My Autoimmune Story

I was always a pretty healthy kid with a love for the outdoors. We lived in the eastern half of South Dakota right by a lake. If my brothers and I didn’t have our nose in some book, we were outside playing down by the water, in the fields, or building a fort in the overgrown thickets of trees. The landscape was our playground. Next door lived my cousins, and next to them were our grandparents and great aunt and uncle. Our little family community was pretty tight knit.

We moved to Montana when I was 15. I loved the mountains, enjoying many day hikes with my family on the continental trail. It was in MT where my skill as a musician began to develop under one of the best piano teachers in the state, Mrs. Ruth Rotondi. Unfortunately, it was also during this time that symptoms of Ulcerative Colitis started to appear. Shortly after moving to MT, I began bleeding in my colon, which manifested itself in small amounts of blood whenever I used the bathroom. I was confused, and as a teenager going through many other changes during puberty, I kept it quiet for a long time thinking it would go away.

When I finally told my mom about the bleeding, it had been going on for months. She took me to one Dr. who ran some tests but never got back to us. When we finally called about the tests, she didn’t have anything to say other than, “yeah you need to get that looked at by a specialist.” In the time it took for all of that to happen, I got rapidly worse.

We scheduled an appointment with a colon specialist who tried several medications. Nothing seemed to work as my body got slowly weaker from the blood loss. I had no energy, and no desire to do anything. I slept all the time and had very little appetite. My stomach hurt constantly.

Finally my Dr. called and convinced my parents to admit me to the hospital. I was there for 10 days recovering with IV fluids and a blood transfusion.

After that, I started to feel better, but it was never quite right. I was taking Imuran and Prednisone. Prednisone is not a medication you want to be on for over a month, but every time we tried weaning me off the steroid, I flared up again and had to get back on it. I flared up at least twice every year. In college I usually flared up right around every finals week (something to do with stress maybe? 🙂 ) I loved my major (music composition) and my social life was rich with deep friendships I still maintain today, but my health was never 100%

My senior year of college my boyfriend proposed, and we got married on June 8th, 2013. Miraculously I remained healthy through the entire wedding planning and for the first few months we were married, but then it started to get scary.

My health declined rapidly – again. I was in the middle of switching Dr.s because I had moved to a different town, and I couldn’t make an appointment at the hospital because no one knew where my medical records were. They had apparently lost them. After several months we finally realized that my old Dr. kept sending them to a clinic in a completely different town! I was finally able to make an appointment, but by that time I was so weak I could barely walk across my little apartment without extreme fatigue and pain. Working at my coffee shop job was out of the question – I could barely stand! Let alone make coffee! My new Dr. prescribed the biologic Humira, but that failed. We tried Remicade, but that failed as well. In the world of Ulcerative Colitis and Chron’s, there are not many medications at that level. The only other options were to try another powerful medication (one that had JUST come out and had not been observed for very long) or remove my colon.

Remove my colon! I never had thought that would be my plight! Thankfully, my mom had started eating Paleo a few months before and was trying to convince me to try it with her. “You are my daughter,” she said. “There has to be some genetic link. If I feel this much better eating Paleo then maybe it might help your condition – I know it won’t cure it, but It might help!” I figured it was better than colon surgery, so I did some research of my own and found the Autoimmune Protocol. After reading several blogs of people with Chron’s and Colitis feeling better and almost achieving remission by living this way, I was ready to jump right in. Withing weeks I was feeling better. I was finally able to get off that nasty Prednisone and am now on the smallest amount of medications I have ever been on! As I learned more about my body and how food interacts with my digestive system, I was able to make more informed decisions about what I ate.

While I am forever grateful for the AIP lifestyle for kickstarting my newfound health, there were a few symptoms that AIP couldn’t clear up. I realized I have SIBO – Small Intestinal Bacterical Overgrowth – and I needed to switch up my diet again to reflect this problem. I decided to go with the Specific Carbohydrate Diet, laid out in the book Breaking The Vicious Cycle, by Elaine Gottschall. After 6 months of AIP (and several blog posts about it!), the change was not a decision I made lightly. But Im glad I did. Within two weeks some of the symptoms of SIBO have dissapeared, I am sleeping better at night, and my bathroom trips are a little more pleasant. 🙂

The change from relying on medication to switching up my diet (twice!) has been a long journey. I am still learning how to balance all my new-found kitchen activities with time to compose and work on other musical projects. Having an incredibly supportive network of family and friends has made the transition so much easier, and I don’t know what I would do without my wonderful husband Josh. This journey is full of laughter, sadness, excitement, frustration, new things, and fellowship, and I am so thankful to be on this road!