1-10 has never been never my scale. The unnerving pain that either felt like sharp needles digging deep into my stomach, millions of knots filling it, or sharp shooting pains that resembled what I believed it would feel like to be shot in the stomach could never be restricted to a 1-10 pain scale. Clearly 1-100 wouldn’t be realistic either; so I settled on 1-20 for most scenarios.
Crohn’s Disease belongs to a group of conditions known as Inflammatory Bowel Disease (IBD) and is a chronic inflammatory condition of the gastrointestinal tract. IBD incorporates both Crohn’s Disease and Ulcerative Colitis, which are two entirely different conditions – although they are often lumped together. They differ depending on what part of the gastrointestinal tract they affect. For example, Ulcerative Colitis affects the colon (large intestine) and Crohn’s Disease affects the small intestine. Most websites that take the time to define these two diseases specify where in the gastrointestinal tract the inflammation occurs – but this is where the descriptions get tricky. Crohn’s Disease is different for just about every individual. While the most common cases are called Ileocolitis and Ileitis, which both affect the ileum (the last portion of the small intestine), there are at least three other forms of the disease, and each form has a different list of symptoms that might not be entirely accurate for each individual living with it.
March through October. Roughly eight long months of scrambling parents, running to bathrooms, and applying as much pressure to the upper left part of my stomach as possible. No one knew what was going on, but no one wanted to know more than my parents. Watching me dart from the table and run to the bathroom in fear of getting sick each time I ate any type of food, my parents pondered the thought of anorexia nervosa or bulimia nervosa. Looking back on it, they’ve told me that they were just trying to be realistic – considering every possibility since they couldn’t figure out what was going on. The doctors weren’t helping much in the beginning either.
In August I weighed myself for the last time during my diagnosis process. I was at the lowest I can remember ever being: 77 pounds at age twelve. My dad tends to describe this summer in a few different ways, but his favorite always being that he was able to nearly wrap his hand around my upper arm twice. I hadn’t had food pass through my mouth in months. Food hurt me. My body saw it as the enemy and changed my perception of it from something I needed to survive to something I needed to avoid at all costs.
Gastroduodenal Crohn’s Disease. This is basically what I have. It’s a form of the disease that involves the stomach and the duodenum, which is the first ten inches of the small intestine. Typically, people living with this type of Crohn’s Disease suffer from nausea, weight loss, loss of appetite, and if the narrow segments of the bowel are obstructed, they experience vomiting as well. Sounds lovely, doesn’t it?
This being said, if anyone looks up Crohn’s Disease for themselves, the typical symptoms are: diarrhea, fever and fatigue, abdominal pain and cramping, blood in stool, mouth sores, reduced appetite, and weight loss. My symptoms? No desire to eat, skeletal appearance due to drastic weight loss, surging and writhing abdominal pain and cramping, inability to function in my daily life due to loss of energy, depression, and the mouth sores that I’ve spent a lot of time trying to forget. The mouth sores that are often associated with Crohn’s Disease are basically ulcers inside your mouth, similar to the ones that would be found throughout your gastrointestinal tract. Fun, right?
On top of all of that, Crohn’s Disease is an autoimmune disease. It chronically fights itself. It views itself, food, and medications as foreign objects and tries to fight against them, eventually destroying itself. Because my immune system overreacts and works too hard, I now no longer have one. If I move away from you when you cough or sneeze on the bus, in a class, or at a party – don’t take it personally. I can only fight myself; I can’t fight off you.
My mom’s voice would often wake me up at 3:00 in the afternoon. The soothing hums would waft through the open doorway of my bedroom. This had become a regular occurrence. She’d wake me up in fear of me sleeping the entire day away and then not sleeping later that night, which was never actually a problem for me. Six months of not having anything to eat and my body was rebelling. It had no energy and was punishing me by not allowing me to live. She’d wake me up and invite me out into our living room to join the rest of my family to watch television – or something of the sort.
I’d drag myself out of bed, force my body down the hall limb by limb until I arrived at the smaller of the two couches in my living room. Dropping myself onto the worn-out leather cushions, it was a matter of minutes before I was asleep again. That summer, a lot of people told me I’m cute when I sleep.
There is no known cause of Crohn’s Disease. Recent research has been suggesting that the cause might be due to hereditary, genetic, and/or environmental factors – some research is even suggesting that it is the interaction amongst all of these factors that contribute to the development of the chronic, inflammatory condition. My father has always had stomach problems. He’s borderline for the diagnosis. Basically, he has all the symptoms but receives none of the treatments. Two of my aunts have it as well.
Another interesting feature of Crohn’s Disease that seems to be causing many scientists and doctors to be scratching their heads, is the fact that this disease is more prevalent in a specific Jewish population from Eastern Europe known as Ashkenazi Jews. Something to do with inbreeding or incest within ancestors. I’m not entirely sure, but I am Jewish, so I suppose this affects me one way or another. So despite there being no known cause for the disease, scientists are attempting to focus on genetics and hereditary qualities. In the meantime, they only seem to be able to diagnose people based on symptoms and signs of inflammation.
Nine years ago, when I was twelve years old, my doctors were still trying to figure out what was going on inside me. Once they determined it was some form of inflammation, they started me on Prednisone – a steroid. This medication has saved my life various times, but this first one is the most prominent in my mind. After a couple of months on these pills everyone could see a difference. Granted, I still wasn’t gaining any weight, but I had more energy than I knew what to do with. I’d wake up incredibly early in the morning during my winter vacation from middle school, make my mom coffee (five cups), empty the dishwasher, finish the laundry that we had probably put in the night before, mop the floors, scrub the counters, dust the television, and sit down to start my book reports that had been assigned for the break. I remember that vacation more vividly than the entire summer I was sick. My dad was ripping up the carpet throughout our house and self-installing a wooden floor. It looked great, but because of the work involved in setting wooden floors, all of our living room furniture was in our kitchen. I remember jumping over couches and maneuvering my way around televisions and back again, just because I could. I had the energy for it. I could get up and walk without falling over and I could stay awake without someone constantly propping me up throughout the day.
After months of being on the steroids, I began to look like a chipmunk. Friends asked if I had had teeth pulled. People stopped saying I looked great. I had not only gained the weight back that I had lost, but I added to it. As much as the Prednisone saved my life, the teenage girl in me will always hate this medication for how it altered my body at a time when I was already self-conscious of my appearance.
The medication list for Inflammatory Bowel Diseases is constantly growing. I suppose this is a good thing, because it means that people are still researching and trying to discover new treatments – but in reality it’s because it’s necessary. When I was first diagnosed with Crohn’s Disease, my doctors looked directly in the eyes of a naïve twelve year old, and told me that no one dies from the disease. Well, I say bullshit to that. If those statistics are accurate, it’s only because no one was diagnosed with it at the time of their death. Had I gone on for another month or two of my life without eating, I would not be here right now. So, bullshit. There is no way that no one has ever died from Crohn’s Disease. Thanks a lot for trying to reassure younger-me, but you just made older-me angry instead.
Prednisone, Imuran, Mercaptopurine, Methotrexate, and Humira. Do these mean anything to you? They work to reduce inflammation and to return my body to a state of remission. At a point in my life, that didn’t mean anything to me. In fact, at one point after I had been on one for awhile, I decided on my own that I was healthy again and I didn’t need these medications anymore. I stopped taking them. I’d quietly throw each pill out every night and place a napkin or a tissue on top of it in the trash to make sure my parents never found out. But they did. Because I stopped being healthy. Months passed and my blood tests results began to decline drastically, and my doctor began following up to see if I was still taking my medicine. I wasn’t. But I tried to keep lying for awhile. I remember sitting on the brown, worn-out couch in between both of my parents the day that I finally told them. I never said anything. I just nodded my head when they asked. Tears rolled down my face, making a plop sound when they landed on the leather next to me.
X-rays, blood tests, upper GI (gastrointestinal) scans, endoscopies, colonoscopies, dye infusion scans – the examinations went on and on, because each test only reaches a certain part of a person’s body. My inflammation was and is in my duodenum. Endoscopies only reach into your stomach and colonoscopies don’t go much further than the beginning of your colon. Upper GI scans require the patient to drink Barium, a chalky liquid that is used to outline one’s entire digestive tract to make it easily viewable through special x-rays. I’ve had to drink this stuff twice. The first time it took me about three hours to get through one bottle (of the three I had to drink). I cried. It tasted awful, I was in an obnoxious amount of pain, and even my mom couldn’t help me feel better. What was worse is that none of these tests showed anything. Being poked and prodded for months did me no good, besides develop bruising up and down my arms and across my torso. I still had no answers. After months of testing, my doctor finally starting treating me. They diagnosed me without 100% proof of the disease, but based on my symptoms, they knew they had to act soon. And as a twelve-year-old, I couldn’t care less. I just wanted them to make the pain go away.
That summer. When no one knew what was going on with me. When no one knew what to do to help me. It was 95 (DEGREES) outside. I wore a sweatshirt. Baggy clothes were all that I owned. Pant sizes went down a bit, but I never got out of my pajama pants, so it didn’t seem to affect my wardrobe at all. Everything hung off of me as if I purposefully meant to buy them to be too big. It made me look sicker than I actually was. No one knew that was possible.
The majority of my life has been spent receiving suggestions from people who believe they understand and know better about what I’ve gone through and continue to go through.. Hearing comments of, “You look great!” when I’ve lost fifty pounds in a timespan of a month isn’t helpful. Having people suggest that I try to diet or eat differently and then maybe, just maybe, my stomach won’t have these “problems” anymore, isn’t something I can continue to nod along with for much longer. Being told that my face looked like I had my wisdom teeth pulled out just yesterday, when in fact I had been on seven months of corticosteroids to help stabilize my body and reduce the inflammation, just furthered the self-conscious thoughts that ran through my head on a day to day basis. “You’re so lucky! I wish I could lose weight that easily,” is possibly one of the worst comments I’ve received and it was met with a blank stare.
Going away to school, my parents had many worries when it came to my health. Telling my roommate about my pain scale only seemed to frighten her.
“Should I contact your mom?”
“Only if it’s really bad,” I told her.
“So on a 1-10 scale, when should I call her?”
“Not 1-10. More like 1-20. And when it’s over a 17. I can handle it up to a 17,” I explained. Last semester I hit a 17. But I didn’t tell her. Hiding it is what I’ve, inadvertently, been trained to do.
Crohn’s Disease is not a relatable condition. I could spend hours telling you about the pain that I’ve gone through and the specific moments that I remember, but the truth is – even other people with Crohn’s Disease won’t understand, because the condition truly is unique to each individual. I’m lucky: mine isn’t nearly as severe as many others that I’ve read about and met over the years. But the level of pain that I associate as my normal everyday experience cannot be compared to your two days of food poisoning. My normal might be someone else’s pain level of a 6 or a 7 on their 1-10 scale. But I have no way of knowing their interpretations of pain, either. All I know is that I spent my teenage years hugging trashcans and experimenting with (doctor-approved) medications and crying myself to sleep at night asking God – a God I’m not even 100% sure I believe is up there – “Why me?” because I truly did not understand why living meant having to endure so much pain.