​A study published in the Gastroenterology journal by a Canadian research team documents that population and ratios of specific gut bacteria are uniquely different in those patients who develop Crohn’s disease as opposed to those who do not, and this gut bacteria differentiation can be identified years before Crohn’s Disease symptoms develop.
 
Dysbiosis involving five key bacteria contributed to subsequent Crohn’s Disease.  The five bacteria are:  “Ruminococcus torques, Blautia, Colidextribacter, an uncultured genus-level group from Oscillospiraceae, and Roseburia.”  (https://pubmed.ncbi.nlm.nih.gov/37263307/)
 
The discovery constitutes two important advances.  First, it provides clinicians with the ability to identify the bacteria populations that make one prone to development of Crohn’s Disease based upon identification of bacteria in one’s microbiome.  Second, with the specific bacteria now identified, clinicians can intervene in advance of symptoms to increase the population of good gut bacteria and decrease the population of the bacteria that instigate Crohn’s Disease.
 
One of the study’s authors, Dr. Kenneth Croitoru, told Crohn’s and Colitis Canada that “These years of effort led us to recently discover that a specific combination of gut bacteria is connected to the future development of Crohn’s disease. We’re starting to see the pattern of bacteria that may be triggering Crohn’s disease, moving us closer to better treatments for those with the disease or even preventing it for those at risk. I’m hopeful that within five years, patients will benefit through evidence-based treatments focused on the gut bacteria or diet modification.”   (https://crohnsandcolitis.ca/News-Events/News-Releases/Canadian-medical-research-breakthrough-Gut-bacteri).

​Traditionally it has been difficult for researches to study bacterial population changes in the small bowel, as they are only reachable during surgery or endoscopy.  Now, researchers led by Andrew Macpherson and Bahtiyar Yilmaz from the Department for Biomedical Research at the University of Bern and the University Clinic for Visceral Surgery and Medicine at the Inselspital have used patients with ileal ostomies as a means to survey the small bowel microbiome in real-time, leading to some interesting discoveries. 
 
Among the findings, ileal bacteria populations are highly variable, largely disappearing when individuals fast while sleeping overnight, only to bloom again when food is consumed at breakfast.  Interestingly, while the number of bacteria fluctuates significantly, the types of bacteria that comprise the microbiome do not.  The changes that occur in the bacterial populations also happen quickly, within hours of consuming a meal.  This differs from the bacteria in the large bowel, whose numbers and proportions remain stable.
 
The head of the study and its senior author, Andrew Macpherson, stated that "Because the system is so flexible, each bacterial species can adapt to a changing environment in the small intestine by changing the proportions of subspecies and thus prevent the species as a whole from dying out." As a result the ileal bacteria normally avoid species extinctions, unless there is an illness, malnutrition, or other environmental factor. 
 
These findings, and the use of small bowel ostomies as a research tool, will enable further research into the interaction of the small intestine microbiome and diseases like Crohn’s, Colitis, and celiac.  
 
(Plasticity of the Adult Human Small Intestinal Stoma Microbiota. Cell Host & Microbe, 2022; DOI: 10.1016/j.chom.2022.10.002).

While I was in the hospital my parents spent hours playing with dolls, but not for fun.  The doll was basically my stunt double, allowing my parents to practice the complicated process of changing my parenteral nutrition infusion, setting the dosage correctly on the pump, and changing the dressings the PICC line insertion in my arm.  The expectation is that once I was discharged, my parents would take over from the nurses and be responsible for this daily process at home. Fortunately for all of us, I was able to start eating solid food again before I went home, but we'll never forget PICC baby.

For more information about PICC lines visit https://www.mayoclinic.org/tests-procedures/picc-line/about/pac-20468748

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/

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.

When I look at pictures of our son at the beach  last summer it is startling.  How could I look at those protruding ribs and thin limbs and not realize our son had Crohn's Disease?  Unfortunately, at the time I didn't even know what Crohn's Disease was.   Although I was always vaguely worried that Ben didn't eat enough or get enough sun, when I saw him without his shirt at the beach I was taken aback.   But somehow, I managed to talk myself out of my concerns, remembering old photos of his Dad -- who was also very thin as a boy but filled out as a teenager.  The paleness was easily explained in my mind too.  Ben didn't  play outside much -- like many boys his age he mostly preferred computer games.   

In addition to not knowing about Crohn's Disease, what we also didn't yet know that Ben was having severe diarrhea.  He was shy about telling us and didn't clue us in until the start of the school year.  We figured he was nervous about starting school and chalked up his symptoms to irritable bowel syndrome (IBS), an anxiety-driven condition that is pretty common in our family.  We tried not to pressure him to eat too much and let him pick many of our menus but when dinner after dinner was merely picked at, mealtimes became tense.  We wondered if he was having some trouble at school he wasn't telling us about or whether he might have an anxiety disorder.  We knew SOMETHING was wrong, but we didn't know what.  

At the same time, our daughter Isabelle was also complaining of stomach pains almost every morning.  She was admittedly excited and nervous about the start of school, so I attributed the complaints to nerves and didn't give it much thought at all.  Occasionally I would give her a TUMS, even if I didn't believe she had a "real" stomachache  I figured they were a good source of calcium.  She also intermittently complained about sores in her mouth.  In my experience, too much sugar, nuts, or citrus will give me mouth sores, so I assumed it was the same for her and tried to cut back on the sugary drinks she loved so much (e.g. chocolate milk at lunch, fruit juice box for snacks).  When the sores got particularly bad so that it hurt to eat, I took Isabelle to a walk-in clinic where the nurse practitioner diagnosed "hoof and mouth disease."  

If I knew then what I know now, its obvious none of this was normal and both kids were in early stages of Crohn's Disease.  They say hindsight is 20/20, so with my 20/20 hindsight I'll share the symptoms that our kids had that we ultimately learned are signs of Crohn's Disease:

• Frequent diarrhea and/or constipation
• Rectal bleeding
• Abdominal cramps and pain
• Loss of appetite
• Weight loss
• Weakness in the limbs and joints
• Fatigue
• Anemia
• Mouth sores/ulcerations in the digestive tract
• Skin rashes

Although every person is different, if any of these symptoms persist in your child, ask your pediatrician about testing for IBD.   When you know something is wrong, trust your instincts and ask specific questions about what could be causing your child's symptoms.  In most cases it will be a passing virus or food sensitivity but if its more, the sooner you get the right treatment the better.  

See also At 12, he had stopped growing. The reason was a surprise, Washington Post, Feb. 6, 2017.

To read more about the signs and symptoms of the disease we recommend the Crohn's and Colitis Foundation of America website, ccfa.org.