Until recently, I only kinda-sorta knew what IBD was and had never even heard of Ulcerative Colitis. My awakening came last spring when my little girl suddenly became inexplicably ill. Four doctors in four weeks and numerous tests yielded no answers, so we were referred to a gastroenterologist. After more testing and several procedures, the diagnosis was confirmed...my six-year-old had Ulcerative Colitis.
Ulcerative Colitis is a chronic autoimmune disease that causes inflammation and ulceration of the colon, creating pain and misery for anyone who has it. The disease falls under the umbrella of Inflammatory Bowel Disease (IBD), which affects 1.4 million Americans...700,000 of whom are suffering from Ulcerative Colitis. (The rest are mostly suffering from Crohn's Disease, which is no picnic either.) When the disease is in it's active state, it's called a flare. Flares can be triggered at any time for no apparent reason. Some subside quickly, others can last for years. Triggers and length of time between flares vary from person to person. The goal of treatment is to minimize the symptoms of a flare and to induce and maintain remission. There is no known cure.
I couldn't believe that my daughter's strong, healthy body had turned on itself and was now attacking her from within. She was bleeding, in pain, anemic, losing weight and missing weeks of school. My sweet little girl, who up until that point rarely even had sniffles, was suddenly facing an uncertain future and a lifetime of health problems. How did this happen?
As disbelief gave way to sadness I wondered about her future. Would she always be this sick? How would her disease progress? What did the future hold for her?
I also questioned myself. Everything you think you know about yourself as a parent changes when your child gets sick. Did I do something to cause this? Could I have done something to prevent it? Were there earlier signs? Is this my fault?
The answer to all of my self-doubting questions was, of course, No. I didn't cause this. My daughter didn't cause this. No one knows why it happened. It just did.
My rational brain tried not to imagine the worst or curse myself for things I had no control over, but my heart was not so easy to comfort. There was a definite grieving process taking place and I felt broken.
Anyone who has ever grieved knows that eventually, you come to a point where you stop being sad and start to get mad. Really mad. Like mad enough that you want to punch something and maybe you do. That urge to fight is grief's gift, really. It is the spark that helps you pick up the pieces and keep going. And that fight is what inspired this blog. Cures and solutions don't come from wallowing in self-pity and sadness. They take action. They take persistence. They take a healthy dose of optimism. And in my daughter's case...they take groceries.
Shortly after her diagnosis, my daughter's first round of meds failed and she began to flare again. Her doctor suggested stepping up to a stronger drug, the potential side effects of which were disturbing and in many ways, worse than the disease itself. My husband and I struggled with the decision of whether or not to go ahead with our doctor's plan. It's so much easier to live with choices you make for yourself, but not so when making choices for a child who will have to live with the results of those choices no matter the outcome. Ultimately, we weren't ready to take the next step until we had exhausted every other possible treatment option first. We simply couldn't imagine how we'd be able to live with ourselves if we gave her this drug and it made her sicker, unless it was as a last resort. Fortunately, we have a very open-minded doctor who was willing to work with us to test diet therapy in conjunction with a different (milder) medication to see what we could accomplish.
There are many people who don't believe that diet can cure IBD, but there are many who think it can. There is very little research being done and not much to go on other than testimonials from other IBD sufferers who have had success in managing their disease through diet. After some internet and soul searching and with a heavy dose of optimisim laced with skepticism, we (as a family) decided to embrace an IBD diet called the Specific Carbohydrate Diet. I will go into a lot more detail about this diet later in this blog, but first, I want to reiterate that we are doing this under the care and supervision of my daughter's GI doctor and a registered dietician, with regular testing being done to carefully monitor my daughter's inflammation markers. This is a very serious food fight.
Through this blog, you will get a behind the scenes look at our experiences with this disease, this diet and this lifestyle...meaning you will hear a lot about what goes on in our kitchen. We also love to entertain, eat out, travel and take roadtrips in our camper van, so you'll hear a lot about that too and how we make it all work. The SCD is not an easy diet to follow, but if we can make it work, anyone can.
My hope is that this blog will inspire you and possibly open your eyes to something new. At a minimum, I hope to help spread awareness about IBD, Ulcerative Colitis and the role of diet and lifestyle in managing this disease. We all know that knowledge is power, so the more we know, the more powerful our fight against IBD becomes.
Thank you so much for stopping by and sticking through this very loooong first post. I have lots of delicious things in store for you, so I hope you'll come back often. Your comments are always welcome, so please feel free to introduce yourself and share your stories. If you would like to stay up to date on blog posts, be sure to subscribe to this blog and have posts automatically delivered to your inbox. You can also find me socializing around the web on Facebook, Twitter, Pinterest and Instagram
If you or someone you know has IBD, I hope you'll join me in Fighting Flare. XOXO, Cindi
Photo Credit: Flickr