Johanna Lane is one of our Caleb’s Club bloggers. She has been on the Specific Carbohydrate Diet (Crohn’s Diet) for exactly one year and has been documenting her journey during this time. Needless to say, it’s been an emotional rollercoaster. Reading her journal entries from the first couple of weeks/months on the diet (which is grain, gluten and sugar free), it breaks your heart. Then, following her story and growth, it’s amazing to see how far she’s come. I had the pleasure of going to Johanna’s house and spending some time together. I created this video, which provides a further glimpse into Johanna’s Crohn’s diagnosis and starting the SCD.
Today is September 1st, 2017. I never thought I’d make it this far. I never thought I’d last a whole year on a Crohn’s Diet (SCD). I never thought I’d want to. I never thought I’d need to. Not in the beginning, at least. But when I did, I got pretty close to perfect results:
“There is a complete resolution of the previously described inflammatory changes”.
Sounds like a pretty big step up from last year. I’m happy.
So, why don’t we go through a year of diary entries, memories, feelings and photos on the SCD, month by month? Let’s begin.
9-2-16 journal entry
“…Yesterday was also my first day on SCD, Specific Carbohydrate Diet, which will end on Halloween, so that’s cool. But I still have a while. Hopefully I get into remission. And grow. And other stuff.”
I didn’t think I’d have to be on this diet for more than two months. I don’t know why I thought that. I guess it was easier to believe that I’d only have to be different for 8 weeks. And then end it on Halloween, probably one of the most unhealthy nights of the year. Easy. In September, I would cheat a lot. Just little things here and there. A piece of candy or bread or something that clearly wasn’t allowed. But if I did I’d always tell my mom afterward. I felt guilty.
9-17-16 journal entry
“…if you have to sit at your 20th or so Saturday night spent in a room filled with candy and delicious-looking dessert not being able to eat any of it and being forced into bringing your own coconut flour, “cinnamon bun”, weirdo container muffin, your friends will come up to you and eat the skittles from the candy bar, pretty much in your face, and they won’t really care, because, and only because, they just don’t know what it’s like.”
I didn’t like it. Who would? I didn’t even know if it would work. So I was sad. I cried a lot. But I thought that there would only be two months.
In addition, I’d often have headaches and really strong cravings for sugar. I’m 99% sure I was suffering from some kind of withdrawal from sugar. It sucked.
10-9-16 journal entry
“I’m gonna be perfectly honest when I say that I hate my life and everything about myself right now. You know, I feel like it’s just great timing to be diagnosed with an incurable disease and then start middle school two months later. I’m short, I weigh 68 pounds, and I can’t even eat candy… I feel so lonely and always depressed and never really completely happy… I just want to be normal. I hate myself. I cry almost every day… I feel like nothing will change and I’ll be lonely and small forever… What made me deserve this?”
10-16-16 journal entry
“It’s getting a lot better…”
“No, it’s not getting better, it was for a second but I really, really can’t do this anymore. I can’t. I want someone to tell me I can stop now. Let it stop, please let me stop. Tomorrow is Halloween and I have no idea if I should go or not…”
Halloween was fun. I still knew that I couldn’t eat what I would collect. But I got a quarter for each piece of candy I brought home. Before then, I’d been talking a lot about how I missed candy corn so much, especially around Halloween. My mom said I could eat a bag of candy corn on Halloween. Then changed her mind and said I couldn’t have any. But while my friends and I were trick-or-treating, I ate one piece of candy corn. I told my mom later. She smiled and said it was fine. She said something like, “you really needed that, huh?” And I said yes.
I don’t have any journal entries for this month. But this was the month that I came home one day, and thought, what would make me a little less lonely, sad and frustrated? Telling my story. So I went on to WordPress and set up a blog. It was first called, “Johanna’s guide to Crohn’s,” then, “You, me and SCD,” and finally, “1,2,3, SCD!” Which had a short(ish) URL and a nice ring to it. So I made a logo and created the My Story tab, and posted a Parmesan crisps recipe. I loved the idea of having my own blog, my own website, and a cool new way of expressing myself and feeling better. And, later that month, I found out that I now had perfect results from my blood tests and felt a lot better, too.
3 months in, I was feeling a lot more positive about being on the SCD. More blog posts. Seven of my friends joined me for a week on my diet and had a taste of what it’s like not to taste certain things every day. On Hanukkah, my family made awesome cauliflower latkes and they tasted just like the regular ones I’d been missing.
A new year on a new diet was gonna be hard. But I had come this far, so I might as well continue and stay in remission and everything. And new studies had been coming out, backing up the diet and encouraging me all the more. Keep going!
2-10-17 journal entry
“Hey, I didn’t do anything terrible, did I? Can I just have a normal life? That would be good… No, but you can have Crohn’s disease and not eat ice cream for at least four years. How’s that? Great. Oh, and make sure to be super emotional, break your toe, get the flu, you know, “normal life.” By the way, stay strong! Doing great! I could never do that!… Sugar? Who needs it? It’s not like America runs on it, all your friends eat it, you’re surrounded by it, it’s addictive, and it’s a huge part of a teen’s social life. I’m sure you can live without it.”
I still got sad sometimes. It was still hard. It got easier, but that doesn’t mean the pain was totally gone.
Halfway through a year on SCD.
On March 5th, I wrote “Next Week,” a positive poem that I like to look at when I need a little boost. I’m proud of it. I think it’s pretty inspiring.
Later that month was my Bat Mitzvah, where I had a great party with amazing “Johanna friendly” desserts to share with all of my friends. And that morning, I shared a d’var torah (kind of like a sermon) about my life on the diet so far related to the portion of the Bible we were reading that week.
A successful beginning of spring, I think.
What happened in April? Not much. For spring break, I went to Florida and made a lot of fresh fruit smoothies. Passover was great, because for once I wasn’t the only one not eating bread. I took some pretty great photos, though.
Oh, and I started trying to sell my art!! I gotta keep working on that…
I turned 13 this month! Finally a teenager, but not really a normal one. SCD is a part of my life as I eat my coconut flour cake, but it’s not all of it because I have a great time at school and at my dance performance that night.
It’s the end of school. I had a good year. A great last day. And a great start to my summer, heading straight off to Camp Oasis and having a great five days there. Then, I come home and work on my meal plan for my next summer camp, a month at Camp Ramah in New England. I’m looking forward to an eventful month to come…
An amazing trip to Germany…
A day at home, and then off to Camp again. Here, at Ramah, the chef makes every meal for me personally. And it’s all delicious. And I have a great time there, too.
First, more amazing experiences at camp. Then, tears as I leave for another year. I come back home, spend a week here, and on Monday, I have to get a colonoscopy. They’ll see what’s going on in my guts, and if all is well I don’t have to get another one for years, and I know it’s all working.
Well, here we are. In October of 2016, I wrote that I weighed 68 pounds. Right now, I weigh 86. I feel great. I definitely get frustrated sometimes. What can you expect from a teenage girl who hasn’t eaten sugar for a year? It is hard. But what’s the point of quitting when you got results like mine yesterday?