On Ulcerative Colitis and Saying YES to Health

Saturday, Jan. 16, 2016 • 6:35 a.m. EST

I haven’t known what to write here over the course of the past few months. I’ve experienced the full range of emotions after being diagnosed with ulcerative colitis. Excitement at knowing what it was, discouragement at understanding that it’s an uphill battle to remedy, frustration at the mindset of modern medicine and it’s prescription-based approach to care…the waves of emotions and feelings come in cycles, just as my gut health comes in flares.

Ultimately, though, I adopted one of the more radical approaches to managing my symptoms by adopting the specific carbohydrate diet. It’s like super paleo, plus homemade (delicious) yogurt, to starve out the bad bacteria in my gut and allow the lining of my colon to heal. While it sounds simple enough—OK, so maybe it doesn’t sound simple—it took me two months of fighting to admit that I should at least give it a try. Taking 40mg daily of prednisone was the dealbreaker. It finally pushed me over the edge…as I watched my relationships suffer from the effects of my dramatic mood swings, my mental health suffer from the extreme feelings I experienced, and my physical health felt… well, just off. Shitty. Shaky. Achy joints after walking for more than 20 minutes. Poor sleep. Oh—and taking at least two more medications to counter balance and offset the effects of taking long-term steroids.

…yeah.

Being diagnosed with any condition certainly changes your outlook. For me, it was a huge wake-up call. I couldn’t see until recently, as I’ve slowly started to heal with the help of my support system and SCD, how sick I was. For YEARS. How underweight I was for the entirety of 2015. That my body was eating itself, or not digesting anything. I was malnourished. I was torturing myself, too, in the ways I was eating and drinking. I had no idea.

Managing a “chronic” diagnosis helped me realign my priorities. In the past three months I’ve gotten better sleep than I likely have in years. I’ve been able to narrow my day-to-day focus down to three things—exercise, health and family. I practice yoga four to six days a week and I started doing kundalini in the morning with Charles. I spend a LOT of time cooking and preparing food. I normally cook three meals a day, as processed food is no longer a part of my diet and eating out is nearly impossible (or just really expensive and not so healthy). I’ve had to let go of things and people and experiences that no longer serve me, or just don’t fit. I’ve said no, or flaked out, on more social engagements than I can count. I go to bed at 9:30 every day, and I don’t make time for much else beyond my relationship, my closest friends, my family, cooking, yoga and my job.

  

If I didn’t take these steps, I probably would have been hospitalized again and losing total control of my gut, mental and physical health.

Writing about those restrictions feels negative, but really those actions and changes in my life have been some of the most positive! I feel lighter. I feel more FREE. I feel like I’m back in control again after years of spiraling out of control. I uncovered some of my deep-seated stressors that are tied to stability, financial well-being and security, and I’m taking steps to mitigate those toxic stressors. Taking control of my diet—which at the time felt like one of the hardest decisions I’ve ever made—allowed me to see that I can do anything. I can make any change.

There is no limit to what I am capable of. Anything is possible.

I feel like I got a chance to start over fresh, with a clean slate. The mental haze and fogginess is lifting. I’m getting really clear about what I want to attract in my life, a habit a dear friend introduced me to through the Desire Map—if you haven’t read about it, then you should. I put a lot of care and attention into my food practices, thanks to the same friend who recommended the UnDiet book, authored by a woman who reversed the symptoms of Crohn’s.

I am on the same path to reversing my disease. That’s why it feels funny to say that I live with chronic disease. Just over one month ago, I was back to shitting 12-15 times a day. I was totally out of control again after a period of being stable and on new medication. I was on super-powerful antibiotics and scared that I would end up in the hospital again. I protested, I kicked, I screamed and I cried about not wanting to start SCD. It would take too much time and be too expensive, I said. I couldn’t live without grains and sugar and starches, I said.

Turns out, you can! And you’ll feel fucking great in about two weeks. Who knew?

Charles read the book for me and presented the science. I bought the expensive groceries and ordered my yogurt maker. I then spent HOURS, DAYS, probably WEEKS researching and obsessing over recipes, reading different perspectives, pouring myself over the internet to learn as much as I could about the diet. I did eventually read the book. My dear family members cooked food I could eat during the holidays, and they tolerated me talking about nothing but what foods I couldn’t eat. I dreamt about being able to eat cookies again.

  

Eat eat eat. Food food food. I had major undoing of deep emotional ties to food. Maybe it’s my Italian heritage. Maybe it’s our culture. Maybe it’s an unexplainable connection to all of those things combined. Either way, I feel like I made it to the other side. I’m learning my boundaries about when I talk about my special diet. I’m OK showing up at activities where I know there are no suitable foods for me to eat. I can even make SCD-friendly cookies.

••••

When I met my new GI doctor in the hospital in October, I demanded to know how I should change or alter my diet. He mumbled something about a book that one of his patient’s had found success with, but that there was only anecdotal evidence that showed a connection between diet and improving symptoms. (Ha—OK, “modern medicine.” You keep tooting your own horn and taking my money for dangerous prescriptions and procedures. I’ll go with the anecdotal evidence.)

In December, I was in his office again the week I started SCD. Even after a few days my gut health was changing quickly. I told him I couldn’t believe that among all of his patients, only ONE was on SCD. One patient! I understand it’s a hard decision to make—it requires a big commitment upfront, but it quickly becomes easier to manage—but really.

If someone told you could you POSSIBLY, MAYBE, JUST BY A CHANCE reverse the symptoms of a disease that keeps you from enjoying and living your life to the fullest—that affects your gut, your brain, your emotions—wouldn’t you do it?

He said that if he was given the option between a major lifestyle change and taking a pill, that sure, he’d want to take a pill. And really, I couldn’t be angry at him for answering that way. But that isn’t me, or it isn’t me right now.

That major lifestyle change showed me I could do ANYTHING. I could overcome ANYTHING. And really, I believe ANYBODY can do that if they tap into their drive and willpower. I don’t think it even matters what the change is, whether it’s one particular dietary shift or another, like whole30 or going vegan or vegetarian (though eating mostly vegetables, limited or no sugar and no processed foods is certainly the best). It just requires that you “practice” and practice discipline. When you have no other choice, those become a place of comfort.

It matters that you SHOW UP. It matters that YOU DECIDE how you’re going to live your life. It matters that you LISTEN to the signs and symptoms that your body is telling you. If you don’t listen when your body is whispering, trust me, IT WILL START YELLING. Because at the end of the day, your health is about all you have. As an adult, no one else is responsible for your health, and no one else will care as much as you do. Stop asking other people—especially doctors—what you should do or looking to them for answers, and take the initiative to DO SOMETHING for yourself. Otherwise you will continue to suffer. You will continue to hurt. You will continue to rely on the prescriptions, procedures and support of a broken “health”care system that doesn’t have YOUR HEALTH and well-being in its mission at all.

I can’t express myself and share my experience without writing those words. I’m not perfect, my health journey isn’t perfect, and just because I made the shift to a healing diet doesn’t exclude me from slipping up and sometimes not showing up for myself or for other people. I just hope that by sharing these words someone, anyone, can see that they, too, have INCREDIBLE willpower, strength, and the ability to make BIG changes in their lives.

Because you do. You can. And I believe in you.

Amen.

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2 thoughts on “On Ulcerative Colitis and Saying YES to Health

  1. What a great post and I am so glad you found inspiration in my book. It can be a tough transition for sure but there is so much power in knowing that we can take of our health. I’m going into my 10th year of remission. Everything is possible.
    And I love that little monster! We have them hiding around our hours. 🙂

    • Thanks for your comment, Meghan! Your book and story are so inspirational and were a crucial part of my healing process! Yes, everything is possible : ) here’s to remission!

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