One year ago today...
I had just turned sixteen. One year ago today, I left my local hospital with a nasogastric tube in my nose and some very heavy news. After months and months of suffering from multiple bathroom trips per day, sporadic urgency, massive weight loss, and loose and bloody stool, I finally was sent to get some blood tests. The labs showed extremely high inflammation levels, including a cal-protectin level of over 2000. I was then sent to get a colonoscopy. The results showed that I had very inflamed patches all throughout my large and small intestine. My doctor recommended a program called Exclusive Enteral Nutrition (EEN) rather than put me on steroids, as EEN was found to be just as successful as steroids as introducing remission. EEN means a liquid formula diet only.
I was left with two choices in the short term in terms of the EEN diet: I could either drink 6 boost nutrition shakes per day, or I could get nutrition via a nasogastric tube that would transfer formula from an IV bag into my stomach. Both options were strict and exclusively liquid diets. I didn't know for certain how long this would be for, so I chose drinking them. After the first few though, I broke down and realized this wouldn't be something I was going to be able to do. They tasted terrible! So I made the tough decision to go to the hospital and get training for the NG tube. I would stay the next 3 days in the hospital were the start to the worst 8 weeks of my life. I was scared to death of the thought that my food would be coming into my nose down to my stomach, and even more so that I would have to learn how to force this 2 foot long tube down my nose all the way to my stomach. I was taught by some nurses to insert it, but the first time, they had to do it, and the tube instantly triggered my gag reflex and I threw up. Once it was down, I went back to my room, and lied awake for the next 3 nights, being kept awake by the monotonous hum of the machine that pumped formula into my body and the nurses that came in every few hours to check my vitals. The day I left, my doctor came in to sit down while I was still in bed. He told me that I had Crohn's disease, a type of inflammatory bowel disease with no cure. When he said the words "no cure", I choked on my breath.
Apparently, the NG tube therapy was a type of treatment for the disease, so the doctor wanted to start me on this rather than go right to a medicine. I asked him how much longer I would have to be fed through a tube. "Typically about 8 weeks." I was too shocked and overwhelmed to cry, or to be angry, or to say anything. After he said those words, I can remember just staring into the wall. His voice seemed to get quieter and quieter as the sound of my own breath and the ringing in my ears were all that I could hear. When the doctor left the room, I looked at my mother, and we both just started to cry. That was the moment I began to process all that had happened. We both were so angry and confused as to why this disease had to happen to me. On top of that, I could not even bear to imagine how hard it would be to not eat solid food for 2 months, or to not be able to eat lunch with my friends at school, or to have to shove that tube down my throat every night. Still I trudged on. This picture blow is on the rooftop of the hospital that very night. We finally were headed home.
The next night, I threw up again because the NG tube hit my gag reflex when I was putting it in. I would vomit for the next few nights until I finally got used to it. AS the weeks went on, it sure was extremely difficult and heartbreaking not to be able to eat, but I got quite good at putting in the tube, and my symptoms were beginning to fade. I was gaining weight too, so the future was looking up for me. But at about the 4 week mark of the therapy, my symptoms reappeared and I began to lose weight again. Still, we finished out the 8 weeks, hoping for a turn around. But nothing improved.
Amidst this process, my mom began to research types of diets I could go on once we stopped the EEN (exclusive enteral nutrition). She found a diet called the specific-carbohydrate diet, or SCD, pioneered by Elaine Gottschall. We bought a lot of cookbooks adhering to the diet, and we were really excited to try it once we heard about its benefits. Once the 8 weeks of failed EEN therapy was over, I was at square one, but that is when I started the diet. I started off on the intro SCD, which is a very tame version of the diet to get you used to food again. After a week or so of this, we began to add in more and more foods that were legal to the diet. In conjunction with Humira (a biologic injection that treats Crohn's), I began to gain weight and my symptoms slowly lessened as the time went on. It was obvious that eliminating refined sugars, all grain, most dairy, and high starch foods contributed to my healing of this gut located disease.
Still, I would often find myself craving food that I could not eat anymore, and it was and still is pretty hard going out with friends and accommodating for the diet. But thanks to my mother's fantastic cooking, I was able to see that the diet doesn't just have to be a form of medicine; you can make it much more enjoyable depending on how you look at it. I found it most helpful to look at what foods I COULD have on the diet versus what foods I could not. When looking at it from that perspective, the options are limitless, and you can create so many delicious foods that also help heal Crohn's disease and other forms of IBD.
Fast forward to today. I am 17 years old, and have gained 40 pounds since last year. My labs have all normalized, and my symptoms rarely show themselves anymore. and If you are going through a rough time with Crohn's disease or UC, I feel you. I was in that position, and sometimes I still am. I shed a lot of tears through those 8 weeks and I know it's so hard. But I promise that if you hang in there and look to the future, it will get better. Because I promise, it WILL get better. Hang in there. Hopefully this site will help you get through it, and hopefully you'll enjoy some of my favorite recipes that have helped make the SCD a great experience.
Because you shouldn't just live along side your Crohn's or survive with it. You should OWN it.