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.