When is Enough, Enough?

While every human has the occasional digestive upset, those of us with IBS have come to experience it as a chronic condition, with little to no information on causes or a solution.

According to the IBS In America 2019 survey, many people go years before seeking a diagnosis of IBS, and 33 percent initially believed that their symptoms weren’t due to a medical condition. It saddens me that so many of us suffer without getting professional help for so long. But it doesn’t surprise me. Even now, when my IBS-D flares up, I don’t immediately take Imodium. My thought process is this: if my body is trying to evacuate something that isn’t working for it, I want to let it… at least, to a point. After a few bathroom trips, if it doesn’t seem like it’s slowing, I’ll definitely take the medicine.

The stigma of IBS

I think part of the reason so many of us don’t seek a medical diagnosis for our symptoms has to do with the stigma. People still have difficulty speaking about IBS – me included. It’s not easy to talk about bathroom habits, let alone the gas, bloating, pain, and fatigue. As a woman, and as Karina has written about, I was raised in the South with the expectation that women do not and/or should not smell or emit smells, let alone admit that you defecate. This is obviously an impossible standard. And yet, it plays some part in why people don’t seek medical advice.

“It’s your own fault”

In addition, our bathroom habits are considered to be under our control from the time we are potty trained, and other than the occasional virus or food poisoning, any deviation from a normal bowel movement is considered to be your own fault – you ate the wrong things, or too much (or too little) of one food group. This “blame the victim” mentality comes up in other facets of our society as well. I don’t believe any of them serve us. But I can see how the attribution of the fault also adds to the delay in seeking health care, as we begin the process of trying to figure out on our own how to control IBS symptoms.

Advice for the undiagnosed

Here’s my advice for those who are experiencing symptoms of IBS, whether it’s constipation, diarrhea, or some combination:

1. Keep a symptom journal

   It doesn’t have to be fancy, and it doesn’t even have to be pen-and-paper. You can keep one on your phone or add it to your existing calendar. The important thing to keep track of is what symptoms you’re experiencing, and how often they are occurring. IBS may be the culprit if you’re experiencing symptoms of recurrent abdominal pain with changes in the frequency or form of stool for at least 3 days in a month in the last 3 months.

2. Talk to your doctor

   While it can be difficult to talk about IBS symptoms, even to a doctor, it’s important to bring them up to your healthcare team. Bring your symptom journal with you, as this provides helpful information as well as supporting documentation to your personal recollection.

3. Find another doctor if needed

   Unfortunately, not everyone has a great doctor and many people with IBS have to see more than one doctor to receive a diagnosis. The diagnosis for IBS isn’t straightforward – it’s a diagnosis of exclusion, which means they have to run tests to rule out other conditions first. While the process may take several steps, be persistent – you deserve an answer and help.

4. Talk to a specialist

   If you don’t get help through primary care physicians, see a gastroenterologist if you can. Gastroenterologists are specialist doctors who focus on digestive conditions.

5. Get support from others who’ve been there

   If you’re reading this, you’ve already found a great community of others who understand what it’s like to live day-in and day-out with the unpredictability of IBS. Join the conversation, ask questions, and reach out for support. You don’t have to go through it alone.