I’ve hesitated to share such personal information, but it’s other bloggers that have helped me thus far on my quest for health. Today, with the encouragement of good friends, I am writing the story of my journey towards health with the intention of giving the information to anyone out there that can use it for their own benefit.
It all began my junior year of college…
At the age of 20 I got a bad case of mono that triggered an autoimmune response in my body. After three weeks of nonstop sleeping, followed by many other not-so-pretty side effects and plenty of medical tests, the result was a diagnosis of ulcerative colitis.
I was prescribed the steroid prednisone to get the condition under control, as well as the maintenance drug asacol (a type of anti-inflammation drug labeled NSAID). I had to eat a low-residue diet consisting of white rice and applesauce.
I was also diagnosed with a rare liver disorder called primary sclerosing cholangitis (say that three times fast…otherwise known as PSC). I was prescribed a new drug called ursodiol, which has the potential to help with PSC. There’s not much actual proof as PSC is a very rare disorder without a lot of scientific research or known information.
Back then I traveled hours to meet with a specialists at a top medical university hospital. In my opinion he was arrogant and unkind. He told my then 21-year-old self not to drink alcohol, forget about having children, and I would most likely need a liver transplant within 10 years. Talk about a depressing day.
But I refused to live in self-pity or fear. At the time I was most sad because I had already been accepted to teach Engish in Costa Rica with the Peace Corps and now that wasn’t going to happen. In the meantime I strictly followed the low-residue diet and weaned off steroids. Eventually I started to add in other foods.
Life moved on. Two years later I moved to New York City and met a new specialist. I was still taking asacol. My new doctor was, and is, amazing. He told me it was okay to drink in moderation (I was anyway) and that many people live long lives with PSC. His words got rid of that little nagging voice that made PSC a death sentence.
For the next few years I ate a healthier version of the standard American diet (SAD). Cereal with skim milk for breakfast, veggie sandwiches for lunch and the occasional trip to McDonalds. I started to learn more about nutrition and for health and ethical reasons began experimenting with veganism. In 2011 I gave up meat for lent and didn’t really miss it so I stuck with it, with the exception of fish. In 2012 I was drinking kale smoothies for breakfast and eating loads of veggies, whole grains and the occasional sugary vegan treat. With my doctor’s approval I began to experiment with weaning off asacol. As soon as I reduced my dosage, the colitis symptoms came back (bathroom-related, immediate, and very easy to tell!).
I searched the internet for information on how to get off prescriptions with UC. I went to a five day seminar on digestive health at Kripalu Center for Yoga and Health. I met with a nutritionist. I couldn’t find any answers. I posted about my trip to Kripalu on this blog (here and here), but I didn’t share any personal information.
In the summer of 2014 my most recent colonoscopy (yep, I’ve gotta get one every year now) showed slight inflammation. My doctor said it was nothing to worry about, but I started the search for a diet aimed to solve UC. I found the GAPS diet by Dr. Natasha Campbell-McBride. GAPS stands for Gut and Psychology Syndrome. It is a very radical diet based on previous research that has been used to deal with UC, Crohn’s and other digestive disorders. It involves lots of soup made from homemade bone broth and meats. It also requires eating absolutely no sugar, processed foods, or any carbs at all including bread, gluten free bread, crackers, potatoes, and so on. I talked to M (my hubby who I have spent years convincing to be a pescatarian with me). He wasn’t going to do it with me, but he would be supportive.
With GAPS I have successfully weaned off asacol. I started in June 2014. For anyone considering weaning off medication: check with your doctor, research diet options and take it slow. For example, I was taking six pills per day; three in the morning and three at night. I began the process by taking three in the morning and rotating between three and two at night for at least a week. When that felt fine I went a week with three in the morning and two at night. This is not medical advice. When I was searching for information on how to stop taking these maintenance drugs I couldn’t find anything.
It is now November 2014. I have been dutifully eating bone broth and cooked meats and vegetables for five months. I posted here about my quest to find pasture-raised, humane animal products. In October my routine MRI (done every other year) showed new inflammation in my liver. My liver function is normal (tested through blood work every six months), which determines that the PSC is currently not progressing. I asked my doctor if there was anything I could do about the inflammation and he recommended a vegan diet. Mainstream medical experts don’t usually suggest nutrition, but maybe he did since he knows I am open to anything.
So now I am switching back to a vegan-ish diet with fish (mostly wild salmon). But this time I’m sticking with some of the principals I’ve learned from the GAPS diet. I’m saying no to sugar, processed food, and white carbs.
As for that original specialist…I’ve since traveled to Costa Rica four times, gotten married, had a beautiful healthy baby boy and have not needed a transplant.
You don’t have to believe everything a doctor says!