The evening I began researching my new diagnosis of ulcerative colitis, I pulled my first all-nighter since graduate school. This was not by choice: I was up constantly with trips to the bathroom.
First I would feel an awful cramping in my abdomen and the desperate need for the toilet. I’d rush there as quickly as I could, then be overcome with pain and despair as more diarrhea and blood poured out of me. Each time, I emerged exhausted and disheartened.
Each time, the cramping returned an hour later and the experience repeated itself. It became my worst night of symptoms thus far, with twelve bowel movements by morning.
Between bathroom trips, sleeping was hopeless. My heart and mind were racing all night along with my digestion. Ever since my doctor’s appointment that morning, I had felt like a caged animal, scrabbling to find a way out. I gave up on sleeping and spent the night combing the internet for answers.
The IBD Family Tree
The physician’s assistant, Carrie, had explained some basics already. She had produced a sheet of paper with a diagram of the intestinal tract and pointed at it while she spoke. “What you have falls into the category of Inflammatory Bowel Disease, or IBD. It’s not the same thing as IBS.” She wrote IBD at the top of the page.
“Right.” I nodded. “IBS is Irritable Bowel…Syndrome?”
“Syndrome. Yes, very good. Now, under the umbrella of IBD, there is Crohn’s”—she drew a line down from IBD pointing to Crohn’s—“and ulcerative colitis.” She drew another line to ulcerative colitis. A little IBD family tree. “And under colitis, you have proctitis. It’s a type of colitis.”
Her diagram had soothed me. I liked clear explanations, and the more I understood about my disease, the more I could feel some modicum of control over it.
Now, late at night, I learned more.
Colitis, as the word implies, means inflammation of the colon. Although in this blog I use “colitis” as shorthand for “ulcerative colitis,” there are other forms of colitis. Over the years, I would eventually encounter a few people who, when I mentioned I had ulcerative colitis, responded cheerfully that they’d had it before. “No, you haven’t,” I always wanted to retort. Their tone usually implied that they thought my disease, like theirs, would eventually go away.
The key difference is in the word “ulcerative.” Many conditions can cause temporary swelling of the colon, but my disease isn’t something a person can have just once and recover from. Ulcerative colitis is chronic, with inflammation that comes and goes throughout life and can only be managed, not cured.
A Map of the World Inside Me
As I continued to Google and read about IBD, I began learning about digestive anatomy. Before now, my abdomen had been just a mushy black box full of vague, noodly intestines and mysterious other organs. But now I was forming a pretty good map of it in my head, and it boggled my mind that I had eaten and digested food every day of my life and had never had this map until now.
Here’s the gist. The stomach begins to break down food with its acids, after which the partially digested food goes to the small intestine—the noodly part. It’s perhaps twenty feet long, and it’s where most nutrient absorption takes place. Then things work their way down to the colon, otherwise known as the large intestine, which is thicker and shorter.
The colon’s map amazed me. It starts off at the bottom of the small intestine, but then it ascends along the right side of the abdomen, crosses over the top of the small intestines in a path just beneath the ribcage, and finally descends along the left side, to the rectum. It’s like a giant triumphal arch encircling everything. How bizarre, I thought when I read this. I’d never realized that part of my colon actually ran above my intestines!
If you look at a diagram of the digestive system, you might be similarly surprised. Most people think of the stomach as much lower than it actually is. When we point to our “stomach” or say our “stomach” hurts, what we most often mean is our small intestine or our colon.
The colon’s job is to finish off the nutrient absorption, then reabsorb most of the liquid that’s been mixed in with the food during the digestive process. That reabsorption is important so that we don’t become too dehydrated when we expel waste.
But when the colon becomes inflamed, as mine was as I learned all this, it can’t do its job properly. The waste is thus more watery, becoming diarrhea. Colitis patients usually get enough nutrients from our food, since our small intestines work properly, but we can easily become dehydrated and anemic from losing lots of liquid and blood.
(Crohn’s disease, the sister of ulcerative colitis, can be located anywhere in the digestive tract. It’s most frequently found in the ileum, a part of the small intestine. Since that’s where many nutrients are absorbed, Crohn’s causes malnourishment much more frequently than colitis. It’s worth noting that colitis cannot turn into Crohn’s, although Crohn’s can be mistaken for colitis, if the Crohn’s happens to be located in the colon. For this reason, doctors usually diagnose Crohn’s and colitis not only with colonoscopies and other visual tests, but with antibody tests that can help distinguish between the two diseases.)
A Progressive Disease
There are several types of ulcerative colitis, or UC. They are named according to what part of the colon is affected, starting with the rectum and working backwards:
- Proctitis – only in the rectum
- Left-sided colitis – in the rectum and left descending colon—i.e., the final part before the rectum
- Transverse colitis – in the rectum, left descending, and transverse colon—i.e., the part that crosses above the small intestines
- Pancolitis – in the entire colon
Colitis is a progressive disease. Proctitis can progress to any of the other colitises (colitii?), and left-sided and transverse colitis can also progress towards pancolitis. Progression of proctitis happens in maybe 30% of patients. No one knows why it happens, which I found worrisome that first night.
Proctitis is less likely than the other colitises to be serious. You’re less likely to need surgery someday, and your risk of colon cancer is no greater than that of the general population. But with other forms of colitis, your risk of colon cancer—the number-two cancer killer in America—is significantly higher than that of the general population. And your chance of someday needing colon surgery is 70%.
I did not want my proctitis to progress.
Experimenting With Treatments
When it comes to treating colitis, reducing inflammation is the ticket, at least as far as conventional medicine goes. Doctors will prescribe pills that either target just the colon, or, if that doesn’t work, stronger and riskier meds that target the body’s entire immune system. If the colitis is confined to the rectum, they will also prescribe suppositories or other topical meds, since the rectum is conveniently located near the outside of the body and can be reached by hand! If the colitis is more extensive, though, it can only be reached from the other direction, by taking meds orally.
Anti-inflammatory medicine is conventional doctors’ entire approach to treating IBD. Unless asked, most conventional Western doctors will not mention diet or any other lifestyle factors. If diet is brought up by the patient, doctors often treat it with skepticism and even disdain. This is problematic. Although the science isn’t conclusive, there are plenty of studies linking diet and IBD, and patients almost universally experience diet as a major factor in disease management.
The new pills Carrie had given me were called Lialda. Lialda is a form of mesalamine, which, Google told me that first night, is a mild, anti-inflammatory med that targets the colon. The suppositories I’d been taking, Rowasa, were another form of mesalamine. Mesalamine is a mild med with few or no side effects.
I was no longer on the suppositories—Carrie had instead prescribed me another topical med called Proctofoam. My Proctofoam arrived at the pharmacy a couple days after my sleepless night. You might be able to guess, from its name, how Proctofoam works: it’s a topical steroid that soothes the swelling in your rectum. You shake a little canister vigorously for 5-10 seconds, connect a small, dull plastic syringe to the canister and fill it with the foam, then lie on your left side, squirt the foam up your butt, and stay there for thirty minutes to let the foam settle.
For the second time in a couple months, I’d be sticking something up my butt to try and heal my colon.
I began taking Proctofoam three times a day. That meant I was now spending a lot of time lying on my left side—the side on which the colon descends to the rectum. It was the perfect time to read about colitis!
The Autoimmune Aspect
Colitis and Crohn’s are autoimmune in nature, I learned. In general, autoimmune diseases involve the body’s immune system attacking friendly tissue—auto-, or self-, immune. The attacked body part becomes inflamed and unable to properly function.
In my case, my immune system was treating my colon as hostile. The body doesn’t usually unlearn autoimmunity, so now that my body was mistakenly inflaming my poor colon, it would be prone to doing so for the rest of my life.
Because colitis is autoimmune, I would eventually come to understand it as two problems at once: it’s both a gut disease and an autoimmune disease. This meant I needed to learn about two separate, overlapping bodies of knowledge—gut function and autoimmunity. This overlap makes UC particularly complicated to manage.
Why Me?
No one knows the cause of colitis, as I read over and over. There seems to be a genetic component: if a family member has colitis, you’re more likely to have it. Some researchers think it may be caused by a virus, or by bad bacteria in the gut. Various websites say science has ruled out stress and diet as potential causes, but I have actually found some science indicating that these could be causes, so I believe the jury is still out.
(And there seems to be a consensus that stress can definitely exacerbate colitis symptoms when you’re already flaring. Looking back on my stressful all-nighter, it’s clear that the stress of learning about my disease was the reason my symptoms worsened and kept me awake.)
I very much wanted to know why I had colitis. No one in my family had IBD. My dad had died of stomach cancer just a year and a half ago—could that be related somehow? It seemed far-fetched. The stomach is an entirely different organ, and cancer is not colitis.
So, why me? How could I have gone from being a normal, healthy person to being someone with a disease? Had I done something, eaten something, exposed myself to some allergen or toxin, that had harmed my body? My books urged me not to dwell on this. You didn’t cause your disease, one book cautioned.
But I was an environmental scientist, and I had trouble believing that this disease had just appeared out of the blue. Something had caused my disease. And since no one knew what, how did they know it wasn’t something I did?
I would be grappling with these questions far into the future. But for now, at least, I was beginning to get a handle on the fundamentals of my disease. I hope this post has helped you understand them too.
