“No Guts, No Glory?”

2nd Stomaversary.jpg“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.” 2 Corinthians 4:16

This past Sunday was my 2nd “stomaversary”. I’ve been doing life with my ileostomy bag for two years. I spent that morning reflecting on God’s faithfulness and goodness in my life. It’s been challenging, no doubt, but I’ve been undeniably held by grace.

However, the joy and gratitude I’m feeling as I pass this anniversary, is mingled with a heavy heart over the undeniable truth that my body is wasting away. All of our bodies are, actually. Mine is just doing so at a more rapid clip.

Three weeks from today, on Thursday, December 1st, I’ll have my 22nd (23rd if you consider my C-section) surgery; this time to remove my entire colon. It’s a decision that has been hanging in the balance since I had my ileostomy put in and it will be a relief to not have the weight of that decision lingering over me anymore.

This past June, I began to have severe abdominal cramping that would make me nauseous and vomit. It would occur every evening and so after a week of this, I called my colorectal surgeon’s office to discuss. After some back-and-forth about what may or may not be causing the cramping, I finally asked if they could do an X-Ray of my colon, just to give me peace of mind that everything was OK.

After having the X-Ray, his office called me before I had even arrived home from the hospital, to tell me that my colon was completely compacted with stool and they were pretty taken aback by it. I felt absolutely blindsided. I was constipated?!? I had no idea that this was even possible while living with an ileostomy.

Apparently, when you have a loop ileostomy (which means that my colon is still partially connected to my small intestine at my stoma) there is a rare chance that stool can still back up into the colon. For these past two years, I had been under the assumption that there was only one hole in my stoma, the one in which everything empties out of my small intestine and into my bag. I’ve since learned that there are TWO holes and the second one leads directly into my colon (surprise!!).

Once I had this all figured out, we were left with the issue of emptying out my colon. This was problematic for many reasons, but the main one being that due to severe nerve and muscle damage in my colon, Senekot laxatives (overdosing on them) had been the only solution for constipation, pre-ileostomy. However, Senekot must interact with enzymes in the colon in order to be activated. Because of my ileostomy, Senekot wouldn’t even make it into my colon anymore, so that option was out.

The alternative was to begin doing an “irrigation” process of sorts. Let me preface the description of this process by saying that the colon, small intestine, and my stoma (the opening in my intestines that “hangs out” on my stomach) are NOT sterile environments. They were created to handle hard-core bacteria. Therefore, when doing this irrigation process, keeping things sterile wasn’t a concern. I mention this because it was a significant mental hurdle that I had to sort through, as it just seems so bizarre (and probably will to you, as well).

During this irrigation process, I can’t have an ostomy bag covering my stoma, so my small intestine is still emptying waste as I’m doing this. I take one of my straight urinary catheters (I’ve self-cathed since I was 9 because of nerve damage to my bladder) and insert it into the hole in my stoma that connects to my colon. It’s about 6” of tubing that goes inside me and it’s extremely uncomfortable. The first time I did this, I got a little queasy, as I can feel the pressure of the tubing as I snake it up into my colon. Once the catheter is in, I inject about 2-4L of fluid into the tube, using a large syringe. The fluid is the same nasty stuff that you drink before a colonoscopy (Can I get a “nod” of understanding from my 50+ audience out there;)). This fluid then flushes everything out of my colon. I won’t go into too much detail of the process, but I can assure you it’s not fun and causes several uncomfortable and inconvenient side effects.

After completing this process twice in the last three months, and each time having my colon full of stool, we’ve decided to go in and remove my entire colon, which will permanently prevent this from happening. Deciding to voluntarily remove over four feet of healthy organ from myself was not an easy decision, but even less so since I am only 31 years old (I like to think that is still young). We approached this decision as we always have tried to do, with focused prayer for wisdom, the skilled advice of my doctors, and time to process and weigh my options. Chris works in the medical device industry and we know how quickly technology can be developed and changed, so we’ve learned to take all of this into consideration when deciding to permanently alter the function of my body.

The surgery takes two to three hours and they will leave my rectum (if you’re feeling biologically “lost” at this point…google it). Leaving my rectum intact will allow for things to be reconnected, if technology does go in that direction in the future. It also will prevent my uterus and small intestine from falling down (which sounds horrible). The majority of the surgery will be done through four or five laparoscopic incisions in my abdomen and then one larger incision (about the size of a credit card) below my underwear line, where they will pull my entire large intestine out. Kind of like a c-section…except, “Surprise! It’s a colon!”.

Since the colon is such a vascular organ, blood loss is the main complication to be concerned about. The colon is connected to the stomach, liver, and spleen, so please pray that as my surgeon is disconnecting all of these vital organs, blood loss stays at a minimum. My stoma will stay in the same spot it currently is, but it will have to go through the healing process all over again. I feel thankful that I have already experienced this part of the recovery and am praying that it makes the entire process a little easier. I will be at Aurora St. Luke’s Hospital in Milwaukee for a minimum of three days following surgery, to monitor me for any infections, vascular tears, internal bleeding, etc.

The timing of this surgery is not ideal, but I’m thankful that this will force me to slow down during the month that is often my craziest of the year. I’ve learned (and written a blog post) about the treasures that can be found in the monotony of forced rest and I am eager to have stillness to focus on the celebration of Jesus Christ’s birth. They estimate the recovery time to be 4-6 weeks and it mainly consists of exhaustion (from blood loss).

As I said, I know that this is an especially busy time of year and in light of the recent election, most of us are emotionally exhausted. But it would mean so much to Chris, Promise, and me if you are able to pray for us as we tackle yet another alteration and change to my body and our day-to-day lives. Praying is a matter of the heart and can be done while driving, wrapping gifts, cooking, or any other “mundane” activity. We have seen the indisputable results that come from the power of prayer in my life and so that’s why we’re asking for this.

Thank you, friends! And may you continue to experience HIS presence in your life and the peace and joy that only the Holy Spirit can bring through the understanding of Jesus Christ’s resurrected body from the grave.

“For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.” 2 Corinthians 4:17

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About Adri

Jesus died for me, so he gets my life. Chris married me, so he gets my heart. Promise came out of me, so she gets my time. Creativity was given to me, so it gets my passion. Spina Bifida and Chiari won't leave me, so they get my fight. My family supports me, so they get my honesty. My friends encourage me, so they get my loyalty. My dog is tiny, soft, and warm, so she gets my lap. My words are me, so they get this blog. View all posts by Adri

14 responses to ““No Guts, No Glory?”

  • Janelle Fennel

    It is always a privilege to pray for you, Dear Adri. In fact, even before seeing this post, your surgery date is already on my calendar! Prayers for the surgeon’s heart, mind & hands. Prayers for minimal blood loss. Prayers for Chris & Promise as they endure this time of surgery & recovery with you. May you heal quickly, soon having it all behind you & we look forward to seeing you here in San Diego in February!
    God is good.

    Like

  • Irma Henderson

    Hi, Adri,
    I heard through the HPBC prayer list and your parents that you were having you entire colon removed, but thank you for your informative discussion of what you will actually be enduring!! You are a most remarkable woman; I admire you – your endurance, perseverance, tenacity, bravery, courage, and, most of all, faith!!! Will certainly be praying that the 23rd surgery will go extremely well especially in the area of blood loss.

    God bless you and your family richly in the coming days.

    Miss Hen

    Psalm 119:165

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  • Mary Yakel

    Funny, I was just thinking about you today, wondering how you have been doing. We will absolutely pray for you and your family, Adri.

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  • David Wriht

    Adri, my thoughts and prayers are and will be with you before during and after your surgery. You’re an inspiration to your legion of fans. Love ypu, David

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  • Amy Pease

    You and your family are truly in my prayers.

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  • Justy Long

    As I read your title and continued on to hear the details of your upcoming surgery I giggled a little.. You have always had a way with words Adri and definitely Anointed by God. I will be praying for you,Chris & Promise. Wisdom for the surgeons and his team. For healing and peace. You amaze me with your strength,wisdom,humor & kindness & of course your many talents! Love you sweet Adri💜

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  • Susan Kelley

    God bless you, Adri. I am and will continue to be in prayer for you, your surgery, your family, your healing, and your peace in Him. Susan Kelley

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  • Alyson

    You’ll be in my thoughts Adri! If you need anything, please reach out. I’d be happy to make a meal to bring for you, Chris and Promise after your recovery. Thanks for sharing your story. Love you, friend.

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  • Craig and Sue Anderson

    Adri we will pray for you! Keep your eyes on Jesus and His provision.

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  • Darcy

    Hi Adri, I am always amazed at your wonderful outlook in spite of all you’ve gone and continue to go through. I will be praying for this upcoming change.

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  • Page Hamilton

    Adri: Your power and strength and talent and faith…it gives me an incredible yearn to be better, live happier, love deeper, and find my own strengths and to remember to always open my heart to what others may go through. You are amazing. truly. thank you for sharing and I always go through the spectrum of fear, sadness and hope and sheer awe when I read your words and learn more about your life and perseverance. My heart will be with you, Chris and Promise on Dec 1 and everyday.

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