Not Thinking About My Gut

Back in high school, when the specialist took a tissue sample of a never-closing fissure that was, quite literally, a pain in the butt, he determined that I had a condition called Crohn's Disease, a type of inflammatory bowel disease that can affect any part of the gastrointestinal tract. He said that I should be prepared for a future with diarrhea and gut pain. Chronic. Embarrassing. Incurable. At seventeen, I wasn't ready to hear this. So I ignored it as best I could.

Shortly after graduating from college, I began to notice my gut a little more than usual. It started with the feeling that I had to use the bathroom all the time. This was highly inconvenient, since I was employed as a secretary and couldn't leave my station unless I bugged my busy manager to cover the phones. So, I'd wait as long as I could, sitting uncomfortably at my desk, trying to hide the pain. Sometimes I felt a stabbing, heartburn sensation. Other times I felt filled up with gas all the way to my eyeballs. No matter how many times I used the bathroom, I seldom felt relief.

At some point, my high school Crohn's diagnosis crossed my mind, but I tried to avoid it. I decided the problem had to be something simple, like lactose intolerance. After a month of dairy avoidance and an inconclusive food diary, feeling clueless and helpless, I made an appointment with a gastroenterologist at the University of Michigan. He scheduled a colonoscopy and a few other unpleasant procedures. Quickly and swiftly, his judgment was: Crohn's. He said that my intestine was very narrowed with inflammation and that if it had gotten much worse, I may have needed surgery. He put me on two medications: Prednisone, which was a steroid designed to reduce inflammation, and a maintenance drug called Pentasa.

The Prednisone worked well. I had never felt better. But it's side effects made it an unwise long-term medication. Once I stopped taking it, I felt bad again. I stuck with the Pentasa for a while, but it really didn't help much. So, in came the stronger artillery—6MP, an immunosuppressant drug to help the body stop fighting itself. It eased the pain, but the tradeoffs were a weakened immune system; fatigue; sun sensitivity; and unknown long-term side effects, possibly cancer. I stayed on it for a couple of years because it was better than feeling bad all the time. But in 2004, Stephen and I wanted to get pregnant.

6MP, a class D drug, has not been tested enough to know if it's safe for pregnancy or breast feeding. So, I decided to go off the medication before getting pregnant. It turned out to be a good pregnancy, but I started feeling sick six months after Sophia was born. I desperately wanted to continue breast feeding, so I told myself I could make it until Sophia was one year old. Right before her first birthday, I scheduled an emergency appointment with my gastro doctor. He put me back on another round of Prednisone and 6MP, which helped clear things up. I felt great for six months, and then we started thinking about baby #2.

Since I was feeling better, I wanted to go off the 6MP for the second pregnancy. But my gastro doctor advised against it, feeling that the risk of a flare while pregnant was worse than the potential risks of staying on the medicine. He said many women were staying on it and seeing no ill effects on the fetus. I think he could sense my hesitancy because he suggested I try a half dose for a while to see how it felt. When I tried cutting back, I felt sick almost immediately. And in the meantime, I'd gotten a second opinion from a high-risk maternal-fetal medicine OB. He wanted me off the meds. My family doctor also thought they were pretty risky for pregnancy. I wanted to believe them—to pretend I'd be OK if I stopped the medication. But back on the full dose of 6MP, my gut was still giving me trouble. I felt stuck; no options. I was beginning to let go of the denial. Acceptance was sobering.

So, here I was, feeling confused and stressed and hopeless, and now my gut was acting up even while I was on the 6MP. My wise mother suggested I call her friend who has been living with Crohn's for many years and has five kids. This lovely, helpful woman told me about a diet she'd been following called The Specific Carbohydrate Diet (SCD) based on the book, "Breaking The Vicious Cycle" by Elaine Gottschall. After hearing this woman's story about her horrible dealings with the disease and intestinal surgery, and how she turned her life around with the SCD, I knew I had to give it a try.

A few web searches later, I'd found hundreds of glowing reviews written by people with health issues like mine. And there were many Internet support groups and forums for the SCD and even a website based on the book. I immediately bought the book and a yogurt maker (a key for the diet), and I started eating very differently than ever before. In the past, I'd always had at least one grain with every meal, and this diet didn't allow for ANY grains. Instead, I could eat: vegetables (except for potatoes and sweet potatoes); meat; fruit; fermented, low-lactose/low-sugar dairy; nuts and seeds; some dried beans; honey; butter; and plant oils. No soy, grains, sugar, starches or many other additives that are found in pre-packaged, processed foods.

The idea behind the SCD is that the gut is easily able to digest mono-saccharides, so people with intestinal issues should stick with simple carbs. Stop bombarding the gut with extra sugars and starches, and healing will be able to take place. There is the potential to re-introduce forbidden foods after having been symptom free for a year or so. I've been strictly following this plan since February 5, 2007, and I'm feeling really, amazingly great! It was hard at first—I felt like I was mourning the death of a loved one (bread! cookies! pasta! chocolate!!!!)—and I had a hard time re-thinking all of my tried-and-true recipes. Plus, I believe my body was in detox mode for the first week, since I felt really tired and spacy, but I did notice less bloating and gas right away. And now I'm not running to the bathroom more than once a day, which is lovely! The other great thing—no, the BEST thing—is that I'm totally off my medication and feeling good for the first time in a long time. There are more and more days where I don't think about my gut at all, where I feel like a person instead of a disease. This is new for me, and it's wonderful.

I have faith that I will be able to enjoy a medication-free, healthy pregnancy if I stay on the SCD. It's very empowering to find that I can control and possibly cure my illness simply by being careful about what I put into my body. For that, I can give up pasta; I can even give up chocolate!

P.S. Thanks, Mom, for being my SCD buddy.