When the Trial Doesn't Have an End Date

Snapshots of life with ulcerative colitis

“Have you done this before?” the lab tech asked as she handed me the bag filled with supplies.

“Unfortunately, yes,” I said with a small smile. I tucked the bag against my side and quickly left the lab, hoping no one could tell what I was carrying. When I got to my car, I had to laugh because the letters emblazoned on the side of the bag left no doubt as to what would be in it when I returned¹. That didn’t stop me from concealing it inside another bag and clutching it to me when I came back to the lab the following day with my “sample.”

It might as well say, “WARNING! Gross things inside.”

I have lost count of how many times I’ve had to collect a stool sample or had a colonoscopy, but it’s a lot. These tests are unfortunately par for the course for me. They help the doctor determine if my course of treatment is working or if my disease is active and/or progressing. The past few weeks have been challenging as far as symptoms go, and when the nurse practitioner told me at my latest appointment that I needed to do another stool test, I just sighed in resignation.

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I slowly opened my eyes, groggy from the anesthesia, and saw my mom sitting beside my hospital bed.

“Did they figure out what’s wrong with me?” I asked her desperately.

My mom said that yes, the doctor had determined that I have ulcerative colitis, an autoimmune disease that causes inflammation and ulcers in the large intestine. The only “cure” for ulcerative colitis (what I’ll henceforth call UC) is removal of the colon and rectum, but medications can reduce inflammation and hopefully induce remission. In the 13 years since then, I have had long stretches of both remission and flare ups. It has mostly been completely unpredictable as to when either of those things occur, which is maddening for someone (me) who likes to plan ahead.

The early days of my diagnosis were both a relief and a horror. I was relieved to know the cause of the illness that had left me almost completely incapacitated and unable to do much besides lie in bed and make dozens of trip to the bathroom², but I was horrified to learn that there was no medical cure besides surgery and that I would have to live with this disease for the rest of my life. I had just turned 31, and all of a sudden I went from a mostly carefree existence to one marked by pain. My feelings were complicated by the fact that UC comes with symptoms that most people don’t talk about in polite company, which only made me feel isolated and alone. But having an answer to the suffering that had debilitated me was comforting, and during the week I spent in the hospital I was blessedly aware of the Lord’s care and comfort. Despite my fears, my faith was bolstered by how close I felt to the Lord. I knew He would take care of me.

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I arrived at the park excited to begin my walk. I had recently begun a 100-day walking challenge, and I relished being able to take the time to go to a nearby park and walk there instead of making the same tired loop around my neighborhood. The sun shone brightly, there was a light breeze in the air, and signs of spring dotted the landscape of the park. I smiled to myself. It was going to be a good day.

However, less than ten minutes into my walk, I felt a familiar cramping in my stomach that told me I needed to get to the bathroom. Fast. When UC flares, the urgency of finding a bathroom is at its peak, and I have had several close calls over the years as well as one accident in the middle of the night when I didn’t make it in time. Picking up my pace, I sprinted to the public restroom and sighed with relief when the single stall was not occupied. I didn’t want to think about what would have happened if it were. I ended up cutting my walk short that day, having to stop in the bathroom again. The beauty of the day felt spoiled, as it had so many times in the years since my diagnosis. Why couldn’t I just go for a walk like a normal person? I missed the days of not having to locate the bathroom immediately upon entering a new place.

As I drove home, I felt anger brewing inside me. This recent attempt to begin walking was driven by several factors, one of them being the desire to foster some healthy habits for myself after several years of surviving depression. Why was I immediately met with obstacles when doing something that was good for me? Why was my body always rebelling against me?

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This May, as the time got closer for us to leave for our family vacation to the beach, I looked at pictures from our last trip to fuel my excitement (not that I needed it; I was plenty excited without the visual reminders). Then my heart seized up as I saw myself in the pictures we had taken with the tripod on the beach 2 years before. My face bore physical signs of the weeks-long steroid regiment I’d been on to try and control a flare: the “moon face” was in full effect, my already chubby face now even more rounded and swollen from the medicine. I remembered how emotionally trying that time was because not only was I dealing with physical symptoms of UC, I was also dealing with the insecurity that was heightened by my undesirable physical appearance. It seemed so needlessly unfair that medicine meant to help me also harmed me (and more so than just altering my face: steroid use brings with it increased appetite, irritability, and insomnia).

Same beach, same person, 2 years apart.

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The other night, I laid in bed trying to sleep but was unable to due to pain in my abdomen that felt like my insides were being twisted. I was on the verge of feeling sorry for myself as tears formed, and I didn’t fight their flow. But instead of grumbling to myself, I took my complaint to the Lord. Earlier in the day I had been reminded of the words to a hymn, “I Must Tell Jesus,” which declares the importance of telling Jesus everything because we aren’t able to bear our burdens alone. Jesus has to be my refuge, for He knows all and sees all and loves me intimately, and He “ever loves and cares for His own.” So I told the Lord everything I hated about my current situation, everything I hated about this disease that was always hanging over my head. I told Him I was scared, that I didn’t know if I’d one day be without a colon, that I was frustrated with medication changes and insurance denials and using up all my sick time at work. I ended with the prayer that I pray almost more than anything else, “Please help me. Please remind me you love me.”

The next morning, I woke up with a song in my head, as I often do. My first conscious thoughts were lyrics from Jon Guerra’s song “I See the Birds”: “Don’t you worry, child/ Don’t you worry, child./ He won’t leave you by yourself,/ In times of trouble He’s your help.” In spite of everything, I smiled, knowing that the God who spoke the universe into being was speaking to me through these lyrics from a song based on that beautiful, familiar passage in Matthew 6:25-33:

²⁵ “Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? ²⁶ Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? ²⁷ And which of you by being anxious can add a single hour to his span of life?^{[g] 28} And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, ²⁹ yet I tell you, even Solomon in all his glory was not arrayed like one of these. ³⁰ But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? ³¹ Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ ³² For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. ³³ But seek first the kingdom of God and his righteousness, and all these things will be added to you.

I said, “Okay, God, I hear you. Help me not to be anxious about my life. Thank you for loving me even more than the birds.” Thus far, praying hasn’t healed my UC. The Lord has not seen fit to heal me in that way, and I trust Him. But praying has been the means by which the Lord has strengthened me when I had no strength left, and it’s kept me close to Him even when I wanted to keep my distance instead.

The thing about living with UC for 13 years is that, as hard as it’s been at times, it’s also incredibly easy to trace the Lord’s care and kindness to me through all of it, from the awful 7-hour wait in the ER with my mom in 2012 up to my current flare. I vacillate between varying stages of acceptance and hatred of UC, sometimes barely remembering the disease when my symptoms are controlled and other times cursing it with my every breath. No matter how I feel on any given day, I’m always hyperaware of the location of every nearby restroom, and while I love a good road trip, the fear of needing to stop when there’s nowhere to do so accompanies me every time.

Ulcerative colitis has made some things about my life uncertain, but this I do know for certain: my Father is faithful and true, and if I’m not healed in this life, I rejoice in the promise of healing in heaven. As Glenna Marshall says in her newest book, Praying in Pain³, “Suffering now. Glory forever.” Amen.

1. But in case you’re still not sure, it’s poop. Poop is what was inside. There are lab tests that measure the level of inflammation in the gut based on a stool sample. Bless those poor lab techs! (And I know there are other types of “specimens” that can be collected, but this is my lot.)

2. All my flares don’t feel this extreme, praise God.

3. If you have a chronic condition, you need this book!