How Crohn's Disease Drove this Rational Person to Fringedom and Back
How Crohn's Disease Drove this Rational Person to Fringedom and Back
March 17, 2020
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.
I was diagnosed with Crohn’s disease in my mid-20s. It was a classic presentation: 30+ urgent trips to the bathroom daily, fevers and sheet-soaking night sweats, and an achy-fatigue so deep that I could barely make it to the corner coffee shop and back to the couch. This was no stomach bug--it was an incurable disease.
The first line Crohn’s drugs proved only modestly effective so I quickly found myself careening toward the prospect of steroids that could damage my organs, immunosuppressive drugs with even worse side effects, and as a last resort even surgery to remove my bowels. I was horrified and I was desperate. I did the only thing I could think of: I googled it.
Naturally, the Crohn’s patients of the internet had some ideas of their own, mostly involving food, or lack thereof. I tried them all with a fanatical devotion. I ate nothing but lamb and rice for weeks, went without fruits and vegetable, and subsisted on juice, all to no avail. Then I came across the SCD â€“ the Specific Carbohydrate Diet. And suddenly things started to improve. I threw myself in full force.
So for years I cut all complex carbs, sugar, lactose, and soy. I regularly downed peanut butter as a meal on the go. I fashioned pancakes from almond flour. I made my own yogurt--fermented for 24 hours to increase the bacterial concentration--and ate it daily. I envied the merely gluten intolerant and drove waitresses mad. It was every bit as hard is it sounds.
That’s the story of how I found myself--Human Biology degree in hand and ego predicated on feeling like a smart, rational person--religiously adhering to a dietary regime that dominated my life and came replete with the tell-tale signs of crazy pseudo-science. Dismissed by doctors but popular on the internet. Check. No controlled studies, scientific inconsistencies, and fanatical devotion by followers. Check check check. And the kicker: hypothesized mechanism of action involving invisible organisms. Check.
You see, Crohn’s disease is an autoimmune disease where the body essentially attacks itself. The SCD hypothesizes that Crohn’s is actually triggered by the body’s response to the gut microbiome â€“ the unique bacterial ecosystem that inhabits every human’s intestines. The diet attempts to change the makeup of that microbial community. My GI doctor had never heard of the diet and tolerated it, just barely, only because he saw no harm in doing so. He told me in no uncertain terms that there was zero evidence for the diet or its proposed mechanism. What he actually said, word for word, was, “If you think standing on your head in the corner is making you feel better, then stand on your head in the corner.”
As it turns out, this isn’t just a story about a crazy diet that seemed to work against all scientific explanation. In a matter of a few years, the first medical textbooks described Crohn’s Disease as an abnormal immune response to gut bacteria. The term microbiome was coined and mainstream publications began publishing pieces on its incredible power. Venerable institutions are now studying the efficacy of the SCD. My GI doc actually prescribed me probiotics.
Of course, there’s no way to know whether the diet actually changed my microbiome or helped put me into remission. For those of us who consider ourselves scientifically minded, it’s all too easy to believe every acai-berry-buying, Kombucha-chugging, health-seeker is as foolish as an anti-vaxer. The truth is that medical science is advancing all the time and as a desperate patient, trying something that hasn’t been studied and (and probably? hopefully?) isn’t that harmful, is much more than just appealing. It’s actually rational. To my doctor in 2007, believing I could alter my microbiome and keep my Crohn’s Diease at bay was like believing that the sun revolves around the earth. But medicine is not physics. We are making new discoveries every day.
But this also isn’t a story about a crazy diet that seemed to work against all scientific explanation and then turned out to have a scientific explanation. It’s actually a long, roundabout way of saying that I’m truly, deeply, as happy as you might imagine to have today announced a partnership between PicnicHealth, a company I started to help patients manage their medical records, and uBiome, a company dedicated to advancing research on the microbiome. The partnership gives Crohn’s patients a free PicnicHealth Account and a free uBiome kit. It aims, for the first time ever, to advance research on Crohn’s and the gut microbiome by matching medical record data with microbiome data for Crohn’s patients. That the promise of the microbiome has made uBiome among the hottest, most cutting edge early-stage biotech companies in Silicon Valley is just the cherry on top.
These days I’ve fallen off the wagon and I’m running to the bathroom a bit more often than I’d like. Still, I think this announcement confirms that at a minimum, I’m no longer standing on my head in the corner. I have to admit that I like it that way. In other words: I told you so.
Noga is co-founder and CEO of PicnicHealth. She was inspired to create PicnicHealth while struggling to manage her own health data after a diagnosis of Crohn's Disease. Prior to Picnic, Noga co-founded Lumni USA, where she raised and deployed the first US investment fund to help underserved students access low-risk, equity-style student loan products. Noga studied Human Biology and Economics at Stanford. She can regularly be found spacing out while meditating.
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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
Ensure You Have the Appropriate Legal Status
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
Gather and Organize the Medical Records in One Place
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
Review the Medical Records to be an Informed Advocate
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
When you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own. There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
Explore treatments and clinical trials.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
Make time for self-care.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
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However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.
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