This year World IBD Day is especially meaningful for our family as my sister is spending it in the hospital, recovering from surgery needed after a worsening of her Crohns disease.  This year, more than ever please join us and the Crohn’s & Colitis Foundation to #StepUp4IBD for World IBD Day 2020! During the COVID-19 pandemic, it is even more critical  to support IBD patients. Visit https://www.crohnscolitisfoundation.org/WorldIBDDay and find out how you can help the Crohn's & Colitis Foundation  increase awareness of and familiarity with inflammatory bowel disease (IBD), educate the public about these diseases, and raise funds to support our mission of finding IBD cures and improving patient quality of life.

The Summer 2019 issue of MIT Spectrum reports on the travels of several MIT post-doctoral students who traveled to Malaysia in search of microbiome samples from indigenous villagers of the Batek tribe.  Collecting the samples proved to be challenging, as skeptical villages unaccustomed to toilets, not to mention observers, were unwilling to  put their personal habits on display.  Fortunately an accommodation preserved the villagers' privacy while allowing the researchers to locate stool samples.

Although it sounds at first like an odd undertaking, the fact is that the Batek tribe living in the forest more than 250 miles from the capital in Kuala Lumpur offered a unique microbiome.  As nomadic hunter-gatherers, the Batek tribe's microbiomes are the result of a diet free from processed food, and untouched by the vaccines, antibiotics, and chemicals that affect the microbiomes of those living in the industrialized areas of the globe.  

The successfully harvested samples were taken to MIT's Center for Microbiome Informatics and Therapeutics (CMIT) for further study.  Launched in 2014, CMIT seeks to research the human microbiome to understand better its role in the diagnosis, treatment, and prevention of diseases like Crohn's Disease and Ulcerative Colitis.  


Source:  Halber, Deborah, "Going for the Gut," MIT Spectrum, Summer 2019 Issue, available at:  https://spectrum.mit.edu/summer-2019/going-for-the-gut/

Most everyone knows, or should know, that orally administered antibiotics destroy vast numbers of both the good and harmful bacteria that comprise the microbiome.  Recent research has shown that the microbiome is also vulnerable to more than two hundred other medications that are not specifically antibiotics, like blood pressure medication, antihistimines, and painkillers.

The research, undertaken by the European Melocular Biology Laboratory in Heidelberg, Germany, was made possible by new techniques that permit the culture of anaerobic bacteria that live only in the absence of oxygen -- like those in the microbiome.  

The research also found that the same bacteria that were resistant to antibiotics were also resistant to adverse effects from other medications.  An important revelation of this research is that antibiotic resistance can occur even when antibiotics are not used.  

For Crohn's Disease patients, this is important news.  Ensuring a healthy microbiome is an essential approach to ensuring that a dysbiosis in the microbiome -- a hallmark of a Crohn's Disease inflammation flare -- does not occur.  Knowing that many other medications, in addition to antibiotics, can adversely affect the microbiome is critically important. 

Source:  Maier, Lisa, et al., "Extensive Impact of Non-Antibiotic Drugs on Human Gut Bacteria," Nature 555, 623-628 (19 March 2018).

The whole family joined in on our 2019 Team Challenge Turkey Trot, even our puppy Daisy : ) 
Thank you to everyone who supported this super fun Crohn's & Colitis Foundation fundraiser.  And if you missed the Turkey Trot, please consider donating on #GivingTuesday!  ​https://online.crohnscolitisfoundation.org/site/Donation2?df_id=30829&mfc_pref=T&30829.donation=form1&s_src=HQXF19M3DFXEDLXX&utm_medium=email&utm_campaign=fy19appeals&utm_source=HQXF19M3DFXEDLXX&autologin=true&utm_content=hero

Today, May 19, patients, advocates, friends, families, and health care specialists across the globe are raising awareness of Inflammatory Bowel Disease (IBD) during official World IBD Day.  Join them by getting involved or making a donation to support research, patient support, and advocacy efforts.  Great ways to get involved:

Thanks to your donations of household items, clothing, and furniture we were able to completely FILL a 17-foot truck top to bottom!  We especially appreciate those who helped us load up the truck in the freezing temperatures, grandma for letting us use her garage, and MOM, who never drove a truck that big before but slowly and steadily got the load delivered to Savers anyway.  Thanks everyone!

Keep that New Years Resolution and start the year off with a clean slate by donating old clothes, household items, linens, and furniture to our first ever FUNDrive with Savers.  We'll be collecting items through the month of January and delivering them to Savers to convert your old stuff to funds for our cause.  

​Please email us at [email protected]  for our drop-off location in Concord, Massachusetts (grandma's garage).  

THANK YOU!

One of the most important parts of managing Crohn's symptoms is diet. The diet I have been on for the last few years has played a huge part in my remission. Soon after I was diagnosed I began this diet to help limit inflammation. Many of the foods I eat are anti-inflammatory foods. Foods like yogurt, vegetables, fruit smoothies, and more have all become important to my everyday diet. Eating less gluten and much less sugar has also been a big focus of this diet. A little bit of each I find to be ok, however when I first started out on this diet I almost never had something like fruit juice or french fries/bread. Cutting out excessive amounts of gluten and sugar has made my eating healthier, while also limiting inflammation. Here are some of the foods I eat on a daily basis as part of my diet:
​
Fruit Smoothies: Almost every day in the morning i have a small fruit smoothie, the fruit tastes good and fruits like blueberries are anti-inflammatory.

Oatmeal: Non-sugary oatmeal in the morning is healthy and a good source of fiber. I like to have Oatmeal for breakfast some days with my smoothie.

Wraps/Quesadillas: Often for lunch I'll have a wrap with ham and cheese or a quesadilla with chicken and cheese. When possible I get a gluten free/corn tortilla for these meals, but if I can’t it is not a huge problem. Chicken and cheese are both good sources of protein, and you can incorporate them into lots of meals.

Fruits: Fruits like apples and oranges I eat almost every day. Eating fruits is healthy, and on a diet where I do not eat much sugar, fruits act as a sweet snack I can have without going off the diet. 

Within days of being diagnosed (Ben with moderate-severe Crohns and Isabelle with mild Crohns) we were desperate to find out any and all information about the disease, its causes, and how we could help.  After reading about all the horrific complications of the disease we were even more determined to do something, ANYTHING, to keep our children from going down that path.  Although we trusted our gastroenterologist to prescribe the best medical treatment, we weren't convinced we were getting the best nutritional advice.

At the time the kids were diagnosed, early in 2015, the only definitive nutritional guidance was to avoid foods that by trial and error (aka, the elimination diet) made symptoms worse.  Popcorn was the only food the nutritionists advised to eliminate altogether because the kernels were hard to digest.

We asked whether a gluten-free or dairy-free diet would help and were told that there was no evidence that either would help. We asked about enteral nutrition (formula) and learned that it was effective in controlling flares in some children, but but didn't seem like a viable longterm solution.  In the end we were advised to follow the FODMAP diet to reduce discomfort and alleviate symptoms.

The FODMAP diet provided a long list of foods that cause gas and were to be avoided, but doesn't address the underlying inflammatory problem.  ​

The  Specific Carbohydrate Diet™ seemed the most promising, because it purported to reduce the underlying inflammation by eliminating hard to digest sugars, lactose, and gluten.  The author, biochemist Elaine Gottschall, based the diet on the work of Dr. Haas with the goal of curing her daughter's IBD. 

The IBD Anti-Inflammatory Diet (IBD-AID), designed by a team at University of Massachusetts led by Barbara Olendzki, RD MPH LDN,  is based on the principles of the SCD diet (eliminating hard to digest sugars, lactose, and gluten), with a few key allowances that make the diet easier to follow (e.g. oats and sweet potatoes are allowed).  It also focuses on the texture of the food and provides a clear 3 stage plan to introducing rougher textures.

The early success encouraged us to stick with the diet and gradually we all seemed to shed our addiction to sugars and starches.  Over time everyone felt better and sweet drinks or starch foods we used to enjoy no longer appealed to us.   The kids now regularly drink water and unsweetened tea, snack on fruit or lactose-free cheese and yogurt, and enjoy berry smoothies, oatmeal or banana pancakes for breakfast.  ​

In addition to breaking bad habits and becoming educated about the harms of certain foods, what helps us to stay on a healthy diet is finding creative ways to make eating fun again.  Whenever possible we take the extra time to make our food pretty and fun: whether it be by spiralizing veggies, serving fruit in a fancy crystal parfait glass, or making sushi rolls by hand.  In fact, one of the main reasons we started this blog was to share our ideas to help staying on a healthy diet easier.  (For more ideas see our Recipe section.)  Although  a few years later we aren't  following the IBD-AID Diet as strictly as we did that first year (the kids now eat rice and potatoes occasionally) the diet remains our guiding principle and has kept our entire family on healthy path.

Concurrent with the IBD-AID diet, both children began taking Pentasa and Ben started a low dose of methotrexate, both conservative first-step medications.  ​It's not possible to know whether it was the diet or the medications that helped the kids. More likely it was some combination of both.  Pentasa is a maintenance therapy that isn't expected to bring about remission and methotrexate is a slow acting therapy that  isn't expected to produce results in the first 6 months.  Since we had such good results within a few weeks of taking the medications and going on the diet, we believe the diet helped immensely in the beginning and continues to work together with the medications to maintain remission.