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.


Only the Beginning: Chapter 2

I was admitted, for the first time in my life, to the hospital. I was instantly hooked up to an IV and given medication to help dull the pain. Needless to say, I was terrified. As soon as we got a moment alone, we called my dad and told him the news. His heart sank to his stomach as he heard the words, “she’s going to have surgery.” He worried about what to do, asking if he should come to the hospital? We told him no, there was nothing he would be able to do here. Before hanging up he told me he loved me. We said goodnight, but we both knew nobody was going to get very much sleep.

For hours, I waited to go in for surgery. Each agonizing minute felt longer than the last. The pain medication helped dull my senses, but I was still very uncomfortable and very nervous. I fought back tears by trying to make light of the situation. Odd, I know, but I always laugh when I’m nervous. Mostly, I joked about how student teaching had literally become a pain in my ass. I also made sure to email all of my teachers to fill them in on what was happening and explain that I wouldn’t be back to school for, what I assumed would be, a few days. My mom chuckled slightly and said, “Only you would be concerned about school at a time like this.” I forced a tight smile and nodded in agreement. The day had taken its toll on us; we were both exhausted.

Eventually, I was taken for surgery. It was a quick procedure. The surgeon drained the abscess and packed it with some gauze. I thought that I would get to go home immediately afterward, but they kept me in the hospital to monitor my recovery. The day after my surgery, when I finally awoke from my groggy, drug-induced slumber, I met with the surgeon who had worked on me. He introduced himself, explained what he had done during the procedure, and told me that he had some bad news for me. He explained that I had Crohn’s Disease, a chronic autoimmune disease and that it was the contributing factor in the formation of the abscess. I was devastated. I was confused. I was scared. I was bewildered. I was at a complete loss of what to do. “Crohn’s Disease? What does that even mean? How did I get it? What am I supposed to do now? Am I going to be okay?” I questioned. The only answer my surgeon had was that I would need to follow up with a GI. I would know more once a specialist took a look at me.

I sank back into my bed, devastated, scared, and tired. I covered my face with my hands and bit back tears. Out loud, I moaned, “What does this mean? What’s wrong with me? How did this happen to me? Did I cause this? Is it because of something I did?” There were no answers. Suddenly, overcome with fear and anxiety, I burst into tears. Sobs wracked my body as I cried hysterically, while my mom rubbed my back. I had absolutely no idea what to do. I felt scared and alone. And, honestly, I didn’t even grasp the full gravity of the situation. I didn’t quite realize what having a chronic illness meant, how it would affect me, how it would change me, the impact it would have on my life. Lost on me was the fact that this wouldn’t just go away, it would be something I would have to live with for the rest of my life, which was more than I could fathom at the time.

Eventually, I calmed down. My mom assured me that everything would be okay, that the surgeon had fixed me. Her words worked on me. I was convinced that I would be okay, that this was something easily treated. Neither of us had any idea how wrong we were. At the time, I was uneducated on chronic illness and Crohn’s Disease. It wasn’t anything I had ever heard of before. To my knowledge, I had never met anyone with a chronic disease or with Crohn’s. In my mind, it was just another sickness, like getting the flu or something.

While recovering in the hospital, I received a response from the advising teacher from my college who was in charge of my progress throughout student teaching. In her email, she explained that since I missed the last week of student teaching, despite starting a full month ahead of the scheduled start date and receiving straight A’s the entire time, I was going to have to redo the entire practicum. I couldn’t believe what I was reading. Panic and frustration washed over me. How was I supposed to deal with this on top of everything else? Not only was I trying to cope with being diagnosed with a chronic illness, being in the hospital for the very first time, and the incredible pain in my butt, now I also had to deal with the possibility of not graduating on time and having to pay for an extra semester of college because I got sick, something that was totally out of my control. Gulping back tears, I put on a brave face and got to work. I fought hard from my hospital bed, making frantic phone calls to try to sort everything out, all the while being pumped full of pain meds and heavy-duty antibiotics. I cried, a lot.

Once I was finally home from the hospital I figured this whole ordeal was coming to a close and that I would be back on my feet in a matter of days. Ha. There was a brief moment of peace. I felt “normal” for about two weeks. In those two weeks, I wrapped up all loose ends for student teaching (I passed with an A), I went to a Cubs game (they won), and then I crashed. Hard. A few days into the third week of feeling “normal” again, I began to notice the same butt pain starting to creep back into focus. I felt it, I could tell something wasn’t right, but it wasn’t severe so I tried to ignore it. Again, I came up with excuses to explain away the pain, like maybe I had done too much walking around at the Cubs game, maybe I drank too much beer, maybe I sat on those uncomfortable bleachers for too long. It wasn’t until I could hardly walk without crying that I finally broke down and told my mom that the pain was back. I felt like it was my fault, like I had somehow done something wrong to cause this. Why was the pain coming back?

Nervously, I explained to my mom that I had the same weird butt pain again. It was in the same spot as before, despite being promised the fiasco was over. I didn’t know why it was back or what caused it. I felt like my body had betrayed me. Why wouldn’t it just heal already? In addition to the pain, I was also feeling really, really tired. Like totally exhausted for no apparent reason. So exhausted that I needed to take a nap after I showered because I was just that wiped out. My body felt heavy and fatigued, like I had worked a 12-hour shift on my feet without a break, even though it was still early in the morning. At this point, it was no surprise to me that I had to get back to the hospital; something just wasn’t right.

This time the surgery to drain the abscess was a little easier, but being new to the whole “being sick” process, I was still terrified. I wasn’t yet used to dealing with doctors and surgeons, I wasn’t used to being in a hospital, I wasn’t used to being put under for surgery, I wasn’t used to being stuck time and again with needles. Trying to find a bit of comfort through the whole ordeal, I used the same hospital and surgeon as I had the last time, and this time I was scheduled for an out-patient procedure. At this point, I was just relieved I didn’t have to stay in the hospital and be poked and prodded all night long.

After my out-patient procedure, I was again told that this should be my last visit and that the packing should do the trick. The surgeon seemed convinced that this would be his last time seeing me, he said goodbye, and we parted ways. I was sent home with instructions to stay off my feet as much as possible and rest for the next few days while the wound healed. I was told that I should feel fine by the end of the week. Feeling confident that this whole mess was behind me, I relaxed, thinking this had to be my last surgery. I was getting pretty tired of dealing with the literal pain in my ass, anyways. In reality, I didn’t have the slightest clue that this was only the beginning.