This Is What It's Like To Live With Irritable Bowel Syndrome

At first, I thought it was just a virus — the kind that makes you feel like your guts are being twisted into tight knots, and then someone comes in and violently squeezes everything out without your permission.

But after a horrific 45 minutes on the toilet, I’d be OK and not sick at all.

And then the whole thing would repeat itself a week later.

What was going on with me?

I’d always had a sensitive stomach. I was prone to constipation, alternating sometimes with diarrhea. But this was different. This was awful. It was brutal. Soon after the birth of my first child was when things got increasingly, well, shitty, and I had no idea what was going on.

I went to a doctor. He was very nice. He said it could have been from the antibiotics I’d taken a few months before, or anxiety, or hormones, or something I was eating. His big suggestion was that I eat more mustard. He’d seen mustard settle the stomachs of a couple of his older patients, and he thought there might be something to it.

Mustard? Really? WTF?

He also gave me the name of a gastroenterologist. He said it sounded like irritable bowel syndrome to him, but a GI doctor would need to do some tests to rule out anything more serious.

I was the full-time mom of a 2-year-old. It had taken me a month to find the time to get to see him, to arrange child care, and to plan around everyone’s busy schedules. I knew it would take at least that long to make the appointment with the GI doctor.

Plus, I was sort of terrified of going. What if the doctor found that something was totally fucked inside of me? I mean, that’s how it felt — like a beast had taken over my gut.

So I waited. Things would get better. Then a little worse. But then one day, the thing happened. The thing no respectable grown-up wants to happen: I shit my pants.

I was driving my kid to a playdate. Driving had become my nemesis over the past few months because there were no bathrooms in cars, and sometimes I needed to poop pronto. (I had thought of dragging my kid’s potty into the car, but it hadn’t got to that point. Yet.)

And then it hit me. I had to get to a bathroom immediately, like yesterday. I zoomed into the Macy’s parking lot. I was breathing hard, sweat pouring down my face. I thought about leaving my kid in the car and just running in, but I couldn’t do that. So I pulled his protesting little self out of his car seat and threw him into a stroller.

And I ran. I zoomed through the whole damn store looking for a bathroom. I got to where I thought there was one, but it was closed for cleaning. By this time, I could feel everything moving south faster than it ever had. I wanted to scream, but if I opened any orifice at all, I was afraid of what might happen.

So I zoomed to the other end of the store, the children’s department. I pushed my way past the frilly little newborn onesies, and just as I was getting closer, just as my body knew it was going to get what it needed, I felt it happen.

Most of it landed in the toilet, thank God. But not all of it did. I threw my soiled underwear into the trash, canceled the playdate, went home, and sobbed.

That incident finally pushed me over the edge. That kind of thing wasn’t supposed to happen. Something wasn’t right. I made the appointment with the GI doctor.

After asking me a series of questions, drawing some blood, ordering an ultrasound, and sticking his finger up my butt to check for blood (the highlight of the experience, let me tell you), I was diagnosed a few days later with irritable bowel syndrome, which basically means that your gut isn’t working right and no one knows why.

Options were discussed. Further tests could be done. The GI doctor suggested I try an elimination diet first. I went gluten and dairy-free for a few months. Things improved, but it was still shitty — very shitty indeed. I tried probiotics, which work for some, but which gave me the most intense gas pains I’d ever experienced. Every morning after breakfast, I’d stand at the counter, clutching my tummy and screeching.

Finally, after Googling my face off, I found something that made sense to me, the Low Fodmap Diet, a research-based diet created by doctors in Australia specifically for people who suffer from IBS. The diet is too complicated to go into detail here, but basically, it’s based on certain carbohydrates in your diet and how they act upon the gut of people with IBS.

I called a nutritionist who specialized in the diet (she turned out to be an angel sent from heaven) who helped me make a plan. The diet required two weeks of very strict limitations, and then evaluation. I had tried everything else, and I figured I had nothing to lose.

It was like night and day. Within a few days of starting, most of my symptoms went away. Gone were the pains in my belly every time I ate. Gone was the bloating, the looking like I was five months pregnant by the end of the day. Gone was the constipation, followed by violent spasm-y diarrhea a few days later.

I remember the first time I had a normal bowel movement. I had forgotten what it was like to sit on the toilet, push out your poop, and feel just fine and dandy. I almost cried I was so happy.

My nutritionist and I figured out how strictly I needed to follow the diet, and what modifications were possible. We figured out that I could eat gluten (though I needed to restrict wheat to some extent, because that’s high in Fodmaps), but that I had to be totally dairy-free. It’s sad, but true.

The diet is hard, especially as a mom chasing kids around all day, and eating on the run. It’s difficult to go out to restaurants too. But when I think back to those months of gut-wrenching pain and mad dashes to the toilet, I really don’t care. I’ll do whatever I need to do to be well, to have lovely, normal poops.

Things are not perfect. I will always have a sensitive tummy, and I have occasional gut-wrenching flare-ups. And while stress is not the cause of IBS, it can exacerbate things, so I have to keep that in check (and like any normal human, I sometimes fail).

What I learned most from the experience is that living with IBS can feel isolating and embarrassing — and that it isn’t always easy to reach out and get help. But help is out there if you look hard enough.

And if you are suffering with IBS, know this: What healed me may or may not be the thing that heals you, but please keep looking for a solution. Trust your gut (pun intended!) and you’ll find something that works for you. And remember that you are worth it, however much trouble it takes to get there. Don’t be embarrassed. You deserve to feel better.