My Story

11351662_1534087883559307_20777044_aHi. My name is Johanna Lane, and I was diagnosed with Crohn’s disease in the summer of 2016 at age twelve. I had been having stomach aches and fevers all the time since I was about nine, at which point I had gotten a colonoscopy done. But the doctor who did it said he couldn’t reach the parts of my intestine that looked bad on an MRI, so he couldn’t say for sure that I had Crohn’s disease. He gave me a couple of anti-inflammatory medicines, including one called mesalamine that gave me worse cramps and made me feel really sick. I fought hard until my mom would allow me to stop it and let it go. I thought I felt a lot better when I stopped the meds.

However, every year I would slip to the next lowest curve on the growth chart, going from an average-sized girl to the shortest kid in my grade. At my twelve year birthday check-up, I was seeing a different doctor  who immediately said that something was up and I should see a gastroenterologist again. After all, my stomach aches, lack of energy and appetite, and the fact that I was the shortest girl in my grade had never really gone away, I’d just pushed these issues aside because I didn’t want to cause any trouble. So I went to a new guy, doctor Benjamin Enav, way out somewhere in Virginia, who told me that my symptoms sounded a lot like Crohn’s to him. So I was scheduled for another colonoscopy that July. I had to eat no food and only drink and take laxatives for 24 hours (I’m never having Gatorade again!), then wake up early the next morning and go out to the hospital, where I fell asleep and they apparently stuck a camera down my throat to take a look around. But they gave me really good cookies when I woke up, so that was good. I went home and spent the summer at some day camps. Then they got all of their results back. The pictures that they took of my intestines actually looked pretty good, but when they looked at the biopsies (little pieces of my intestines and stomach taken off and transferred to a lab), it was, in doctor Enav’s words, “a different story.” I had a moderate case of Crohn’s disease, but it was everywhere from my esophagus to my bottom. Woah! What just happened?

So now I have a disease that I’ve never heard of (in fact, I was pretty sure it was pronounced Chrome’s disease for a while. You know, like Google?), and I have to deal with it for the rest of my life, pretty much. So then we decided to discuss some different ways of tackling the wriggling, thrashing, flaring beast that Crohn’s disease really is. Many pills were discussed, all of which would increase the risk of cancer, weaken your immune system or worse. But Dr. Enav encouraged me to try something called the Specific Carbohydrate Diet, or SCD. But wait, there’s more! This whole thing was happening days before I was planning to go to my favorite place in the world, Camp Ramah in New England, for a whole month. And let me just say, any  kind of diet is hard to accomplish at summer camp, especially this diet, which takes away sugar, grains, and lactose, among other things. So I went to camp, and by doing so I postponed the start of the diet. But almost as soon as I came back, it was as if the spell had broken, and suddenly reality slapped me in the face so hard it knocked a tooth out.

I embarked on the SCD journey on September first, 2016. As I started seventh grade in a new school, it was hard to fit in, even with my old friends who were having lots of parties with ice cream, candy and whatever else, where I had to bring my own meal in a lunch box and eat in the corner awkwardly. I have to admit, I was bawling all the time and I wanted to stop and I hated myself for being so short and skinny and whatever. But now I’ve been on the diet for two months. As I’m writing this, it is November first (the day after Halloween, which I survived), and I can say that I’ve grown like maybe almost sorta close to an inch and gained like three pounds since this summer. So today, I’m starting this website, blog if you will, to share some of my experiences, updates, recipes and everything in between. I hope to make a good blog and post something new every week for people to see. Please, if you find this, share it with others!

Advertisements