Ever since I can remember, I’ve eaten an extremely healthy diet. That is, healthy by the USDA’s standards. My friends in middle school would make fun of me for having Triscuits and cheese and a bag of raw veggies for lunch, while they had muffins or pizza.
Sometime during middle school, I decided to be vegetarian. I also meticulously removed as much saturated fat and cholesterol from my diet as possible, and I rarely ate anything that wasn’t whole grain. Now keep in mind, I was never overweight. In fact, I’ve been underweight almost my entire life, and I got even skinnier after these self-imposed dietary changes. But whenever somebody told me that I didn’t have to worry about eating a little ‘unhealthy’ food, I would fiercely reply that skinny people can die of heart disease, too.
At this point, I should have been glowingly healthy. I ate two pieces of whole wheat Ezekiel bread every morning, I always threw away my egg yolks, I didn’t eat meat, and I ate lots of soy protein. I was doing everything right!
After about six months of this, I started having diarrhea. It became a daily occurrence, and the doctor guessed that I might have parasites. Apparently a guess is good enough to justify a course of antibiotics, so I went home with a ten-day supply of Flagyl. And it worked!
Or so we thought. A few months later, the diarrhea came back, and this time, lots of blood came with it. I also started losing weight. The next few months are kind of a blur; I remember having a lot of blood drawn, crying on a bench outside the doctor’s office, having a colonoscopy, and then being handed a huge packet of information with “Ulcerative Colitis” on the front. I also remember being told that I would be on drugs for the rest of my life. Even at 14, I knew that wasn’t okay. Drugs are something you take until you get better, not something you take forever!
I started looking online for different things people had done to cure their ulcerative colitis. Somebody gave me the book Self Healing Colitis and Crohn’s by David Klein, which espouses a raw vegan diet. I started the diet immediately, and followed it to a T. We made fresh juices multiple times per day, and the bulk of my diet was raw fruit. After a couple weeks, I began to look like a skeleton. My diarrhea hadn’t stopped, and I kept getting weaker and weaker, but I refused to give up on the diet. It has to work, I would tell my concerned parents. I’m just detoxing.
At this point, my anxiety reached an all-time high. I’d always had minor anxiety issues, and it was worse after I became vegetarian, but this was far more serious. I couldn’t sleep alone anymore, so I slept in my parents’ room. I always felt shaky, and my head felt…wrong. I couldn’t describe it then, and I can’t describe it now, but I knew I wasn’t okay. But I never thought to blame it on the diet. The diet was going to heal me; I just had to try harder.
One evening, I started shaking uncontrollably, and I couldn’t control my muscles anymore. I couldn’t walk or make my hands work. I didn’t know what was wrong with me, but I remember telling my parents, “I need to go to the hospital.” An ambulance came and I remember them struggling to get an IV in my arm, but I don’t remember anything else. My mom told me later that it took them seven hours to stabilize my condition, which had been caused by severe dehydration and electrolyte imbalance due to inadequate diet and constant diarrhea.
After that incident, I slowly transitioned to a gluten-free, dairy-free, citrus-free, nightshade-free, caffeine-free, sugar-free diet. I ate a lot of quinoa and boring vegetables. Throughout all of this, my diarrhea never went away, unless I was on steroids. The steroids blessed me with a fat face, stretch marks, and lightheadedness, but I have to hand it to them: they worked. All of the other UC meds made me worse instead of better.
Finally, I discovered the Specific Carbohydrate Diet, which is essentially an uptight version of Paleo. I remember being relieved that I didn’t have to deal with grains anymore, because trying to make gluten-free “healthy whole grains” taste good was challenging. Again, I followed the diet to a T, and even though my diarrhea still didn’t go away, I somehow felt better on this diet. And at least it had a little bit of science behind it. (This was my first introduction to the idea of “bad bacteria.”)
Fast-forward two and a half years. I was still on the SCD, and I never once cheated, but my UC was still not in remission. By now, I’d had a bone scan, and I was diagnosed with osteoporosis. Long-term steroid use and malnutrition will do that, I guess. Also, I was 17 and had never had a period. (A blessing in disguise, I must say. Periods suck.) I was still underweight, and I had been anemic for as long as I could remember. I’d had numerous iron infusions, had tried all the drugs, including the big-guns I swore I would never try (like azathioprine and Remicade infusions). I had tried probiotics, enemas (fun times), herbs, acupuncture (even electro-acupuncture), low dose naltrexone (LDN), and various other supplements, and I couldn’t restrict my diet any more than it already was. The only thing holding me together was the steroids, and I clearly couldn’t stay on those forever unless I wanted to lose my skeletal system. (Really though, what’s wrong with being a puddle?) So during the summer of 2011, my doctors, parents and I all agreed that surgery – a complete colectomy – was my only option.
I’m glad I didn’t know how bad the surgery was going to be, because I would never have gone through with it. The pain meds all made me throw up, which is more unpleasant than usual when you’ve just had an organ cut out of your abdomen. I couldn’t sit or stand up without blacking out, thanks to a three-day taper off of 40mg of prednisone. I also had my brand new ileostomy to deal with, which was certainly a learning experience. Not many people can say they’ve touched their small intestine!
On at least four different occasions during the first month after my surgery, my ileostomy would get blocked, and we’d have to make the 45-minute drive to the hospital so the doctors could watch me dry-heave and writhe in pain while they scratched their heads and wondered what to do. After a few occurrences, they finally took me into emergency surgery to see what was going on, and they discovered that my small intestine had repeatedly decided to twist itself into a pretzel. Apparently, this complication crops up in less than 1% of patients. Referring to my symptoms and then the unexpectedness of the actual cause, my surgeon said, “When you see hoofprints on a beach, you expect to see horses, right? Well, you’re a zebra.” Cool.
I somehow made it through the two months with my ileostomy, thanks in large part to a flexible red tube that I could shove up my intestine to keep the intestine-pretzeling at bay. Then I had the ‘take-down’ surgery to attach my small intestine to my new j-pouch, which is basically a wannabe colon that the surgeons create using a section of small intestine. I am so incredibly thankful that this surgery went better than the first, and that I will never again have a bag of poop hanging off of my abdomen. Two months of bag-life was plenty, thank you!
So, that brings us to 2011. At the time of this update, it is now the end of 2016. Post-surgery life has been interesting; easier in many ways than pre-surgery life, and much harder in others. Sometimes (who am I kidding, most of the time) I wish I had one of those success stories where the SCD, or Paleo, or probiotics, or [insert magic protocol here] cured me, and now I’m healthy. But hey, where’s the fun in that??
So, the struggle to get on amicable terms with my small intestine continues. I’ll probably share some of the treatments I try along the way on the blog, if it seems relevant or I have thoughts to share.
I know I’ll be able to post my success story eventually; I’m just not there yet. Till then, I hope someone out there will find value in my mishaps and flounderings.