Tuesday, July 31st:
I walked back to my car after work, carefully acknowledging each step on the concrete. When I reached my car I tossed my bag full in, letting some of the warm air ciculate out before closing the door. I carefully lowered myself into the seat and shut the door behind me. The air was stiff and warm, but felt good on my cold hands. I leaned back in the seat and felt my face get hot as tears welled up in my eyes and began streaming down my cheeks. I was in pain. So much pain. But still, I showed up for work and greeted customers with the biggest smile my cheeks would allow to make their day. I did not want anyone to know how much pain I was in. I did not want to admit that maybe I had pushed myself a little too far.
About a week ago I began noticing a dull pain in my lower pelvic area where my j-pouch and everything attached and surround it was removed and closed. I brushed the pain off at first, chalking it up as simply a pulled muscle. After all, I was feeling so strong for the first time in a very long time. But as the week came to an end, the pain continued to worsen. I was now limping when I walked, with each step sending a shock of pain through the area. Still, I chalked it up as a pulled muscle. But as the weekend came to a close and no relief came, I began to worry. I filled my primary care doctor in on my pain and she ordered bloodwork and a CT scan to make sure we were not missing anything. My bloodwork revealed inflammation and infection, but it was not until the results of the CT scan returned that everything became a little more real. Wednesday morning, as I was getting ready to head into a dentist appointment, my phone rings. It was my doctor with the results of my CT scan.
The CT scan had revealed nasty internal abscess near my wound site that would require surgery to resolve.
Surgery. Another surgery.
My heart dropped and my stomach twisted at the sound of those words. I never anticipated having to go back to Johns Hopkins and surely not sure another surgery. The rest of the day was a scramble of calls to Johns Hopkins, the insurance company, work, and other obligations. Making these phone calls felt unreal. Familiar, but unreal. We have been down this road so many times before and were greatly cherishing what we thought was a new chapter in our lives; a chapter that did not include doctors and surgeries and hospital stays. I try my best to always find the light and positivity in complicated situations, but I will admit that I did enough ugly crying that day for the rest of the year. In a matter of just one phone call, I was thrown yet another hurdle to overcome.
Friday morning threw us a huge curveball when I woke up to my abscess rupturing. But not only did not abscess rupture, it ruptured through the wall of another organ. I immediately called my primary care doctor and was told to go straight to the local ER. After more bloodwork, fluids, and a round of antibiotics, I was transferred to Johns Hopkins for observation that night. We made the long 5 hour drive back to Baltimore where I spent the next day under observation for any serious complications from my abscess rupturing. Unfortunately, because my surgeon was gone for the entire weekend, we were unable to talk about a plan moving forward, so I was discharged on Saturday to return Monday to see my surgeon in clinic. So, with barely any time to rest after a busy Friday and Saturday, we made the trip back to Baltimore on Sunday to stay in a hotel for the night for my early appointment in clinic with my surgeon. Sunday evening, I read my notes over and over again. I had chronicled the timeline of everything and wrote down questions and concerns to bring up during my appointment. The anticipation of the unknown, the uncertainty of the future, had my stomach in knots. This all seemed too familiar.
Monday morning I sat in the steril white examination room of the Johns Hopkins Outpatient Center feeling nervous, but almost numb. After an hour long conversation with my surgeon over what is going on in my body and what my options moving forward are, I walked out of the clinic on the schedule for surgery within the week.
On Friday, August 10th, I will return to Johns Hopkins Hospital for surgery #5.
Staying positive when you are in near constant pain is challenging and this week I have had to acknowledge all of the emotions coming my way. The sadness, the "why me?" moments, the moments of pure anger and frustration. Even if you are the happiest, most positive person in this world, you are going to have moments of doubt, weakness, and grief, and that is 100% OK. You can still be strong and unrelenting but need a moment to gather your thoughts. Illnesses, surgeries, or other tradgeties are not something that we are expected to go through without an ounce of emotion. I have been very open in documenting the good and the bad of my journey and I plan to continue to do so in hopes that it helps someone else going through a challenging time to know that you are allowed to grieve. This may not be what I anticipated my next journey to be, but I know I will get through it. I have already survived 100% of the days that I thought were impossible. I have overcome Inflammatory Bowel Disease time and time again and I will keep fighting until there is a cure for these diseases. You would think after so many ups and downs with this disease that my family and I would become numb to it all, but instead I think it is more of sense of "is this really our lives?" The drive to Baltimore has become all too familiar and we know our way around many of the halls within the massive campus that is Johns Hopkins, but everytime a new complication arises, we feel the same nerves; the same fear of the unknown. But when giving up is not an option, we just keep pushing. We maintain faith in the doctors who care for me and hope that whatever is wrong will be resolved.
What an incredible, unpredictable journey this is. - Kristen