Let’s Talk About Poop, Baby

Before I go much further, let me say a few words about poop.

One of the most isolating things about ulcerative colitis is the grossness of its symptoms. Most chronic illnesses are isolating, because they typically involve fatigue—it’s hard to be social when you’re tired. In addition, inflammatory bowel disease also usually involves dietary restrictions, creating a second form of isolation that can be particularly painful.

But IBD adds yet another barrier to those two, as well: embarrassment. We IBD sufferers often avoid talking freely about our illnesses, and we abhor being around others when experiencing their mortifying symptoms. Due to the combination of all these factors, IBD can be particularly lonely.

I find it remarkable that I write a blog about my IBD. Before colitis, I was totally uncomfortable talking about poop, even to my family or my husband Ron. Some discomfort is common, but I believe mine was extreme.

I disliked the idea of anyone—even Ron, even my family—ever thinking about the fact that I, personally, ever pooped. My body wouldn’t even let me poop around other people. I had to be alone! I met Ron in my twenties in the Peace Corps, and back then, he and I developed a running joke that girls and women never pooped but simply dropped rose petals into the toilet. When I had a bout with giardia and he and I were sharing a hotel room, I insisted that he leave the room each time I had to go.

By the time I developed colitis, I’d known Ron for over a decade and we’d been living together for years. But still, whenever we were sitting together in our quiet apartment and my urgent need for the bathroom arose, I was so embarrassed that I would turn on the bathwater so he wouldn’t hear anything.

It’s amazing that I’ve gone from that shy girl to someone who secretly kind of enjoys talking and writing about poop!

I Couldn’t Bear This Alone

It was a month or two into my colitis that this shift began to happen.

By now, I’d gotten into the habit of holding my breath each time I went into the bathroom and praying for no blood. No blood, no blood, no blood. I never knew when it would be there. It would be gone for days, then return unexpectedly. And in the first months after really understanding that I had a disease, each time the blood returned, it was devastating.

The doctors had changed my medicine, so I was now taking my four huge Lialda pills every night, and three times a day I was dutifully squirting Proctofoam up my butt and then lying on my left side for a half hour. I was changing my diet, too, which I’ll get to in future posts. For short stretches, all these efforts would seem to be working. I would spend a few days feeling more and more hopeful, believing I was finally on the mend.

Then there’d be blood again, thick red blood soaking the toilet paper, and something deeper than tears would rise up behind my eyes. I would emerge from the bathroom defeated and mutely crawl into Ron’s arms.

“Blood?” he would say.

“Blood.”

I never thought poop would make me feel so lonely. Until now, I’d wanted nothing but aloneness with this subject. But now, I couldn’t bear this alone.

Ron and I began to talk about my poop daily. It was turning into the opposite of my previous shyness. I gave him reports when he got home from teaching. I was still a little self-conscious, but I pressed on, because suddenly, my poop was the single most important thing in my life. It was my news report. It told us whether I was getting better, whether we were any closer to moving forward in life, any closer to trying for a baby. My poop experiences sent me on a daily roller coaster, and I needed to confide that roller coaster to Ron.

I was still keeping quiet about my disease online. My friends and family knew about it, but I struggled with how much to talk about it with people I was just getting to know. I didn’t want anyone to define me as the Girl With Ulcerative Colitis. For the first two years after diagnosis, I would keep it off my Facebook feed. When I began blogging about it, I only did so on a website I never advertised to anyone I knew.

My disease was not me, I felt. I didn’t want to be associated with illness. I wanted people to know me for the other things that defined me better—my passion for writing, my love of stream ecology, my co-founding a civil political dialogue group. Colitis felt like a tangent, an incredibly inconvenient distraction, from how my life was supposed to be going.

And if I wrote publicly about my disease, people would associate me with poop. No one wants to be associated with poop. I mean, really!

Handy Poop Terms!

But meanwhile, in my conversations with Ron and especially with my doctors, I was becoming fluent in talking about poop. I was learning all the poop-related terminology, part of my recent education about all things digestive. I had discovered the Bristol stool scale, which categorizes stool types from unhealthy to healthy. (I urge you to click that link—it’s worth the visual!)

I’d learned useful terms for describing problems I often had:

• urgency (I have to go RIGHT NOW)
• explosiveness (’nuff said)
• pencil-thin stools (also ’nuff said)
• tenesmus (the feeling that I have to go, but then can’t go once I’m on the toilet)

(The urgency piece is common with colitis. When the rectum becomes inflamed, it sends colitis patients rushing to the bathroom during flares, adding another aspect to our terrible isolation. We can never stray from the toilet for long. Leaving the house involves mapping all the toilets along our route in advance, and concerts and festivals fill us with dread because of their long lines and sparse restroom facilities. Often, to avoid it all, we just stay home.)

Along with the symptoms above, there were also gas, bloating, and pain. I learned that pain can be diffuse or acute, and mild, moderate, or severe.

I often had mild, acute pain in my lower left side—what I’d recently learned was my descending colon. The pain was mild in that it wasn’t very strong, but it was acute because it was concentrated in one tiny area rather than spread across my whole abdomen. It felt like someone was sticking the tip of a pencil into my side and just holding it there constantly, to irritate me. It didn’t hurt that bad, but it was stressful. A constant reminder that my colon was still not okay.

These are useful terms. If you have a digestive problem, I recommend familiarizing yourself with them, because they’ll help you communicate what’s going on to your doctors.

What’s Normal, Again?

I gradually became comfortable describing my symptoms to Ron and my doctors, and occasionally, I even found myself opening up with friends who experienced similar symptoms and didn’t mind talking about them.

And over time, my previous shyness relaxed. When you get used to talking about poop, your standards start shifting. By now, years after getting diagnosed, I’ve lost virtually all my self-consciousness. I’ve talked to so many doctors and friends and acquaintances about it that I’ve utterly lost my sense of what’s acceptable to say in polite society. I can’t remember: Did I used to be self-conscious about saying colon? Rectum, for sure…but what about bowel? Is that a word normal people say?

I still refrain from talking much about poop unless people ask me about it, but that’s no longer because I’m shy. I just recognize that I might make others uncomfortable…and that I’ve totally forgotten where the line is!

And eventually, I took the giant leap of putting it all out there online, for all the world to see. I will indeed be forever associated with poop to those who don’t know me well. My disease had started taking over so much of my life that it felt inauthentic not to write about it more publicly. And I realized that my writing publicly might help others with IBD, or other diseases, or other embarrassments, to be less self-conscious. While many people feel that in their own lives and careers, they can’t reveal their own similar diseases, I could afford to. I decided to take one for the team.

I want to foster a movement towards being more open about digestive health. (Please oh please, can we call it The Bowel Movement?) The colon is just another organ, after all. There’s no good reason people with injured colons should be any more embarrassed than people with injured legs or arms. Since first announcing this blog, I’ve received thank-yous from many people who felt embarrassed, and I hope my writing is helping others too.

Where once I was embarrassed to talk about poop, now I kind of get a kick out of it. And the fact is that poop is a vital part of life, health, and resolving our collective medical problems. If more of us were comfortable talking about it, we’d probably all be healthier.