One Woman's IBS Struggle: "It Took Me 7 Years to Be Diagnosed"
Imagine feeling lousy every single day for seven years. That used to be me.
I was 27 when my symptoms started. At first, it was just a lot of bloating, abdominal pain, and nausea. Over time, food became my enemy. I would eat a pear, thinking it was a healthy choice, but then I’d be curled up in pain for eight hours. I was constantly running to the bathroom, or leaving work early for what appeared to be a stomachache (but was so much more).
Worrying about these episodes affected me mentally and physically. I pulled back from my social life and stopped working out, and I avoided any situation that I felt I couldn’t control, like concerts or day trips. The rare times I did make an effort to socialize, I never felt good. I was always gritting my teeth to make it through and put a smile on my face.
Because there’s a social stigma to these kinds of problems, I felt so vulnerable and misunderstood. When I flaked out on plans because I was having a bad day, my friends at first didn’t get it—they were like, "Um, can’t you just take something for that?" It wasn’t like a broken leg or a cut that people could see—despite all of the pain and discomfort, I looked completely normal to everyone. But inside I was desperate, hopeless, and frustrated.
I spent seven years and over $15,000 (even with insurance!) trying to get a diagnosis. Over the years I saw three different general practitioners and have had three different GI doctors. I had an endoscopy, a colonoscopy, a barium CT scan, a gastric emptying study, a pill camera endoscopy, hydrogen breath tests, and more stool tests than I can count. At one point I was misdiagnosed as having Crohn’s disease.
Meanwhile, I was struggling to figure out what foods I could tolerate. I ate ginger like it was candy to try to tamp down my symptoms and avoided everything spicy. For nine months, I tried cutting out all coffee and alcohol. I tried acupuncture and Chinese herbs to control my crazy bowel movements.
Answers at last
I was finally diagnosed with IBS-D (irritable bowel syndrome with diarrhea). It was such a relief to know what was wrong, and to start figuring out real solutions. This process has given me a renewed sense of inner strength. I’ve learned a lot about my ability to overcome and fight.
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Now that I have a diagnosis, I’m able to plan ahead for social situations. I know how to manage my diet so I don’t have to keep one eye on the bathroom. I’ve also modified how I work out. I’ve always been a runner and played volleyball, but now I mix in healing exercises like yoga and meditation, too.
Diet-wise, I’ve figured out that I need to avoid dairy, legumes, and most sugars (no -ol sugars like sorbitol and xylitol or -ose sugars like sucrose and fructose). I eat lots of protein and no whole wheat or grains like oats—for me, simple carbs like white rice or potatoes are best. I’m also no longer eating hard-to-digest veggies like cabbage, Brussels sprouts, broccoli, and cauliflower; I stick with green beans, squash, beets and carrots. Even fruits like apples, pears, or bananas are too hard on my gut.
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What has helped me the most since my diagnosis is to talk to people about it. My friends are incredibly supportive. I am even able to talk freely about it at work. I still wish IBS was easier to discuss. Bathroom talk is usually a joke—no one says "I’m 28 and I almost pooped my pants" or "I’ve had a stomachache with diarrhea for three months." But, by being open about this, I hope I can help others and get people to understand that IBS is real.
If you have a story about being misdiagnosed, email us at firstname.lastname@example.org
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