My struggle with Ulcerative Colitis and the start of a journey to cure myself

About a week ago I shared a personal story on Facebook about my struggle with health and gut issues, the ineffectiveness of medical institutions in helping me, and my plan for how to matters into my own hands and address this head on. The level of interaction and response that my post got absolutely blew me away and showed me that the topic of struggling with and learning how to overcome health issues is something that needs to be discussed much more than it is. To that end, I want to share an expanded version of my Facebook post here, with some more details on my plan for how to heal and cure myself.

This story is something that has long been very difficult for me to talk about, but I hope that by opening up about this, I can help others feel more empowered with issues they might be going through, and also offer myself as a resource for anyone who’s dealing with some hard shit, especially if it’s health or gut related. This will be a bit long, so thanks in advance for reading.

My struggle with Ulcerative Colitis

I have an autoimmune condition called Ulcerative Colitis (UC), which was diagnosed while I was a student at MIT in 2009. UC is an intestinal disease that causes ulcers in the large intestine, which can cause pain/discomfort, severe diarrhea, intestinal bleeding, anemia, and if the disease isn’t controlled well it can often lead to the colon being surgically removed, or even colon cancer. If you ask any doctor, they will tell you that there is no known cause and no known cure for UC — this is an important note, which I’ll come back to later.

Having UC has been difficult to deal with, but I’ve always powered through and tried to not let it affect my life. I treated the disease with the drugs I was prescribed, and while I did a lot of my own research on how to best treat the disease with lifestyle, diet, and alternative medicines, I never really forced the issue. While I’ve never spent a long period of time in full remission, I always felt that I could continue my life as a “normal” person. However, in 2016 that started to change, and by November/December my UC had become the most severe it had ever been. I started having severe stomach pain, internally bleeding, lost 20 pounds because my body couldn’t absorb nutrients, and was so fatigued that I couldn’t get out of bed for days.

My doctors told me that the inflammation in my colon was so severe that they could try one last drug (that only has a 40% success rate and some pretty terrible potential side effects), and if that didn’t work, they’d have to surgically remove my colon. I was scared. Really fucking scared. I had never felt so disabled and crippled in my life.

Plans for a medical leave of absence

During that time, I was very fortunate to have an extremely supportive family, a partner at work (my amazing co-founder, Shireen), and a partner at home (my amazing girlfriend, Libby), that pushed me to take time from work and focus fully on my health. I’m such a workaholic and have such a sense of responsibility to Nima, the company that I co-founded, that without that support I would not have taken the time to get myself healthy. But with that urging, I developed a plan to take a 2 month medical leave from work to fully focus on my health. That medical leave started the first week of January and will continue until March.

When I decided to take a medical leave, I also decided to take matters into my own hands. I turned down the drugs my doctor offered that only treat the symptoms and not the disease. I challenged the assumption that there is no cause and no cure for Ulcerative Colitis — I simply don’t believe that, and I believe that I’m intelligent enough to use available research and data to determine the best way to treat myself. Whenever I was home sick in December, I spent hours doing research: I read every medical journal I could get my hands on, joined several Facebook groups where people shared stories of how they self-treated themselves with success, and started digging into the chemical and biological factors that affect the gut and can lead to inflammation and intestinal disease. That work and associated lifestyle changes, treatment, etc. continues now. The changes I’ve made in just the past few weeks (mainly diet, meditation, exercise, and supplements so far) have already made me feel better and healthier than I have in several years. I still have a long way to go before I’m fully cured, but I honestly believe that I can identify the cause of UC by understanding the root biology and chemistry happening in my body, and make the changes necessary to cure myself.

Frustration with and lack of support from doctors

Throughout all of this, I’ve had very little support from my doctors in treating my condition in the way that I want to be treated. Doctors are largely taught to practice evidence-based medicine. That means they need a lot of data, studies, and clinical trials before they’ll recommend a treatment option. While that may work for well known and understood diseases and makes sense from an avoid-medical-malpractice-lawsuits perspective, there’s a major downside to that approach: There’s a massive amount of information and new research available for a host of health issues, but these studies are often small and don’t have the funding required to run intensive clinical trials, so this new research very rarely makes it into the doctor’s office. The system is highly flawed.

When I first started doing my own research, bringing medical papers to my doctors, and presenting them with new information on alternative treatments I was learning about, I was flatly turned down and just offered new prescription drugs. At first this was very frustrating, but when I try to put myself in their world-view, I understand that that’s simply not the way that they were trained, and they’re doing what they believe to be best. I’ve learned that when it comes to my health, no one cares more than me, so I need to advocate for myself and do what I believe to be best (based on science and clear evidence), even if that’s different than what a doctor would recommend.

My approach

Since I published the first version of this post on Facebook, I’ve had many people reach out to me asking what I’m doing to help heal myself. I plan to write future posts in much more detail on each of the topics below (as well as others), but the high level is this:

Step 1 is research. Being trained as an MIT engineer, I’ve been ingrained with a need to understand the root cause of any problem. At the end of the day, everything is just physics — chemical reactions, the biology of cellular functions, etc., and by understanding the physics of the problem, I can determine how to fix it. Practically speaking, this means that I’m:

• reading any paper I can get my hands on about the chemical reactions that happen in our intestines and what impact that has on inflammation and autoimmunity
• learning about how proteins, carbohydrates, minerals, amino acids, fats, and other nutrients are metabolized in our body and how those metabolites interact with our cells (to understand the dietary impact on my disease)
• understanding better the science behind the interaction between our gut and brain (stress, sleep, mental health, etc.)
• researching the microbiome and how a gut dysbiosis (imbalance) is at the root of almost any inflammatory or autoimmune disease

Step 2 is lifestyle change and added supplements or drugs to reduce inflammation and induce remission. Since the end of December, I’ve started a supplement regime of antioxidants, anti-inflammatories, and gut repairing products. I’ve also been meditating for at least 20 minutes every day, have been exercising approximately 5 days a week, and have added a ton of organic fruits, veggies, and starches to my diet by switching to a plant-based, mostly vegan diet.

Step 3 is restoring a healthy microbiome. By sequencing my gut microbiome (through uBiome), I know that I have a severe dysbiosis of my gut bacteria compared to a healthy individual. I’ve learned that this is standard for UC patients (although no doctor has ever mentioned that to me). To restore my microbiome to a healthy place, I’ll be going to a world-leading clinic in Buenos Aires to get a month of daily Fecal Microbiota Transplants in February (yea, it’s just what it sounds like — I’m getting the poop from a healthy person squirted into my butt). I’ll be writing more about this soon :)

Step 4 is maintenance. I am genetically predisposed for Ulcerative Colitis, but that doesn’t mean that the disease will always present, it just means that it’s more likely to manifest in the presence of certain epigenetic factors (external triggers like diet, antibiotic use, stress, etc.). By maintaining a proper and healthy lifestyle, I fully believe that I’ll be able to stay in “remission” forever, and functionally cure myself.

While I’m dealing with a shitstorm of a disease (literally), I feel extremely grateful and fortunate for the position that I’m now in. I’m so thankful for the support system of family, friends, co-workers, and complete strangers that have been absolutely incredible. I’m so grateful to have the motivation and intelligence to solve this problem on my own. And I’m so fortunate to still have a strong body that is so excited and ready to get fully healthy.

As I travel on this journey, I want to offer myself as a resource for people who are dealing with shit in their lives, especially when it’s related to health. I was in a pretty dark place in Nov/Dec and know first-hand the importance of support and am a huge advocate for empowering yourself and taking matters into your own hands. I also want to share as much as I can with others. My number 1 priority right now is to do the work, research, and lifestyle change necessary to get myself healthy, but I want to then summarize and share the knowledge I’m gaining. Health is the most important thing that we have, and I have the ability to help so many more people than just myself. I may also ask for some help along the way, and I thank everyone who has already helped me or will help me in the future.

Thanks for reading my story. My only ask right now is that if you know anyone who is dealing with health issues, provide them all the support that you can. Encourage them to read and do their own research to validate or invalidate their doctor’s assumptions. And if they have a gut disease (Crohn’s, Colitis, IBS, etc.), point them toward this blog. I’ll be writing a lot more in the future and I hope that my journey can help many others in their own journey to better health.

Follow me on Instagram @scottsundvor for more frequent updates. And if you found my posts helpful, I always appreciate tips in the form of Bitcoin or Ethereum.
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