In my last post, I described the severe ulcerative colitis flare that ground my life to a halt in 2016. Within a month of the flare’s beginning, I was forced to take leave from my work and to rely on others for all my care.
But I left out details on why this flare was so severe. The truth is, it wasn’t only a UC flare, although I didn’t know that at the time. Let me backpedal now and fill in the picture.
Two weeks after my flare began, I had a gum graft appointment to repair the recession that had plagued my inflamed gums for years—recession which, I now understood, was probably linked to my colitis. I knew I needed the graft, but it had been scheduled before my flare. I wasn’t sure if I should postpone it now.
So I asked. My gastroenterologist said the graft shouldn’t affect my colitis because my disease was in the rectum, all the way at the other end of the digestive tract from my gums. My periodontist likewise thought there was no danger. So I went ahead with the procedure, figuring I was already miserable anyway and might as well get it over with.
I had no idea that this small decision would endanger my life.
To my astonishment, the graft itself marked the most comfortable day I’d had in the weeks since the flare had begun. It was downright pleasant! That’s because I was given fentanyl, a strong opioid that knocked out not only the pain in my mouth, but also all the pain in my gut.
Lying awake on the table, eyes opening and closing dreamily as gloved hands drilled and worked in my mouth, I felt only pressure but no pain. I basked in relief. That night, with the drug still in my system, I finally slept comfortably for several hours in a row.
Soon, though, I returned to my torment. The flare-up continued, sending me to the toilet around twenty times each day and night and racking my body with constant pain.
On top of what I was already going through, within days I now developed a gum infection. Splitting pain pierced my face, lessened only slightly by ice packs—if I held the packs directly on my skin, then the pain of the coldness somewhat distracted from the pain of the infection!
Soon the periodontist prescribed an antibiotic called cephalosporin and the infection subsided, again bringing me some measure of relief. But my flare was continuing to worsen.
It was the gum infection, and the resulting cephalosporin, that would put me in grave danger by the end of the summer.
Strange, new symptoms now began to appear. I’d had a slight fever for weeks, but now it often rose above 101 at night. One morning I awoke at 4 a.m., the sheets and even the comforter soaked with my sweat. My heart had also begun to pound rapidly, making me worry that I was developing a heart condition—often I could hear it in my ears, even when I was just lying or sitting quietly.
And a new pain was appearing in my gut, a terrible burning sensation I’d never felt before. It was always in the same place: just below my solar plexus, probably in my transverse colon. While the cramping of my flare had long been severe, there was something more terrible, more piercing, about this pain. It would last for hours and would make me writhe and gasp in discomfort.
I wouldn’t know it until several more crucial weeks had passed, but this new pain was the beginning of a C. diff infection. Clostridium dificile, or C. diff, is a strain of bacteria that lives in the guts of many people, but that can take over when other bacteria are wiped out. When I’d taken the cephalosporin, it had killed not only the bacteria infecting my gums, but also most of the remaining bacteria in my gut, which was already depleted because of my colitis.
Unlike most bacteria, C. diff isn’t wiped out by cephalosporin. That’s why taking cephalosporin is one of the risk factors for a C. diff infection. Another risk factor is inflammatory bowel disease.
C. diff kills 15,000 Americans every year; they die mainly from extreme dehydration from diarrhea. Most C. diff sufferers are older, but IBD patients of any age are also at risk.
IBD also makes C. diff particularly dangerous because it makes C. diff harder to diagnose. That happened to me: once I had C. diff, my colitis masked my C. diff’s diagnosis. The two have very similar symptoms, including abdominal cramping and bloody diarrhea.
C. diff tests can also return false negatives. Twice, I tested negative, and each time, we had to assume I only had IBD and couldn’t treat me for C. diff. But because my C. diff went untreated, it overrode all my IBD meds, which meant that for weeks and weeks, nothing worked and I just became weaker as the summer progressed. In upcoming posts, I’ll tell more of this story.
Why did all this happen? The key error, in my view, was going ahead the gum graft.
I think the error occurred largely due to the siloing of conventional Western medicine. My gastroenterologist specialized in the colon and the digestive tract but knew little about periodontics. He probably didn’t understand that gum infections often arise from gum procedures.
My periodontist, in turn, knew almost nothing about IBD, such as the fact that IBD patients are at elevated risk of C. diff infections when we take oral antibiotics.
I’m not sure how best to assuage the siloing problem; specialists can’t be expected to know much about each other’s specialties. But at the very least, I hope my story will be told to other GI doctors and periodontists as an illustration of at least one thing not to do.
And more broadly, the critical lesson I learned from my health crisis is this: non-urgent medical procedures should not be performed during IBD flares.
Most procedures come with the risk of bacterial infection, which may require oral antibiotics, which wipe out the gut microbiome—the trillions of bacteria that keep our guts healthy. The microbiome is often key to managing IBD. Wiping it out can be disastrous.
So if a procedure during a flare can be postponed, it should be.
