Questions and Answers: Chapter 5

Now that the weekend was winding down, it was time to snap back to reality. My butt demanded it. While I had had fun at the party, it couldn’t distract me from the pain for very long. The day had taken its toll on me. I had given my all, and I was spent. Exhaustion trickled into the next day, making getting out of bed in the morning a struggle. The plan for the family was to wake up early to clean up the remaining evidence of the party. With a little teamwork, the task would be done in no time. As soon as I came downstairs, unenthused, but ready to be part of the clean-up crew, my mom ushered me over to the couch. “Why don’t you lay down and get comfortable?” She suggested. I insisted I was fine to help clean, but I knew I was arguing a losing battle. “I’ll go get your pillows and blanket, and we’ll get you set up on the couch,” she called over her shoulder, already halfway up the stairs.  Resigned to the fact that there was no point in arguing with her, I waited patiently for her to return. As I waited, I noticed how I favored my right side and how badly it hurt just simply standing there. I literally wasn’t doing anything and the pain still throbbed unremittingly. It was only nine in the morning, I had just woken up, and already I felt like I could have easily gone back to sleep for another 6 hours. Allowing myself to acknowledge that maybe resting wasn’t the worst idea, I took the blankets from my mom and put together a bed on the couch.

No sooner had my mom tucked me in (I told you, she’s SUCH a mom) that I became restless and frustrated being stuck on the couch. I wasn’t used to laying around while everyone worked around me, it was a feeling I definitely didn’t like. I felt like I was being lazy while everyone else busted their butts. Overcome with guilt, I got up and hobbled to the laundry room to get the window cleaner. If the family was cleaning the house, I should be helping, too. Wandering back into the family room, I was met with fury by my mother. “What do you think you’re doing?” She scolded. I shrugged, and my hands full of cleaning supplies revealed my motive. “I just wanted to help,” I replied. My mom was insistent that I return to my spot on the couch, and reluctantly, I agreed. I hated every minute of it. Not that I like cleaning the house or anything (ugh, I hate it), but I hated the idea of laying around while the rest of my family was hard at work even more. It just didn’t feel right.

Unable to sway my mom, I reluctantly gave in to the pain and settled in on the couch, doing anything I could to take the pressure away from the right side. Even though I wanted to help, if I was being honest, I was in a lot of pain. I was willing to do anything that would make me feel better, even if it meant resting when I needed to. This concept was totally foreign to me. Before getting sick, I never used to nap or rest during the day. I would typically wake up early, hit the ground running, and power through the day, always accomplishing an impressive to-do list. I considered myself a go-getter, someone ambitious, who likes to bite off a smidgen more than she can chew. I thrive like that. Or, at least I used to. But now, even something as simple as taking a shower was enough to knock me on my ass, leaving me exhausted and passed out on the bed, still soaking wet and wrapped in a towel. Being in such constant pain had really taken a lot out of me. I could feel the difference; my energy was drained, and I just didn’t feel like myself. My spark was gone. It was clear that being sick and in pain had become my full-time job. It was an exhausting gig that usually left me passed out on the couch, unable to move without wincing.

Thanks to the pain meds I was on, I quickly fell asleep on the couch waiting for my family to finish cleaning. It didn’t take them long before they all came to join me in the living room. They did their best to keep me company, but I wasn’t much fun to be around, I was too out of it. I spent most of the day zonked out on the couch, drifting between periods of daunting, drug-induced dreams, hazy conversations with my family, and blurry snippets of tv shows. Snuggled in a bundle of blankets on the couch, I tried to move as little as possible once I had found a somewhat comfortable position. But really, no matter what I did, the pain was unyielding. Regardless of how I situated myself, I could always feel the throbbing pressure that indicated that the abscess had returned. I was miserable. I was frustrated. I was worried. And I couldn’t wait for the day to be over.

Laying on the couch thinking about the events of tomorrow, I felt distraught and conflicted. On one hand, I was overwhelmed with anxiety about having to have another surgery. Just the thought of it made my stomach tense into a tight knot. I hated getting stabbed with needles, blacking out from the anesthesia, then feeling nauseous for the next three days. But, on the other hand, I was in so much pain, I was almost looking forward to having surgery. If it meant I would start feeling better, I was willing to do anything, even face my biggest fears. It was a weird, paradoxical experience to feel both dread and anticipation at the same time. Drowsy on the couch, I drifted in and out of slumber. Whenever I woke for longer than a few minutes, I was consumed with anxiety over my impending surgery. It felt like that was all I could think about. My family, trying to keep my mind off of the surgery, tried to distract me with a solid Harry Potter movie marathon. Even though I always enjoy watching HP & Co. battle Voldy, even that wasn’t enough to keep my mind off of what lay ahead.

Reasoning that sleep was probably the best option since I wouldn’t be up worrying, I ate an early dinner, then went to bed. Lying in bed tossing and turning, I thought about how badly I just wanted it to be over already. I begged myself to fall asleep, and it must have worked because the next thing I knew, it was Monday morning and I was being taken to the hospital. The surgery was quick, but not painless. Once again, I had surgery to drain the abscess that refused to heal. And again, it hurt like hell. Afterward, I could hardly move without being in excruciating pain. My stomach heaved whenever I moved too much and caused a spike in pain, so I had to move very slowly and deliberately. After surgery, I returned home to try to rest and recover. By this point, my family and I were frustrated with the relentless pattern we seemed to be in. I couldn’t break free from this incessant struggle, and I was getting scared. It was getting to be a little ridiculous having surgery every few weeks. I hoped this time would be the last time I would need surgery, but if history was any indicator, I was reluctant to get my hopes up. We voiced our concern to the surgeon who had been working on me, and this time instead of insisting it would be the last time having surgery, he explained that it was really time for us to find a Gastroenterologist, who would be able to better explain to us what was happening. He explained that since I had Crohn’s, it made the case of my abscess more complicated than a “normal” person, and we really needed to see a specialist to get some answers. He gave us a few names of GI doctors to try and sent us on our way.

Feeling at our wit’s end, my mom and I took the names and instantly began our search to find a GI doctor. We desperately hoped that a specialized doctor would be able to shed some light on the situation and reassure us that everything was going to be okay. My mom and I started at the beginning of the list and quickly worked our way through it. As it turns out, the names the surgeon suggested were of no help. With this list, we discovered GI doctors who just weren’t right for us– not enough experience, rude bedside manner, limited availability, unreliable nurse/secretary, etc. We were beyond frustrated and worried we would never find the right doctor when a google search led us to a GI specialist about an hour and a half away from our house. He had decent reviews, so we decided to give him a shot. Feeling more than a little desperate, we called and set up a new patient appointment for as soon as possible, and they were able to squeeze me in right away. For the first time, we felt hopeful that we may get some real answers and start the healing process.

Before meeting with the doctor, my mom and I put together a list of questions. On a loose-leaf sheet of paper, we started a bullet point list of all our worries. First and foremost, we wanted an explanation of what was happening to me. We wanted to understand what exactly caused the abscess, where it was located, how we could treat it, and how long it would take to treat. Our other questions wondered if I would have to start taking medication, if diet affected my condition, if there were any holistic practices that would improve my symptoms, and if I would need to continue having surgery every few weeks.

Driving an hour and a half to meet my new Doctor, we sat in silence most of the way. We were both too nervous to make small talk. Once we got a little closer, we went over our questions and added any last-minute ones to the list. We wanted to make sure the Doctor answered all of our questions. When we finally arrived at the Doctor’s office, my mom turned the car off and we both sat in silence for a full minute before we finally gathered the courage to open the car door and walk inside. We were both terrified of what this Doctor would have to say. Once inside, we were met by a receptionist who could not have been bothered to acknowledge the two people who just walked into her empty office. Not a great first impression. After checking in with the unfriendly receptionist, she led us to the back of the office to prepare me to meet the Doctor. She stopped and took my height and weight, then led me into a waiting room. It was then that I realized that this unpleasant receptionist was also the nurse. She took my vitals, briefly went over my symptoms and the “what brought you in today” questions, and left the room. My mom and I immediately looked at each other and exchanged remarks, “well, I sure hope the Doctor is a little friendlier than she was,” my mom said. I nodded in agreement but said nothing. I felt like if I opened my mouth I would throw up. In a time like this, with both of us so unsure and scared, the last thing we needed was a rough, rude doctor or nurse. We were a little fragile, and we desperately needed kindness and compassion.

I sat on the examination table, swinging my legs, and zoning out. My mouth was dry, my hands were sweating, and I had a pit in my stomach. I tried not to think of the terrible things the Doctor could tell me. My mom, just as nervous as I was, tried to lighten the mood and make small talk. I can’t remember if I responded or not as suddenly there was a sharp knock and the door swung in. The Doctor entered and shook my hand. He introduced himself, then asked what brought me in today. I was pleased to note that not only did he seem knowledgeable and experienced, he was also compassionate, which was important to me since I was so nervous about everything that was happening to me. I explained that I was having severe pain in my butt on the right side and that I had gone to the ER and found an abscess. I continued on, explaining that I had had multiple surgeries already to drain the abscess, but it kept returning. I finished by practically begging the Doctor to explain to me what was happening. Never once during my explanation did he rush me, which I appreciated. After hearing everything I had said, the Doctor explained that I would need to undergo a CT scan so we could see what exactly was going on inside. After that, we could talk about medication and a treatment plan.

The wait for the results lasted forever. When they were finally in, I went back to see my GI doctor to go over the findings. They were as I suspected. The scans showed that I had an abscess about the size of a golf ball located in the Supralevator muscle, which isn’t healing properly because I have Crohn’s Disease. Okayyy? But what does that mean? What do we do about it? How do I get back to normal? Please, FIX ME! To my relief, the doctor reassured me that he would help get me back on track and that he had a treatment plan he was confident would work. To begin, he explained that I would have to get started on some serious medication. I would immediately start a regimen of budesonide, ciprofloxacin, Flagyl, and azathioprine. This would work as a steroid to reduce the inflammation, antibiotics to fight infection and another anti-inflammatory. In addition, I would also be having surgery again, this time to drain the abscess and place a seton. The seton would essentially be a looped piece of plastic that would work to keep the abscess open and draining, giving it a chance to heal instead of closing back up like it had been doing. Relieved that we actually had a game plan, I scheduled the surgery and prepared myself to start my new medications. I hoped this would do the trick and be enough to heal me once and for all.


The Show Must Go On: Chapter 4

Leaving that night was bitter-sweet. For my health, I knew I had to leave, but I felt sad and guilty leaving my friends in the dark. But if I’m being honest, I was a little relieved to be heading home. Going to a loud bar, drinking a ton of booze, and dancing all night long should have sounded like a blast, but in reality, it was the last thing I wanted to do. I was having a hard-enough time faking a smile just sitting on the couch, there was no way I could muster up the strength to keep the charade going for an entire night. Instead of forcing myself to stay, I thought up a quick excuse about coming down with the flu, and I said my goodbyes. I suppose I could have just told them the truth, but I just wasn’t ready to share my newly diagnosed chronic illness with everyone. Especially not at a graduation party, what a buzz kill.

Forcing a smile, I reassured everyone that I was fine, just feeling a little under the weather, and I got ready to head home. Before leaving for the two-and-a-half-hour ride, I quickly changed out of my dress and threw on sweatpants and a hoodie. I needed to give my body as much comfort as I could, I knew the ride home was going to be unbearable. After a harrowing ride, I passed out as soon as we got home. In the morning, my parents demanded I call the surgeon and fill him in on what was happening. Terrified it would mean another surgery, I tried to put off making the call. I reasoned that everything would probably just clear up on its own and that I would be fine. My parents were insistent. Nervously, I called the surgeon and explained the pain I was having. I paced around the kitchen, too anxious to sit still. To my dismay, I was scheduled for an outpatient procedure for the beginning of next week. Hearing the news, I collapsed onto a bar stool. Slumped on the counter, I felt like I had gotten the wind knocked out of me. What was happening to me? ANOTHER surgery? It felt like everything was spiraling out of control. How many surgeries was I going to have to have? Why wasn’t I getting any better? I felt helpless.

As soon as I hung up the phone I burst into tears. Why wouldn’t this just end already? My mom rushed over to me and wrapped me up in a hug. She did her best to comfort me, but I was inconsolable. Sobs wracked my body, as my mom rubbed my back. Gently, she reassured me this would be the last surgery, but even then, it felt like a lie. I wanted so badly to believe this was close to being over, but I was too scared to get my hopes up. Deep down, I knew something was really wrong with me. I could feel it in my gut. My dad, in disbelief, blurted out, “Damn, another one? Why does this keep happening?” Almost refusing to believe it was true, he questioned what the surgeon had said. I repeated to him that the abscess had closed and needed to be drained again. I was distraught, I was angry, I was terrified. I didn’t understand what was happening to me. It felt unfair. Why couldn’t the surgeon just fix me? Why wasn’t I getting any better?

Crying in the kitchen, feeling defeated, I put my head down on the counter. To calm down, I forced myself to take three deep breaths. Once I had regained my composure, I wiped my tears and looked at my parents. Looks of worry returned my gaze. “Do you want us to cancel the party?” They implored. No, absolutely not, was my response. I was adamant that the party should go on. I didn’t want to be the reason behind ruining everyone’s good time. Besides, Sarah and Garrett had worked so hard to graduate and were excited about going away to their prospective colleges in the coming fall, they deserved their celebration. I didn’t want to take their big day away from them, that wouldn’t be fair. I refused to let my illness become an overshadowing distraction.

My parents were hard to convince, but I was persistent, and in the end, they didn’t cancel the party. I reassured them that I would be fine, but even then, I knew I was in bad shape. Everything hurt, I couldn’t walk without a limp, and I couldn’t sit without fidgeting relentlessly, trying to find a comfortable position. Anxiously, I worried that everyone at the party would find out about my newly diagnosed illness and that they would find out about my surgeries. It felt like a secret I had to conceal. The last thing I wanted was for everybody to find out. I wasn’t ready for everyone to know such an intimate detail about my life, it was too personal. At this point, I wasn’t even entirely sure what Crohn’s was, or what having it meant, and I wasn’t ready to talk about it with others. On top of that, it would be humiliating having to explain to everyone that I essentially had surgery on my butt. Twice. To assure that nobody at the party found out about my disease and subsequent surgeries, I swore my family to secrecy. Above all, I didn’t want my illness becoming a topic of conversation at the party, I didn’t want to be gossip. With a mindset of, “it’s nobody’s business but my own,” I vowed that it was my body, my disease, my struggle, and it was my decision who was privy to that information. My family agreed.

0558280426004The morning of the party, I was devastated to find that I didn’t feel any better than I had a few days ago. Despite my better judgment, I had held out hope that I’d make a miraculous recovery. But, of course, I hadn’t. To make matters worse, I noticed that unlike the first time I had surgery, this time the pain never faded, never went away. Refusing to ruin the party because I didn’t feel well, I put on the biggest smile I could manage and got ready to face my friends and family. Despite feeling pretty lousy, I was still determined to have a good time. When my friends and family arrived, I did my best to act normal and be the life of the party. Acting as if everything were fine, I chatted and mingled around the room. I kept it to myself how terrible I was really feeling. Soon, I realized that a bright smile and laughter went a long way. It was a challenge, but I fought through the pain.

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To an audience of one, I put on the performance of a lifetime, acting as if I felt fine, like horrible pain wasn’t brewing just beneath the surface. It was a draining performance, smiling and socializing like nothing was wrong. In the end, I did my best to hold out for as long as I could, but eventually I got too tired to fake it any longer, so I snuck upstairs to relax in the bath before having to rejoin the party for the farewells. Before I knew it, I was saying goodbye to my friends and family and settling into pajamas for the night. When the last guest left, I collapsed on the couch, relieved and exhausted. It had been a fun day and I was glad to have powered through it, but I was completely drained and my body throbbed with pain. I couldn’t wait to go to bed and not have to move anymore.

The party had been my first “outing” since getting sick, and through that day, I learned one important thing: makeup was the miracle cure. When you look good, people assume you are feeling good, too. And as quickly as that, makeup became my best friend. I learned that a lot of makeup could quickly cover a pale, fatigued face, and make it easy to trick my family into thinking I felt fine when really, I wasn’t okay at all. It was a lot easier pretending I felt fine than letting my family know how much pain I was really in. I hated the look of worry that settled on their faces when I explained how awful I felt. It made me feel guilty to see them stress over me. All I wanted was for the pain to disappear and for life to go back to normal.

More importantly than learning of my new makeup miracle cure, I realized that I wasn’t going to be a victim of my illness. This day proved it. I was so proud of myself for powering through the day, and not letting the pain get the better of me. I vowed to myself that throughout this whole mess, I wasn’t going to lose myself. I easily could have hidden away in my bedroom, sulking and pouting because I didn’t feel good, but instead, I had risen to the occasion and fought to make it through the day with a smile on my face. I felt like a warrior. I didn’t want Crohn’s to take my sparkle. If I was going to have this disease for the rest of my life, I couldn’t let it control me and force me to miss out on experiencing life. Despite the overwhelming pain I was in, I was happy to have the memories from that day of my friends and family.