When it rains, it pours.
Throughout my recovery there have been many trials and tribulations, but for the most part I have remained on a steady incline to health once again. I have strived to remain positive, even in times of challenge, because my recovery is not a sprint, it is a marathon. Each week, my j-pouch has adapted more to its new role and allowed me to slowly reintroduce some of my favorite foods. My energy has returned, and with my combination of daily walking and weekly physical therapy, my body is growing stronger everyday. I have surpassed goals set for myself and marveled at just how resilient my body truly is.
This week, however, my recovery came to a screeching and unforeseen halt.
On Monday, I began noticing that I was feeling more fatigued than usual. My body just felt tired. Thinking that I simply overdid it the day before, I rested a little, but continued to push through my errands and at-home physical therapy exercises. But as Tuesday arrived, I began to notice more problematic changes. Not only was my fatigue even worse, but my whole body, especially my pelvic/ j-pouch area, was aching. Suddenly, my favorite "safe foods" were not agreeing with me and my day consisted of excusing myself from conversations because "I am going to run to the restroom real quick!"
I brushed my symptoms off as simply eating something like just did not agree with my j-pouch, although I could not pinpoint exactly what it was. "It will pass," I reminded myself as I ran to the restroom for the 15th time that day.
Wednesday arrived and I was exhausted. My usual 2-3 times getting up during the night had become 5-6 and my body was aching worse than ever. I was not about to miss physical therapy that morning so I powered through and headed out for my 8:00 AM session.
It was obvious during my session that my body was exhausted. My muscles ached more than usual and I felt sluggish as I worked through my exercises. As always, I felt much better after my session, but the effect was only temporary. I was now down to a very bland diet of applesauce, toast, tuna, and bananas to try to combat my distressed j-pouch and drinking water and Gatorade like a fish to curb dehydration. By the end of Wednesday, I was running to the restroom nearly 20-25 times.
Something was noticably wrong.
On Friday morning, now down 2 pounds and exhausted from a week of fatigue, soreness, headache, dehydration, increased frequency, loss of appetite, loss of sleep, and a low grade fever, I called my primary care doctor in search of help. Due to the complexity of my case, however, my primary care urged me to go to the ER instead, saying there was nothing they could do. Before going to the ER, though, I called the new GI whom I was recently accepted as a patient by. The approval could not have come at the right time given my current state. I called the scheduling department, explaining that I was recently accepted as a new patient and needed to set up an appointment. I explained my symptoms and asked for the earliest appointment available.
"The earliest the doctor can see you is January," the receptionist said.
I could feel the color drain from my face and my stomach drop. At the rate that I was going, I could not even imagine what state I would be in by January. I begged for an earlier date, explaining the severity of my symptoms again, but with no resolution. I could feel my eyes stinging as I hung up the phone and hot tears began to fill my eyes. What now?
I called Johns Hopkins Hospital next, leaving a message with my surgeon's nurse explaining my symptoms and asking if there was anything they could do to help. My surgeon's nurse called right back. She said I most likely had pouchitis, which is inflammation of the j-pouch. This inflammation is similar to the inflammation that overcame my large intestine last year. She called in two antibiotics and instructed me to keep them updated. As much as I did not want to go on antibiotics again, it was relieving to finally have an answer. Then West Virginia Medicaid stepped in.
Because Johns Hopkins Hospital is outside of the network, I was denied return to them in June and Medicaid also refuses to cover any prescriptions ordered by them. Just as quickly as I had found a resolution, I had lost it again.
In a last effort, we made a call to the GI at Ruby Memorial Hospital that had first diagnosed me with Ulcerative Colitis in March 2016. His PA, whom I had seen several times last year as well, had an opening the very same day at 2:40 that day and with that my mom and I made our way to Ruby Memorial Hospital in Morgantown where it all began.
As my mom and I waited in one of the small, sterile rooms, I twirled my pen between my fingers and scanned the notes that I had written down to tell the doctor, including my symptoms and what had happened since I last saw them in June 2016. I find that writing things down makes appointments so much more efficient and ensures that I do not forget to tell the doctor any important information. The PA came in, followed by a student who was shadowing her. I ran through my history and explained my symptoms as she interjected with occasional questions of clarification. She explained several causes of my symptoms including: infection, pouchitis (inflammation), or Crohn's Disease. Although unbelievable, there are cases where patients are diagnosed with Crohn's Disease after having their large intestine removed and j-pouch created. For this reason, she ordered blood work, stool samples, IV fluids, and a scope.
My scope is scheduled for next Thursday, August 24th.
Before starting antibiotics, they would like to have the full results of the blood work, stool samples, and scope back. Instead, I have been placed on one of the most powerful probiotics, VSL#3. This particular probiotic has earned high praise for its success in helping to keep j-pouches healthy, but comes with a hefty price tag. VSL#3 is $174 for a 20-day supply, not covered by the insurance, and I have been prescribed it indefinitely.
Luckily, the office has their own infusion room where I was taken to receive my IV fluids. Despite my efforts to drink as much as possible, I had become pale and dehydrated throughout the week of battling with inflammation.
After 3 nurses, 5 pokes, 3 blown veins, an ultrasound, and some tears, my blood work was drawn and my fluids were started. Because placing a successful IV took over an hour, my infusion was not over until 7:00. In the meantime, some of my blood work had come back so the PA came in to discuss it with me and my mom.
My blood work showed my inflammation markers profoundly elevated, proving that something is, in fact, very wrong. My inflammation levels now actually far surpass all of my levels from last year when I was battling Ulcerative Colitis (excluding the levels at my very first diagnosis). Another battle has started and this is all too familiar.
A little over a year ago I was sitting in the exact same chair receiving fluids and hearing the news of my high inflammation markers. The sights, sounds, and smells brought those memories of my battle with Ulcerative Colitis flooding back, more vivid than ever.
We truly do not know what the future has in store for us. Life is like a roller coaster, full of twists and turns and a few gut-wrenching drops. We may not be able to control what life chooses to throw at us, but we can choose how we react to it and what we make of it. This week was disheartening beyond words. I have been eating right, going to physical therapy, walking, resting- I have been doing everything in my power to give my body the best recovery possible, so to be hit with a diagnosis of Osteoporosis and begin battling inflammation again in a matter of a couple of weeks is so defeating.
However, these setbacks, though challenging, are so minuscule in the grander picture of life and I plan to continue to spread as much awareness, positivity, and gratitude as possible. My journey has only just begun.
"For someone as sick as you are, you are the most graceful person I have ever met," the PA told me during my infusion and before leaving the office well after hours.
When it rains, it pours. But without rain, there would be no flowers.
- Kristen