Life is unexpected. Unexplainable. No one has the ability to predict what is going to come next. Sure, you can make good choices and influence your future in a positive way, but no one has the ability to know exactly what is going to happen. I never expected to get sick. I never expected my life to change as much as it has. I never expected life to take me on this journey, but it has.
And the journey is not over yet.
Last month, blood work revealed that my inflammation markers are actually higher now than they were when I had active Ulcerative Colitis and I was treated for pouchitis (inflammation of the j-pouch) with a two-week round of antibiotics and probiotics. My symptoms lessened, but only slightly. That was enough, however, to give me the energy to go back to my weekly physical therapy sessions and begin walking again. I have been committed to giving my body the best chance I can at a successful and healthy recovery.
But as another couple of weeks passed, I began to experience pain, fatigue, and high frequency again. My diet began to condense as fewer and fewer foods were now agreeing with my j-pouch. In fact, after only a small portion of rice I found myself with severe pain, nausea, and loss of appetite: another partial obstruction. My partial obstruction cleared completely after nearly 12 hours and a very long night of little to no sleep, but left me weaker than before. Once again, my diet became smaller.
Sunday, after yet another partial obstruction on Saturday, I resorted to an all-liquid diet to attempt to ease the pain and give my intestine a little break from solid food. Digging out the can opener and pouring myself a small bowel of soup broth for breakfast brought the memories from my obstructions in April and May rushing back. This was a little too familiar.
Over the last month and a half the complications with my j-pouch have wreaked havoc on my body. I am now 81 pounds, dehydrated, extremely weak, fatigued, and in pain.
81 pounds is the lowest my weight has reached since my first surgery in August 2016 when I dipped critically low to only 72 pounds before my emergency total colectomy. My body is fighting a war and I am caught, once again, in the crossfire.
Thankfully, since the loss of my insurance in June that would allow me to go back to Johns Hopkins, I have been placed on a new insurance that will allow us to seek care there once again. Upon my approval just last week, I made an appointment with my surgeon right away. My appointment was scheduled for October 4th, but seeing as my health has declined so rapidly we began searching frantically for any way we could get to an earlier appointment.
Luckily, after many phone calls back and forth to Johns Hopkins to update them on my current state, we were able to get an appointment for early in the morning on Wednesday, September 20th. My surgeon would like to make the decision then whether to admit me directly to the hospital .
Am I scared? Yes, very. Do I feel defeated? Yes. My j-pouch, even with a bit of an adjustment period, was supposed to give me more freedom. Freedom from an ileostomy bag. Freedom to recover and grow and become strong once again. I made it up to 100 pounds before my second surgery last March. This was an incredible milestone that was interrupted slightly after my second surgery from months of obstructions, but that I hoped would come back even easier after my reversal. It is scary to look in the mirror and see my collar bones sunken in and my face white as a ghost. To see the gray tinge to my skin and the purple, sunken in look under my eyes. It is scary to feel severe pain and not know what is causing it. It is scary to stand up and have to steady myself to avoid passing out.
It is scary to watch my body fighting so hard to win, but losing strength quickly.
I have always been a firm believer that everything happens for a reason. We may not understand at the time and it may take years to finally completely understand, but when it does become clear, we understand why things happened the way they did.
There are many unknowns ahead of me in the next couple of weeks, but if there is one thing that I know for sure, it is that I am loved and supported unconditionally by my family and that is all I could ever ask for. My parents have slept on hard hospital chairs, ate some not-so-tasty-looking hospital food, missed work, driven me back and forth to appointments, held my hand through the pain and tears, carried me into the ER, advocated endlessly for my health and safety, and so much more. I could never thank them enough for always being there.
See you soon, Johns Hopkins.
- Kristen