In December 2019 I went to Advances in IBD, which is a medical meeting that’s focused entirely on Crohn’s disease and ulcerative colitis. The understanding that IBD is more than a “bathroom disease” has finally hit home, and attendees (which include healthcare professionals such as nurses, dietitians, gastroenterologists, GI psychologists, and colorectal surgeons) were educated on a variety of topics. In this episode I provide some of the highlights of the meeting including sessions on diet, medication risks, and pregnancy.
Articles and information discussed in this episode include a discussion of absolute risk, “Don’t Forget that 5-ASAs Also Have Side Effects: Recognizing Complications“, “Diet, the Microbiome, and IBD: ‘Doctor, what should I eat for my IBD?’,” “Inflammatory Bowel Disease in Pregnancy Clinical Care Pathway: A Report From the American Gastroenterological Association IBD Parenthood Project Working Group,” and “Episode 48: Summer of Activism – Getting Kids Involved in Activism.”
[music: IBD Dance Party]
I’m Amber Tresca and this is About IBD. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease and to bring awareness to the patient journey.
In December 2019 I traveled to Orlando for the medical meeting, Advances in Inflammatory Bowel Diseases. I really like going to this meeting because it is so focused on the everyday management of IBD. There’s some new research also, but most of the sessions I attended focused on how to treat patients. This means that gastroenterologists, nurses, and surgeons from all over the world are learning from IBD specialists on how to manage IBD. This year the meeting theme was “Education for the Road Ahead.”
Truly, the meeting did provide so much educational material but I was really struck by another aspect. I attended sessions about fertility, pregnancy, vaccinations, diet, skin conditions, and mental health. For me, this meeting was all about IBD outside of the bathroom.
I wanted to give you some highlights from a few of the sessions. The meeting was really social media friendly and so I posted lots of slides and quotes on my Instagram, which you can find by searching for about_IBD and on my Twitter feed, which is aboutIBD. You can also search for the AIBD2019 hashtag and you’ll see everything that was being posted from the meeting. I encourage you to look at what was shared on social media because there were so many really influential IBD specialists Tweeting and it’s great way to learn.
The first session from which I want to share highlights was from Dr Meena Bewtra. Dr Bewtra is a friend of the pod, she was on Episode 48, Summer of Activism – Getting Kids Involved in Activism, where she shared how she’s teaching her kids to be socially responsible. I was really excited for her presentation, which was titled “Don’t Forget that 5-ASAs Also Have Side Effects: Recognizing Complications.” 5-ASAs are medications that have been used to treat ulcerative colitis for a long time. Dr Bewtra went through some of the more serious potential complications of 5-ASAs. These are rare but they include cardiac inflammation, a type of pneumonia, and kidney inflammation.
The thing that she really wanted to hit on, though, is the idea of what happens when a medication doesn’t work for IBD. The 5-ASA drugs are used a lot to treat IBD. But the question is, are they being used for the right patients at the right time. One of the frustrating things about IBD is that there’s not one medication that will work for every patient. Sometimes the 5-ASA drugs are given first maybe because it’s easier to get them covered by insurance but also because the idea of starting with another type of drug, like a biologic, might seem like it carries more risk.
But this was exactly Dr Bewtra’s point. If a drug has a high probability of not working, that risk also needs to be considered. If the 5-ASA doesn’t work out, it could mean that steroids are prescribed as the next step. And as she said so succinctly during her talk “Steroids are bad.” Steroids could lead to adverse effects, some of which are serious and also potentially permanent. When a drug doesn’t work that also means inflammation is continuing and it’s the inflammation in IBD that goes down the road to causing severe disease, and extra-intestinal complications, and even cancer.
I’m going to quote a tweet from Dr Bewtra: “we tend to focus on the rare but scary sounding risks of therapies and we overlook the real and much larger and serious risks of using ineffective therapies, steroids, and/or continuing active disease.” Medication failure is a risk. Trying a drug that will probably not work because it seems like that drug might be “safer” and I put that word in quotes because that means different things to different people, is a risk in and of itself. During her talk she stressed that when one type of drug isn’t working, it’s time to think about ramping up to something else and healthcare professionals need to be proactive about that.
And one last thing, which is something I think a lot of patients don’t know is that 5-ASA drugs are not approved by the FDA to use for Crohn’s disease. They’re only approved for ulcerative colitis. Several times at AIBD I heard specialists say that 5-ASAs shouldn’t be used for Crohn’s disease and based on the feedback I received on social media, there are a lot of patients with Crohn’s who have been given these drugs.
Another session I attended and which I’d like to share some highlights from was given by Dr James Lewis, Associate Director of the Inflammatory Bowel Disease Program and Professor of Medicine at the University of Pennsylvania in Philadelphia. The presentation was called “Diet, the Microbiome, and IBD: “Doctor, what should I eat for my IBD?”
I don’t need to tell you that this is a hot topic and the answers to questions about diet and IBD are going to change based on who you ask. Years ago they told us that diet didn’t matter except during a flare-up or after surgery. In a flare-up you might be told to eat a low fiber diet for a while. During hospitalizations, you might not be given any food at all, and only given nutrition through an IV. And, of course, after surgery diet is usually ramped up slowly from clear liquids to full liquids to low fiber and then gradually back to more fibrous foods.
We’ve learned more about diet since those days but we still have a long way to go. Studying diet is notoriously difficult, which makes sense when you think about it. People’s diets are really individualized and sticking to a restrictive diet is challenging for anyone. There’s been some research, however, and GI dietitians do a great job of personalizing diet for their patients, but not everyone has access to a dietitian. This leaves a lot of the heavy lifting to gastroenterologists and their staff to provide some guidance.
Dr Lewis went through some of the research that showed that diet may play a role in IBD and how elemental diets have been shown to help in pediatric IBD. For kids who have Crohn’s disease, putting them on an exclusive enteral nutrition diet, which means a liquid diet of special formula, may help them get into remission. This diet is usually given for about 6 weeks but sometimes as long as 12. If that sounds like it might be really tough to do, you’re not wrong, which is why some newer studies looked at a diet that was partially the nutrient drinks but also some solid foods, which is called partial enteral nutrition. These types of diets have so far not been shown to be as helpful for adults but they are still sometimes used.
The upshot is that diet does matter in IBD. Most of us who live with IBD have had someone critique our diet or have even been told that we caused our disease because of a poor diet. This can make talking about diet really charged. I know plenty of people who were vegetarians or vegans or who were really careful about their diet because they were athletes, and they still developed IBD. I also know plenty of healthy people who don’t worry about what they eat at all. So clearly IBD is not all about diet but it’s shaping up that diet should be one consideration in a treatment plan.
But here’s the tricky part: nobody knows exactly what to tell IBD patients to eat. Dr Lewis gave some perspective. He stressed that patients should be given access to personalized guidance about diet whenever possible. He also recommended that a really broad guideline was that patients consider a Mediterranean style diet that includes lots of fresh foods and fruits and vegetables. Dr Lewis went on to say that some of the nutritional guidance that healthcare providers can offer is to increase intake of fruits and vegetables for those with Crohn’s disease and increasing omega 3 fatty acids (which is found in fish and certain other foods like flax and chia seeds, soybeans, and walnuts) for those with ulcerative colitis.
Now, some patients are going to say that they can’t eat that way, that fruits and vegetables cause symptoms. And for those of us who have had surgery, like ostomy surgery or jpouch surgery, we might not be able to tolerate quite as much fiber as those who have never had surgery. To that I would say that getting to a plant-based diet is a goal, the same as remission is a goal. It’s something to work towards with your healthcare team.
In the end, we all need to be paying attention to our nutritional needs. Your care team should be guiding you on diet and also helping make sure that you don’t have any nutritional deficiencies, especially with Crohn’s disease in the small intestine which can affect how you absorb nutrients.
The third session I attended from which I want to offer you some highlights was on the Parenthood Project Consensus Statement. The American Gastroenterological Association, which also goes by the AGA, brought together a group of different specialists which included maternal-fetal medicine, obstetrics, and gastroenterology. These folks got together and discussed all different aspects of pregnancy and breastfeeding in women who have IBD. They came to some conclusions, and that’s what Dr Sunanda Kane, who is a Professor of Medicine at the Mayo Clinic in Minnesota, presented in her talk, which was called “Inflammatory Bowel Disease in Pregnancy Clinical Care Pathway: A Report From the American Gastroenterological Association IBD Parenthood Project Working Group.”
[Sunanda Kane, MD] “We’re going to switch gears a little bit, and we’re going to talk about the recently published Parenthood Project. And this is different than some of the other guidelines that are being presented today and some of the other studies that you’ve seen on reviews of management in pregnancy, because this was a multi-disciplinary working group of gastroenterologists, maternal-fetal medicine specialists, teratologists, lactation specialists, and patient stakeholders who all sat at a table and banged out some of these issues.”
There are a couple of things about pregnancy and IBD that I want to point out. The first is that women were often told that they should not have children because they have IBD. Sometimes women are still told this, or they’re told that they can’t get pregnant, and neither of those things is true. The second thing I want to point out is that voluntary childlessness, which is a decision to never have children, is at 17% among people with IBD. Just for comparison, in the general population, it is 6%. The third point is that IBD is a disease of young people and women are often diagnosed in their childbearing years. When you consider all of these points, some guidelines for physicians on how to manage women with IBD during pregnancy, birth, and lactation is long overdue.
Dr Kane made some clear points during her talk, including that pregnant women should continue receiving biologic medications during pregnancy because these drugs are considered low risk. People with IBD often want to know the risk of passing on the disease to children and for women with Crohn’s disease, the absolute risk of their child developing the disease is 2.7%. In ulcerative colitis, the absolute risk is 1.6%. I will put a link in the show notes to an explanation of absolute risk so that this is framed in the proper context, but these numbers should be really reassuring to people with IBD who want to become parents. It’s unlikely that the disease will be passed on.
What’s important to remember about pregnancy in general is that it’s thought that inflammation is what causes complications or poor outcomes. For that reason, it’s important to achieve remission prior to conception and to keep the disease well-controlled during pregnancy. So we’re back to the recommendation that for the most part, IBD medications should be continued in pregnancy. Women should start with prenatal vitamins and folic acid right away, before getting pregnant, and there doesn’t seem to be any reason not to do that.
While breastfeeding a lot women turn to supplements to bolster their milk supply, especially first-time moms who worry about having enough milk. Fenugreek is a supplement that is often used to increase milk supply, but it’s not recommended for women with IBD. This is because fenugreek is associated with a higher risk of bleeding.
Dr Kane also addressed the idea of the “pump and dump” where women might use a breast pump to express milk and then dump it down the sink rather than give it to the baby. The reason for this would be because the milk might contain something that might harm the baby, like medication. We see this discussed a lot in moms groups, especially the idea of pumping and dumping after a procedure like a colonoscopy. Dr Kane said that this “isn’t worth the inconvenience” and that IBD medications and even sedatives given routinely for colonoscopy are only present in small amounts in breastmilk.
[music: IBD Dance Party]
Please keep in mind that these are my observations from attending Advances in IBD and that you should always connect with your care team about any changes in your diet, your medication, or anything else regarding your care plan.
Hey, super listener. Thank you to Advances in IBD for providing me the opportunity to go to the meeting in Orlando and for making space for all the attendees to share what we learned on social media. I will include links to more in-depth coverage from the meeting in my show notes and you can also go to aboutIBD.com or find me on all social media as about IBD where you’ll get connected with plenty more from the meeting.
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Remember, until next time, I want you to know more about IBD.