Living with ulcerative colitis: Kristen’s farewell letter to her Colon

Living with ulcerative colitis: Kristen’s farewell letter to her Colon

After living with ulcerative colitis for over a decade, Kirsten has decided that it is time for her to say goodbye to her colon.

Dear Colon:

At this point, our relationship has become toxic and I cannot keep doing this. The constant merry-go-round of flares and remission has brought me to my knees. I’m conceding.

In the beginning, we had a symbiotic understanding and I respected you a great deal. In fact, you shielded me from the outside world. When I was a child, you held my fear and my repressed anger deep inside my little body. You helped me to stay silent when I needed to be unheard and unseen.

When I was in the second grade, my older brother had a bully at our school, and he scared me. Every time he spotted me, you would seize up because you could feel his rage emanating down the white linoleum hallway. I thanked the nurse when she said that I could go home from school because of the stomachache you created. You held my pain like clothes in an old chest of drawers, to be hidden away and maybe addressed later.

You continuously reminded me of your presence and all the work you were doing as I stumbled through the outward façade of “having everything together.” We both knew that was not the case, but you hid it well.

It was in my high school years that you began speaking louder. I fought back and grimaced through your outcries of muscle cramps and shooting nerve pain inside my abdomen. Once, I was in the car with Sarah, a good friend. She was driving us to school and the silence of the dark morning sky kept us both a bit lethargic.

“What does the pain feel like?” she gently asked as she looked at me.

I looked straight ahead at the road in front of us and instantly, my throat felt tight.

“Like a Charley horse inside your abdomen, but the cramping doesn’t stop, and it feels like your muscles are being ripped apart with each cramp,” I replied.

I don’t think you could contain my stress any longer, and you began creating your own at a fever pitch. But my ignorance to these bodily manifestations continued. I didn’t have time to listen to you because I was too busy in my extracurricular activities and studies.

I tried to ignore you until you started to bleed. Then I got scared.

Today, I look back at your diagnosis in 2009—ulcerative colitis (UC). I was told there was a 50% chance I would lose you if the medicine didn’t work, but in that moment, I just wanted to be fixed. The concept of surgery was too much to even approach.

After you flared and disabled my body for a few months, I thought the Remicade would be the forever answer to keep you quiet and subdued. I started the IV drug in an infusion center. Sitting next to cancer patients and other patients with chronic illnesses, I avoided eye contact, because their anguish could be felt through their weary eyes. Remicade saved you and allowed me to return to college in 2010, pretending to be healthy.

After living with ulcerative colitis for over a decade, Kirsten has decided that it is time for her to say goodbye to her colon. Click To Tweet

I write to you now because it has been over 12 years since my diagnosis, and I am tired of living with ulcerative colitis.

Now, you are yelling again. This flare started in July. But I pushed back against you and went rowing in the pristine Minnesotan lakes anyway. There is nothing like sitting in a small boat on the glassy water’s surface, seeing the peaceful stillness around the lake, where I can reach my hand down and feel the crisp, chill water against my fingertips. I can always breathe easier in this place. Each stroke feels like a beautiful meditation of the body’s ability to be strong and powerful.

But this summer, after each row, I suffered through the following days with crippling exhaustion and blood in my stool. This is what living with ulcerative colitis is like. I remember telling my mom that my ulcerative colitis was taking away the activity that I loved the most. The loss of rowing was also taking away the hope that I would ever feel better. Then, continuing through this winter, I tried to go on walks but couldn’t make it around the block because it felt like my legs weren’t strong enough to carry me. It has become too much and today, I’m not living anymore, only surviving.

I thought I was listening and adjusting to you so we could have that symbiotic understanding from my childhood again. I’ve fought to lower my stress. I’ve focused on my diet and nourished you when you’ve seemed depleted. I’ve exercised and given you massages, supplements, and cleanses. I even left a partner you didn’t like. “Self-care” doesn’t even begin to explain how hard I’ve tried to be healthy again.

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But you are too angry now, and I must let you go. Living with ulcerative colitis is no longer an option for me.

I’m not a quiet little girl anymore. Over the past decade, you’ve molded me into who I am. You’ve taught me to speak up for myself, using my words and making myself heard. I don’t feel the need to rely on your painful sensations to speak for me any longer. You’ve made my resilience deeper than I ever thought possible. By forcing me to question my own mortality, you’ve pushed me to understand the foundations of a good life. The people I surround myself with, the purpose I find in my work, the good health that is to be cherished—these are the needed cornerstones to feel peace in this life.

You’re so loud these days. So loud that it’s hard to sleep. I only have a few more weeks until the first surgery of the J-pouch series. I have three upcoming surgeries that will remove you, and a pouch from my small intestine will eventually take your place. I will hold on until you get cut out.

I don’t think I will miss you. I will adjust to life without you and just how beautiful that life will become. Without your constant need for attention and as a source of pain, I will have energy to devote elsewhere.

This is it.

I will soon have one less organ than most people around me, but I know that deep inside myself, I am in fact setting myself free.

Sincerely,

Kristen