as bruises on my daughter’s shins. I thought it was related to her sledding on her knees with the recent snowfall. Unfortunately, I had never learned about Erythema nodosum being related to IBD and would later learn this is what she had. The spots on her legs grew and grew. They eventually got raised and painful. I emailed our GI nurse and thankfully she instantly knew and sent us for stat labs. My daughter was on Humira and wasn’t in remission, so the drug was increased. Week by week things got worse and more painful. The redness and swelling covered her entire shins. The bumps spread to the bottom of her feet and were extremely painful. Her feet swelled and she was crying in pain and no longer able to walk on them.”

Leah ended up taking her daughter to the ER where she got steroids and started on antibiotics as it looked like the spots had turned into cellulitis on her feet.

“I was not prepared that EN could be associated with IBD. I wish I had known earlier, so her condition could have been treated more aggressively from the beginning. It was many months before she healed, and her maintenance medication was switched.”

Emilie– “This is such an important topic and I wish it were discussed more! Most of my UC complications have revolved around extraintestinal manifestations (as opposed to typical UC symptoms). I have had arthritis and uveitis and for me, extraintestinal manifestations always come first, before a typical flare and always stay long after the typical UC symptoms have resolved. At times, I’ve just had extraintestinal manifestations without any typical UC flare symptoms. The most frustrating part about EIM symptoms is that most GI doctors aren’t super familiar with them and only think they happen after a UC flare. Thankfully, I’ve been followed by a rheumatologist since I was diagnosed (because I had EM symptoms long before I had typical UC symptoms and saw a rheumatologist first). My rheumatologist is always like, “we follow people with these symptoms to see if they develop IBD” and many of my GI doctors have said, “this can’t be because of your UC.”

Dina was diagnosed with UC in January 2022 after experiencing IBD-related symptoms six months prior. Since then, she’s had pneumonia, mono, CMV, RSV, and other illnesses. She went from weighing 150 pounds to 120 and was so weak she could barely walk. She was switched to Entyvio/Rinvoq as a combo therapy along with an anti-viral drug used to treat HIV to try and keep the CMV virus at bay. The CMV made her liver markers skyrocket, and it was discovered she has Stage 1 PSC, in addition to everything else.

“I consider this a blessing because once I went back on the full dose of anti-viral my liver counts normalized. We never would have known about the PSC until it got severe or at a later stage. My GI said he’s never seen PSC in this early stage, so I’m grateful we can start earlier than most to monitor it.

Lynette-“I’ve dealt with many EIMs. To manage my anemia, I take iron and having a hysterectomy helped. For my kidney stones, I stay hydrated with electrolytes daily. I had surgery for hemorrhoids and fistulas. I’m on medication to manage my joint pain and use my heating pad. I use a special toothpaste to prevent cavities and I floss daily. I do everything I can to reduce stress and anxiety—from breathwork, to meditation, and openly communicating with my family.

Madison-“My personal experience is severe joint pain and swelling, as well as erythema nodosum. My IBD flares typically begin with joint pain. At times, it can be so severe I can’t walk up and down stairs because my ankles are so swollen. When I was first diagnosed with Crohn’s, in addition to my joint pain, I started to develop red tender bumps all over my legs up to my knees. They were so painful to touch, and they were diagnosed as Erythema nodosum which only occurs in about 10-15% of Crohn’s patients. Once we got my IBD under control and found the underlying cause of my joint pain and erythema nodosum they thankfully got better.”

Myisha- “I experience inflammation in my eyes three to four times a year. I also deal with osteoarthritis. Mentally, I’ve checked out on my Crohn’s awhile ago. I just take it day by day. I have eye drops that I have to use daily to help with inflammation, but osteoarthritis is painful and some days I want to cut my limbs off. I always try to remind myself that someone out there has it worse and today might be a high pain day, but the darkness doesn’t stay around forever, eventually the sun will shine again, and I’ll have a low pain day.”

Christopher- “I’m 46. I was diagnosed with Crohn’s about two years ago. Three years before that I began having panic attacks and anxiety out of nowhere. I went from never having anxiety or panic to multiple incidents per week. At the same time, I had new joint pain in my knees, and developed arthritis in my shoulder joint as well as mild lower right quadrant pain. Now, looking back, these were all related to systemic inflammation from the undiagnosed Crohn’s. Now that I’m in remission, it’s all gone away.”

Vern– “OMG EIMs!?! I have so many. Along with Crohn’s, I have developed Gilbert’s Syndrome, short gut, Reynaud’s, rigors, kidney stones, skin problems, anemia, B12 and vitamin D deficiency, joint pain, fissures, fistulas, and hair loss. There’s not much to do when it comes to Gilbert’s, Reynaud’s, rigors, or skin…but with kidney stones I drink a lot of water everyday plus cranberry juice or tea every once in awhile. To manage my anemia, B12 and D, I take easily soluble supplements and B12 shots every month. I take Tylenol to manage my joint pain and rest. The fissures and fistulas have a mind of their own, so not much I can do until it’s taken care of surgically if it gets bad enough. The hair loss is from medication and even when I tried different treatments (home remedies) nothing worked until I was off the medication.”

Pao-“I have been experiencing skin issues for the last year and a half. I have a lesion under my armpit, behind my ear, and a gangrenous epidermis, which is healed. I had a biopsy on the lesion and then a corticosteroid cream healed it. The lesion on my ear won’t go away after months of putting cream on it.”

Kerry-“I deal with intense joint and muscle pain all over my body. My left hand got so swollen at one point that I tried to learn to write with my right hand. This was during my initial diagnosis. Once I started on Remicade it helped and now my joint pain is an indicator of disease activity for me. I log symptoms using the Wave app, I increase my rest, and use diclofenac gel as a topical analgesic. I also see a rheumatologist who has experience treating other IBD patients.”

Rocio: “One of my most debilitating and constant EIMs I’ve had over the last 20+ years is iron-deficiency anemia (IDA). The fatigue levels I live with are beyond frustrating. I know the disease itself can add to my fatigue, but even when at my healthiest, I’m constantly tired. And it’s the kind of tired no on understands. I’ve received countless IV iron infusions for my IDA as I can’t tolerate oral iron due to my previous history of chronic constipation. Fortunately, infusions and I’m able to go months without iron, but there have been times where I’ve received 5 infusions in 1 month – yikes!”

One of Rocio’s other debilitating EIMs is uveitis. She says it is truly one of the most excruciatingly painful manifestations.

“Despite having a high pain tolerance due to chronic illness, uveitis has been one experience I don’t wish upon anyone. And uveitis can progress to glaucoma or vision loss. I did have glaucoma along with my uveitis, but we treated it immediately. Due to recurrent uveitis flares and limited treatments that worked for me, I dealt with uveitis for nearly 3 years. The ophthalmological EIMs that can occur with IBD are not one to take lightly…we need our vision!” 

The earliest EIM Rocio experienced were perianal fistulas – a common type of enterocutaneous fistulas. Unfortunately, she did not receive proper care initially, or her actual IBD diagnosis, for five years. She could have suffered far less had her fistulas been identified as an EIM of Crohn’s disease.

Jennifer-“So many doctors are just unaware or unwilling to see extraintestinal manifestations for what they are. When I was in my late teens and struggling with depression and a ton of stress in my first year of college, I was shamed by a doctor and told (without any testing) that I had herpes. Mind you, I had never been sexually active and never had symptoms before this point. I was in extreme pain and had painful ulcers from my mouth to my anus and genitalia. I left the appointment in tears and wanted to die. It was only years later that I learned of external manifestations of Crohn’s and had a doctor confirm that is what happening all those years earlier.”

Jennifer says she had far too many unpleasant encounters with doctors over the years. From doctors telling her that she was just a bored homemaker (because he felt my complaints were made up) to dentists shaming her in front of her kids (because her mouth health was in his opinion from lack of hygiene vs. effects of Crohn’s disease).

“I was also told by a GI doctor once that if my Crohn’s disease flared while pregnant that I should just have an abortion (for a pregnancy that I very much wanted). This is not a commentary on my stance on abortion, but rather the lack of empathy and respect that this male doctor had towards me, my health, and my choice in that moment.”

Becky- “Erythema nodosum is so scary and I had no idea what was happening to my legs. It was so painful to even walk. I’ve lived with Crohn’s for 30 years. I was admitted to the hospital and given steroids and the doctors drew black Sharpie circles around the red swollen lumps on my legs to see if they grew larger. I was there several days, and the doctor finally figured out what was going on based off my medical history. I was on steroids for awhile and then it finally cleared up.”

Liz- “Extraintestinal manifestations are one of the toughest parts of Crohn’s for me. I have joint aches, eye inflammation that is so painful and disruptive when it flares and chronic severe anemia. Each result in another doctor, another expensive treatment, and time not feeling well. Getting doctors to recognize that they are all connected is difficult as well.”

Anthony has lived with Crohn’s for almost 18 years and EIMs have been a big part of his journey. To him, they’re often a key indicator that a flare up is on the way and unfortunately EIMs have become a regular part of his life for the past decade.

“I get a lot of eye problems (swelling, overly sensitive to light, foggy vision). Once I woke up with my left eye swollen shut. I get a lot of ulcers on my gums, tongue, and in my throat along with rashes that break out on my arms, back, and hands. When I get ulcers, I have difficulty swallowing and need to consciously put effort into swallowing my tablets and often I’m forced to stay away from solid food and meals.”

Anthony goes on to say EIMs bring on depressive episodes for him, along with brain fog, and having issues concentrating and remembering.

“Some days I wake up at 4 or 5 in the morning with a cement block of sadness in my chest, preparing to go about a “normal” day and hoping not to feel the urge to burst out crying. Before I learned how to live with it and got mental therapy, I had to write almost everything down to the point of keeping a note on my phone with bus and train times that would get me to and from work or to various parts of the city because I’d draw a complete blank at times or couldn’t figure out the timetables. I am an engineer and almost had to give up my career because I couldn’t get through a workday.”

Deb– “I’ve had reoccurring Pyoderma Gangrenosum under the flange or baseplate of my ostomy to the point that the skin and tissue diminished and has now caused a very significantly sized peri stomall hernia. We haven’t landed on a treatment of late that has any amount of effect on the inflammation in my colon, so no hernia repair until we get the CRP way down.”

Courtney-“I’ve experienced blepharitis, which is an inflammation of the eyelid that may commonly be confused with pink eye. I’m not fully clear if it is an extraintestinal manifestation or side effect of immune suppression, but after 5 years “in the clear” it’s back. One of the few occasions when I actually “look sick” but feel fine. It’s treated with antibiotic eye drops. I saw a specialist who recommends a special cleanser with tea tree oil.”

Amanda-“During a particularly bad Crohn’s flare, I developed Erythema nodosum. They were painful welts that went up and down both legs. My legs got so swollen and covered with welts that I couldn’t bend them to walk. It was incredibly painful and difficult to need help just getting out of bed. They took awhile to go down and left bruises all over my legs. No one ever mentioned this to me as a possibility, so I didn’t even think to contact my GI, but my local emergency room doctor pointed me in the right direction.”

Krista– “Oof. Alopecia. I lost probably 50-75% of my hair. Now it’s thicker than it’s ever been. Very strange. I also have experienced bursitis and inflammation in my knees, but that’s only flared up once since my IBD diagnosis.”

Melanie-“I was diagnosed with IBD when I was 12 and by 15, I could no longer walk upstairs due to Crohn’s-related arthritis. I went on Remicade which got me walking again but have since been looking for options. Sometimes my Crohn’s and Arthralgia flare together, but in my experience, when I get one under control, I start having issues with the other one which can make disease management a challenge.”

Tish- “I got Uveitis and must always be on the watch for signs of it now. It was misdiagnosed as an eye infection, and I was sent to the eye and ear emergency, but they also misdiagnosed it. Thankfully, I was able to see my ophthalmologist who correctly identified and treated it properly. I also have very dry eyes, so I always use drops to avoid it leading to another Uveitis flare up.”

Eliza– “I’ve dealt with bone density issues related to my ulcerative colitis. I now take a prescribed high dose of D3 and incorporate calcium and other minerals as often as I can into my diet. I have been getting DEXA scans since I was 19!”

Allison-“Skin!! Why are there no IBD-expert dermatologists anywhere?! Why can’t my doctors give me more information about extraintestinal Crohn’s related skin issues? Are we really suggesting bleach baths as the only path for resolution because that feels insane. I’m struggling to find the right resources to help.”

Stacey-“I developed Type 2 diabetes as a result of the inflammation in my pancreas. In addition to diabetes, I also have Rosacea caused by my Crohn’s. We first thought it was an allergic reaction to my Stelara. However, the Rosacea persisted after I stopped Stelara. I saw a Dermatologist who made the diagnosis, and I was then able to get back on it. Like many IBD patients, I also deal with dry eyes, dry mouth, fatigue, and achy joints.

Dana– “I’ve struggled with cutaneous Crohn’s (perianal and elsewhere) and oral Crohn’s, including mouth sores, gum inflammation, and recession. I’ve been prescribed a lot of various topical medications (tacrolimus, taclonex, steroids…just to name a few). It causes a huge gluteal cleft fissure and a lot of damage to my skin in the perianal area in general, which was resolved when I had my proctocolectomy surgery. They had to cut my rectus abdominis muscle to create a flap and place it in the area where they had to cut out all the tissue and skin. Regarding oral Crohn’s, I have steroid ointment that I use as needed for inflammation/sores and I’ve had three gum graft surgeries so far.”

Gabriella-“I have chronic urticaria and dermatographia that was triggered by a rare reaction to the carrier protein used in Humira and Remicade. The reaction hasn’t gone away despite stopping those medications, and despite taking Xyzal and Benadryl daily. I still have extremely high IgE levels. I had had all the major inflammatory skin conditions associated with Crohn’s as well: Erythema nodosum, Pyoderma gangrenosum, and just general infections from “normal skin flora.” I’ve had multiple bad IBD flares where I’ve experienced inflammatory arthritis in all joints from my hips down.”

Ben-“I was diagnosed with gastroduodenal Crohn’s and UC over 30 years ago when I was six. Back then, it started with Erythema nodosum, which led to a colonoscopy, when then ended in my first polyps removed and a diagnosis. I still have issues with it today. I also picked up an obscure kidney cancer about five years back. My oncology and GI teams feel it is related to my Crohn’s/UC somehow, as they don’t see this type of cancer in patients under age 80. Crohn’s also gives me severe anemia.”

Stephane– “After 15 years of partial obstructions, during which I amazingly enough, managed to avoid diagnosis or treatment, it was the obviousness of an extra-intestinal manifestation, my left ankle swelling for no reason, which marked the beginning of the end of my epic denial. Over the summer, my knees swelled too, and walking became painful and slow. By September, I couldn’t walk at night because of the pain in my joints and had to crawl to the bathroom. Finally appearing in the ER, sent by my GP, ankles, and knees puffy and swollen, anemic, malnourished and down 30 pounds, the doc only needed to glance at my chart and test results to give me a diagnosis of Crohn’s.”

Amanda-“Extraintestinal manifestations I’ve dealt with include mouth ulcers, inflammation of my eyes (so red!), joint pain (specifically knees and hands), TMD (no classic clicking or popping, just mass inflammation of the joint and muscles), eczema, anxiety, slow wound healing, fatty liver (non-alcohol, I don’t drink, I am a fitness and nutrition professional so I know my lifestyle is on point), and kidney stones.

Amanda manages this by having exceptional oral hygiene. She brushes and flosses twice a day and uses Orajel mouth wash. She sees an Ophthalmologist to ensure she doesn’t have damage to her eyes and uses Lumify drops to combat the redness. Amanda takes a curcumin supplement (primary bioactive substance in turmeric) for its anti-inflammatory properties, which may also help with joint pain. She uses a bite splint and warm compresses for her TMD and eczema patches on her face, around her ears, eyes, and neck. Amanda has two different prescriptions from her dermatologist to address this: hydrocortisone cream and fluocinolone oil. She also uses Skin Smart antibacterial eczema spray every night. To deal with the remainder—she practices stress reduction when and where she can, continues to focus on her diet and weightlifting and keeps her sugar intake low. She doesn’t drink alcohol and only takes moderate caffeine each day. She’s also hyper focused on micronutrients, specifically fiber, vitamin D, iron, zinc, folate, and B vitamins for overall health and wound healing. Her Avsola infusion for her IBD also is approved to treat Rheumatoid Arthritis so she feels that helps her joints feel significantly better.

Dealing with the mental health challenges of EIMs

Much like IBD, EIMs take a toll on our mental and emotional wellbeing. By seeking mental health support from a psychologist or counselor trained in chronic illness management, you can receive valuable support. Cognitive behavioral therapy (CBT) is particularly effective for managing depression and anxiety associated with IBD. If this article has done anything, I hope it’s shown you that you are not alone and sadly how common these complications are in our community. By simply going on social media and looking up hashtags for your EIM, you will see so many others who are living your reality and can learn a thing or two and feel understood, seen, and heard. There’s so much power that comes from us joining forces as a shoulder to cry on and an ear to listen, even if we’re thousands of miles apart.

By educating yourself and being proactive about what could happen to your body now or in the future, it can help reduce fear and anxiety that is associated with these unexpected and often unruly symptoms.

Additional Resources

Extraintestinal Manifestations of Inflammatory Bowel Disease – PubMed (nih.gov)

Extraintestinal Complications of IBD | Crohn’s & Colitis Foundation (crohnscolitisfoundation.org)

ECCO Guidelines on Extraintestinal Manifestations in Inflammatory Bowel Disease | Journal of Crohn’s and Colitis | Oxford Academic (oup.com)

Extraintestinal Manifestations: IBD Symptoms Outside of the Gut – YouTube

Complications and Extraintestinal Manifestations – IBD Journey – Complications of IBD (crohnsandcolitis.ca)

Ustekinumab and vedolizumab for extraintestinal manifestations in inflammatory bowel disease – a retrospective study – ScienceDirect

Everything You Need to know Before an MRE with IBD

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Nearly 19 years of living with Crohn’s disease and this past week I experienced an MRE (Magnetic Resonance Enterography) scan for the second time. I felt nervous, overwhelmed, and scared leading up to the test. The only other time I had an MRE was in July 2015 while hospitalized with a bowel obstruction. The scan was used to determine whether I needed surgery. I was out of it and have little to no recollection of the experience. The results from my MRE in 2015 informed my GI team back then that I needed 18 inches of my intestine removed. Fast forward to the present day, and after being in deep remission since that surgery, I started to experience a worrisome uptick in symptoms beginning in early March 2024.

It took a month to get in for the MRE, but I knew in my heart-of-hearts I needed to get answers. Leading up to the scan, I crowdsourced questions on Instagram and received an outpouring of support that helped make the experience nearly seamless for me. This week on Lights, Camera, Crohn’s I provide a behind-the scenes look at what it’s like to get an MRE and share firsthand advice from a patient advocate who is truly an “MRE pro”. Due to the amount of information, we’re breaking this bad boy up into two parts.

Walking you through the process

I had to arrive at the medical center at 10:15 am and was advised not to eat or drink four hours prior. I set my alarm for 6 a.m. and drank some water. When it was time to get in the car with my husband to head to my MRE, I took a Zofran to help prevent nausea from drinking all the contrast. After arriving at the imaging center, I was brought back to a room where I answered health questions and changed into a hospital gown and pants. I wore a sports bra without metal but was told I couldn’t wear it due to some synthetic fabrics. Then, I received my IV. The nurse took one look at my arms and grabbed a vein finder machine. For those who don’t know, this looks like a wand and puts a light over your arm to highlight veins so the nurse can pick the best option. My husband held the wand for her as she did my IV and she got it on the first try. That was a big win for me.

Once the IV was in, an MRI tech brought me three bottles of contrast (450 ml) to drink, about 46 ounces of fluids. I was told I had 20 minutes for each bottle and hopefully that I would have all three bottles down in an hour. Worst case the tech said I needed two. She told me not to chug too fast as that might make me nauseous. I took it with a straw and scrolled on my phone to distract myself. The contrast tasted like a super flat Sprite with a dull citrus taste. I’ve heard many people must do this in a public waiting room, I was grateful to be in a private room with my husband.

Due to my claustrophobia and anxiety about the test, my GI prescribed pre-meds for me that I picked up from Walgreens prior to the day of my test. He prescribed me four, 0.25 mg Xanax. I had never taken Xanax and did not know how it would make me feel. I called the Radiology center the day before the scan to ask whether I’d be able to get anything in my IV if I was too anxious, and they said if you’re outpatient you can only take anxiety meds orally.

Fellow IBD patients advised I take one Xanax the night before to have an idea of how it made me feel. I followed that advice and I’m so glad I did! Knowing how I responded took a bit of the stress off my shoulders. I took my first Xanax the moment I started the contrast (1 hour prior to the MRE) and then 30 minutes later I took .50 mg (2 pills) because I didn’t feel calm enough. For me, that was the perfect dosage. I felt completely coherent but chill and relaxed.

When I walked into the MRI room I asked if I could have headphones and listen to music. The techs asked me what kind of music I wanted; I said something upbeat like Taylor Swift. Then, I asked for a washcloth to put over my eyes. The scan took 45 minutes, I didn’t have one moment of fear or anxiety. There are lots of loud banging sounds and you hear the tech’s voice instruct you when to hold your breath and when to breathe. I felt very at ease and at the end started to doze off!

Since I had been NPO all day and it was 1 p.m. I was given a bag of pretzels and a bottled water after I changed back into my clothes. My husband had to leave during the scan to pick up our younger two from preschool, but the timing was perfect, and he swung back and grabbed me, so I did not have to drive after the scan. I felt tired afterwards.

After about 3 hours I started to get excruciating abdominal pain that I was not expecting. I’ve since been told by fellow patients that this is a result of the contrast and that it’s not unusual. I was very uncomfortable for about four hours. I spent a long time in the bathroom and on the couch with the heating pad. By about 9 p.m. I felt back to normal.

Guidance from a Veteran IBD Warrior and MRE Pro

Rocio Castrillon has lived with Crohn’s disease for more than 20 years and underwent countless MRIs specific to her IBD, but also for a multitude of other reasons including—Brain, Face/Sinus, Shoulder, Cervical Spine, Lumbar Spine, Legs, and Knee. She’s a true patient advocate in every sense of the word and someone I admire greatly. Through my recent experience, Rocio helped me immensely and even texted me the morning of my scan on her own accord, throughout my test as I drank the contrast, and after when I was stuck in the bathroom in pain. This is a true example of someone who goes out of their way behind the scenes to be a source of comfort and support for others. We have never met in person (yet!) and there’s this level of friendship between us.

“While MREs are specifically used for IBD patients, due to the contrast ingested, as well as injected, they are more complex than the traditional MRI and tend to be lengthier in time. Due to my anxiety and claustrophobia, I’ve had to utilize coping techniques to undergo MRIs and although they are still challenging, it’s yet another aspect of my IBD I’ve overcome. While these recommendations are primarily for IBD patients, many can be considered for a traditional MRI,” explained Rocio.

Check out Rocio’s step-by-step advice as your gear up for your next MRE:

PLANNING

  • At the time that an MRE is ordered by your gastroenterologist, there are a few considerations to keep in mind. MREs will require prior authorization which may take weeks. Fortunately, this time will allow you to explore options for locations.
    • In most cases, the MRE is ordered to be performed at the imaging facility that is affiliated with your provider, but you do not have to do your MRE there.
    • Oftentimes, there are private imaging centers, not affiliated with an academic institution, which can be more cost-effective.
  • MRI machines are now available in a wider bore design to help reduce anxiety and are recommended for claustrophobic patients. The feeling of a more “open” machine is beneficial. But to locate one, you must call around to determine if your recommended imaging facility has them and/or if you need to seek out an external facility.
  • At the time of your gastroenterologist appt., and if you have anxiety and/or claustrophobia, Rocio strongly suggests requesting a prescription for a sedative used for panic disorders, such as: Ativan, Klonopin or Xanax, which are short-to-intermediate in duration. While you will only need a prescription for one pill, keep in mind that there are many states that now require identification to pick up controlled substances.
    • Please note that if you do take a sedative, you will be required to have a driver to accompany you, as you will not be allowed to drive yourself.
  • Also, at the time of your gastroenterologist appt., and if you have nausea, Rocio strongly suggests requesting a prescription for Zofran to be utilized prophylactically.
  • Once the prior authorization for your MRE is approved, you will be able to schedule. Request an appt. time that works with your personal eating schedule. Because MREs require fasting, as well as contrast ingestion, patients may find it challenging to drink contrast early in the morning. Rocio tends to have more nausea in the mornings, so she prefers to schedule mid-day scans. While this does mean a longer fasting time, it also allows her to drink more contrast.

DAY BEFORE

  • Rocio eats a light diet the day before the MRE to prevent nausea as much as possible. While this is not necessary, she’s found it helps with nausea and vomiting.
  • HYDRATE…before AND after your MRE. While the technicians will explain the need to hydrate following an MRE, hydrating beforehand will allow for easy access to veins for the IV needed to inject the contrast. Hydrating after is crucial to eliminate the contrast from your body.

DAY OF MRE

  • Before leaving home, be sure to remove all jewelry and/or metal from your body. Because an MRI machine uses a magnetic field, you cannot have any metal on you. Women will be asked to remove their undergarments which have metal.
    • Additionally, if you continue masking in medical facilities, your mask will be switched out for a mask without metal that the technician will provide you.
  • An hour prior to the scheduled arrival time, take the prescription Zofran so it has time to kick in before needing to begin the contrast. It will help prevent/reduce the level of nausea and/or vomiting from the contrast.
  • Upon arrival at the imaging facility, you can take the sedative, as this will allow it time to kick in before you begin the imaging. Because there will be a window of time when you need to consume the contrast and when the imaging begins, this typically works well.
  • Contrast! While many academic institutions have shifted to a new contrast, Breeza,  which is lemon-lime flavored, it is not always available to patients. In the past, Rocio has consumed other contrasts. She wholeheartedly agrees that Breeza is certainly better “tasting” than those in the past. But in full transparency, it still is contrast…haha.
  • For all her MREs, Rocio has been provided with three bottles of Breeza. Unfortunately, she cannot consume all of them, and at best, she’s drank a maximum of one bottle. While this is certainly not ideal from an imaging perspective, and is NOT medical advice, she’s been fortunate to have been “allowed” to perform the test with just one contrast bottle. The imaging that has resulted has sufficed for the radiologist to review and for her gastroenterologist to see results.
  • Insider Tip: While this may not be available to all patients at all facilities, Rocio always requests to sit near a bathroom and/or near a trash can if she is in the main waiting area. She says she already has enough anxiety about the MRE, and having people watch her drink contrast tends to make her more anxious. Note this is NOT always readily available, and you will have to adapt to what is available at your facility.

MRE START

  • Upon finishing the contrast, the technician will take you back to the MRI machine where you will be laid flat. If you have anxiety and/or claustrophobia, be sure to alert the technician as they can make you more comfortable in a few ways.
  • Typically, a technician will ask for your music preference as they’re able to control the music that you hear via headphones (provided to you)
    • Rocio prefers relaxation/spa music as it helps to keep her calm.
  • Depending on your facility, there are mirrors that can be placed to allow you to “see” the surroundings and not actually have a view of the MRI tube. It enables patients to have the “illusion” that they can see the outside – either images displayed on the ceiling, or the room where the technician is sitting. This has been a lifesaver for her!
  • During the MRE, the technician will explain everything to the patient through a speaker that you can hear in the machine. You will also be able to respond to the technician and they can always hear you. You will also be provided with an emergency panic button to press, should you need to come out of the machine for any reason.
  • During the MRE, the technician will advise when they are starting the contrast through your IV. You should not feel anything except a quick sensation of nausea that passes immediately. This doesn’t happen to everyone, but it’s common.
  • Rocio says for some patients, like herself, who have been unable to consume all the contrast or who have slow motility, sometimes an injection called Glucagon will be utilized. This improves the quality of the images, but it does cause side effects. You will be instructed to ease into resuming eating and avoid any high protein foods due to slow digestion.
  • At the conclusion of the exam, you will be instructed to hydrate and begin eating slowly. Much like post-colonoscopy, Rocio recommends light meals for a few hours.
  • Due to Rocio’s extreme nausea and vomiting, she typically does not tolerate the contrast after the exam and tends to get sick shortly after. This is NOT the norm, but she  recommends having an emesis bag in your car. As a reminder, if you have taken a sedative, you will not be allowed to drive yourself.

Considerations regarding contrast

While the actual scan experience was more pleasant than I had anticipated, about 3 hours after getting home I started getting terrible stabbing pains in my abdomen and had to run to the bathroom multiple times. At one point my husband came upstairs to check on me because I had been in the bathroom for so long. I was not aware or told that the contrast could cause this type of response. When sharing this on Instagram and after talking with Rocio, I learned how common this is within our community, especially for those who are symptomatic.

An IBD mom whose daughter has Crohn’s shared helpful insight for those who are on special diets or have difficulty tolerating contrast drinks.

Kristen tells me for MRE’s her daughter mixes Miralax in a specific amount of water that the MRI tech recommends, if she had to guess 40-60 oz over an hour. She says this helps prevent stomach cramping and uptick in symptoms. Kristen says some patients on the Specific Carbohydrate Diet (SCD) also drink pineapple juice (Lakewood brand or another organic fresh pressed brand) with Miralax.

“I found through this experience with my daughter that there was not much knowledge about how what you put in your body in the way of contrast, may affect inflamed intestines. Large amounts of sugar alcohol in contrast causes my daughter terrible pains for hours afterwards. Everyone is obviously different, and this disease is unique to each person, but I did a lot of research and we have found that the combo of a biologic plus SCD diet has really helped my daughter maintain remission, for now anyway.”

Kristen’s daughter had bowel resection surgery to remove strictures in her terminal ileum 7 years ago when she was 13 years old. She’s added some food back, but she’s strict with eating only whole foods and great about taking her medication.

Tomorrow on Lights, Camera, Crohn’s hear input and helpful MRE advice from 80 IBD warriors along with how to cope with the mental health aspect of going into a test and not knowing how the results are going to impact your life. As I was working on this article, I found out from my IBD nurse that my MRE results were within normal limits and that there is no evidence of active inflammatory bowel disease. While I’m thrilled and grateful to receive this news, it’s always perplexing when you’re more symptomatic than normal and your labs and scans don’t reflect a reason why.

An innovative app for all chronic illnesses: Meet Corra

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This post is sponsored by Corra. All thoughts and opinions shared are my own.

For as long as Elya Lane can remember she had signs and symptoms of a health condition. It wasn’t until college that she received her official diagnosis of Ehlers Danlos Syndrome and POTS. She says her poor health started to spiral with other comorbidities popping up, the worst of which was chronic UTIs that left her whole body in crippling, burning pain and weak from the antibiotics. Elya’s personal journey with chronic illness inspired her to create the Corra App. This week on Lights, Camera, Crohn’s we learn about how she made her dream a reality and how she hopes to improve peoples’ lives.

The breaking point

“I was constantly plagued with fears of antibiotic resistance, infection complications, or complications from long term antibiotic use. I got to the point where I was so sick that I wrote letters to my kids and my family in case something happened to me. I started tracking all our passwords and making videos for my husband on where our important files were, how different things were stored, all the kids’ data, etc. While I tried to face this potential outcome bravely, I was devastated imagining my kids growing up without a mom,” said Elya.

As she navigated these dark and daunting days, the despair caused her to think about how she could fight back and regain control of her health.

“I started to religiously track my health in journals before transferring to Excel spreadsheets. I was so frustrated by how exhausting and impossible it felt to crunch that much data, so I turned to searching for a symptom track and correlative software to help me. I downloaded and tried every single one I could find – but none met my needs. Some even gave me back faulty data which made me angry. That’s when I decided to create a solution myself,” she explained.

In 2020, after losing access to all her healthcare management tools, and with her health declining rapidly, she decided to create Corra.

The meaning of Corra

There are quite a few chronic illness apps on the market, some that even attempt to offer correlative insights. Corra is short for correlations. Elya wanted to identify correlations in her health so that she could find her triggers and optimize her lifestyle.

Here’s what sets Corra apart from other chronic illness apps on the market:

  • The algorithm was custom built by Corra’s chief data scientist, Simeon Wilson, who has a master’s in quantitative economics from UCLA. “We are not aware of any software that exists that compares to what Corra is currently offering with our correlative algorithm.”
  • Corra was designed by individuals with chronic illness. “Not just me! While the idea and original designs are all mine, we brought on more than 200 beta testers with various chronic illnesses to provide their feedback and help us tailor the app to the needs of the chronic illness community. Even now, we continue to rely on the insights and feedback from the community to enhance and adjust the app. I want Corra to always be designed by and created for our community.”
  • We correlate with nutrition in an accurate and helpful way. “I believe nutrition plays a massive role in our health so one of our key focuses with our algorithm was to be able to correlate seamlessly with nutrition inputs.”
  • Corra does not sell user’s data. “We don’t scrape your data from your device or browsing history, we don’t use your data to sell you anything, we don’t share your data with third parties. Your data is yours alone. As an individual with a chronic illness who often feels more like a commodity than a person, making sure people can receive personalized insights into their health without signing away their privacy is incredibly important to me.”

Corra’s bells and whistles to check out

  • The ability to track health data in one place without having to use five different apps to log information. “My favorite part of Corra is of course the correlations, because getting detailed insights like that about my health is equivalent to having a team of data scientists run extensive tests on my health and provide me reports. It’s life changing to be able to learn about my health overtime and create a custom-built lifestyle that caters to my future.”
  • Discovering positive and negative correlations. “You may receive insight that something has x% chance of increasing or decreasing a symptom. I think being able to get data on the things that are helping is just as important as being able to identify triggers.”
  • The ability to log appointments, download PDFs of your data to share with my doctor, track medications and supplements, track mood and stress levels, etc. “I’m also extremely excited about all the upcoming integrations we have in the works! Soon we will be connected to Fitbit and Apple Health with Garmin, Cronometer, Weather data, and hopefully Oura coming shortly after! Over time we will continue to integrate with as many devices and apps as possible so users can have all their data in one location!”

A promising future

Elya says being able to learn what foods, activities, supplements, and medications help or cause symptoms has enabled her to have a much better understanding of how best to manage her health conditions.

“I’ve been told to go vegan, cut out red meat, don’t eat dairy, sugar, gluten, eat paleo, try a carnivore diet, go vegetarian, and try cutting out leafy greens… what I found with Corra is that I didn’t need to make these drastic nutrition changes, I only needed to cut out some foods in each of those categories. For example, I discovered that I have a high trigger correlation with ground beef. I can eat steak and other red meat, but not ground beef. Similarly, chicken thighs are a trigger for me, but chicken breast is not. Same with gluten, there are some gluten products that are triggering for me, but not all gluten triggers me. Being able to identify exactly which foods to cut out, rather than willy nilly cutting out entire food groups or going on drastic diet changes, has been an absolute game changer.”

Elya has also discovered that cold and flu medications like Mucinex are major triggers for her. This helped her realize why she would get a horrible flare a few days after coming down with a cold or flu.

“Now, I try to manage my colds and flus with other medicine to try to prevent the flare on top of the cold. It’s also important to note that I’m not cured! I have to manage my diet and my activities and my supplements every day. The difference is, I’m no longer throwing shots in the dark, I now have the information I need to manage my condition to the best of my ability.”

Information really is power, and it has given Elya control over her life and reduced her anxiety. Because of Corra, she is now coming up on two years without the need for daily antibiotics. It’s been over 2 years since she visited the emergency room.

“I’ve found that medical providers are far more willing to accept unbiased data from an algorithm than trust my verbal expression of my experience, so in that way Corra becomes my advocate and backs up my statements,” said Elya.

She says her health conditions have caused her to go through depression, isolation, and hopelessness. But her hope for Corra is two-fold.

“First, I believe it can help others identify their triggers and optimize their life so that their conditions can become more manageable, but I also hope that Corra can be a beacon of light for those struggling to see they are not alone. There are so many steps between the start of symptoms and any kind of treatment let alone cure (depending on if your condition is even curable)… and I want to be the one that goes into the trenches and helps people who are suffering the most. So many people in the chronic illness community get forgotten or left with “your test results are normal” when they know there is something wrong with them. I want to create a company that comes alongside them and lifts them up and allows them to have their voices heard.”

Downloading Corra

You can download Corra directly from the App store or the Android playstore. There is a free version as well as premium access. The premium version is $7.99/month or $24.99 if you enroll for a 6-month subscription. Elya is looking for Corra Insiders who are interested in getting free access to the app. By joining the Insiders group, you get a first look at upcoming features. This provides you the opportunity to share feedback on what you do/don’t like or would like to see improved or added in the future. Sign up for the Corra Insiders program here.

Cedars Sinai’s IBD Dietitian Apprenticeship Program is Changing the Future of Nutritional Support for Patients

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It’s the first of its kind program dedicated to training dietitians about IBD-focused nutrition. Cedars Sinai Hospital in Los Angeles, California launched its IBD Dietitian Apprenticeship in July 2023.

Registered IBD dietitian Stacey Collins was the first registered dietitian to be selected, participate, and complete the program. I’ve been amazed at all she does for our community and been excited to dig deep and learn what her key takeaways have been from this experience. As someone whose lived with ulcerative colitis since 2012, when she was 21-year-old, Stacey has a unique perspective and approach.

This week on Lights, Camera, Crohn’s we’ll hear about her firsthand experience and why this Apprenticeship program is just what our community needs. The hope is that registered dietitians who participate in the program can take their knowledge from the experience and be able to plug themselves into an IBD Center to build and strengthen an IBD program.

Going up against lack of education and funding

Stacey tells me there is little to no education that they receive in dietitian training on how to do nutrition specific to gastroenterology, much-less IBD, and she says this Apprenticeship program fills the gaps and then some.

“So much of what I learned was through self-study before this program. But in the Apprenticeship, whether I was part of the team rounding on patients in the hospital, or seeing a newly diagnosed patient in clinic, or sitting on the floor with a 3-year-old patient asking about their Paw Patrol toys, I left every encounter feeling that special kind of discomfort and gratification that comes with growth and learning. This was truly a hands-on learning experience from many different sides of the IBD rubix cube, and I’m so grateful I wasn’t learning it all by reading slides from a PowerPoint and taking a test- who learns that way anyway?!”

Addressing the unmet needs

Once registered dietitians complete the Apprenticeship they can work in an academic center or a private practice that values IBD nutrition and has the financial backing to justify the need for a dietitian.

“There are institutions and people in places of power who are advocates for the profession of IBD RDs, and this work is simply impossible without them. IBD RDs have the potential to support patients throughout their journey as an accessible, consistent member of their multidisciplinary care team. Unfortunately, a lot of this potential is systemically handicapped by the lack of funds: RDs are investments rather than quick money-makers for a clinic without physician advocates and creativity, and we NEED people at institutions to see our value,” said Stacey.

The main programmatic goals are to provide a structured, supervised training program for dietitians to learn a model wherein dietitians work together with physicians and advanced practice providers for the care of adults and children with IBD.

Places do exist (and many are coming) that support this multidisciplinary model of healthcare delivery, but there’s such an unmet need, especially for people who don’t have access to these IBD centers. The hope is for this Apprenticeship program to fill the gaps of that unmet need by signaling to physician advocates at these institutions that a nutrition professional with intense training and experience DOES exist, ESPECIALLY for more complex patients who have IBD.

So much to be done for patients
Registered IBD dietitians can assess people for malnutrition regardless of their stage of IBD, which is common even in remission and linked to poor health outcomes, along with so much more. Stacey says:

  • We can help catch micronutrient deficiencies or insufficiencies that many other care team members might miss, and we can correct and monitor them.
  • We can help patients experiencing food insecurity find ways to nourish themselves within their budget constraints with an eye toward prevention of other comorbidities.
  • We can help nutritionally prepare patients for surgery.
  • We can help patients in need of a medical or therapeutic diet intervention find a way to make it a sustainable intervention for themselves.
  • We can help patients nourish themselves using a whole-person approach, whether they are juggling multiple diagnoses, starting a new job, headed off to college, or too tired to eat: we have tools for helping patients feeling like they can handle it all
  • We can help prevent re-hospitalizations from small bowel obstructions or dehydration by giving patients IBD-specific tools for understanding their body.
  • We can save physicians time by inheriting questions about nutrition and/or supplementation regimens, and we can personalize these for each patient.
  • We can even show GI or IBD Fellows what it’s like to feel spoiled working with an IBD dietitian, and hopefully they’ll advocate to hire one of us wherever they make their final clinical stop

She’s confident IBD dietitians can make nutrition an accessible tool when it so often feels inaccessible with IBD!

Stacey’s top apprenticeship moments that left a lasting impression

Six months is a long time to pick up your life, move to another state temporarily, and fine tune your knowledge and expertise on nutrition and IBD. Here are the key takeaways Stacey says she took away from the experience:

1. Patience with patients is key; everyone is on their own timeline.

“I got to see a doctor celebrate with a patient who finally quit smoking cigarettes for good. After that encounter, he told me that he had been pleading with that patient for 20 years to stop, but he never blamed the patient for having a tough time stopping. He really was empathetic to the fact that they had a lot going on, and he knew they’d get around to it once life allowed. That was really enlightening to see: patients really are doing their best. How can I support them, especially if their timeline looks differently than the expectations that I have?” 

2. It doesn’t have to be all-or-nothing; don’t let perfection be the enemy of good nutrition.

“One day I was with Erin Feldman, RD (Cedar’s Pediatric GI and IBD RD). She was listening to a worried mom talk about how she didn’t want her kid to eat sugary cereal, but that’s ALL they would eat for breakfast: it was the sugary cereal, or it was nothing at all. The child was exercising their choice autonomy and exploring what that looked like around mealtimes, and it was a challenge for the parents. Erin had a rapport established with the family, and I could see that they really trusted her. Plus, Erin is a mom, too, so she speaks the same first language as parents, and she really empathizes with the fact that many IBD parents are blamed for their child’s symptoms or disease. She truly met the parents right where they were at that moment.”

“Instead of focusing on the PERFECT breakfast with beautifully-balanced macronutrients and color that the child certainly would refuse, she said, “What if you just added PLAIN Cheerios and a couple of raspberries to their sugary cereal, that way they’re getting some antioxidants from the berries and a more diverse source of grains into their breakfast?” It was TOO easy, and the parents were like, “YES. We can do that.” and just like that: not a perfect solution, but a practical intervention that would work for where the child is right now.”

And that’s the power in having multiple touchpoints to a dietitian: next time they see the doctor again, they’ll see Erin, too, and they can make more adjustments for how life is being lived around food at that stage, too. So often people have the ambitious idea of going from zero to specific carbohydrate diet (SCD) all in one encounter, and the reality is that often multiple conversations and coordination of resources are needed, and meeting patients where they are looks different for everyone.

3. Nutrition interventions can be hard, and multidisciplinary support really is key. 

“So often as dietitians, it’s easy to get stuck in the weeds of research and to get excited over interventions that have promising outcomes. This happened with a patient needing Exclusive Enteral Nutrition, but ~5-7 days into it, they were uncomfortable, and they really missed food. I was able to have a conversation with the patient alongside their doctor in the same room, who patiently reiterated our rationale behind the intervention and said, “not if it compromises your mental health. Let’s stop it if your brain is telling you we need to stop- we need to respect that. You should be proud that you tried this, and now you know!” And I could tell the patient was so relieved to have reassurance from their doctor that no matter what THEY chose for THEIR body they’d be supported by their doctor and by their dietitian. It really does take a team.”

4. GI Doctors REALLY do not get exposure to solid nutrition in their training

Kelly Issokson, MS, RD (Clinical Nutrition Coordinator, Course Director: DIET Executive program, Apprenticeship Director) arranged for Stacey to lead a learning session with the GI Fellows at Cedars, and in a room full of some of the smartest and most compassionate clinicians.

“They wanted to know all about the different nutrition interventions that we can recommend for patients. It felt like they had been rewarded for being the best of the best all by themselves their whole lives, and now they had an opportunity to learn more about how to collaborate effectively. They were all so enthusiastic.”

Stacey noticed after that session that the GI Fellows felt comfortable texting her while on rounds if she wasn’t there to ask if she’d stop by a patient’s room, or they’d text to ask about B12 supplementation after remembering to screen for a deficiency.

“They really understood the value that IBD RDs bring, and it’s not because I’m a great public speaker (I’m really not); it’s that they had this additional exposure to working with a dietitian with specialized training. This really made everything click for me: doctors don’t always know the right questions to ask patients about our nutrition needs, because most of them haven’t had the education OR the exposure to team members with the expertise to be truly helpful for patients. Working in silos keeps patients isolated, and I’m hopeful that the GI Fellows, when/if they leave Cedars become physician advocates to ensure that their patients have access to an IBD experienced RD.”

Plans for the future

When Stacey completed her Apprenticeship this winter, she did not envision returning full-time to her online private practice. She thought she’d start working at an academic institution, because the purpose of the program is for the dietitian to seamlessly integrate into a multidisciplinary GI care team.

“I am still holding out on hope that one day I could have both (but I’ll never give up my private practice- I love it so much). Truthfully, I’m thrilled to be back with such a passion for teaching patients how to implement some of the skills that I’ve learned into their own life, plugging it into their existing care teams, even if I’m on my own in private practice. I already helped patients through perioperative nutrition before this program, but now I’ve got some RICH resources to help make IBD surgery and nutrition really make sense for patients now in a much clearer way,” Stacey explained.

She’s able to take the research that they did from the perioperative IBD Nutrition program that exists at Cedars and put it into practice with her patients, and it’s a bit of a full-circle moment for her, having lived through IBD surgery with limited support.

“I’m a much better listener than I was before this program, a skill I learned from Kelly Issokson, MS, RD (Clinical Nutrition Coordinator, Course Director: DIET Executive program, Apprenticeship Director). Additionally, I’m more practical in my approaches and meeting patients where they really are, too, a skill I learned from Erin. I’m working on some ways to expand IBD RD accessibility, too. I’m a much more confident advocate on behalf of my patients now, too.”

Advice for the newly diagnosed

If you’re reading this and you or a loved one was recently diagnosed with IBD, ask your GI doctor to hire an IBD Dietitian. Stacey knows this doesn’t exist in most places, and as a patient, she understands how silly it is to constantly be burdening patients with requests. But the field of IBD Nutrition exists because enough patients asked, “What can I eat?” and enough doctors paid attention to it to be documented research. This is the next piece of the puzzle.

If your care team provides a registered dietitian who doesn’t specialize in IBD, that’s not going to cut it. Be assertive in asking your GI office to hire an IBD Dietitian, or invest in training their Dietitian,  if they really want to help their patients.

Stacey advises patients and caregivers to stay off online forums. There’s so much food fear there, and life is bigger than that. Lastly, she advises reaching out for help. Even if Stacey may not be a good fit for you, she’s happy to provide patients with other RDs that she’d enthusiastically see, because an informed decision is a good one.

You can also utilize the directory on the Crohn’s and Colitis Foundation’s website to find some dietitians, and the AGA will have a directory available soon, too. 

Exciting research nuggets

During her Apprenticeship, Stacey chose to do a research project to examine the effects of malnutrition and perioperative nutrition supplementation on surgical outcomes in people getting IBD surgery, whether that be for j-pouch, permanent ostomy, lysis of adhesions, or a resection.

“We had a small sample size (n=25). Regardless, we found that perioperative nutrition supplementation had a statistically significant impact on decreasing the length of stay, meaning that greater adherence to the nutrition supplementation protocol was associated with a shorter time spent in the hospital. Regardless of nutrition status (malnourished or not), everyone seemed to benefit from the nutrition supplementation protocol that we recommended for before and after surgery.”

Stacey is hopeful that more research with an even larger sample size will help inform these results so that this can be a resource more widely available for patients!

The future is bright

“If I dared to dream about what this could look like in the future, the closest possible model in existence is at UCLA under Dr. Niru Bonthala who is the Director for Women’s Health in IBD. Basically, I see the RD’s role evolving to cover every nutritional aspect of IBD with specialized knowledge to support patients in each life circumstance: from surgical prehabilitation to home nutrition support (TPN or EEN) and transitioning back to eating; to the overlap of eating disorders; to fertility and perimenopause; from anywhere along the spectrum of LGBTQIA+ care and/or transgender care; from peds transitioning to adult care, and even adults to aging adults; even athletics and/or eating disorders.”

There’s a rich opportunity within all these Venn-diagrams for a specialist interest and training to exist in IBD Nutrition, and this learning opportunity exists at Cedars.

“I’d also love to see the RD in an outpatient clinic even able to do community outreach: teaching basic cooking skills, procuring menu items for their medical diet (and beyond), and even showing patients and their families what this could look like by partnering with local food banks. Again, this is just me dreaming here in a world that I think should exist for people who have IBD and for RDs who are trained in IBD Nutrition,” said Stacey.

The current IBD Apprentice Yi Min Teo (@herbsandfood) came from both clinical and private practice backgrounds like Stacey. Yi Min will finish her training in July 2024. The program is supported by a grant from Leona M. and Harry B. Helmsley Charitable Trust.

In addition to dietitians wanting more IBD nutrition education, there’s also an Executive Program for MDs/DOs, APPS, and includes both virtual and in-person learning opportunities. You can apply here.