My Journey with Crohn’s Disease

I’m going to talk about sensitivity in talking about illnesses, then I’m going to tell my story. At the bottom of the page, you’ll be able to find resources and studies.

Sensitivity & WHY SHARE?

I have toyed back and forth with how much information to share on my experience pre and post diagnosis, and after writing out a very lengthy and detailed story, I’ve decided to instead keep this short. However, as a believer in the power of narrative medicine for those navigating illnesses, and for the family, friends, colleagues, and acquaintances who are close to those navigating illnesses, I am happy to post should there be an interest in it. Please don’t hesitate to let me know if this is something you would want to or benefit from reading.

Before I start, I want you to know why I’m sharing my story. I’m only doing this because I truly believe it can benefit others. I am grateful for the education I have found and I feel a legitimate responsibility to share my experience. I recognize that the reason I know what I know now, the reason my health is the best it has ever been, is because people courageously stepped out of their comfort zone to approach me and share the knowledge they had been made aware of. It is not easy to say to someone who is sick or not feeling great “Hey, I think there’s something you can do to help”. People are sensitive and are usually worried the other person might feel like they are blaming the unwell for their illness. For example, these wildly popular empathetic and touching cards from Emily McDowell bridge the awkward gap people feel when those they know get sick and they don’t know what to say. They that say things like:

I Didn't Know What To Say Empathy Cards For Serious IllnessFriendship through cancer empathy cards for serious illness

I remember a friend of mine who really struggled to be there for me freshman year when I got sick sent me that link about the cards the following year. She hadn’t known how to act, and to her defense, I didn’t know how to act either. It’s not usual to see someone so young so sick (this is what my doctors and my family kept telling me) and it’s hard to expect so much from others. It meant so much that she was acknowledging it, since her failure to acknowledge anything is what had hurt me so much. The cards allowed her to get through the awkward, uncomfortable spot of “I don’t know how to be there for you” while allowing her to acknowledge me and let me know that I wasn’t forgotten.

However, then there are cards like this:

Empathy Cards for serious illness: Treatment on the InternetEmpathy Cards for Serious Illness

Though they are absolutely well meaning and I appreciate what McDowell is trying to do, it makes me nervous because I remember how easy it is, when I was so sick and felt like there was nothing I can do, to get into that mindset that there actually is nothing I can do. To me, it’s the same exact thing with the popular website The Mighty articles. They give a voice and a platform for people with illnesses and disabilities, and I absolutely appreciate and applaud them for doing that. Those of us who are sick often feel we need to protect ourselves, protect our identity, from those who don’t understand. And I get that. I’ve been there. I am there often. Navigating my illness and its repercussions on my life has been one of the hardest and most difficult and energy consuming challenges I’ve had to deal with in my twenties. Not wanting people to think you’re too sick to have a life, have relationships, go out and do things, but also not wanting everyone you know to turn into critics because you look like you’re having too much fun, “and aren’t you sick? You must be faking it!.” But I think sometimes getting in such a self-defensive mindset closes you off from the empathy that others do try to show, or the possibility of changing things that could truly help (like your lifestyle). Had I been too closed off from anyone suggesting anything to me, I never would have been open to changing my lifestyle in a way that has truly given me my life back.

In this way, it is not easy to approach those who are suffering. There is a sensitivity that is required. And I’m here because I feel that I am credible, having suffered as much as the best of them, and still occasionally suffering, to shed light on choices that can make such a HUGE difference for the quality of life that those with illnesses have. There is power to be found in plant-based eating, and that is why I created this blog. I created this to share my story because so many people have reached out and asked me to talk to their son or their daughter, their nephew or niece, their friend or employee, the coworker of a distant acquaintance, or the son of the hotel owner they stayed at while at a conference. I want to share what I know because I know it can help others if they are willing to make a change and try.

And don’t take my word for it. When I was at the International Plant-based Nutrition Healthcare Conference last year, I heard Dr. Robynne Chutkan speak about the importance of microbes and your gut microbiome- presenting on her experience with Crohn’s patients who were actually improving based on changing their diets. I was tearing up the whole time- I wasn’t crazy. In addition to the countless stories I had read online about people actually getting better with a diet change towards plant-based eating, there was a doctor who was acknowledging the science behind why this was possible.

I want to share my story because I’ve lived this. But I also want to link you to research and the science and the doctors and experts who are advocating for this. I am also going to link a presentation on Deconstructing the Paleo Diet; though many doctors like Dr. Garth Davis in his amazing book, “Proteinaholic“, have talked about this, Dietitian Brenda Davis had an excellent presentation on it at the conference as well. So here we go. Let’s do this.

 

MY STORY:

I got sick on March 1st, 2014. Headaches, back pain, neck pain, dizziness, blurry vision —-> making it very hard to walk, stand up, go to class, etc.

I’ll spare you the details lots of MRIs, countless blood draws, a spinal tap, intensive Multiple Sclerosis testing, many different drugs, many more side effects, and confused doctors. After ruling out Meningitis, Multiple Sclerosis, Lymphoma, Lyme Disease, Stills Disease, Lupus, and the idea that I was crazy and just making all of it up, I was diagnosed with Crohn’s Disease seven months later*. 

[*Packed into these months are some of the most traumatic and isolating experiences that I’ve experienced- being taken advantage of in the emergency room and being laughed at and ignored by my own doctors. Additionally, there were a few different emotional/stress related/more personal things happening in my life/my family that exactly coincided with me getting sick. In an effort to keep this story short, I’m leaving them out, but if there is interest, I will write a full story since I truly believe narrative plays a role.*]

A diagnosis meant relief. I wasn’t crazy. But I had no idea what ‘Crohn’s Disease’ meant; the doctor who diagnosed me told me to ‘web-md’ it instead of answering my questions! Two days later, I was hospitalized with 16 inches of active inflammation in my small intestine, unable to absorb nearly any nutrients. I started on Remicade (a chemotherapy type immunosupressor) and prednisone (a ridiculously powerful steroid), and for two weeks I felt better than I had in months. I thought I was back to normal, Crohn’s seemed like something I’d tell them I have when I went to the doctor, like an allergy to a food one avoids, but not something I’d have to deal with daily. When Dani, my twin sister, who worked with Sam, a woman with Crohn’s Disease, offered to connect me with Sam if I needed support, I quickly said no. I felt great; I was on medication and would be better in no time… why did I need to talk to someone about it???

Just a few weeks later, I started experiencing side effects from the Prednisone and though I was on Remicade, I kept getting sicker and sicker. In addition to the pain, panic attacks, migranes, “moon face“, and general anger around feeling betrayed by my body consumed me. I eventually realized it might be helpful to actually process what I was experiencing, and talk to Sam. At the same time, I signed up for a Film & Buddhism class, which allowed me to look at film texts through eastern teachings. I was already consistently practicing yoga and knew there was much wisdom to learned through Buddhism, and figured I could take what I learned in class and find application in my life.

For the culmination of the class, I explored and processed my feelings around my illness with a short film. Sam shared it on her facebook, and Ivana Bosek, who had just graduated college and raised $20,000 on Kickstarter to shoot a documentary film called ‘The Crohn’s Moans’, saw the film (as they were connected through the online Crohn’s community). She hired me to work with her and I was able to road-trip for five weeks, speaking to patients, doctors, researchers, and therapists, looking for alternative healing therapies for Crohn’s Disease. While on the trip, someone I knew in high school reached out to me after she saw what I was doing and told me about Dr. McDougall and the Starch Solution; I thanked her and told her I would look into it but was very busy on the road. When I got back to USC in the fall, I was doing worse than ever before; however, now I was searching for answers, inquisitive, and yearning for more. I saw a new doctor, who was convinced I needed surgery and would need to drop out of school. When she performed the colonoscopy/endoscopy, she was shocked to find out I was in remission. I was too- I felt awful. Could you still experience Crohn’s symptoms in remission? At this point, I decided that although I was already pescetarian and not eating dairy, I wanted to go full vegan to see if it helps. However, I was completely uneducated on using veganism for health conditions, and so I continued eating processed foods and high fat, nutrient-empty food like oil.

That winter break, I went home very sick, thinking I might not come back to USC. It was that time at home where I remembered what my friend had told me about Dr. McDougall, and realized, my mom had been telling me to eat potatoes the whole time (to which I argued that potatoes made me sick, as to me potatoes were fried with oil and eaten with dairy foods like cheese and sour cream; can you wonder why they made me sick?!). Already vegan, I decided to cut out the processed foods and oils. I started simple: potatoes, beans, salsas, and greens. Within just four or five days, my whole body started healing. The brain fog, the cognitive dissonance, the depression, and the anxiety started to subside. My stomach started feeling better, I wasn’t so tired anymore, and I started gaining back the strength and motivation to do things. I went back to school that spring and went right to Trader Joe’s- stocking my tiny Resident Assistant room with no kitchen with cans of beans, salsa, and potatoes (which I ate for every meal for dinner, as all the vegetables in the dining hall were bathing in oil). Meals were now oatmeal with soy milk for breakfast from, lunch was a huge salad, and dinner I heated up in my microwave and ate by myself in my room. That spring of my junior year was the first semester I felt like I was a student again, and as I had become very in tune with my body, I knew it was because of what I was eating.

While home in New Jersey the following summer doing my yoga teacher training certification, I realized I needed to get off of my Remicade. All of the progress I was seeing with my whole food plant-based diet was being stunted by how sick I would feel every time I received a Remicade infusion. I had switched GI’s looking for someone who was plant-based but had no luck, and so that summer I drove up five hours to Rochester to meet with Dr. Thomas Campbell and beg him to support me in a decision I had already made- to stop my Remicade. He was shocked at how well I was taking care of myself and told me he would work with whatever GI I found to explain plant-based nutrition to them. He told me he would support my decision, and for me, that was enough.

Since then, my health has continued to improve. I’m in remission and I feel good almost all of the time. Now, I’m so in tune with my body that I know when I don’t feel well what’s going on. Maybe I didn’t get enough sleep, drink enough water, or ate too much peanut butter out of the jar (higher fat foods really bother my stomach). People say my diet is extreme, but I think taking medication that suppresses your immune system, doesn’t let you leave the country, and costs around $40,000 an infusion each month is extreme. I use food as my medicine; so I take it seriously. And I also use/do other things that help me stay healthy too:

  • Get enough sleep every night (traveling always makes my stomach sick, with time zones and sleep interrupted)
  • Drink enough water (at the very least, 64 oz a day)
  • Yoga (movement is really important for me physically, and the teachings/breathing are really important for mentally, emotionally, spiritually)
  • Joy, fun, social support —> I love listening to music, going to concerts, spending lots of time laughing with friends, watching movies, playing cards, and reading books. I also see a therapist. It’s important that there is balance in my life.
  • Purpose. I’ve always been so motivated and ambitious, but this area of my life really wilted when I got sick. Now, my motivation is strong. I want to create awareness for others by empowering people with the tools for self-efficacy and community-efficacy in regards to their health. 

Together, these things are allow me to live much more fully and vibrantly than I was able to do during the beginnings of my illness. Food is medicine. The other things I do are more than complementary- they are so important as well. Still, eating whole food plant-based gives me the foundation I need to live; every bite nourishes my body and mind. I can honestly say that getting sick was the best thing that ever happened to me, and that I am immensely grateful for my experience and for those who helped and shared their knowledge with me when I needed it most. It has shaped me into the person I am today, and I am so proud of this person. Though I am constantly working to be a better person, exploring my self and how to improve, I am healthier, more compassionate, and more-driven than I ever was before. Crohn’s Disease led me here, to knowledge that I truly believe has the power to change so many people’s worlds, which is why I am so passionate about sharing all of this.

RESOURCES & STUDIES:

  • Research from The Plantrician Project’s Database
  • Letter Post Crohn’s Disease Research
  • Study on Plant Based Diets (not Crohn’s Disease Specific)
  • Healing Crohn’s Disease & Ulcerative Colitis 
  • McDougall Crohn’s Research
  • Fiber Study Re: Crohn’s Flares
    • “More prospective studies are needed to explore the potential benefits of fiber-containing foods in the diet of individuals with IBD, especially in specific phenotypes. As suggested by the authors of a recent IBD diet review, it is unlikely that a single diet will be found to be sufficient to manage all IBD phenotypes; however, it will be remarkable progress if a diet is found to be sufficient alone for some and adjunctive therapy for others.” – by Suzanne Reist”
      • This is so interesting to me because they clearly don’t see all the plant based people with Crohn’s Disease (assuming most of us are would be anectdotal stories, as I’m not part of any large studies (even tho I did do 23and me for a Crohn’s info). What I mean is, I won’t, and others who have improved their conditions, come up in these long term studies. But there are so many of us who are going into remission and sustaining our good health using plant based diets. When I read a study like this, I’m literally like YES!! I’m so happy they might be seeing fiber is good and its healthy (and i know it works for me). I hope they continue to look forward and try to find the ‘evidence they need’ (it’s out there!!) but I truly felt, when getting off my medication, and right now, that I can’t wait for all of the industries to agree on this information and to push this info out to patients. The science already says it, there are so many people it works for, and with so many competing interests, I’m doubtful that the systemic issues of industries making money off the drug companies will ever denounce their positions and agree this could be another way. My response is and will always be, I have one life to live- I can’t wait for the the money-driven industries to back up what I already know. It takes years and years for these studies to be done and come out and I implore people to take their health into their own hands regarding Crohn’s Disease. We already know meat and dairy are terrible for you; cigarette smoking was proven to be horrible for you decades before doctors stopped smoking or telling their patients not to do so. You have one life to live and you can’t wait for the public to back up the science you already know to be true.
  • This study makes sense: cutting out processed foods will absolutely provide relief for Crohn’s patients (and anyone). However, I don’t believe they took it far enough. Meat simply cannot be part of a healthful diet. It is moving in the right direction though.
  • Trying to live your life while having Crohn’s can be very hard. I didn’t need this study to know how much getting sick took a toll on my innate motivation, ambition, and hard-working nature. This is why relief and healing is SO important; we all deserve to have quality lives, which is why I’m so dedicated to sharing my story and hopefully showing others it is possible.  
  • As a certified yoga teacher and forever student of yoga, I know how much the practice has helped me physically and mentally and contributed to my good health. Here is a study that talks about yoga improving quality of life in patients with UC. 
  • Importance of Health literacy in giving care to patients with Crohn’s Disease
    • For someone like me, who truly had the worst experiences with doctors in the months pre-diagnosis, I’ve found so much hope from the plant based doctor community. So many people who go way beyond their job description of treating patients in their clinic but educating others through so many other means like social media, writing articles and books, speaking to medical schools and at conferences, etc. They’re reaching both the public population AND they’re reaching the people who are going to be doctors. Regardless, delivering information and communicating with patients should be of the utmost importance.
  • This study is great to know that mindfulness and stress reduction works, but I have to be critical of it. Even with studies like this, you’ll never see a person on medication using stress reduction techniques be told by a doctor that it is just the stress reduction that’s working because its totally inconclusive. I’m not saying stress isn’t important- it absolutely 100% is, BUT IT’S OBVIOUS. I believe that drug companies are funding studies like these because they are so much less specific or controversial than changing diet. It’s seen as progressive, and there still leaves a place for the drug in healing.