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.


Just a Bad Dream: Chapter 3

The ride home from the hospital was brutal. Gritting my teeth, I tried desperately to find a position that took the pressure off my poor, aching butt. But I felt every move the car made. Searing pain radiated through my body each time the car jerked over the smallest bump, making me gasp and wince in pain. My mom drove home carefully, swerving out of harm’s way when she could, but she was cursed from the start. The road home from the hospital was dented with divots and craters. Trying to escape the pain, I curled into a ball and rested on my left side. It was no use, the residual pain from the abscess and the fresh pain from my recent surgery was so intense, I nearly threw up. Never before had I felt such overwhelming pain. I wanted to escape my body, if even for a moment to get a bit of relief, but I was stuck.

The 30-minute car ride lasted forever. By the time we got home, I was exhausted. We pulled into the driveway and I grimaced in pain. I tried not to take my anger out on my mom. After all, she was just the driver. Logically, I knew it wasn’t her fault the road was littered with potholes, but I was so enraged it wasn’t safe for anyone who crossed my path. Happy to finally be home, I hobbled towards the house, bracing myself against my mom. Limping, unable to put any pressure on my right side, I struggled to get inside. After climbing the garage stairs, one foot at a time, I finally made it safely into my house. I couldn’t wait to crash on the couch. I thought for sure I’d finally get some relief.

By the time I got inside, my butt had a heartbeat from the radiating pain, and I could hardly stand. While I stood waiting, my mom made me a comfy bed on the couch with my favorite comforter and plenty of pillows to prop myself up with. When she was finished, I limped myself over to the couch and gingerly laid down. I bundled a pile of pillows together, propped them up, and leaned my left side into them. I used another pillow to stuff under my right leg, to take the pressure off where the surgery had been. To my unbelievable disappointment, I quickly realized that no matter what position I placed myself in, no matter how I situated myself, I could always feel the pressure from the abscess. And it hurt like hell. Everything felt like a bad dream and I was ready to wake up.

Exhausted, frustrated, and in pain, all I wanted to do was sleep. Popping a couple of pain pills, I tried desperately to get cozy on the couch. Thankfully, sleep came swiftly. Worn out from the car ride home, if it’s even possible to be worn out from just sitting (it is), it didn’t take long for me to doze off. A few hours later I woke up to find my mom nervously watching over me. Upon seeing me stir, she immediately jumped up and insisted I get some food in my belly. At the time, I wasn’t yet used to having pills be the only thing in my stomach, so I agreed that food would be a good idea. After nibbling on toast and sipping chicken noodle soup (my mom is SUCH a mom), I immediately passed back out.

When I woke up later, I was disappointed to note I didn’t feel any better. At the time, the word “patience” wasn’t in my vocabulary. I was too accustomed to instant gratification, so I assumed healing would be a relatively quick process. I figured I’d sleep it off, and wake up feeling good as new, or at least a little better. But, that wasn’t the case. Despite the discomfort, I tried to stay positive by chalking everything up to surgery pains, hoping everything would heal up and go away in a few days. After all, I really didn’t have a choice, I had to get better, and fast. My college graduation was in a few days, and there was no way I was going to miss that. Not a chance. It was an honor I had worked too hard to achieve for it to be taken from me because of some silly pain in the butt. I was too proud of myself and all my hard work, there was no way some illness was going to rob me of that. Besides my graduation, the weekend was also my brother and sister’s (they’re twins) high school graduation party. It promised to be a good time, and I was excited to celebrate with friends and family. My body had better get its shit together, I had too many important events coming up, I just couldn’t afford to be sick.   

Determined to be well enough to walk at my graduation, celebrate with friends afterward, and enjoy my brother and sister’s party, I put on a brave face and did my best to heal as quickly as possible. As if there were really anything I could do to speed up the recovery process. Mostly, I slept on the couch; I was new to taking pain pills, and they really knocked me out. The boy who I was dating at the time came over to visit, but I wasn’t much company after being sedated. He mostly sat on the couch next to me and stroked my hair. After a few days of resting, I convinced myself that I was feeling better. Pushing the pain aside and ignoring it as best I could, I pretended that I was fine. I forced myself to walk around the house as normal as possible, so I didn’t draw attention to the fact that I was still hurting. By joking and smiling, I put on a happy mask and thought, “fake it till ya make it,” with hopes that a positive attitude would be enough to help me feel better. Even though in the back of my mind I knew something wasn’t quite right, I had too much riding on these next few days to be sick; I decided to ignore the warning signs. So, with a slightly exaggerated clean bill of health, I reassured my parents that I was feeling better, packed a bag to take with me to school, and I headed out for graduation. The plan was to stay with my old roommates for a few nights so we could celebrate our graduation in style with one last, outrageous night on the town.

My first night back at school was amazing. I drank enough to not feel the pain, danced the night away with my best friends, and laughed until I cried. My roommates and I reminisced about living together and all the shenanigans we got into, and I completely forgot about being sick. It was a great night. The following day was my graduation. My family and boyfriend arrived in the afternoon, leaving us plenty of time to have an early dinner and do a bit of celebrating before the big ceremony. We went to a nice steakhouse, had a few celebratory drinks, and then it was time to make the big walk. Before we left for dinner, my mom cornered me and asked me how I was feeling. I lied and assured her I was feeling just fine. But by this point of the night, it was becoming apparent that I wasn’t feeling well, more than just being slightly hungover. I was doing my best to hide it behind a bright smile and laughter, but I was having a hell of a time sitting still. My family eventually noticed I was favoring my right side and asked if it was the butt pain again. I shook my head no, and tried, yet again, to make excuses. I lied that I was just uncomfortable sitting in a dress and that I was walking weird because it’s hard to walk in heels. My family didn’t buy it, they know that I’m a pro at walking in heels. They didn’t have time to argue with me because it was time to line up for graduation, so we separated to find our respective seats. Before I walked away, my dad stopped me and said, “you know, you don’t have to do this. If you’re not feeling up for it we can go home right now. We know you graduated, this whole thing is just bullshit.” I wish I had listened to my dad.0730743372004

Once seated, I knew I had made a grave mistake. Not only were the plastic seats uncomfortable to begin with, sitting on them after having butt surgery was excruciating. I shifted in my seat, trying desperately to find a comfortable position, but to no avail. I scooched back and forth, trying to cross my legs and take the pressure off the right side without drawing too much attention to myself. I thought about making a run for it, but all hope was lost when the ceremony began, and I was trapped. I couldn’t pay attention to anything being said. My head swam as I tried desperately to come up with an exit strategy. I texted my parents to find out where they were sitting, and I plotted my exit. I worried to myself, “Should I just get up and walk out? Should I leave after they call my name? Should I just wait till the end?” The next thing I knew, I was being ushered out of my seat to the front of the auditorium. Momentarily distracted, I excitedly thought, this is it, this is the moment I’ve been waiting for! Walking up the steps to the stage, I handed a sheet of paper with my name to the reader. Moments later, I heard “Brittany Creasor” boom in my ears. Are you kidding me? BRITTANY?! Um. you mean, Britten! Typical.

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I was furious. Not only had I sat through three hours of pure torture just to hear my name called, it turns out it wasn’t even my name that I got to hear. Feeling defeated, enraged, and exhausted, I carefully walked across the stage, received my diploma, and walked down the four steps to freedom. On my way back to my chair I truly debated just walking straight through the back doors, but my nerves got the better of me. I didn’t want to make a scene, so reluctantly I returned to my seat. When the ceremony finally ended and I was free to find my family I, again, put on a brave face. I didn’t want them to see how badly I was hurting because, honestly, I wanted to spend one last night with all of my friends before we all went home for summer and started our “big kid” jobs.

After noticing how drained I looked, my parents insisted I come home with them, reasoning that my friends and I could just get together over the summer. They didn’t understand, it wouldn’t be the same. Reassuring them that my boyfriend would drive me home the next day and that I really felt fine, my family reluctantly left and we went back to my old apartment to get ready for our night out. I tried to get into the party mood and forget about the pain, but it was so severe I was having a hard time. After being at the apartment for about an hour I finally gave up, I pulled my boyfriend aside and told him how much pain I was in; I couldn’t fake it any longer, I had to go home. Unwillingly, I explained to my friends that I wasn’t feeling well and said brief goodbye, promising to catch up with them over the summer. I didn’t go into detail about why I was really leaving. None of them knew I had even had surgery or was struggling with a chronic illness. I was too scared, embarrassed, and unsure of the situation to say anything. Even though I knew leaving was the right thing to do, I was still devastated to miss my last night of college because of this pain in my ass. It was so ironic that I almost had to laugh.