The Empty Consultation Room

I wasn’t diagnosed with IBS-M until 2011, because up until then, my symptoms were manageable. My pain seemed to be controlled by the SSRIs I was taking for depression, and I had developed coping mechanisms for my unpredictable gut – sometimes rushingwaytoofastohsh*t! and other times… not… moving… at … all… ugh.

Then I crossed paths with a nasty bacterium called Clostridium difficile, or C. diff, for short. At first, I brushed off changes in the way I felt. A key symptom of C. diff is severe diarrhea.¹ But, that might not seem very different than any other day with a flare-up. I also felt run down and lethargic, but I was putting in long hours at the office, so I ignored that too.

Another symptom is abdominal pain – and that’s the one that convinced me something was terribly wrong. Because after several pain-free years, it was like flipping a switch. One moment, I was working productively at my desk, the next, I was doubled over. I ended up going home from work and didn’t come back for a week.

And the pain just wouldn’t go away. It hurt when I walked too vigorously; hurt when I laughed; hurt if I slept on my stomach. I tried every soothing remedy I could find, from antacid liquids to slippery elm bark wafers (gag). It was like a shrill car alarm blaring outside your window at 6 a.m. You can’t shut it off, so you put a pillow over your head, but the sound is still there in the background, boring into your brain.

Great expectations

My primary care physician thought it could be an ulcer. So, I got tested for H. pylori. Nope. Bloodwork revealed nothing. A savvy nutritionist recommended having a stool sample tested, and that’s what found the C. diff infection. Huzzah! A heavy-duty course of antibiotics killed the bacteria, and I started to feel more energetic.

But I was still in pain. The alarm refused to be silenced. It screamed non-stop, 24 hours a day. Some days, it’s all I could hear. Like tummy tinnitus.

After several visits to my regular doctor, and no answers, she finally referred me to a gastroenterologist, and he in turn recommended an upper endoscopy. I was thrilled. That alone is just messed up: Who gets excited about being anesthetized and having a tube put down your throat? This gal did! I’m sure I was the only person in the waiting room that day with a smile on their face, because I just knew I was going to walk out of there with an answer on how to stop the pain.

The fact that you’re reading this, on this website, means you might already know how this story goes. It may be similar to your own story in getting a diagnosis.

After waking up from the procedure and a bit of recovery time, I was escorted to a cozy little nook down the hall from the surgical suites. The sign on the door read, “Consultation Room.” It was like a psychotherapist’s office, with soft chairs and soothing colors. Boxes of Kleenex. The kind of place where people get bad news. But not me! No Kleenex for me.

After just a few minutes, the GI doctor strode briskly into the room and shut the door behind him. He was smiling. He said he had great news. I knew it!

No sign of an ulcer. No sign of stomach cancer. He rattled off a few more items that came back negative. Some esophageal redness, but not bad enough to be called GERD. You’re completely healthy, he said.

I was confused. But—what about the pain?

Oh, he said, it’s probably IBS. Then he shook my hand, turned on his heel, opened the door and walked out. Off to put a tube in someone else.

OK, I told myself. It’s IBS. That’s a THING. I can deal with a THING. He’s going to come back, or a nurse is going to come in here with some printouts and some medicine, and this THING will be over. So, I waited. And waited. But no one came. And my stomach still hurt.

It slowly dawned on me as I sat alone in that empty consultation room that I was going to walk out of there in pain, and with no solution in sight. I did need the Kleenex after all, because I was crying when I finally got up, walked down the corridor and met my concerned husband in the waiting room. “They can’t help me,” I told him tearfully.

Demanding help

In hindsight, I expected too much from an outpatient surgical clinic. They’re not really set up to do that kind of in-depth counseling; for them, it’s all about getting the next patient on the table.

But the GI doc could have said, “Call my office for a follow-up appointment, and we’ll talk about it.” When the results reached my regular doctor, she could have reached out and said, “Come in for a follow-up appointment, and we’ll talk about it.” Neither of them did.

I eventually did get help – when I demanded it.

I called the GI doc’s office and said that I didn’t care if my stomach looked great; it hurt like hell. We were able to adjust the medication I take for my depression to help with the pain. I did research online to learn about this THING called IBS and develop a routine, including meditation to help handle stress. My nutritionist helped me introduce probiotics into my diet and figure out whether foods were a trigger.

Why no one volunteered any information – why it felt like I had to fight for it – I don’t know. But my advice to you is to be your best health advocate. Whether they walk you to a room with comfy chairs, or give it to you straight in recovery, ask your health care providers questions directly: What does that mean? Is there information you can give me on what to do? What is OUR next step?

Honestly, it took me a while to forgive my doctors, because I felt they let me down. But it’s 2017, and everyone has learned more about this THING called IBS, even health care providers. And with online communities like this one, you will always find someone ready to help and listen. The consultation room is never empty.