The Inexplicable Pain
Or, how I learned to bargain with my chronic illness
Crohn’s disease snuck up on me. It was a gradually creeping shadow that I didn’t notice until it had already enveloped me entirely. Before my diagnosis I had developed the belief that everyone was always in some sort of pain and that what I was experiencing was normal. For context: at that point, I was never not in pain. Every morning I woke up with pain in my gut. I mostly skipped breakfast and subsequently attended my university lectures with a constant gnawing in my stomach. I suspected that I may have food allergies and half-heartedly tried cutting out soy, wheat, and dairy, still believing that my pain was normal. The first time someone asked whether I was in pain I said yes, but that it was normal, like everyone else. My disbelief was great when she informed me that most people went about their days without any pain.
Looking back, I can remember the first time I experienced Crohn’s-type pain. I was in my second year of studying social work and living with three other women. We’d had vegetarian burgers and afterward I was in agony — hence my belief that I had soy intolerance. From that evening, it took five years for my symptoms to progress to the point where I sought help. It took another year for me to be diagnosed.
The process was pretty horrifying. I had moved from Cape Town (my home city) to the Netherlands for further studies. I was isolated without family nearby and with few friends. I went to see my general practitioner when I realized that the pain may not be normal. He informed me that I had acid reflux and sent me home with a proton pump inhibitor to reduce the acid in my stomach. It did nothing. When I returned three weeks later with more severe pain, the doctor told me I had to be patient and to change my eating. And so I was and did. I stopped eating anything that seemed to exacerbate my pain, which left me with white rice, white bread, and tea. Still, there was no improvement.
About six months later, during a trip home to South Africa, I spent a weekend away with my best friend, Rachel, and her parents on a farm in a rural area. On our first night there I felt the start of the familiar pain in my gut after dinner. I took some antacid meds, went to bed, and hoped for the best but instead of subsiding, the pain grew worse. Realizing that it wasn’t going to ease up, and not wanting to wake Rachel, I moved to the lounge and spent the night in extreme pain trying to focus on my book. In the morning Rachel’s mom, a gastrointestinal nurse, found me curled in a ball on the couch, still awake and still in pain. I told her that this was normal. She maintained that it was not. The family consulted. The family threatened to take me to the hospital, an “easy” two hours away. Not wanting to ruin the entire weekend, I convinced them that I was fine and allowed myself to be medicated and fed plain white rice instead. At least I was in good hands. I promised Rachel and her mom that I would get a second opinion once I was back in the Netherlands.
After my holiday, I changed doctors and explained my symptoms again. He immediately referred me to a gastrointestinal specialist. She was not a warm person, but she was persistent. I went through test after test with absolutely zero answers. I was a hospital novice at the time and felt completely at sea by myself in a country where I had to communicate in my second language.
To add to the perpetual medical test stress, I was also dealing with needle phobia. A few years earlier I had decided to be brave and get the HPV vaccine. Unfortunately, my usual doctor was out of town and his locum was unaware of the severity of my fear. After instructing me to roll up my sleeve he started detailing his actions: “I’m taking the needle out of the packaging now, but first I will swab the area of your arm with some alcohol”. Before he could start another sentence, I was hiding underneath his desk. A solid wooden desk with large drawers. Much safer than being out in the open where there were needles. Despite his gentle coaxing, I was unwilling and unable to get out from under his desk. He handed me a pillow to hold and let me stay there until I felt better. From that incident things did not improve and the frequent blood draws were traumatic every time.
The blood tests showed that the inflammation markers in my blood and stool were slightly raised, but that wasn’t really cause for alarm. My iron was very low for no apparent reason. An MRI showed nothing. A colonoscopy and upper endoscopy showed no signs of inflammation. A barium x-ray showed something, but they weren’t sure what it was. At this point I had been undergoing tests for 9 months and I was exhausted. I was trying to finish my bachelor’s thesis and deciding whether to apply for a competitive research master’s or an automatic entry clinical program. In the end I decided to take six months off. My body had become an evil queen ruling my every decision. I was no longer able to choose what I ate, my body forced me to eat rice. I was no longer able to choose what I did, my body forced me to nap. Even thinking was no longer a choice, as my brain felt foggy most of the time. Instead of studying or reading I watched hours upon hours of TV shows (though I can’t say I didn’t enjoy all 8 seasons of Doctor Who). I felt isolated. I was in a foreign country and my sick body even further removed me from others. Blossoming friendships faded as I wasn’t able to leave my house for longer than an hour or two. Every day I had to plan with my bowels, not my brain. I found it difficult to explain to others what was wrong with me as I had no idea myself.
During one appointment, my GI specialist suggested that my symptoms may be related to my mental health (I had been struggling with anxiety) rather than anything physical. I started to sob. She was not kind about it. She referred me to a psychologist but also suggested more tests because she was concerned about my unexplained iron deficiency. I was ready to turn her down and refuse further tests. I had been inspected from every angle. I’d had blood drawn so frequently that I was even beginning to tolerate needles despite my extreme needle phobia. I felt exposed, misunderstood, and absolutely, completely exhausted. But she persisted and, more gently this time, suggested one last test.
I had a video capsule endoscopy a week later. For this test, I swallowed a tiny camera the size of an amoxicillin tablet and walked around the hospital with a moonbag filled with wires. The tiny camera recorded 12 hours of footage from my mouth, through my stomach, small intestine, large intestine, colon, and out… During my rather boring day in the hospital I spoke to women receiving dialysis in the same ward as me and felt relieved and ashamed that I wasn’t one of them. That I didn’t have to spend a day every single week tethered to this hospital. At the end of the endoscopy, having not been allowed to eat for a day and a half, I allowed myself foods that I hadn’t eaten in months. A cheese burger. A beer. Sweet potato fries with mayonnaise. I spent the next day on the toilet in complete agony, but I did not regret that incredible meal.
I didn’t hear from my doctor for three months. The only person who was qualified to watch 12 hours of footage of my intestines was on prolonged sick leave (how could I be angry?). On a Friday afternoon in spring I got a call from the hospital. Without preamble, my doctor informed me, bluntly, that I had Crohn’s disease. She said that she’d sent a script for prednisone to the pharmacy, that I should start taking the meds immediately and see her again in three weeks’ time. I didn’t know which questions to ask. I’m not sure I really said anything beyond “okay” and “thank you for calling”. I had been standing by my bedroom window at the time, looking out over the busy street and busy canal in front of my house as she spoke.
After she hung up, my knees gave way underneath me. Everything blurred. I sat on the floor and wept. Even though I had no concept of how devastated I should be at this diagnosis, I knew it was the worst-case scenario. I called Rachel and told her in a sobbing whisper. With a tiny glimmer of positivity, she reminded me that I now knew what was wrong with me, that there were treatment options, and that she would be there on the other end of the phone for as long as I needed her.
I desperately want to say that things got better after my diagnosis, but they didn’t. Prednisone is the devil in tablet form and it wreaked havoc on my body and mind and seemed to do nothing for my symptoms. I was always hungry and always angry and I was utterly miserable. Three months into the prednisone I started on an immunosuppressant called azathioprine. Aza (as it’s lovingly called by those in the know) suppresses your immune system so that your body stops attacking itself. Unfortunately, suppressing your immune system also makes you more susceptible to a range of other things like flu, cold sores, and chest infections. For me the worst was the never-ending nausea. I went from eating everything in sight to not being able to tolerate any food at all. I started losing weight dramatically, going from a healthy 58 kg to 47 kg in a couple of months. At first I got compliments and people asked me how I was losing the weight (I joked that it’s easy, you just have to stop eating!), but after a while I looked frail and gaunt.
I stubbornly decided that I would not succumb to this illness, so I applied for the research master’s program and was accepted. I also got an internship position at a clinical research centre in Amsterdam, where I would be working on a research project assessing deaf and hard of hearing children. I was thrilled at the opportunity. I was determined to do everything as I normally would, but soon learned that public transport and Crohn’s disease don’t mix. My commute started with a 5-minute bus ride to the station, followed by a 40-minute train ride from Leiden to Amsterdam, and then a 15-minute tram journey to the research center. The tram trip proved near impossible as the stop-start jerking motions sent my nausea into overdrive. I considered walking, but I was too weak and too tired. So to stop myself from vomiting on the tram, I would get off at every stop and wait for the next tram. The 15-minute trip turned into an hour. By the time I got to the research center, an hour and forty-five minutes later, I was exhausted and unable to concentrate. But I kept trying. I did this stupid journey twice a week for six months.
One morning, after vomiting into an elderly woman’s rose bushes, I decided that I’d had enough. My GI doctor had urged me to give the Aza a proper chance but I was done. Sitting on the sidewalk, waiting for my next tram, I called her offices full of fire. She wasn’t in and wouldn’t be for the rest of the week. My fire was put out and I cried. I couldn’t make sense of any of it. It felt like the medication supposed to treat my disease was making everything worse, not better. I felt completely hopeless, like there would never be any improvement. I was still in constant pain and now I also had nausea and perpetual colds to contend with. Five-hundred meters from the research center I sat on the pavement and called in sick. It was the first time that I had missed a day of work because of my body. I went home, put myself to bed, and stayed there for a week leaving only to make rice and tea.
I realized that I couldn’t keep trying to live as though I was healthy. Being stubborn was okay, but sabotaging myself to prove it was just wiping me out faster. Slowly, I started adjusting. I spoke to a psychologist and together we starting working through my anxiety. I found a doctor who took my side effects seriously and I brought a friend along to ask the questions I couldn’t even think of. I put the research skills I was gaining in my master’s program to use and started reading journal articles about Crohn’s disease, what causes it, and what the treatment options are. I reached out to my friends and told them what I needed, asked for support. I shifted my mentality from “this cannot be happening to me” to “this is happening and it’s not the end of the world”. Crohn’s disease would not be conquered but better treatment and understanding taught me that I could still have a positive relationship with a body that had betrayed me. Since then, I’ve managed to integrate Crohn’s disease into who I am without it becoming the only thing that I am.
I won’t try to convince you that being sick has made me a better person or turned my life into some inspirational story. Being sick sucks. My Crohn’s cannot be cured. If I could choose, I would choose a life without a chronic illness. However, Crohn’s has made me passionate about learning how our bodies work and has given me a better understanding of what others with chronic illnesses go through. It’s made me empathetic toward other hospital novices who don’t know what to ask their doctors, who are tired of being poked and prodded, and who feel entirely at sea.
My passion for understanding Crohn’s disease and how it affects sufferers’ lives is why I joined the mission at GutAI. It’s a simple disease management platform for Crohn’s disease patients. Private beta released last week. If you are a Crohn’s disease patient, we would love your feedback. You can sign up here. You can also read our founder’s story here.
