When I was diagnosed with severe Ulcerative Colitis March 2016, my world was flipped upside down in a very short amount of time. I went from annual "good health" visits at the doctor's office to spending weeks at a time in the hospital under very strong antibiotics, anti-inflammatory medicines, steroids, and biologics. I dropped over 40 pounds in a span of 5 months and became so weak that I could barely walk. I developed blisters in my mouth and throat and had severe nausea that made eating or drinking very, very painful. I experienced pain from my severe Ulcerative Colitis and C. Diff. so intense that I nearly blacked out several times. I required TPN and fluids and a blood transfusion, just to keep me alive. Days before my total colectomy in August 2016 I was losing consciousness every few minutes from my body simply shutting down.
The pain did not stop after my first surgery, though. Upon returning home I was too weak to even lift my own legs. I had just had my entire large intestine and appendix removed through 3 small incisions on my stomach. I had a PiCC line in my arm for daily lactated ringers and home health nurses and physical therapists visiting multiple times a week. But above all, I now had an ileostomy bag. I had stitches around a part of my small intestine sticking through my lower stomach that I would learn was my "stoma" and it saved my life.
From April to the middle of May, I suffered through constant obstructions of my small intestine after my second surgery, preventing me from eating or drinking for over a month. I had a midline placed, removed, a PICC line placed, then removed, and finally a Hickman line placed in my chest for TPN.
After my third and final surgery I had 7 staples holding a 5 inch incision closed that eventually began to rip through my skin as my incision opened up an inch wide and long. I pulled a staple from my own skin.
The last year has been challenging both physically and emotionally. I have experienced pain that I could never fully describe and emotions that I will never forget as I made some of the hardest decisions in my entire life. My severe Ulcerative Colitis and C. Diff infection took my entire large intestine and came very close to taking my life. But this disease also took something else very near and dear to my heart: my hair.
In October 2016, only two months after my first surgery, I had began moving around a little more and adjusting to my new life. I was still very weak, but was moving around my room, walking the hallway easier, and showering with little help.
During that time, I wore my hair in a single braid most of the time just to keep it out of my face, so when I would take it down to wash it and noticed some hair in the brush and coming from the ends I did not think twice, as a normal person sheds many pieces of hair each day. Each time after brushing my hair I would neatly braid it again. Was my braid looking smaller? I stared in the mirror at it for several minutes but decided that it was just my lack of styling products to give it volume and moved on. I had many other things to focus on.
But as November came, bringing cool, dry air and beautiful changes to the leaves, I began to notice that something was not right. One evening after one of my showers I brushed my hair, noticing a lot more hair tangled in the brush than usual. I gently ran my fingers through the ends, freezing when I finished with a clump of hair wrapped around my fingers. The color washed out of my face and I could feel my stomach twist as I looked down at the clump of hair in my hand.
Something was very wrong.
Each day after that I began losing large clumps of my hair at a time. Each time that I braided my hair the braid became smaller and smaller and by December, I had lost nearly 60% of my hair as small bald spots began to appear. One day, after combing through my hair with my fingers and returning an entire pile of dry, faded hair, I went to my mom in tears, sobbing as I clenched the hair in my hands.
I was losing my hair. All of it.
By early January, I had lost almost 90% of my hair. Bare patches covered my head and the color was if it had been drained from the few remaining strands. My once vibrant red hair was now a washed out brownish-gray. I was devastated. Through all of the pain of my illness and surgery, I had never experienced a pain quite like this.
Losing my hair was something that I never expected to accompany my illness. While I was able to prepare myself for my surgeries to a certain degree, there was no preparing for the rapid loss of my hair and nothing to take away the pain that came with it. I made an appointment with my primary care doctor to discuss my hair. As I pulled the small hairband that was loosely wrapped around a very small bundle of hair, my primary care doctor moved in to look at my hair. Her face fell. "It looks like you are going to lose all of it," she exclaimed. "What little is left is already dead." Again, I could feel my stomach twist as hot tears began to blur my vision.
My hair loss was attributed to not only the powerful, toxic medications that I was on to fight my Ulcerative Colitis and C. Diff., but my overall state of health. My body had fallen into such a dire condition that it stopped sending nutrients to my hair, skin, and nails, and put all of its effort into my dying colon and preserving my vital organs. That is why, as well as hair loss, my nails stopped growing and yellowed and my skin became dull and gray.
It was in February that, after a long heart to heart with my mom, I decided to make an appointment with John Rutter Hair Solutions in Morgantown for a wig consult.
My finger hovered over the dial button on my phone for several minutes as thoughts rushed through my head. I wanted more than anything to simply wake up and my hair be just as it was. But unfortunately that was not possible, so it was time for me to begin accepting my current situation and remain as positive as possible for the sake of my healing body. I pressed the dial button and as the line rang, my stomach did flips.
The day of my consult was a dreary and cold one with a light blanket of snow on the ground from the night before. My mom came with me for support and I made my way to the office of John Rutter Hair Solutions. I was taken to a private room where I met the owner, John Rutter, and his hair stylist, Stevee. John and Stevee were so incredibly kind and made me feel at home, easing my insecurities about my hair. After measurements and color sampling, I now had to wait several weeks for samples to come in the mail. As you can imagine, finding a wig to match my natural hair color was nearly impossible. But that was not going to stop the team at John Rutter Hair Solutions.
A couple weeks later I received a call from the salon saying that one of their suppliers had not just sent samples, but a full wig. "I think you're going to love it," they exclaimed. I agreed to come in the next day to view the wig. Although I was excited, I was reluctant as my mind yearned for the past. I just wanted my hair back. But I kept reminding myself that this was my new reality and I needed to embrace it with open arms.
When the team at John Rutter Hair solutions brought in the wig, I was overwhelmed. It was nearly the exact reddish orange color of my hair before I got sick. They helped me put the wig on and turned my chair to the mirror. Looking back at me was the old Kristen- the Kristen that I had seen in the mirror for 22 years before. For a brief second, I completely forgot about my illness and everything that had happened. Tears began to stream down my face as I turned to my mom. Tears were also streaming down her face. I knew then that getting a wig was the right decision for me.
While my wig did not take away the pain of losing my hair, it did empower me and help me to cope with my very rapid and unexpected hair loss. If someone had told me last March when I was first diagnosed with severe Ulcerative Colitis that I would end up losing almost all of my hair, I would have never believed them. In fact, I never expected any of this. I never expected to lose my colon. I never expected to almost die from an illness that I only was diagnosed with 5 months prior. No one ever expects their life to change so rapidly in such a short amount of time.
But here is the thing: our bodies are truly amazing and resilient in ways that we will never fully understand or appreciate. By the end of February, I began noticing very short, pointy pieces of "fuzz" growing in. My hair was finally starting to grow back. It was many different lengths and stuck up in the oddest of places, but to see new growth was overwhelming to me. My body was finally bouncing back from months and months of illness, sending nutrients to my hair and nails. I was on the road to health and despite my couple months of obstructions in April and May, my hair continued to grow, thickening every month.
Now, as we approach the end of July, my hair has grown a substantial amount and started to get its signature reddish-orange hue back.
I will never be able to fully describe the pain that came from losing my hair. With no warning one of my worst fears had now become my reality.
And it still hurts.
But perhaps the best advice that I can remind both myself and anyone else who is grieving from the effects that an illness has had on their life is that this is all temporary. I know it can feel like a lifetime, but better days are always ahead. I promise. You are more than your hair loss. More than your symptoms. You are more than your illness.
I chose to overcome the pain of losing my hair in private, but I cannot thank everyone for their endless love and support throughout the last year and a half. You have been my lights in the dark and I am so incredibly thankful.
"Happiness can be found in even the darkest of times if one only remembers to turn on the light." -Albus Dumbledore
- Kristen