The Progression

It feels like yesterday and it feels like a year ago when I posted a mess of a GI update. I wrote it just to write again and get some information down somewhere. I was journaling a lot, but I needed the chronic community to come alongside me as I waited for test results and began to pursue surgical options.

This blog has grown with me over the past 6 years. It has nurtured honesty and it has taught me the value of telling it like it is. And so, even though the GI issues I've been facing for the past year felt (and inevitably ARE) uncomfortable/embarrassing/what have you, I just felt like this blog needed to continue growing with me. So I wrote. And I posted that writing online...right here on Life According to Kenz.

And I'm thankful I did because things have since progressed fast and furiously. On April 4th, 2016 I will be having a subtotal colectomy. 

A subtotal colectomy consists of removing a majority of the colon (large bowel). Unlike in a total colectomy, my rectum and anus will be left untouched. My small bowel will then be joined to my rectum. This part of the procedure is called ileorectal anastomosis. According to my scopes last Friday which showed minimal inflammation in this area, there is no need for a stoma or ileostomy/colostomy bag at this time! (HUGE praise!)

My blog is going to become a CaringBridge of sorts over the next couple of months (pre-op, op, and post-op), so I want to get logistics down here for those who may not know me well. I am truly trying my hardest to respond to comments, emails, messages, etc. but it is impossible to get to them all in one sitting. Just know that I read every single one and each of them sustains me during the dark moments that inevitably still plaque me from time to time. This is my best (and probably failed) attempt at getting some answers down all in one place. :)

"So, how the heck did you get here?!" Back in September, it was suspected that I was developing early stage Crohn's disease (another autoimmune condition). However, after further investigation and invasive testing, we discovered that majority of my abdominal/GI/bowel symptoms are being caused by something called colonic inertia or severe slow transit constipation. I was officially diagnosed in January.

"What is colonic inertia?" Colonic inertia is a motility disorder. It is also referred to as an abnormal passage of waste throughout the digestive system. My colon (for unknown reasons at this time) is simply working FAR too slowly and refusing to contract on its own. This causes extreme constipation which results in excruciating pain, loss of appetite, and round-the-clock nausea and vomiting.

"You've had constipation issues for awhile...so why are you having surgery now? Is it urgent?" Well, the short answer is no. It's not a matter of life/death. But it is a matter of quality of life/no quality of life. Let me explain. The past year has been awful, but I have accepted most of the symptoms as my reality. That is, until said symptoms started to affect my ability to get out of bed in the morning, go out for dinner with my friends, or get a good nights sleep in my bed...not on the bathroom floor. The reason we started pursuing surgical options is because my ability to function independently is decreasing with each passing day and I have now lost 35 pounds due to my inability to eat/hold things down.

"How long is recovery time? Can you have visitors in the hospital?" Recovery time can be anywhere from 5-14 days in the hospital depending on how the surgery itself goes. There is plenty of room for complications just as there is with any surgery, but the potential pros at this point far outweigh the potential cons. I can certainly have visitors in the hospital (and at home!) and will happily put you in touch with my mom should you want my hospital/room information. After I am discharged from the hospital, there is a 6 week period of no lifting/activity beyond walking and a 4 week period of no driving. I will NOT be bedridden (mark my words)...

"Are you dropping out of school?" ...but I will also be in no state to be manage 15 credits and two on-campus jobs. I have withdrawn from two classes, will be taking an incomplete in one, and plan to finish both an online course and night class pending my professors accommodations. I plan to be back at Bethel in the fall, but will be moving home for the remainder of the semester at the end of this week. And by the way, "dropping out" is a swear word (swear phrase?) in my book. Don't ever say that around me, and definitely not to me. ;) 

"Are you still going to the Dominican Republic over spring break?" I failed to publish a blog post about my excitement to go to the Dominican over spring break with a missions team here at Bethel...but I shared that with many of you in real life. :) However, after meeting with my surgeon and confirming surgery dates, it was decided that the infection risk is far too high for me to be traveling out of the country, returning, and then having a major operation (involving removing an organ). I am heartbroken and hate that it feels as if I am "losing" another bit of independence thanks to the condition of my health, but I know that the rest of my team will have a life-changing experience there.

"How can I support you?" Continue asking questions and please continue sending prayers. I feel them. I also so appreciate the words of encouragement through messages, conversations, and cute little cards. :) Words of affirmation is my love language! The night before I met with the first colorectal surgeon on this journey I kept repeating "I choose peace" under my breath until I fell asleep. I was so afraid of hearing what I didn't want to hear the next day. The night before my scopes last week, I simply thought "I can't wait to spend time with my mom tomorrow!" I felt content. Really. At the end of the day, I am anxious and afraid as any patient would be leading up to a major surgery, but I trust my team of doctors and the support system surrounding me. And you know who else I trust? The God that has brought me this far and continues to promise me healing.

At MedX in September of last year, I met a beautiful woman named Breck. She has a young warrior son named Bennet who has battled Cystic Fibrosis and its complications since birth. She chronicles her family's journey with the disease on her blog. Her writing has such a focus on what you would know, see, feel, etc. if you were in her position. The vulnerability she exudes is contagious and simply being a reader of hers has made me a better empath and advocate.

My only goal these next couple of months is to write and share more honestly than ever before, just as my friend Breck has. As I grew up dealing with constipation issues, I was so terribly embarrassed and ashamed. As those constipation issues turned into much more serious complications such as duodenal ulcers and anal fissures, I felt completely and utterly alone. It is my hope that through sharing my journey (the good, the bad, and the ugly), even one person would realize that they are not isolated in their suffering. That sounds cliche...but I would've given anything to be that one at the start of my chronic health journey.

I will update as I know more, but for now I leave you with words from the incredible Henri Nouwen. In his book "Turn My Mourning Into Dancing" (which I am currently reading) he writes,

"True gratitude embraces all of life: the good and the bad, the joyful and the painful, the holy and the not-so-holy. We do this because we become aware of God's life...God's presence...both of which are in the middle of ALL that happens."