Imagine having diarrhea 15 times a day, every day. Add some blood to that. While you try to walk across a university campus. Or coach basketball. Or serve on a Navy ship in the middle of the vast ocean. Or learn to add, subtract, and multiply.
This is life with Crohn’s disease or ulcerative colitis, collectively called inflammatory bowel disease (IBD). And when I was a medical student on general surgery, I swear it seems like we were digging around every day in some poor patient’s intestines due to his or her inflammatory bowel disease. Many emerged from surgery with bags to collect their liquid bowel movements.
I feel like I’ve heard it a thousand times. “My doctor says it doesn’t matter what I eat for my Crohn’s disease.” Have you heard that? Do you believe that? That’s 100% false. Research since the 1970s shows that patients can go into remission with special “nutritional shakes.”
Patients are often convinced that food impacts their disease, but they can’t always pinpoint how or which foods. Medical studies weren’t very helpful in the past; they looked at things like fats, amino acids, and vitamin D, finding some correlations, but nothing to hang their hats on. So hard-working doctors just shrugged their shoulders and said, “It doesn’t really matter, dear patient. Just eat.” [Scram. I’ve got 8 patients waiting to see me. I don’t have time to listen to you speculate about whether or not milk gives you diarrhea.]
But fascinatingly, studies have shown for forty years now, plus or minus, that IBD can be controlled with nutrition! Well, more accurately put, researchers and patients controlled IBD with exclusive enteral nutrition. Exclusive enteral nutrition, EEN for short, is basically just a “nutrition” shake kind of like Ensure or PediaSure, only it tastes much worse. The ingredients in the shake have been pre-digested so they can be absorbed completely in the small intestine.
Studies have repeatedly and reproducibly shown great results for IBD patients and EEN, particularly Crohn’s disease. How great? Well how does upward of 100% sound to you for a remission rate? Would you even settle for a 70% rate? Yeah. That good. I’m cherry picking a little; some studies didn’t have such high success rates, but most did. And some studies that didn’t look all that good to begin with looked better after the study results were adjusted for patients who just couldn’t tolerate the special liquids (often quite a few). Also, results were consistently better for pediatric patients [who often heal more quickly and have to be compliant whether they like it or not—and sometimes choose to be compliant because they feel so much better!]. (Kansal, 2013)
But patients and doctors, I guess, weren’t having that. Too yucky. Too restrictive. (Just for interest, I notice that Nestle seems to make many of these nutritional EENs.)
What’s in that shake?
Great minds pontificated about what it was in the EEN drink which could cause these patients to do so well. They played around with the liquid formulas with good success, trying to make them less repulsive and less expensive. Then they pondered, “Well, can we let our patients eat [cake] and take some of this EEN stuff?”
So researchers let patients drink the liquid EEN formula and have free access to table food at the same time. Yum! With free access to table food, despite the nutritional “shake,” the remission rates weren’t as good as when a patient ate only EEN liquid—but they were better than the patients who received no EEN at all. Aha! So it’s starting to look like something in table food perpetuates increased inflammation in inflammatory bowel disease patients. (Triantafillidis, 2015)
Okay. All Mama’s good table food really threw a wrench in the great effects of the EEN shakes. What next?
Well, allowing table food was a step backward, and researchers thought, “We need another twist. What can we do? This is fun.”
So researchers gave patients nutritional “shakes” and they let them eat only certain allowed foods. (NO CAKE this time. Sorry.) Bingo. Success rates held at about 70% of patients showing improvement and or sustained remission. (I know a lot of doctors who made just 70% in class and are successfully practicing. Pass equals MD, baby. Seventy percent is pretty good.) That’s awesome. How happy would you be to be symptom-free and able to eat some real food? (Sigall-Boneh, 2014)
It’s 2017. Can we ditch the EEN altogether and just eat real food?
Now, we have to cap it off. Could patients get off of the disgusting “shakes” altogether? (Good-bye, Nestle…) Well, the Journal of Clinical Gastroenterology is about to publish a study done by a Dr. Suskind (and his team, of course!) from Seattle Children’s Hospital. Ten pediatric patients followed a diet called the Specific Carbohydrate Diet for three months, and 80% of them had symptoms improve significantly and even resolve and lab markers normalize. Eighty-stinking-percent! Let me repeat: eighty percent success. WITH FOOD.
Way to go Dr. Suskind and team. Way to take medicine back to truly patient-centered, do-no-harm care! And most importantly: WAY TO GO PATIENTS AND PARENTS WHO PARTICIPATED IN THIS STUDY! Changing how you eat is hard work, and most people balk, standing in the corner cowering with too much fear to leave their pizza and bread behind. Not you. Not you. (Suskind, 2017)
Meh. Study needs to be bigger.
Now, I showed someone Suskind’s research summary, and she replied, “But there’s only ten patients. I wish it was bigger.”
Sigh. So do I. But it’s what we’ve got. And it’s so promising. I’m ebullient. Diet alone! Eighty percent remission! With real food. No diarrhea! No bleeding! No stomach cramps! Virtually 100% safe. No injections! No risk of white blood cell counts crashing. Why won’t people try this?
Reminds me of a verse I learned from a big book, although I’ve adapted it. “The fiddle plays and you won’t dance. The singer wails a mournful tune, and you will not cry.” We are hard to please. Impossible nearly. What do we want? A magic bullet pill with no side effects?
I must close now. But you will not want to miss my next post about the amazing stay-at-home mom who made it her life mission to show the world that inflammatory bowel disease can be controlled most of the times with real, whole food. And I’ll explain a little about the diet that saved her 8-year-old daughter’s life and which she spent her life studying and evangelizing.
Kansal, S., et al. “Enteral nutrition in Crohn’s disease: an underused therapy.” Gastroenterology research and practice 2013 (2013). https://www.hindawi.com/journals/grp/2013/482108/
Triantafillidis, John K., Costas Vagianos, and Apostolos E. Papalois. “The role of enteral nutrition in patients with inflammatory bowel disease: current aspects.” BioMed research international 2015 (2015). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4352452/
Sigall-Boneh, Rotem, et al. “Partial enteral nutrition with a Crohn’s disease exclusion diet is effective for induction of remission in children and young adults with Crohn’s disease.” Inflammatory bowel diseases 20.8 (2014): 1353-1360. https://www.researchgate.net/publication/263548102_Partial_Enteral_Nutrition_with_a_Crohn’s_Disease_Exclusion_Diet_Is_Effective_for_Induction_of_Remission_in_Children_and_Young_Adults_with_Crohn’s_Disease
Suskind, D. L., Cohen, S. A., Brittnacher, M. J., Wahbeh, G., Lee, D., Shaffer, M. L., … & Giefer, M. (2017). Clinical and Fecal Microbial Changes With Diet Therapy in Active Inflammatory Bowel Disease. Journal of Clinical Gastroenterology. Abstract only: http://journals.lww.com/jcge/Abstract/publishahead/Clinical_and_Fecal_Microbial_Changes_With_Diet.98120.aspx