5.03.2017

The One Thing I Need You to Know About My IBD

Well over a month ago, a relatively new friend of mine and I were in conversation over lunch. We were catching up about all the things college girls do-- boys and homework, boys and homework. About mid-conversation, I had a moment where I thought to myself "I feel normal right now."

Not even a split-second after that thought crossed my mind, my new friend asked "Kenzie, how has your health been?" I started by giving her an elevator speech overview of sorts. There's low blood counts. I'm still dropping weight unintentionally. A lot of my days/nights contain vomit. Lots of vomit. I'm frustrated. I'm anxious. I'm scared.

She looked at me from across the table and said "Kenzie, I don't know how you do it. I can't imagine how daunting these surgeries must be. How scary it must be to make treatment decisions..." I nodded my head. Those things are scary. That was a validating statement. The conversation carried on and I didn't think of this exchange again until I found myself on the bathroom floor last night. And that's when it hit me.

I had left my night class early due to yet another wave of nausea and made it back to my dorm room. Ophelia was there waiting for me; napping on our little twin sized dorm bed sweetly and soundly. She was excited to see me as she always is after we have a few hours of "break" time from each other.

I clipped on her collar, clipped on her leash, and we headed outside for a potty break. On our way back in, I realized I was going to be sick. Making it back to the toilet in time, I threw up my stomach contents for the umpteenth time in 24 hours. I stumbled to my bed, snuggled next to Ophie, and tried to breathe deep and slow. When I had regained some strength, I reached over to my nightstand and grabbed some baby wipes which I used to wipe my mouth and nose.

Shortly thereafter I excused myself to the bathroom. Not a second after I sat down, I realized I was finally going to 'go' after some back up over the past several days. I pulled up my pants and quickly skittered across the hallway to my bedroom where I grabbed the baby wipes and a brown paper bag from my colorectal surgeon's office. Upon returning to the restroom, I placed the little white hat from this bag underneath the toilet seat and proceeded to go to the bathroom.

After cleaning myself up and pulling back on my owl printed pajama pants, I knelt on the floor by the toilet meticulously opening sterile bags and bottles and carefully placing the correct amount of stool into each one. Around the time I opened the third of seven bottles, I noticed my bottom lip was quivering. Upon opening the fourth, I felt the tears start to flow...and before even reaching for the fifth, I sat back against the door frame and began to violently sob. Tears that had built up over YEARS of humiliation, frustration, confusion, and hurt finally broke through. And for once, I let them.



If there is one thing you ever know or learn about inflammatory bowel disease...please, please, please, let it be this. These are the moments I am scared of. The moments I am behind closed doors and quite literally find myself shoveling my own shit into vial sized containers to be sent away and tested. The moments where all of the built up animosity towards these diseases and the embarrassment they cause comes crashing down. The moments I am reminded that this is my life. That this is what it has become...and that this is what it will be for the foreseeable future.

To be quite honest, I'm not scared of surgeries. I'm not scared of treatment options, vomit, and long nights spent in a cramped ER. I'm not scared of a new diagnosis, an abnormal test result, or even unaccounted for symptoms. But what I am absolutely pretrified of is the moment pictured here-- a moment in which I am truly and utterly alone; humiliated beyond belief and at the very end of my rope. I am scared of the pain that even my closest friends and family members cannot enter into and sit with me in.

THAT pain is the pain I have to deal with and carry completely on my own. THAT pain is the pain I can't tell you about the next time you ask me how I'm "really" doing merely because it's taboo to talk about your inflamed bowels, stomach dysmotility, and rectal pain on the internet or otherwise. THAT pain is the pain that reminds me I am absolutely scared. Oh, how absolutely scared I am.

THAT pain is also the pain you do not, cannot, and likely will not see or experience for yourself. But THAT is the pain I need you to know about. THAT is the pain I need you to hold for me while I cry out the frustration and allow myself a moment to be the broken body + soul that I am.

THAT is the pain, and it is so relieving to finally just. feel. it.


4 comments:

Becky Goerend said...

Thank you for always being so brave and sharing your story. You have to know that it's helping people. <3

Rick said...

Kenz, I also care little about what is obvious to others. My fears have changed over the years. Sometimes they are fears for myself and other times they are for others, but I can honestly say that what most folks regard as the worst is not even close. Blessings my friend.

Hall Around Texas said...

Kenzie, I think about you and pray for you often. Thank you for sharing your story. I know that it's helping others.

Sarah @ Back to Carolina said...

Kenzie, I read this and cried. You are such a strong person to put what so many people are scared of into words and be their voice. Now they can share this post with their friends as food for thought. Maybe one person will be a little bit more compassionate towards a sick friend, which can make all the difference in the world. And you were so brave to share this.
I've been reading your blog, watching your Instagram, and talking with you online for such a long time. It breaks my heart to see your health deteriorate, but I feel proud to say that I know you in some small way. You have such a gift for writing and healthcare advocacy. You will do great things even when you are scared. You inspire me to get out of bed some days. You make me feel less alone as they pile diagnosis upon diagnosis on me.
If you mean this much to me, you mean so much to so many people.
Xoxo