Mid-July. My symptoms were increasingly bothersome. We wondered if the C-Diff infection had returned or if there was yet another complication to address.
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:16-18
It had been two weeks since learning the news about the liver infarct (the portion of my liver that died due to a blood clot). The reality of this long-term issue and its long-term needs was settling in. Indeed, my physical body is diseased; improvement will happen with time, but full recovery is impossible. As my husband says, “None of us get out of here alive.” We are not made for this place. James 4:14 reminds me that I am just “a mist that appears for a little while and then vanishes.”
Instead of focusing on the temporal, the deterioration of my body is a continual reminder to focus on what is eternal.
In mid-July, I returned to the hospital for another lab work-up; the results brought both comfort and concern. The C-Diff infection was gone. We were tremendously grateful and breathed a sigh of relief! Yet the exclusion of C-Diff confirmed the new symptom culprit: diversion colitis.
Diversion colitis is a complication of having an ostomy. It causes purulent inflammation in the remnant colon. It usually begins within a year of the colectomy surgery. Some individuals are asymptomatic. For those who experience symptoms, they can range from mild to severe. The underlying cause and symptoms of diversion colitis can be treated with medication, but surgery is the only method of correcting diversion colitis.
The diagnosis needed to be confirmed by scope and biopsies. As is true with all gastrointestinal diagnoses, the doctor needs to see the damage and disease to determine the diagnosis. My procedure was scheduled, and I counted the days until relief could begin.
By the day of my procedure, my symptoms had grown increasingly distressing. The pain was debilitating. Though even on my hardest days I refuse to spend the day in bed, I spent most of the day prior to my procedure confined to my room. Prescription pain relief took the edge off and provided enough calm to end my tears. The count down of days became a count down of hours.
Biopsy confirmed the diagnosis.
After a week of trying to find a pharmacy who carried the medication and obtain authorization from the insurance company to cover the prescription, we decided to try a different medicine. I am thankful that my Crohn’s disease is treated by the eight pills I swallow each day. The diversion colitis treatment, however, is not so simple. Each administration requires about thirty minutes. Like ostomy care and injections for the blood clot, I had to learn a new process, gather appropriate supplies, and learn to quiet my heart in the midst of new challenges.
I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. For the creation waits in eager expectation for the children of God to be revealed. For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God. We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently. Romans 8:18-25
What started March 3rd as an Urgent Care visit for abdominal pain had resulted in a cascade of issues.
- 13 days in the hospital, requiring 2 abdominal surgeries
- Re-learning life as a semicolon
- Left hip nerve damage and left leg instability
- A stay in rehab to learn how to walk with a weakened left side and receive support with wound care
- Portal vein blood clot
- C-Diff infection
- Liver infarct
- Diversion colitis
Being subject to frustration, shackled by the bondage of decay, I wait eagerly for the redemption of my body. Complete healing in heaven is my hope, and for this, I wait patiently.
Yet in the mean time, I cling to the promise that I am “God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance” for me to do (Ephesians 2:10). Therefore, I live one day at a time, believing that He is transforming the suffering of my body into good for His glory. As Paul wrote, “Our present sufferings are not worth comparing with the glory that will be revealed in us…” Earlier in Romans, Paul writes that, “…we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope (chapter 5:3-4).”
I do not know what will come next. Perhaps there will be more complications. As it is, I have six medical appointments ahead of me, with more to come. Yet this I do know: God is using this suffering to knock off rough edges in me, to soften the places where I have grown hardened and to refocus spiritual disciplines that have grown lax. There is redemption through this suffering. God is using this suffering to work in the hearts and minds of those who journey with me and in others who read these reflective and deeply personal writings.
To God be the glory! Great things He has done.
My magical recovery date was April 24th. The surgeon signed the note; I was allowed to return to work without restrictions the last Monday of April. This was to be the unfettered day when I would be well again. April 24th. I had it written in black and white.
I had progressed from wheelchair to walker, from walker to cane, from cane to hands-free. I was ready to return to work and re-establish routine in my life. I was ready to be productive, to create, to invest myself. I was looking forward to being well.
Oh, how my heart clung to this whisper of hope! April 24th. Alas, this was just a date, and when it arrived, I wasn’t miraculously well. Oh, how disappointment struck when I realized the unreality of my expectations.
Four days after returning to work, I was back in the emergency room.
During that eight hour occupation of the exam room, I had a series of tests, a myriad of labs done during three different collections, two separate ultrasounds, and another CT scan. As I sat in the room between visiting medical professionals, I kept a running monologue with the Lord. I honestly had no idea why I was there, but I knew it was exactly where I needed to be.
The night before I had mentioned to my husband that I wasn’t sure what was around the corner, but I knew whatever it was, the Lord would shepherd me through it. I explained to him that twice that day, through two different means, in two very distinct ways, I had encountered Psalm 23.
The Lord is my shepherd, I lack nothing.
He makes me lie down in green pastures,
He leads me beside quiet waters,
He refreshes my soul.
He guides me along the right paths
for His name’s sake.
Even though I walk
through the darkest valley,
I will fear no evil,
for You are with me;
Your rod and Your staff,
they comfort me.
You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
Surely Your goodness and love will follow me
all the days of my life,
and I will dwell in the house of the Lord
The first time I heard Psalm 23 that day, as I listened to our local Christian radio station, I remember feeling deeply touched by the words. I was moved to tears. There was a sense within me that I really needed to hear it; I listened intently.
Later that day, as I plodded through a book about how God uses disappointments in our life, I read the author’s interpretation of these verses. I remember thinking that I needed to grab hold of the meaning of this passage; I had a sense that Psalm 23 was to remain in my awareness. The next day I understood why.
The ER doctor treating me that night returned to the exam room in a solemn manner. She explained that I had a blood clot that was cutting off the blood supply to the left side of my liver. This was an unintended but not surprising complication of my March illness, surgeries, and extended bed rest. To every piece of information she shared, I calmly responded, “Okay…”
She tried to impress on me the reality that this was serious. “Okay…”
She tried to emphasize that this would be a long, involved process of healing. “Okay…”
She tried to explain that this could result in further complications with my liver or other vital organs. “Okay…”
Her words of diagnosis and prognosis were received by my quieted heart. The Lord had already prepared me for that moment. In His kindness and goodness to me, He reached into my day, before I was aware of what was to come, to remind me that He was already there.
“What is man that you are mindful of him,
and the son of man that you care for him?” Psalm 8:4
The God of the universe, who orchestrates all of life everywhere, is still mindful of me. What a humbling thought! He reached into the midst of my need and gave me peace. He had been with me through all of the medical crisis and grueling recovery to that point; I had no doubt He would shepherd me through this too.
Then the doctor explained the treatment.
I could feel the peace of my heart slowly fade as fear, then terror, gripped me. The doctor explained that I would need to inject myself in the abdomen twice each day until the oral medication was at a therapeutic level.
The issue was that I don’t do needles. I can’t watch phlebotomists draw blood. I can’t look at IV’s going into my arm or hand. I should be desensitized to it at this point in my life, but I’m not. I don’t do needles.
I told the doctor that I could not do it. When she told me the alternative was hospitalization, I asked her how long. She wouldn’t answer me; she was not going to let me wimp out. She told me that I could learn to give myself the injections. I wasn’t so sure. She excused herself from the room and informed me that the nurse would be in shortly to teach me how to administer the shots.
As I sat alone in the exam room, I told the Lord between tears that though I had been able to adjust to all that a perforated colon had thrown at me… I grieved the colostomy… I learned how to change my ostomy appliance… I had adjusted countless details of my life that I never expected to be impacted by it… I did not think I could do the treatment for the blood clot. “This crosses the line!” I cried out to God.
“Yet give attention to Your servant’s prayer and his plea for mercy, Lord my God. Hear the cry and the prayer that Your servant is praying in Your presence this day.” 1 Kings 8:28
In that moment of fear and frustration, a gentle peace swept over my heart.
“I, even I, am He who comforts you.” Isaiah 51:12
God identifies Himself as our comforter. He answered me with peace and reassurance from His word. The verse that flooded into my awareness was one that I often repeated when lap swimming as I pushed my body to swim faster or longer:
“I can do all things through Christ who strengthens me.” Philippians 4:13
I needed my body to do the unthinkable, and I knew that it was outside of the realm of own ability to complete this task. My fear was paralyzing, but my faith in an all powerful God who loves me with an inexhaustible passion was greater still. My fear said this treatment was unbearable, but my faith said that He would shepherd me through this.
The nurse entered the room. With “I can do all things…” repeating in my mind and tears still welling in my eyes, I told the nurse I was ready to learn how to take the shots.
My nurse was a gift of compassion and kindness. She patiently walked me through the process. She comforted me as I cried. She never rushed me; she stood beside me offering me grace and encouragement. I cried so hard at some points that I couldn’t see the syringe I was holding in my hand. Several times, when I had convinced myself to push the needle into my abdomen, I froze. I could not move. I practiced deep breathing. I kept repeating my mantra. After uncountable minutes of tears and suspended movement, I did it! I sunk the needle and depressed the syringe. Every bit of the solution entering my abdomen burned; I continued to plunge it in. The needle withdrawal was a rapid movement of victory!
Inserting the needle and injecting the burning solution continued twice a day for fifteen days, as I stayed focused on the One who shepherds me and repeated the promise that I can do ALL things through Christ who strengthens me. With only half of my abdomen available for injections, I had a limited area to work with. I developed extensive bruising and large, rock hard hematomas.
As the medication thinned my blood, the skin breakdown around my stoma became significant. One particularly rough day, as blood pooled in my ostomy bag, I required an impromptu visit at the wound-ostomy clinic with a check-in from the concerned surgeon. Throughout this time, I had to learn new techniques and try different appliance set ups as we worked to minimize the exposure from my oddly shaped, oddly placed, retracted little stoma.
None of this was easy. I got discouraged.
The Lord is my shepherd, I lack nothing.
I began to focus my thoughts on all that the Lord had provided up to that point. My heart became overwhelmed with gratitude. I tried to welcome the words of 1 Thessalonians 5:18 (Give thanks in all circumstances) and James 1:2 (Consider it pure joy when you face trials of many kinds). I tried to welcome these words, rather than allow them to guilt me to be in an emotional place I had not yet arrived. As I re-focused my thoughts away from the difficulties around me and onto the many graces provided to me, my heart became overwhelmed with gratitude!
The reality is that my circumstances did not change. I was still in the recovery phase after surgery. My energy was still low. I daily dealt with pain. I still required injections twice a day and lab draws twice a week.
“From the end of the earth I call to you when my heart is overwhelmed. Lead me to the Rock that is higher than I.” Psalm 61:2
Sometimes my heart gets overwhelmed… but God.
God is good.
God sends comforters to me.
God is with me.
God is shepherding me through this.
I am humbly grateful.
The pain started in mid-February; I made mental notes of its location, intensity, and consistency. This is where my ostomy journey began.
Having been diagnosed with Crohn’s disease many years earlier, I had learned to be mindful of the message pain announced without giving in to worry. I had learned that communicating with my medical providers meant providing very specific details about symptoms. I had learned that abdominal pain can disappear as abruptly as it occurs. It was not until this particular pain increased in both intensity and consistency over a two week period, that I decided I should be seen.
I made an appointment at my local clinic. I tested negative for a UTI. I was given a prescription for bladder spasms, despite my gentle protest that I did not think the pain was a spasm.
The following day, the pain intensified to the point of alarm. It was March 3, 2017. My husband drove me down to where my Mayo Clinic gastroenterologist doctors. A CT scan revealed a small perforation in my colon and an abscess. I was immediately hooked up to IV fluids and antibiotics and admitted to the hospital. I was to have nothing besides ice chips for the next several days; my digestive system needed the rest, and though surgery was a less likely option, I would need to be ready if my situation took a turn.
The nurses, hospitalist, on-call surgeons, on-call gastroenterologist, and aides were all warm, compassionate, and encouraging caregivers. I felt safe with this team of professionals and trusted the treatment I was receiving. Yet the second day of my hospital stay, the on-call surgeon performing rounds blew in like a harsh gale. His words smacked me hard, “If we had to go in today, you’d end up with a bag!” And then he blew out again. His words repeated in my thoughts; it was the buffeting reality I needed to hear. This was the first time the concept of an ostomy had crossed my awareness. Throughout the next couple of days, I discussed the ostomy idea with my husband, my mother-in-law, and my best friend. I spent many quiet moments in prayer about it.
On the fourth day of my hospitalization, a follow-up CT scan showed that the abscess had nearly doubled in size. The antibiotics were not sufficient to fight the infection raging in my abdomen. A surgeon told me she would need to go in to place a drain for the abscess; this would allow her the opportunity to look throughout the abdomen for other signs of disease and infection. If things did not go well, she explained, she would need to resect my colon and place a stoma. I assured her that I was at peace with this option, and that I trusted her knowledge and skill to do whatever was best. In my heart and mind, I surrendered complete control of my body to God who is Lord of my life and to the surgeon who would be lord of the operating room.
The surgery went well; a drain was placed from the abscess to a collection bulb outside of my abdomen. The recovery did not go as well. After removing the breathing tube and decreasing the sedating medication, I stopped breathing. An expert team swung into quick action, re-intibated and put me back into a medical-induced sleep. They slowly woke me while my husband waited with our pastor for me to return to my hospital room.
The day following surgery was rough, but the second day brought more promise. Determined to go home as soon as possible, after 6 days in the hospital, I completed four walks through the hospital ward. I pushed through the pain, motivated by the self-imposed thought that my family needed me home. This was the first day I was allowed to reintroduce liquids to my diet. My husband, so optimistic that I was on my way to recovery, went home for the first time in three days. No doubt his presence at the house was desperately needed by the three boys who were trying to manage life with school and sports and part-time jobs.
That evening, things took a bad turn. After a brief, distressing phone call, my husband returned to the hospital. It was an emotional 50 minute drive, fraught with fervent prayer, he recounted later.
We spent an agonizing night together: me in tremendous pain of body and he in tremendous pain of heart. Ice packs rested on my forehead, the back of my neck, and down my arms in an attempt to reduce the fever. The pain was unbearable; I was unable to restrain the cries of agony or the tears that spontaneously erupted. My husband held my hand through the night in an attempt to bring me comfort. Nothing brought comfort to my body, yet my husband’s presence brought comfort to my mind, and the Lord’s presence brought comfort to my spirit.
Even though I walk
through the darkest valley,
I will fear no evil,
for You (God) are with me;
Your rod (of protection) and Your staff (of guidance),
they comfort me. (Ps 23:4 – emphasis added)
The surgeon came in the early morning; it was clear that she would need to go back in. With complete peace of heart, I told her I was ready for the colectomy surgery. She said she was uncertain if that would be the end result, but she needed to hear that I was emotionally prepared, if it needed to happen. We all knew this probably needed to happen. The Mayo Clinic hospital team had done their very best to avoid this outcome, but my body was taking its own course.
As soon as an operating room opened, I was taken into surgery. As I was waking in the recovery room, it was the nurse sitting at my side that confirmed the reality: a large portion of my colon had been removed, and the surgeon had created an opening in my abdomen for placement of a stoma. I told the nurse that I was sad about having the ostomy, but my heart was at peace. I quoted a verse from my favorite Psalm to the nurse, “Every day of my life was written before one of them came to be.” (Ps 139:16). The nurse simply patted my shoulder and replied, “That brings you comfort, doesn’t it?” Oh, yes! I rested in the assurance that none of this took the Lord by surprise.
That was the beginning. I entered the hospital with a colon. There was a six-day comma, a pause, a resting and waiting. We weren’t sure what would happen next. We weren’t sure what the next ‘phrase’ of life would bring. This sin-sick world in which we live reminds us that we are not made for this world; heaven is our home. For me, this means that I will continue this journey as a semicolon. It’s not the road I would have chosen to walk, but I know that I do not walk alone.