After nearly a month in a severe ulcerative colitis flare, my mom tried to persuade me to go to the hospital. I was becoming dangerously dehydrated, and a doctor had recently told me she “wouldn’t be opposed” if I checked myself in.
But the doctor also hadn’t urged me to go, and I used that as an excuse to stay home, protesting against my mother’s urgings.
I did not want to go to the hospital. There, I’d be without my husband Ron, who was my greatest source of comfort. I feared nights alone without him—he could visit in the day, but the hospital had no cots, so he wouldn’t be able to sleep comfortably in my room.
I also had a deep psychological barrier to being hospitalized. I feared what going to the hospital would mean for my illness, which had been diagnosed two years earlier. It felt as though staying overnight in a hospital would mean I was “officially” very sick. Since diagnosis, I had wanted to be independent, someone who could conquer my colitis with minimal conventional medicine.
Admitting myself to the hospital would mean admitting I had failed. That I had a real disease, and that I needed conventional medicine to make me better.
But aside from those emotional reasons, I had another, more practical fear about the hospital: I believed it would make me sicker. This fear was justified.
Ever since my diagnosis with colitis, conventional medicine had proven to be dangerously ignorant about one aspect of my disease. Gastroenterologists had consistently dismissed diet as a key to my healing, even though this contrasted with all my personal experience.
My first GI doctors had failed to mention diet until I asked them about it, and even then, they discussed it only in the vaguest of terms. My third GI doctor had signaled general disapproval when I’d embarked on my diet experiments. All those doctors made me feel as though, if I opted to tinker with my diet, I’d be completely on my own.
Dr. L, my current doctor, was equally uneasy with diet as a therapy for IBD, despite the fact that by now, I had years of hard evidence of diet’s importance to my gut. I once showed him charts matching my diet to my symptoms, but he was only mildly interested.
All this disinterest and disapproval led me to believe that conventional medicine would continue to ignore this crucial element of my wellbeing. If I checked into the hospital, I’d be at the mercy of the kitchen there. I had heard that hospital food was subpar in general, and I had no confidence that my gut could heal in such a place.
And so, despite my alarming situation, I believed that my reliance on diet meant that in the hospital, I’d be in greater danger than at home.
Still trying to persuade me to go, my mom pointed out that I needed IV electrolytes for my dehydration. In the hospital, I could get them. After much back-and-forth with her, I finally came up with a compromise: I could go to the ER, get an IV for a few hours, then return home.
She agreed. Soon she was driving me there, pain shooting through my abdomen with every small bump on the road. She found a wheelchair and wheeled me to the ER, since I was too weak to walk that far. I lay on a gurney in the waiting area till my name was called. Within a half-hour, I was in a thin hospital gown and an IV was sending electrolytes into my vein.
Although I didn’t stay overnight on this ER visit, being in the ER began to normalize the hospital for me. I was still afraid of the place, but later, when I would finally check myself in, I would feel more comfortable because I’d been here before.
But it would be weeks before that happened.
It was in this first ER visit that I learned I had pancolitis.
For the past couple of years since diagnosis, I’d only had ulcerative proctitis, the mildest form of my disease with the least-extensive reach up the colon. In twenty-five to thirty percent of cases, proctitis eventually spreads upwards, progressing to left-sided, transverse, or even pancolitis. The latter is the most extensive—pan refers to coverage of the entire colon.
No one knows why progression occurs. I suspected, though, why mine had occurred: I’d gotten lazy about diet and self-care this spring, which was what I believed had caused this flare.
I wasn’t surprised at the pancolitis news. We learned it when a doctor came to tell me and Mom the results of a recent CT scan and said my entire colon was inflamed. I knew instantly what it meant. I guessed that I had pancolitis; he said yes.
Now I understood why Proctofoam, my usual flare-up med, hadn’t worked for this flare. Proctofoam only reaches as far as the rectum, and that had been effective when my disease had stopped there, but it did nothing for the rest of my poor, inflamed colon now.
The IV fluids and electrolytes I got on that hospital visit didn’t help much, at least on the surface. Leaving the ER, I felt exactly the same as before, although presumably they’d helped me internally. I went home, again enduring the pain of the drive, and resumed my unending misery.
I returned to the ER sooner than expected. The following day, I had my first-ever pain crisis when cramping on the toilet left me literally screaming in pain. Mom rushed me to the hospital again, and for the second day in a row, I found myself hooked up to an IV. This time I was given Dilaudid, one of the strongest opioids. Within minutes, my pain had subsided.
Even so, I still didn’t want to be admitted to the hospital. Ron arrived and drove me home; I returned to my convalescence.
Ron agreed that the hospital diet would be bad for me. He’d seen firsthand how much diet affected me, so during this flare, he was diligently cooking the macrobiotic food that had always helped me before. He spent hours cooking it every day, exhausting himself in the process, and brought it to me on trays.
We’d started living at Mom’s house, and I was confined to her guest room and upstairs bathroom, since I was too weak to navigate stairs. Every hour or two, I rushed to the toilet and suffered through long bouts of pain, often crying out as I breathed. Each afternoon, I was visited by the terrible, burning pain that I would later understand to be an undiagnosed C. diff infection. It was an acid-like searing just beneath my solar plexus. I’d been given Norco (hydrocodone) for it, which helped, but it still took all my strength to breathe through it.
Most of the time, whenever I wasn’t on the toilet I just rested and sweated, a heat pack pressed to my belly. My feet were slowly swelling from lack of circulation.
We remained in this miserable holding pattern for two and a half more weeks after my first trip to the hospital. We were waiting for my latest meds to kick in, hoping that the meds and my macrobiotic diet would work their magic. We didn’t know that C. diff was preventing anything from working.
As all this was happening, a deep-seated fear was growing within me. Through the fog of my pain and exhaustion, I began to sense that my life was in danger. I’d been around death and terminally ill people before, and I felt its possibility for myself now. It terrified me.
What finally persuaded me to go to the hospital was the calm, clear recommendation of Dr. L. One night, I discovered that I was down to one hundred and five pounds, seventeen pounds lighter than I’d been when this flare had begun six weeks earlier. It was nighttime; I left a message with Dr. L’s nurses to let him know.
While losing seventeen pounds isn’t uncommon in IBD flares, it was especially worrisome for me because I’m naturally thin. At five foot nine, I’d had little weight to lose when this flare had begun. I’d only had the energy to shower a couple of times in the last few weeks, but I was growing alarmed at my own appearance—my arms and legs were frighteningly gaunt.
A nurse called back soon with Dr. L’s recommendation that I admit myself to a hospital. Although I was still afraid of the hospital at this point, I was now also afraid of my weight loss and my situation in general. The macrobiotic food at home was clearly not working. It was time to surrender. I checked in the next evening.
By now the ER had become familiar, which helped. Ron was at my side with our overnight bags—he was going to try sleeping here with me somehow.
It took a couple hours before a room was ready for me, so by the time they wheeled me there on a gurney, it was the middle of the night.
To my great relief, I had my own room and bathroom. I could make my many trips to the bathroom with some measure of privacy, could control the TV and whether the lights were on, and could sleep more easily than if I’d had a roommate.
Ron settled into the recliner next to the bed, laying the chair as flat as possible, and we were both given warm blankets. We spent the night fitfully, with me dragging my pole to the bathroom every time I had to go and with nurses and nurse techs often interrupting our sleep.
Still, except for my crushing fatigue, I discovered I was more comfortable here than I had been at home. Along with more fluids and electrolytes, they had started me on an IV steroid called Solu Medrol, and it was more powerful than the oral prednisone I’d been taking. My discomfort seemed to be lessening somewhat.
And so far anyway, I felt safer here. In my hospital bathroom, I found the emergency pull cord immensely reassuring. For weeks, I’d been worried about life-threatening complications; now life-saving people and resources were right down the hall.
In the morning I sent Ron home. Being away from him had been one of my biggest worries about being here, but during the night, I’d quickly realized that sending him home was the lesser of two evils. I’d found it impossible to sleep with him next to me.
I was worrying about him the whole time. Every time I arose to use the toilet, I’d had to call the nurse, because she hadn’t yet determined that I wasn’t a “fall risk” and was required to monitor me when I walked, which meant the lights had to come on. I knew Ron was awakened each time, though he pretended not to be. I felt terrible for putting him through this.
After caring for me for months, Ron was almost as exhausted as me. I resolved to get over my fear of being alone here. Being alone would be better than forcing this on him, and better than worrying about him.
Alone after he left, I soon met the “diet host,” a friendly man who brought in a glossy breakfast menu that looked like something from a restaurant. I anxiously described my biggest restrictions: I couldn’t have sugar or sweeteners, and also hoped to avoid dairy. To my surprise, he said the pancakes here were made from scratch without sugar. The syrup could be left off; I could eat them with applesauce, which was also sugar-free. I could have scrambled eggs for protein.
Although this meal wouldn’t be macrobiotic, it wasn’t the processed, sugary food I’d been expecting. To my further surprise, he said he would put a note on my chart that I was to have no sugar or dairy, so that future diet hosts could help me find meals that were relatively safe. I felt utterly relieved.
All morning, various specialists came in and out of my room. A phlebotomist took my blood. My night nurse introduced me to the day nurse, who gave me my meds. A GI doctor introduced himself. Another doctor, the hospitalist, arrived separately and explained he was in charge of my general care, aside from my colon. He prescribed an echocardiogram after hearing what he thought was a heart murmur; the test occurred soon afterwards and, thankfully, revealed nothing.
Then my nurse came back in to announce that I needed two blood transfusions. My blood draw had revealed that I was dangerously anemic. It was the blood transfusion, especially, that convinced me Dr. L had been right.
I needed to be in the hospital. At home, I hadn’t known I was anemic, or that I had a heart murmur. I hadn’t had access to IV steroids, or to stronger painkillers if I’d had another pain crisis. Here in the hospital, I was being monitored closely, my blood drawn, my blood pressure taken, doctors checking in, nurses tracking my meds.
The food wasn’t nearly as bad as I’d worried it would be. And even if it had been, I could see that I was safer here than at home.
I vowed that if anything like this crisis ever happened again in the future, I would come to the hospital much sooner.
There are two lessons to be gleaned from this story. First, as I’ve written before, GI doctors must begin talking to their patients about diet. My fear of the hospital was born of my doctors’ dismissal of a critical aspect of my care. That dismissal forced me to depart from the medical establishment and undermined my trust in it. Such mistrust puts patients in danger—my long, dangerous delay in admitting myself is a perfect illustration.
Second, IBD patients should know that there is danger in delaying hospitalization. Although it’s hard to manage your diet in the hospital, the benefits of checking in will often outweigh the benefits of staying home.
Flares themselves can be dangerous. Severe flares can lead to anemia, extreme dehydration, colon perforation, and other life-threatening complications. In the hospital, you’ll be closely monitored by professionals, and support will be on hand if anything goes wrong.
After finally getting over my fear, I soon discovered a feeling of relief in the hospital. My family was getting a break, and I was safer than before.
