I distinctly remember being wheeled back into my room. One of my best friends showed up and had been waiting for me to return from my CT scan.
It was 1:00 o'clock in the morning and I’d been in the emergency room for 10 hours, getting test after test run. When the doctor walked in and gave me the news, I had to swallow my tears and remind myself to breathe.
My worst fear came true: all the tests came back normal.
August of 2016 I woke up in the middle of the night having severe left sided abdominal pain with diarrhea. By severe I mean it felt like someone sliced me open with a knife and a bear was having a grand old time chewing on my organs. I don’t know why that became my explanation of it (like where did the bear even come from) but it was the only thing I could say to make people understand the level of pain I was in.
About a month later it happened again, so I went to see a gastroenterologist (GI doctor). He began the conversation by asking me if I was sure “it wasn’t just cramps?” I should’ve walked out of that office right then. He continued the conversation, making it mostly about how I was “too young” to be having these problems. He gave me the diagnosis of post-infectious irritable bowel syndrome (IBS) and sent me on my way. I accepted his opinion and just hoped I would heal in time.
I continued through the rest of that semester. Some days I was fine, others I was in paralyzing pain that was so bad I worried I was going to pass out. They performed CT scans, stool samples, urine cultures, even a colonoscopy and everything came back completely normal. I was dismissed and told it would get better on its own, left alone to deal with the excruciating pain.
Spring semester rolled around and the episodes kept getting more and more painful. I tried taking probiotics and fiber every day. I began following the FODMAP diet religiously in hopes it would alleviate my symptoms. I began seeing a GI doctor at one of the best hospitals in the country, hoping for some type, any type, of answers. She gave me a bunch of different IBS medications to try. I don’t know if any of it worked or if it did for just a short period of time. At the end of the day, nothing was able to stop these episodes from occurring.
I was a nursing student, and I was educated on this disease. I had friends with actual IBS. This was not it, and deep down I knew it. But what could I do besides follow the doctor's advice? I convinced myself that it was IBS, tried to write off the weight loss to stress, and believed with all my heart that the interventions prescribed would work. That this time would be different. This medication would stop the episodes of pain. However, mind over matter did not apply here. My symptoms continued to worsen no matter what we tried.
It was around this time I realized I was losing weight, fast. I lost 30 pounds between January and April. I tried reaching out to my GI doctor, but she would never respond to my calls, and only her nurse would respond to my messages through the portal. My weight loss didn’t seem to concern her. She seemed annoyed whenever I tried to get in touch with her. For her, I was a close and shut case: a healthy young woman with IBS. There was no reason for her to bother with me anymore.
One morning as I got out of the shower, I ran my fingers through my wet conditioned hair. My blood ran cold and I stared in horror as strands just continued to fall out, covering my hands and the sink in front of me. I was so sick that my hair was falling out. I looked in the mirror and saw a hollow shell of myself staring back at me. My eyes were sunken, my skin pale, and I had bruises all over my body. I was becoming more and more fatigued by the day, and I was barely able to get out of bed. I had constant cramping in my abdomen and lived in fear of when the next attack would occur.
In desperation, I dragged myself to see my general practitioner. As soon as she walked in the room, she sat down, looked me in the eye, and asked how I’d been doing. As soon as I opened my mouth words just started pouring out; I explained everything to her from the pain to the fatigue to the dizziness, and she patiently listened to my laundry list of symptoms. For the first time, I felt like a doctor was seeing me: a sick and desperate 22-year-old with debilitating pain that no one could give her a good answer for. I continued my ramble and told her I lost 30 pounds and she suddenly interrupted me.
Doctor: “There’s no way. 30 pounds? Since when?”
Me: “January. Check the chart you will see it”.
She hopped on the computer looked at my chart, looked back at me, looked back at my chart with confusion. “This isn’t IBS, Devon. I’m calling your GI doctor now. This isn’t right”.
The GI doctor and my general practitioner never were able to get in touch, and I was back in the emergency room the next week. The pain was the worst it had ever been. I could barely breathe. My heart rate and blood pressure were through the roof, and I could barely sit still long enough for them to place an IV in my arm. When I got back from my scan my friend was waiting for me. And now we’re back where we started.
“But that doesn’t mean I don’t believe you” the emergency doctor explains to me, “I believe the amount of pain you are in. I believe it is excruciating. This isn't right and you shouldn’t be suffering like this.”
I was referred to a new GI doctor who insisted on performing an MRI of my small bowel. She called me today with the results, and as soon as I picked up the phone I began to cry tears of joy. I knew if she was calling me herself it meant they finally found something.
They found 4 cm of inflammation in my ileum, which can be caused by NSAID use, an infection, or Crohn's disease. Since I have not used NSAIDS in 6 months and do not have any signs of an infection, the most likely culprit is Crohn's disease, a chronic autoimmune disorder that causes inflammation of the digestive tract. I had a colonoscopy back in November which should have picked up on this, but somehow it was missed. I was told by four specialists, all of whom were from incredibly reputable health systems in the Philadelphia area, that it was "just IBS"; they all relied on the lack of findings from the first colonoscopy. I specifically asked for another colonoscopy when I was losing weight at an alarming rate and my symptoms were worsening, and no one wanted to do one. I underwent surgery to check for endometriosis because I was so heavily dismissed by those GI doctors. I was told over and over again I was "overreacting" or that "it would go away on its own". After almost a year I finally have diagnostic proof something is wrong.
My current GI doctor will be doing a repeat colonoscopy to biopsy this area to confirm the diagnosis, and hopefully, I will begin treatment soon after.
My experience opened my eyes to the struggles patients go through on a daily basis. I cannot even begin to explain just how frustrating and horrible of a feeling it is to know you are sick but to have no treatment that works. However, I've learned so much, as a patient and as a future healthcare professional.
To my fellow health care professionals: I know my pain will not kill me. I know it's annoying to you when I go to the emergency room due to pain. However, I wouldn't be there if I didn't think it was necessary. When I come into your emergency room I'm terrified, suffering, and needing help. On multiple occasions, I was treated like a liar, a drug seeker, or crazy by many of the doctors and nurses who saw me. It broke me time and time again to feel so let down by a healthcare system I was so excited to be a part of. All I want to do is be a nurse and help people. I want to make them just a little bit healthier, and try to make their day a little bit brighter. I know I'm new and I have a lot to learn; I'm full of optimism and naivety. However, I have one favor to ask of you no matter how experienced you are: Take that extra second to sit down and talk to your patient. Look at them and try to put yourself in their shoes. It seems so small but honestly, it's one of the most important things we can do. We shouldn't be seeing a list of symptoms, we should be seeing a person sitting in front of us.
To my fellow patients: Never ever stop fighting for answers. If you have a feeling in your gut something is wrong, you're probably right. You know your body better than anyone and don't you dare let anyone tell you differently. I don't care if they are the best health care professional in the country, or in the world. We try to leave our biases and assumptions at the door, but it doesn't always happen. We do our best but we make mistakes. We are human. Be forgiving, but don't let yourself fall through the cracks. If you want answers you need to fight for them. It shouldn't be this way, and I'm truly sorry that it is.
Our health care system is broken and something needs to change. As of now, I honestly don't know how to make it better. All I know is everyone deserves holistic and comprehensive healthcare, whether or not they can afford it. Every patient deserves to be respected and taken seriously. I hope one day I can say our healthcare system provides patients with both of these things. That day can't come soon enough.
