After months of being dangerously ill with ulcerative colitis, my doctors urged me to try biologics. These relatively new treatments, which include Remicade, Humira, and Entyvio, work wonders for many IBD patients. (They’re also used to treat other autoimmune conditions, such as rheumatoid arthritis and psoriasis.)
But despite my doctors’ urgings, I was balking.
I had a history of balking. For years, I had tried as much as possible to heal through diet and lifestyle, not meds. I’d had modest success, finally getting into remission with a macrobiotic diet, probiotic foods (sauerkraut and kefir), and a single, mild med called Apriso.
But then I had slipped, getting lazy with my diet until my colitis flared worse than ever before. When I’d developed a C. diff infection on top of the flare, the combination of the two had put me in peril. By now, I had been in the hospital for over three weeks and had lost more than thirty pounds.
The C. diff had finally been identified and had probably been treated, although we were waiting a few extra days to be sure. I was left with “only” the colitis flare, which was still sending me to the toilet upwards of twelve times a day. Apparently, my intravenous steroids (Solu Medrol) and immunosuppressive drug (Imuran) were still not working. Something more was needed to combat this flare.
Biologics were the only form of treatment we hadn’t yet tried.
Like immunosuppressive drugs, biologics interfere with the normal immune response, leaving patients more vulnerable to infections and illnesses and slightly more at risk for certain kinds of cancer. They can also damage the liver and other organs. All of this made me nervous. I’d been hoping my current immunosuppression, from Imuran, would be temporary.
I’d imagined I would go off Imuran when this flare was over. But biologics required more commitment—once you’re on one, it’s not advisable to go off it again until it stops working, because the process of going off it can cause the body to develop antibodies to it.
With most drugs, like Imuran and prednisone and others I had tried, this isn’t true—you can go on and off them without problems. But with biologics, the process of going off them can render them ineffective in the future. That means the biologics you’ve ended may be eliminated from your future arsenal.
And when biologics don’t work, or when you’ve run out of the ones that once did, the only remaining treatment for my disease is to surgically remove the colon.
So if you’re going to go on a biologic, it’s best to commit to it. But I was afraid to commit to a strong, risky drug for years—I didn’t want to make that commitment unless absolutely necessary.
I told the doctors my fears about long-term immunosuppression. They told me I wouldn’t have to completely isolate myself from the world on biologics; I wouldn’t be as immunosuppressed as cancer or organ transplant patients. “We don’t want you to live in a bubble,” they said.
But I would need to be careful: to avoid being around sick people and avoid potential sources of infection, like kitty litter. This need for vigilance worried me.
It was my gastroenterologist, Dr. L, who finally convinced me to try biologics despite my fear.
He visited me in my fourth week in the hospital. He didn’t have rotations there, but he’d been following my case closely and one day he swung by to check on me himself.
When he opened my door, I broke into a smile of surprise. I had always liked him, and it was wonderful to see a familiar face.
He listened as I gave him an update. I was finally regaining some weight despite frequent bowel movements, I said. I still might have C. diff, or this could be just colitis. If it was simply colitis, I went on, I was hoping to first build up my weight on my current hospital foods, then go back to my anti-inflammatory diet and see if it could finally control my flare once the C. diff was gone.
He looked concerned and focused, giving little nods as I spoke. He didn’t react one way or another when I mentioned the part about diet.
When I finished, he spoke in a quiet voice. “I agree that this could still be C. diff, so we do need to rule that out first. But once we get that figured out, assuming it isn’t C. diff, I feel strongly that it’s time for a biologic. At this point, your other medications are failing your flare. The steroids and Imuran should have started working by now.
“I don’t like seeing you in this condition,” he went on, his voice small but authoritative. “We need to get you healthy again. It’s time to get you out of this flare.”
There was something about hearing all this from Dr. L that made me feel as though a spell was breaking. When other doctors had urged me to try biologics, it had seemed more forceful, as if I’d had no choice in the matter or was stupid to argue. But this time felt different.
The difference was that I trusted Dr. L. By now, he and I had years of history. He knew me and respected my philosophy about my disease, and I knew he respected it. After years of working with me, he had a good sense of what my body responded to.
If he thought biologics were right for me, that carried significant weight—much more than the opinions of doctors who didn’t know me at all.
Dr. L didn’t believe that food, alone, would ever get me out of this flare. He was convinced I needed meds. Thinking his words over, I had to admit that I had never gotten into remission without some sort of med in addition to diet. And right now, my meds weren’t working. At all.
As he spoke, I felt my brow smooth and my shoulders relax. A quietness came over me.
Perhaps my resistance had been crumbling already, after so many urgings from other doctors. Perhaps, in my weakened state, I no longer had the strength to keep resisting, or had reached the limits of my capacity to endure this physical struggle. And I definitely wanted to end the suffering of my husband Ron and my family, who had been taking care of me, visiting me, and/or worrying about me for months.
I saw now that I’d been trying so hard to avoid biologics that I’d become willing to tolerate the intolerable. Twelve painful bowel movements a day and ongoing hospitalization had become my new norm. But Dr. L’s little speech made it sink in that with each passing day, my colon and my whole body were being racked with ongoing trauma that carried its own significant risks.
Staying this inflamed, staying in the hospital, staying too weak to care for myself—all of these needed to end as soon as possible. My body needed a break. So did I. So did my family.
I found myself nodding as Dr. L spoke. No one else had persuaded me, but he could.
My diet plan would have taken months: weeks to first get up to a safe weight, if I could at all, then more weeks after that to change my diet. Suddenly it all just seemed like too many weeks. Ron’s school year would start up again in less than a month. His whole summer vacation had been spent on my illness. After he went back to teaching, who would care for me?
Dr. L and I agreed that we’d wait a few more days to rule out C. diff. But after that, I would start biologics.
I smiled up at him wearily. “Did the other doctors send you here to finally persuade me?”
He shook his head, confused, and gave a little smile. “No. I just wanted to see you.”
The next day, I was given a flexible sigmoidoscopy to see whether my C. diff was truly gone. The flex sig was performed by the same empathetic doctor who had diagnosed the C. diff, since she would most readily be able to compare my condition now to what it had been weeks ago.
She now gave me the all-clear. My colon was still grossly inflamed, but there were no signs of bacterial infection. It was time to go ahead with biologics.
I was given a blood test to make sure I was eligible—if you happen to have dormant tuberculosis in your bloodstream, you can’t do biologics. It would be a few more days till the test result confirmed I was a candidate.
Those few days turned out to be my most pleasant in the hospital. I was far more comfortable than before, now that my searing C. diff pain had subsided. My appetite, which had disappeared during C. diff, had returned with a vengeance and I was gaining around a pound a day. I began to regain a little strength, enough to go for slow, shaky walks. I took my first shower in many days, which I could now do while seated on the bench in my hospital bathroom. I even began some light PT to rebuild my wasted muscles. Basic movements, like raising my arms over my head, had become a challenge.
As the days passed, I thought about what it would mean to start a biologic. All biologics are taken via needles, either through self-injection or through infusions at an outpatient clinic. I hated the way this would make me feel tethered to hospitals and doctors even more than my daily pills already did.
I was worried about travel. Now that having children was sliding further out of reach as my late thirties slipped away, I’d been clinging to the idea of traveling with Ron as we aged. Travel was something I’d loved all my life; the two of us had met in the Peace Corps in Tanzania. As we’d prepared to have children, I had fretted over the way kids would make it harder and more expensive to travel, and often, lately, when I mourned our ability to have kids, I comforted myself with the thought that at least we could travel more easily without them.
But being permanently immunocompromised would make it riskier to travel back to Africa, where I most wanted to go. And self-administered injections must be kept refrigerated, which is nearly impossible in many areas of the developing world.
I’d been given the choice between Remicade and Humira, and I opted for Remicade after thinking all this through. Humira is self-administered, whereas Remicade is taken via infusion. If I was lucky and Remicade worked well, I’d only have to get an infusion every eight weeks. You can do a pretty great trip to Africa in eight weeks, I reasoned.
I’d just have to hope that, even with my immunosuppression, someday it would be safe enough for me to go.
Another worry I harbored was biologics’ ability to mask my symptoms. I had always wanted the mildest meds possible, because I wanted to understand which diet and lifestyle factors might be triggering my disease. I didn’t want to just suppress the inflammation in my colon; I wanted to stop triggering it altogether.
With my immune system permanently disabled, how would I ever know whether I was still eating or doing things that harmed me?
As I thought this out, though, I realized that this worry need not consume me. So far, no meds had been able to fully mask the effects of my diet and lifestyle, not even prednisone. That actually might be a good thing.
Biologics could hopefully get me comfortable again, but I doubted they alone would be able to bring on full, permanent remission. I would still be able to hear my body’s twinges, still stay in tune with its ups and downs.
I strongly believed that restoring my microbiome was key to getting truly better. Biologics shouldn’t interfere with that at all. There was nothing stopping me from restoring my gut health while on Remicade.
The more I thought about it, the clearer it seemed that going on biologics would change nothing about my approach to healing. No matter what meds I was on, as soon as I regained enough strength and got out of this hospital, I would be eating foods I believed would restore my gut.
Someday, God willing, I might even bring myself into long-term remission—not just a “false” remission from drugs, but a “true” remission, with my body fully healed. And if I ever felt confident that that had happened, I could then consider stopping the drugs.
But for now, I needed Remicade. I couldn’t heal my colon if I lost my colon to surgery. And I couldn’t heal my colon if I died before I got the chance.
My first experience with Remicade was anticlimactic after all the fuss about it. I was given Benadryl and Tylenol to ease my body’s potential reaction to it, and I signed some consent forms, but in the end it was just another innocuous-looking bag of clear fluid pumping steadily into my veins, like the IV fluids and steroids I’d been taking all through my long hospital stay. I felt no side effects.
Assuming it worked, this little bag’s presence marked my transition to long-term reliance on this new drug. I was officially committed to biologics, at least for the time being.
