My Sigmoidoscopy Helped Me See My Disease

In mid-May of 2014, my doctors prescribed a sigmoidoscopy to see what was happening inside my colon. My ulcerative proctitis meds weren’t working, and I’d been wondering if my disease had progressed.

Some of my symptoms were more typical of full-blown colitis than proctitis. At times I had eight to ten bowel movements a day. I could feel and even hear gurgling and slurping in my transverse colon, as if it was a giant milkshake straw someone was sucking air through. And there was persistent, mild, acute pain in the upper left corner of my abdomen, where the transverse colon takes a sharp turn before descending to the rectum. I suspected this corner was inflamed, and that food was having trouble passing through it. If it was inflamed, maybe my disease had progressed, I reasoned.

When I first emailed my doctor about this worry, he dismissed it: I have not seen someone have an extension of the proctitis into left sided colitis. Regardless of whether this statement was true, it struck me as remarkably ignorant—proctitis does often progress. But this was par for the course with this unattentive doctor, who had first prescribed me the wrong med.

He did suggest the sigmoidoscopy, though, just to see what was going on. Scopes like colonoscopies and sigmoidoscopies are the only way doctors can see inside the colon. Unlike a full colonoscopy, which traverses all six-or-so feet of the organ, a sigmoidoscopy goes up just several inches into the sigmoid colon—the last segment before the rectum. By looking at that part of my colon and seeing whether it was inflamed, they’d be able to see whether my disease had spread.

You’d be surprised how excited I was to get this procedure. I had just finished Mary Roach’s Gulp: Adventures on the Alimentary Canal, which I recommend to everyone. The book is a tour of the digestive tract from the mouth to the anus, and of all the weird science along the route. While my other books were teaching me about colitis specifically, this one helped me understand how digestion works in general.

Gulp ends with Roach getting a colonoscopy, which she describes as amazing and enlightening. She says that Europeans often elect to stay awake during the procedure and watch the screen, and that it’s not very uncomfortable. I’d been anesthetized for my colonoscopy, but I wouldn’t be for my sigmoidoscopy, so I was excited. After all my reading about my own colon, I would finally get to look inside it!

To prepare for the sigmoidoscopy, I had to do my first-ever enema. I lay on the floor near the toilet and squirted what felt like cool, thick water up my butt. After all my daily Proctofoam injections, this felt like no big deal. Soon I felt the familiar need to rush for the toilet, and within minutes I was “clean as a whistle,” which was the phrase the jaunty, white-haired pharmacist had used when I’d picked up the enema kit. “The point is to get you clean as a whistle!”

After all the pain and discomfort of the last few months, the clean, drained feeling of the enema was actually a relief.

A few hours later I was sitting on the procedure table in my hospital gown. A new doctor walked in who I hadn’t met before. He was perhaps forty-eight and somewhat handsome; he sat near me and spoke in an unhurried tone.

“I’ve been reading through your emails since you got diagnosed,” he began, impressing me immediately. “I can see why you might have been frustrated at times.”

I half-shrugged and smiled. He was right—I had become frustrated with both of my first two doctors.

I confessed my worry that my proctitis had spread. He reassured me further by saying what I’d read in several places: “In about thirty percent of cases, proctitis can extend to more-extensive colitis.”

With growing hope that this doctor was more capable than my first one, I mentioned the constant, sharp pain in my abdomen. “If it turns out this is still just proctitis, then what is that from?”

He smiled. “That’s one of those things that, honestly, science just doesn’t know the answer to yet.”

His candidness sealed the deal; I liked this guy. Willingness to say “I don’t know” had become one of my most desirable traits in a doctor.

I lay on the table and he warned me that in order to see my colon clearly, they’d need to blow air into it. “So you’ll probably feel some pressure and discomfort.” I bravely said okay.

A minute later, I was cursing Mary Roach.

They turned on a loud, air-blowing machine next to me, and all at once, I felt the air being forced up through me. The pain of it was intense. The air felt like a physical object inside me—I clearly felt it rise, fist-like, up my left side, then a minute later turn a corner and cross my abdomen through my transverse colon.

I cried out a couple of times over the white noise of the machine in a strained voice, trying to somehow sound light-hearted. The doctor and the nurse at his shoulder murmured sympathetically. I wondered if the sensation was the camera already snaking its way up through my colon, but when I cast a wide-eyed glance at the screen, it was still dark.

Colonoscopies without anesthesia could not possibly be joyous and comfortable, I thought. At least, not if your colon was inflamed. Mary Roach’s must not have been. This small procedure was anything but comfortable, and we hadn’t even gotten started yet.

Soon the doctor was moving the camera through me. After the much-larger funnel of air, the tiny camera felt like nothing at all. Now I could see the inside of myself, and I could grudgingly appreciate what Roach had written. It was fascinating.

The doctor pointed out the healthy part of my colon. Colons, I learned, are supposed to be pink and smooth-surfaced, riddled with a river network of hundreds of delicate red blood vessels.

“This part looks healthy,” he said, stopping a few inches up. “It looks like the proctitis is still just in the rectum.” Good news.

He brought the camera back to the diseased area, and stopped where the disease ended and the healthy colon began. “See the difference? On the left side of the screen, the side higher up in the colon, you can see the blood vessels clearly. On the right side, toward the rectum, see how you don’t see them?”

“Yeah,” I called over the noise of the machine, gritting my teeth against the pain. Where the proctitis was, the colon’s thin red blood vessels disappeared. The whole surface there looked rash-like: blotchy pink and red and white, without distinct features.

“Colitis always spreads cohesively,” he explained. “You can usually see a clear line like this where it stops. And it doesn’t jump over spots of healthy colon, so since it stops here, I know there isn’t any colitis further up.”

I nodded, relieved, praying this would be over soon.

It was over soon. The whole procedure lasted only five minutes, although I would be left with bloating and cramps for a few hours afterwards.

The doctor ordered a change in my meds. This would be the third medication regime we had tried, with one new regime every month so far: first Entocort (the misprescribed med) and Rowasa, then Lialda and Proctofoam. I could stop taking my four huge Lialda pills every day. This was welcome news—the pills made me feel like a sick person every time I swallowed them, partly because of their size.

“Those pills aren’t working,” said the doctor. “You’re still inflamed. I suspect that, even though Lialda targets the lower colon, your proctitis is too far down and the meds are used up by the time the pills reach it. In your case, rectal suppositories make more sense.”

I was to discontinue the Proctofoam—no more lying around for thirty-minute intervals—and start a new suppository called Canasa. It was another mesalamine, like the Lialda and the Rowasa suppositories I had used in Spain and Morocco, but with yet another concoction.

By now I had learned not to get my hopes too high over a change in meds. But I still left the appointment feeling agreeable—the new doctor had made me feel listened to, and he’d been transparent and honest. I liked him. Who knew if his prescribed changes would work, but I would give them a go.

The sigmoidoscopy had been worth it, I decided. Now I knew that I still only had proctitis. And I’d gotten a glimpse of my disease looked like, and what a healthy colon looks like as well.