#1 The Diagnosis
Blog Post #1
No one’s ever jumping for joy at the thought of boarding a plan for an 8 hour flight..but I was especially dreading it. I had been on and off the toilet all day long for three days straight, and I had a feeling it wasn’t going to end anytime soon. (Probably TMI but you mind as well buckle up cause there’s a lot more where that came from.) In my head I thought, “maybe we can cancel? It’s not that big a deal..right?”. Out loud, I said, “got your bags ready?”. Seven hundred dollars in plane tickets, 3 months of planning and a boyfriend dying to see the west coast made my inside voice quiet down. So, we set off for the airport and boarded the plane. I was tired, sluggish and felt like I had the flu. But, I pushed through. Excited to visit my sister Rachel and introduce my boyfriend, Kyle, to the Pacific Ocean. When we arrived at PDX, I headed straight for the bathroom. “That’s normal..” my inside voice trailed off “a lot of people have upset stomachs after traveling, you’re fine.” Fast forward to our stay in Oregon, about 3 hours outside of Portland. My sister, her girlfriend Elizabeth and their roommate were living in a cute little house on a corner lot. They had a mother in law suite in the backyard, that’s where Kyle and I were staying. Elizabeth had it all set up for our stay: flowers on the window sill, a bottle of pink wine (my favorite! At least it used to be). Then it hit me.. No bathroom. The little suite we were staying in was attached to a garage, and you know what wasn’t attached to that garage? A bathroom. I tried my best to convince myself I didn’t actually have to go at 2 in the morning, but you can only convince yourself so much before your body decides otherwise. I snuck into the main house as quietly as I could. I felt like Santa, except instead of a big bag full of toys I had a stomach full of cramps. I finally made it into the mud room and closed the door. “Phew”, I thought, “mission accomplished”. But boy, was I wrong. Cue two giant dogs spazzing out, their thick black nails sliding all over the hardwood floor, followed by a sleepy Elizabeth waking up to calm them down (she’s the dog whisperer) and me, trying to decide if I should help with the dogs or dart to the toilet. I chose the latter. I opened the bathroom door and an immediate sense of relief washed over me. I started chanting with my inside voice “it’s just the flu, it’s just the flu”. But I think even then, I knew something wasn’t right. I got up, washed my hands, went to flush the toilet, but as I reached for the handle, I noticed… Is it black? (Here’s where that TMI comes back) Is my poop black? A few seconds of instinctual freak out between me and my inside voice before I finally got the courage to flush, dry my hands, and take a look in the mirror. That’s when I decided to just calm down. I mean, my stomach was upset, I already knew that.. So what if my poop was black..? Like, jet black.. Like, printer ink jet black. “You’re overreacting”, my inside voice told me. “Don’t ruin this trip, you’ll be home in a few days, if it keeps up you can freak out then”.
Fast forward again, to my Plane Ride Home From Hell™. Severe weather conditions turned our 1 hour layover in Denver into a 12 hour layover in Denver. I had a serious case of brain fog, but I can remember laying on the ground in the fetal position, clutching my abdomen, covered in airport gift shop blankets that Kyle bought for me while I was sleep (thanks, dude). I was sweaty and freezing and absolutely exhausted, but unable to sleep because of how sore and crampy I felt. Hours of waiting, flight transfers, and fighting back tears of pain and exhaustion, and we finally made it home. I passed out on the bed for 14 hours. I had to work the next day and after all that sleep, I felt a little better. I thought i’d stick it out, afterall I had just taken two weeks off for my ‘amazing’ west coast vacation. I work at the sweetest local coffee shop in my city. I had to wake up at 4am to get there and start making all of our hand-baked pastries. This included lifting a bunch of heavy containers of batter to and from the fridge. By the time my co-worker got in at 6am, I was completely out of breathe, gasping for air and sitting on the couch. Totally fatigued. She took one look at me and told me to lay down. I did as instructed. She told me I looked awful (thanks girl) and that she was calling the owner to tell her I was leaving for the day. I had never felt so betrayed by my own body. I didn’t understand why I was so out of breathe. Sure, I wasn’t in the best physical shape, but I was a relatively healthy 23 year old.. Right? I went back to the tiny studio apartment I shared with Kyle and *surprise* used the bathroom right away. This time, my poop wasn’t black at all. It was much, much worse. “Blood?” I said out loud this time. As much as I wanted to convince myself that this was okay, I was scared. Terrified. I did what any logical adult woman would do in a crisis like this. I called my mom. She told me to go to the doctor. At this point, I had never been to any type of doctor other than my pediatrician. So that’s where I went. I had visited the pediatrician a few days before we left for our trip because of my ongoing upset tum, where she advised me to wait a few days, it was probably a 24 hour bug and that i’d feel better soon. At this visit, she asked me the regular questions. What hurts, for how long, eat anything weird, etc. And then she asked this: “any weird discoloration in your waste?”. My inside voice was screaming “tell her! Tell her it’s black, sometimes bloody! It hurts like hell! You can’t catch your breath!” I said out loud, “I think there might be blood in it, wanna see this picture I took?”. Face Palm. But like the sweet doctor she is, she took a gander and quickly said, “yeah, you need to go to the emergency room” My head was spinning. What???? She pulled out my charts and said, “I can’t tell you what it is, but it doesn’t look good. You’ve lost 27 lbs since I saw you 2 weeks ago.” I had? No way. I called my mom again and she and my dad met me at the ER. 7 Hours in the waiting room, a male doctors index finger in my rectum, a nurse force feeding me a ritz cracker-sized potassium pill, and a CAT scan later, they still had no idea what was wrong with me. “They think it’s an infection in your colon”, my mom said to me. I was sent home with a 2 week supply of antibiotics and no real dietary guidelines. At this point, I stopped going to my classes at the University and was lucky enough to take temporary leave from my job at the coffee shop. After my 2 weeks of antibiotics and no sign of relief, my angel-mother arranged for me to see a gastroenterologist-- my only request was that the doctor be a woman (I was still traumatized by me ER experience). Blood tests, another CAT scan and more blood tests told us that my hemoglobin levels were wonky, I was extremely potassium and vitamin deficient and also had a severe case of dehydration.
At this point, my body was at its worst, physically and mentally. I was using the bathroom up to 40 times a day, was scared to eat, and was suffering from chronic fatigue, brain fog (due to lack of nutrition), extreme weight loss and honestly, depression. I drank so much gatorade that the site of a sports drink bottle puts me on edge. What felt like months later, I was finally scheduled for a colonoscopy. Oh boy! Cue gatorade mixed with a laxative (deepening my hatred for all things electrolyte) and I was ready for my procedure. I had only been on anesthesia once before for my wisdom teeth surgery. It felt weird to look back on that painful tooth extraction fondly. Needless to say, I was scared. Not only of having a camera in my butt, but of what that camera would find. Add a creepy comment made by one of the nurses on staff (a blog post for a different day) and I was ready to drift off to sleep.
I can vaguely remember the doctor patting my hand awake and telling me I was out of surgery. She asked if I’d like to see my parents to which I nodded yes as vigorously as I could, which in retrospect was probably not as enthusiastic as I thought it was. In come my parents with weary looks, they’ve already heard the news, the diagnosis, I could tell by the looks on their faces. The doctor approached. I asked for water and was politely denied. My mouth felt like the Sahara Desert. “Sarah”, the doctor said, “It looks like you have Ulcerative Colitis.” I blinked. Sleepy, parched, unphased. My mom blurted out “you knew that already didn't’ you sweetie? We knew something was wrong”. Aw, mom. She was always trying to soften the blow, and it worked. “Okay”, I finally muttered, my voice croaky like a frog. I finally got my glass of water, a prescription for steroids, an inflammatory management pill and a list of foods that were safe and unsafe to eat while I was in “recovery”. During the car ride home I glanced down at the list. On one side: bread, pasta, meat, fried foods. On the other: fruit with skins, fruit with seeds, cruciferous vegetables, raw vegetables. I shifted my gaze upwards toward the titles of the two columns. Bread, pasta, meat and fried foods were all listed under the.. ‘Safe to eat’ column? Had the anesthesia not completely worn off yet? Those foods were.. Safe? As soon as i got home I called my doctor with a list of follow up questions. “No, diet is not a factor when it comes to autoimmune diseases like yours. Yes, you will be on prescription medications for the rest of your life”. Her words spilled over me like honey, weighing me down. These ‘answers’ to my questions led me on an obsessive path towards finding out new information. I had so much time on my hands without school or work that I smothered myself in articles, studies, and documentaries about food, health and disease. I watched hours and hours of youtube videos on Ulcerative Colitis and diet. I absorbed so much information in the 4 months that I remained bed ridden. Scared to fall ill again, I ate what the doctor recommended while I was recovering. Once I was finally allowed to wean myself off of the steroids (which had made me gain 30+ lbs), I finally made the choice to change my diet. And that’s when it all started.
I hope that I can guide others dealing with similar health issues. I understand how scary it is to be diagnosed with something that you didn’t even know existed. Dealing with the ramifications of health problems can be confusing, especially with autoimmune disease. The idea that your own body is the thing harming you, can make you feel so helpless and frankly, depressed. I hope sharing my ongoing journey to health and happiness can help other people dealing with similar issues.