By Krista Johnson, as told to Kate Sullivan
My husband calls them my “foo-foo remedies.” He says, “You’re always trying that weird stuff.”
To which I reply, “But it can’t kill you, so why not try it?”
I was 34 when I was diagnosed with Crohn’s (I’m 49 now), and it took them a good year or so to come to that conclusion. I live outside of Orlando, and in 2007, I’d been working at Discovery Cove, which is part of SeaWorld, where I swam with the dolphins. But my daughter had just turned 3, and I decided to take a job with the school system to better accommodate her schedule. That’s when my stomach problems began.
My doctors chalked it up to, “Well, you’re an athlete, always exercising, and now you’re sitting in an office – your brain doesn’t know how to handle it. You’re not releasing your stress.”
At the time, I thought it made sense, but 8 months later, I started bleeding, had a colonoscopy and received the diagnosis. I didn’t know a thing about Crohn’s. I was taking the pills they told me to take, but it was getting worse, and I didn’t realize that this wasn’t normal because I was still a rookie at this point – one big hot mess. Finally, I threw up bile. And my husband was like, “I think it’s time to go to the hospital.”
After this experience, I found my current doctor, who is phenomenal. He immediately put me on Remicade infusions, and for the next 7 years, I was also taking about 12 pills a day. It kept me functioning. But by 2014, I was passing them; I wasn’t absorbing anything. It got to the point where I couldn’t even swallow them, so I stopped altogether. This is what brought out the seeker in me.
Luckily, my insurance would cover 24 sessions of acupuncture. I thought: It can’t hurt, right? I started going to acupuncture twice a week. (My acupuncturist also worked at the Moffitt Cancer Center in Tampa.) At the same time, I began an elimination diet and Chinese herbs, also recommended by my acupuncturist.
The gluten-free diet helped my inflammation a lot, so did not eating fried food or anything with lactose. I took extra vitamin C, some zinc, and vitamin D. Now I take 10,000 milligrams of vitamin D daily – a lot of Crohn’s patients are deficient. The Chinese herbs helped with my mouth sores because my Crohn’s was producing too much stomach acid. I tried cupping [an alternative therapy that involves the application of glass or silicone cups to the back] for a little while, but I wasn’t a big fan as I found it uncomfortable.
The one other time I was in the hospital was in 2016. I had a stoma, followed by an ileostomy, and they gave me steroids. I put on 65 pounds and wound up getting medication-induced Cushing’s, [a disorder that can cause weight gain and weakness].
As I was recovering, I started to do chair yoga with the senior citizens at the National Training Center in Clermont, FL. I felt like I had the physical fitness of an 82-year-old, so why not take classes with actual 82-year-olds? More recently, I’ve done Peloton yoga, and because I still have a belly after my surgeries, prenatal yoga. I tried meditation, but my brain is just going 6,000 miles an hour. I’ve also used different essential oils on my neck when I’m having an upset stomach.
A lot of people won’t eat when they’re having a flare. Sure, don’t eat a chicken dinner with green beans and gravy, but not eating is the worst thing you can do. So I went the organic baby food route and now I swear by it! When I suggest that to people they laugh at me, but baby foods are for sensitive stomachs and they’re nutritious. If I’m having a flare up, I eat it, and at least I know I’m having a healthy serving of fruit and vegetables. I started buying those little squeezable pouches. I love a weird combination – sweet potato with banana and blueberries. They’re a staple in my bag. I put them in the refrigerator at work and it’s become a running joke that we all know who’s lunch that is.
My holistic remedies haven’t replaced medicine, but I believe they’ve helped me bounce back and have kept my immune system stronger, which is more or less a petri dish. I have been on Entyvio since 2016, and I’m on other meds for my Cushing’s. I feel lucky to have good insurance and a doctor who listens and shares information with me. A lot of people don’t have that.
I also have a great support system: my family, co-workers, and a new online community. I found Girls with Guts via their Facebook support group; it’s for women with IBD and/or ostomies. The members are from all over the world, and they do a retreat every year. This will be my first time going.
These ladies are amazing. Some of them have feeding tubes or ports. We share what’s happening, what’s worked for us, rebate plans for medication and other things like that. It’s so important to talk about Crohn’s like it’s not a dirty little secret.
It took me a year to make my first comment on the Facebook page; today, I’m the group’s secretary. Getting involved has been empowering. I have no problem talking about poop!
