On my third day in the hospital, we still couldn’t figure out what was wrong with me. I was in a severe flare-up of my ulcerative colitis—that much was clear. But for the past seven weeks, nothing had worked to treat my flare, and that had never happened before.
In the two years since diagnosis, I’d learned I could get flares under control with a careful diet and a topical steroid called Proctofoam. This time around, I was on much stronger meds than those—most recently, IV steroids and Imuran, an immunosuppressant. But still my flare was raging.
What we didn’t know was that along with my flare, I had a C. diff infection. Clostridium difficile is a nasty gut bacteria that can take over when beneficial bacteria are wiped out. C. diff infections closely resemble inflammatory bowel disease: symptoms include frequent, bloody diarrhea and abdominal pain.
And IBD patients like me are at greater risk for C. diff, because our microbiomes are out of whack already. We’re especially at risk if we’ve taken antibiotics, which I had done just a month earlier for a gum infection.
The thing is, we had thought of C. diff. It made sense that I might have it. It would explain why my meds weren’t working—they targeted colitis, not C. diff. But I’d tested negative for it, twice.
So all we could do was proceed under the assumption that I didn’t have it.
Now that I’d been in the hospital a few days, my bowel movements seemed to be slowing, but we weren’t sure if this was a true improvement. That’s because along with my other meds, I was also on Norco (hydrocodone), an opioid. Opioids are constipating.
The question was whether my inflammation had actually gone down. If it hadn’t, and things had only slowed down because of the Norco, then the colitis meds weren’t working after all. And if that was the case, we needed to try biologics, the strongest meds of all.
If even biologics didn’t work, we would have to remove my colon. I prayed that that wouldn’t be necessary.
A new doctor rotated in. I liked her immediately. She looked tall and athletic, and she seemed to be both empathetic and a straight shooter. She listened carefully as I described all my symptoms, then she prescribed a flexible sigmoidoscopy. “I want to see what’s going on in there,” she said.
I inwardly cringed, remembering my first flex sig, when I’d been much healthier than I was today. It had been agonizing because I’d been awake for it. I couldn’t imagine how I’d endure such a thing now. Nevertheless, I steeled myself and agreed.
That afternoon, a nurse attempted to give me an enema to prepare for the procedure. It was so painful I couldn’t keep from shouting. She stopped immediately, announcing we’d forego it, and I thought I saw her wiping tears from her own eyes after causing me so much pain.
An hour or two later, when I was wheeled to the operating room, I learned, to my boundless relief, that for this flex sig I would be asleep.
“I will?” I said to the nurse who had mentioned this. I still felt shaken from the trauma of the enema. His news made me happier than I’d been all day.
He smiled and confirmed that they would put me under. “We’re not into torture here,” he said.
I fell asleep talking to the anesthesiologist and awoke feeling comfortable. The anesthesia had given me some respite from the constant pain of my flare.
But my respite was short-lived: I soon learned that my colon had looked “like ground-up meat,” which meant it was still severely inflamed. The meds were not working at all—my painkillers were just masking my symptoms. I fought back tears, overwhelmed with fear and despair.
We would have to try biologics. We needed to wait a few days, the doctor said, to run tests and make sure I was eligible. In the meantime, she put me on a clear-liquid diet, just in case this would help. If nothing changed over the next few days, then I would go on the last-resort drugs.
My breakfasts, lunches, and dinners became chicken broth and apple juice. I hoped against hope that this change would finally help my gut and I could avoid biologics and/or surgery.
The following afternoon, the day after the flex sig, I had an especially bad bout with pain. A special, searing pain always hit in the afternoon and lingered for several hours, like acid boring into the spot just beneath my solar plexus. Later, I would understand that this pain was from C. diff. Usually I could get through it with Norco, although it was still miserable. But this time, Norco didn’t touch it. Ron and I called urgently for the nurse, who gave me morphine.
The following day, I mentioned the pain crisis to the doctor. She frowned and suggested we do another C. diff test.
She explained that C. diff tests can produce false negatives—you can have it but test negative for it. During the flex sig, she’d seen possible signs of C. diff: a translucent yellow film covering parts of my colon. My searing pain must have clued her in, too. I had said that this pain felt very different from anything I’d experienced before with IBD, and she’d believed me.
I agreed that I should be tested again. The next day I would start biologics, and it seemed good to triple-check that IBD was all I had.
That night, when my night nurse came in to check my vitals in the wee hours of the morning, I asked wearily if the C. diff results were in yet. She peered at her computer screen and said yes: they were positive.
My eyes flew open.
I’d been exhausted, but I suddenly felt stunned and ecstatic. I breathlessly told her what this news meant. The C. diff was the answer that had eluded us for weeks! We finally had the reason my meds weren’t working! I might not need biologics after all!
Sure enough, the next morning, the doctor changed my plan: we would hold off on biologics so we could first treat the C. diff.
I felt eternally grateful to her for catching it. “Thank God you thought to test me again!” I said. “If we’d started biologics, they wouldn’t have worked, right?”
She agreed. She told me about another patient, a young woman who, like me, had been stuck in a severe flare. When nothing worked, they eventually tried biologics, and when those didn’t work, they had to remove her colon. Only after the surgery did they discover that she’d had a C. diff infection. If they’d caught it earlier, she could have kept her colon.
Hearing this story made me shudder. I could have lost my colon that way.
And yet, even now, I still didn’t fully grasp the danger I was in.
I was given vancomycin, an antibiotic with an excellent track record for treating C. diff. Although my C. diff had probably been caused by taking another antibiotic, this one is different: it kills C. diff.
It would take a week or so to be effective, so in the meantime, I’d just have to keep enduring my ordeal.
Over the course of the next week, a new worry arose: my weight was plummeting. It had been falling steadily since my flare had begun, but now it seemed to have dropped off some precipice. I was losing one to three pounds a day.
Even when I got off the clear-liquid diet and went back to solid foods, I couldn’t seem to stem the loss. I began texting my morning weights to my family, and when I look back at those texts now, the numbers are sobering.
I had been admitted for severe weight loss at 105 pounds, down from 122 a month earlier. Now my weight dropped to 102.4, then 99.8 the next day, then 95, 93, and 90. Already severely underweight, I’d lost twelve more pounds in five days.
The doctors hemmed and hawed about what to do. Intravenous feeding was discussed but was deemed too risky in my frail state. Doctors didn’t seem to have any good options for me.
In the midst of the discussions about IV feeding, a new, cocky doctor arrived. New doctors had been rotating in every few days, tag-teaming my care. I’d been lucky to get the woman who had listened to me and caught my C. diff, but I was unlucky with this man.
Soon after introducing himself, he began to lecture me on not yet trying biologics. When I feebly protested that we had to wait for the C. diff to be treated, he didn’t seem to hear me—not only was he uninterested in my perspective, but he also seemed uninformed about the decisions made by previous doctors.
Slowly, I gathered that he must have heard about my general aversion to conventional medicine and my hope to avoid biologics and concluded that I was being unreasonable. He spoke to me in a chastising tone, as though my hesitation was getting in the way of my healing.
Months later, reflecting on this, I realized that the opposite may be true: my reluctance to go on biologics may have helped save my colon. If I’d been more open to conventional medicine, I might have tried biologics earlier and lost my colon, like the other young woman with C. diff.
This cocky young doctor wanted me to start Remicade, one of the biologics, asap.
“The thing is,” he said, “the longer you wait to start on Remicade, the weaker you are becoming. And that is a very dangerous situation. Most patients who go on Remicade need surgery within a year of starting it. But with you in such a frail condition, frankly, there is a chance that you won’t survive a surgery if we do need to do it soon.”
A chill washed over me. It hadn’t occurred to me that I might not survive surgery.
After the conversation ended, I sat reeling in my bed. Later that day I had a panic attack. Ron sat breathing with me, staring into my tearful, frightened eyes and telling me that I’d be okay.
Before talking to the doctor, I had already been terrified of what was happening to my body. At ninety pounds, I’d become skeletal; I could barely walk to the bathroom just feet from my bed. For months, I had sensed that my life was in danger, but this was the first time a doctor had spoken such words aloud to me.
Suddenly, I could see the specific way events could cascade and send me to my death. Even after the C. diff was treated, I would still be dangerously underweight. My colitis meds still might not work, and if they didn’t, we’d try biologics. But those still might not work, either, and if that happened, and if I had indeed become too weak for surgery, then I could die.
And what if the C. diff hadn’t been caught? By now they would have put me on a biologic, but it wouldn’t be working. My weight would be plummeting. Surgery might be prescribed, like it had been for the other woman, but it might kill me.
Gripping Ron’s hand, I let out shaky breaths and slowly calmed back down. When I was calmer, the fact that I’d had a panic attack angered me. The cocky young doctor had been careless with his words. In my frail state, panic was the last thing I needed.
The next day, when the same doctor started to lecture me again, I cut him off and told him sharply that I needed him to be more careful with how he talked to me. Startled, he backed off and agreed.
And I didn’t let him bully me into going on Remicade. It didn’t make sense to start it now, before we knew the C. diff was gone, I said firmly. Privately, I trusted the previous doctors more than him, and I wanted to go with what they’d decided.
The most pressing problem was still my weight. For this, someone finally made a new suggestion: tube feeding. This would be different from intravenous feeding, they explained—it would be uncomfortable but not risky. A thin, flexible tube would run up my nose, down my throat, and into my stomach, pumping easy-to-digest proteins into me faster than I could eat them.
Depressed by the image of myself with a tube down my throat, I haggled. Could I try drinking the tube-feeding liquid? I could still swallow, I pointed out anxiously.
The nutritionist calculated how much I would need to drink every day to begin putting on weight. Even though I had very little appetite, I began drinking like it was my job. The liquid often made me nauseous and bloated, but I persisted.
Over the next couple days, my weight bottomed out at 88 pounds, stopped falling, and finally began to rise.
I was fortunate. Around the time that my weight began increasing, my C. diff also subsided. Once it did, it was clear that my flare was still not under control, and I did go on Remicade. Very thankfully, over the course of the next few months, my flare would settle down and we’d learn that surgery wasn’t necessary.
By listening to me closely, and by testing me a third time for C. diff, the empathetic doctor had very likely saved my life.
I would tell her so the following year. By then I would be largely recovered from my crisis, and one day I went in for a colonoscopy to check on my progress. The procedure went well and my colon looked much better.
Lying on the gurney after coming out of anesthesia, I listened through the curtains as other patients spoke to their nurses and doctors. My ears perked up when I heard the name of the doctor who’d caught my C. diff; I hadn’t seen her since my long hospital stay.
I asked my nurse to go get her, and soon she was standing over me.
“Hi,” I said with a smile from my gurney. “I don’t know if you remember me, but you saw me in the hospital last summer. I had a C. diff infection with a bad UC flare.”
“Oh! Yes, I do remember you very well!”
“Well,” I said shyly, “I just wanted to tell you that since that all happened, I’ve realized you probably saved my life. You were the one who caught the C. diff infection, and if you hadn’t caught it and I’d needed surgery, I might not have survived it. I wanted to say thank you.”
“Katie,” she said, “You’re going to make me cry.”
