"You Can't Drive Forward if You Are Always Looking Back"
Before my diagnosis, I was a busy college student who loved running, kayaking, and stayed healthy much of the time, so when I began experiencing bloody diarrhea, severe cramping, weight loss, and dehydration, I had no idea that I was beginning a very long, life-changing journey battling Inflammatory Bowel Disease.
In March 2016, I was diagnosed with severe ulcerative colitis. I was placed on all of the “tried-and-true” medications to control UC, including the biologic, Remicade. I did not respond to any medications, though, and during on my third Remicade infusion, I had a life-threatening allergic reaction. The infusion was stopped, emergency medicines were administered, and my most promising chance at Remission was taken away. In July 2016, I was diagnosed with a secondary infection of Clostridium Difficile, which also attacks the colon. My infection was highly resistant to even the strongest antibiotic available and was a turning point in my journey. With both my severe ulcerative colitis and C. Diff. both attacking my colon, I had lost over 40 pounds, I was dehydrated, anemic, and could no longer eat or drink. I had blisters and ulcers all over the inside of my mouth and down my throat, was in severe pain, and running to the restroom over 40 times a day.
It was at this point that my primary care doctor told my dad, “she’s not going to make it.”
At that, my parents rushed me 5 hours away to The Johns Hopkins Hospital in Baltimore, Maryland for care. I spent the next two weeks fighting for my life before I was faced with needing a total colectomy to save my life. Days before my surgery I could no longer walk and was losing consciousness every couple of minutes. My body was shutting down. I went into what was considered a very dangerous surgery due to my health condition at only 72 pounds.
My recovery from my first surgery was long and very difficult. I went home with a PICC line for fluids and began at-home physical therapy to help build my muscles again. I had lost nearly every ounce of muscle on my body and could not even lift my own foot. Adjusting to my ileostomy was also a long, painful process that involved many tears and learning to accept my new body. My dad, who also had UC and has been living with an ileostomy for over 20 years, was a guiding light in helping me navigate around my new ileostomy.
Perhaps the most painful part of my entire journey has been losing my hair. Several months after my first surgery I began losing clumps of my hair. I remember going to my mom with a handful of hair and tears streaming down my face, devastated that I was quickly losing my hair. By February 2017, I had lost almost 90% of my hair. Even as my hair has begun to grow back, the pain of losing it is still extremely painful.
I decided to pursue the 3-step route to create a j-pouch, which is an internal reservoir that would allow me to no longer require an ileostomy bag. In March 2017, after reaching 100 pounds for the first time since my diagnosis, I had my second surgery to create a loop ileostomy and build my j-pouch. However, scar tissue right at the entrance of my stoma caused 2 months of obstructions, requiring a Hickman line for TPN and moving my third surgery to remove my loop ileostomy and connect my j-pouch up to May 2017. Getting my j-pouch and going bag-free for the first time in over 9 months, I was so excited and optimistic. But, after only three months with my j-pouch, I began having severe pain, 20-30 trips to the restroom a day, weight loss, and blood in my stool. My diet began to shrink and shrink until I could only tolerate bread and soup. Blood tests revealed extremely high inflammation markers that even exceeded my levels when I had active UC. I was placed on both probiotics and antibiotics but failed to respond at all. I was now very sick, anemic, and mal-nourished again and it was at this point that it became clear that my j-pouch needed to be removed.
In September 2017, I had my j-pouch removed and a permanent ileostomy formed. Biopsies of my j-pouch revealed severe inflammation that had spread to the anus, rectum, and part of the small intestine with ulcers, and abscesses. My j-pouch was only weeks away from a dangerous perforation. The removal of my j-pouch means that I am now living with a permanent ileostomy.
Although adjusting to my new ileostomy was much easier this time around, accepting the fact that my ileostomy is now permanent has been challenging in itself. There is no second chance; no alternate option. But each and every single day I learn to love and accept my journey a little more. I remind myself that my ileostomy saved my life, not once, but twice. I have a long recovery ahead of me, but I have come too far to give up now.
I have slowly begun incorporating light walking and yoga into my daily routine, as well as light physical therapy exercises to safely strengthen my body again. It can be very disheartening at times to realize that my body just is not ready to do what I would like to do yet.
Something that has helped me tremendously throughout my journey has been to live in the present moment. With any chronic illness, there are so many uncertainties and fears about the future, as well as painful memories of the past. These can be so overwhelming at times and rob you of the present moment. For this reason, I strive to live minute by minute and day by day, taking in as much of the present as possible. A great way to think of it is to imagine looking in the rear-view mirror while driving: it is OK to glance back every once in a while, but you cannot drive forward if you are always looking back.
I urge anyone who is currently battling Inflammatory Bowel Disease or has just been diagnosed to reach out to others. Whether that is your family, friends, or other trustworthy figures in your life, it is so important to surround yourself with a support system. These diseases can be so scary and very taxing emotionally, so having loved ones to talk to helps so much. I cannot even count the number of times that I have sat in front of my mom, dad, or sister in tears, often times unable to even put my emotions into words. Another amazing source of support that I have found is social media. Through social media platforms, like Instagram, I have met so many incredible people fighting similar battles to mine. The advice, support, and love that I have received is truly invaluable.
At times, these diseases will challenge every ounce of strength that you have. But through the pain and the tears, you will become stronger- braver- than you ever could imagine. Your disease does not define you. It is your will to wake up every single day and fight battles that most people cannot even imagine that makes you, you. Use your journey to spread awareness and inspire others.
And remember: even during the darkest of times, the light will ALWAYS find a way.