Light in the Storm

After nine months of suffering in my body, I faced another major, unwanted surgery.  This surgery was anything but elective; it was the only option left in the fight against severe diversion colitis, a rare complication of having an ostomy.  The removal of the remnant colon would seal my fate, making my ostomy permanent.  I battled feelings of disgust over what my surgically deformed body would look like.  I battled feelings of hopelessness, knowing that the surgery was necessary but fearing it would result in further medical complications.  I had known nine months of complications to complications.  Yet, I also believed these truths:

(1) God exists outside of time (“I am the Alpha and the Omega,” says the Lord God, the one who is, and who was, and who is coming, the Almighty.” Revelation 1:8 EHV).

(2) God knows every moment of my life (“all the days ordained for me were written in your book before one of them came to be.” Psalm 139:16 NIV).

(3) Regardless of the outcome, God can and will use these circumstances for my good and for His glory (“…as grace increases, it will overflow to the glory of God…” 2 Corinthians 4:15 EHV).

(4) Though the recovery process was guaranteed to be challenging, the surgery promised to bring resolution to this rapidly deteriorating condition.

The surgery itself, though long, complicated, and delicate, went well.  Through the use of robotic assistance, I was spared the long abdominal incision from sternum to pelvis.  Instead, I received several smaller incisions across my abdomen as the skilled surgeon did the operation, carefully working around my ostomy.  Additionally, there was one larger incision on my back-side through which the diseased colon was removed.

On the day that I was to be discharged from the hospital, I vomited just before the surgeon came to do morning rounds.  The very compassionate doctor tenderly assured us it was best for me to stay one more day.  That afternoon, I spiked a high fever.  A CT scan revealed two abscesses and a second portal vein blood clot.  I would be staying more than one day.

We were so very grateful for that unexpected onset of symptoms earlier, requiring me to stay put.  It was a little reminder that God was present; this was a ray of light in the storm. My hope was anchored to the eternal safety He promised through salvation (“Indeed, we who believe are going to enter His rest.” Hebrews 4:3 EHV).  As complications continued to assail me, I was being overcome by the darkness of the storm that had been raging steadily for more than nine months.  My body, the vessel, was battered and broken.  I began to believe that the storm would not end without me perishing in it, certainly not that day, but eventually.  For despite all the best doctors, the best treatments, the best care, the storm raged on in my body.

With two different antibiotics pumping through my veins, my fever subsided, and as the days passed, I began to gain strength and mobility.  I walked the halls with the bulb from my abdominal drain (placed during surgery) clipped to my hospital gown.  My IV pole kept me steady on my feet as I walked the halls of the ward.

During one walk, I felt a sudden gush down my left leg.  There was no discreet way for me to check on my abdominal drain or my ostomy pouch in the hall, so I turned and headed back to my room to call for a nurse.  My abdominal drain had clogged, and the resulting leak required a complete change of gown, robe, and socks.  After receiving assistance with clean up, I returned to bed.

Within a short time, my fever spiked again.  This made no sense!  I had been improving, but suddenly I was feeling chills and my temperature was rising.  I couldn’t get warm, but my skin was hot to the touch.  The charge nurse came in to help my bedside nurse.  She found that the clog in my drain had not been properly tended to; it was preventing fluid from draining out of my abdomen.  The fluid had been collecting at the site of the abscess throughout the day.  Within thirty minutes of the drain line being cleared, my fever broke, and the collection bulb filled twice as the infected fluid was drawn out of my body through the drain.

After a week on IV antibiotics and tolerating a switch to oral antibiotics, I was discharged home.  The next seven days were challenging, but we also understood that if I had been released a week earlier, my homecoming would have been wrought with many more issues and physical challenges.  Though unplanned, the extra week in the hospital enabled me to gain strength and provided a high level of care as I navigated those early days of healing from surgery.  This was another ray of light in the storm. It was nothing that we could have understood at the time, as my hospital stay lingered.  It was, however, something we understood in hind-sight.  This was evidence of His promise to use all things for our good (“We know that all things work together for the good of those who love God, for those who are called according to His purpose.” Romans 8:28 EHV).

At home, abdominal pain and fever became an increasingly concerning symptom as each day passed.  On my seventh day home, a call to the on-call surgical intern confirmed that I needed to go to the emergency room with an over-night bag packed.  Another CT scan revealed a new abdominal abscess and a third portal vein blood clot.

Upon being admitted to the hospital, I was put on a schedule of IV antibiotics and IV anti-coagulation drugs (blood thinners).  My discouragement was deepening.  I was weary of fighting the battles that raged on in this war to right my abdominal health following the perforation of my colon, now ten months earlier.   There was no end to the fighting.  From my hospital room, there was no end in sight.

The abdominal abscess was in my muscle wall and spread up through the oblique muscle.  The pain was crippling; every movement was agony.  We were told that a drain would be placed in the abdomen once the infection became “organized.”  The two previous abdominal drains I had were placed during surgical procedures; I was told that this one would be placed while I was awake.  I felt nothing but fear and dread.

Three days after being admitted to the hospital, I underwent the procedure to have the drain placed in my side.  My abdomen was cut open and a tube was guided by radiography.  I could not bear to watch the procedure.  As the doctor talked his way through, explaining step by step of what he was doing, I asked him to please not tell me any more.  A very compassionate male nurse stepped close to my ear and began whispering, “He’s almost done…  You’re doing so well…  I’m really proud of you…  You’re going to be okay…  He’s just about finished…  You’re doing great…”  His voice was the calm that I could focus on through a procedure that I hope to never experience again.

A collection bulb was attached to the end of the tube protruding out of my side and clipped to my gown.  After returning to my hospital room, I was overcome with emotion.  My thoughts were drawn to my Savior and the day His side was pierced.  Never more real to me had become the verse, “For we do not have a high priest who is unable to sympathize with our weaknesses.” (Hebrews 4:15 EHV)

As I laid in an empty room with my pierced side, I was again reminded of what Jesus suffered to redeem me (“He gave himself for us, to redeem us…” Titus 2:14 EHV).  The salvation He won for us promises eternal life.  From the cross, Christ promised the criminal hanging beside him, “Today you will be with me in paradise.” (Luke 23:43 EHV)  My thoughts turned more and more toward heaven.  I longed to be free from the prison of my body and to be made whole in heaven.

Paul wrote it so eloquently, “Now we know that if the tent that is our earthly home is destroyed, we have a building from God, an eternal home in heaven… To be sure, while we are in this tent, we groan and are burdened… We know that while we are at home in the body, we are away from the Lord, for we walk by faith, not by sight. But we are confident and would much prefer to be away from the body and at home with the Lord.”  (2 Corinthians 5:1, 4, 6-8 EHV)

Silently, I held these thoughts close.  I had lost all hope for recovery.  The previous ten months had taught me to not trust the best case scenarios the doctors identified, but rather to expect there would be more pain, more complications.  There was always more.  I began to hope that I would die so that my suffering would end.  I held these thoughts, but I did not express them to the nurses who cared for me, to my pastors who sat at my bedside, or to my family who wrote and called and visited.  I wore as brave a face as I could manage, but inside I had given up.  These were my private thoughts.  My only remaining shred of hope was freedom through death.  The promise of heaven was the only remaining light through this storm.

The nursing staff were tasked with teaching me how to manage the cares of flushing the drain three times each day, measuring and recording the amount of fluid collected at regular intervals.

In addition to learning drain flushing cares, I was informed that the anti-coagulation injections that I had endured for 15 terrible days last spring would need to be resumed for 3 months.

I reminded the nurses that I don’t handle bodily fluids and needles well at all.  I tried my best to be a good patient.  Yet I cringed every time I had to flush the abdominal drain; I was completely disgusted by the fluid flowing in and out of my body through the syringe.  I cried when I administered the injections of anti-coagulation medication.  I had learned to cope with ostomy cares, but drains and needles were pushing me to my limit.  My discouragement was becoming a deepening darkness.  I was feeling completely overwhelmed with the schedule of numerous oral medications, injections, and drain flushes in addition to all of my regular cares of ostomy needs and my other long-term medications.  It felt like this all was more than I could manage, and I was drowning in the anxiety of being released from the hospital to do all of these cares on my own.

Not only was I overwhelmed by the responsibility that I was to carry on after discharge, I was still working through the emotional torment of grief over the physical trauma I had routinely experienced through the last ten months.

One night in the hospital, I had ventured into the bathroom, assisted by my nurse.  She gave me privacy while I tended to my task.  I was suddenly assaulted by a low pelvic pain, the same pain that had sent me to Urgent Care ten months earlier.  More distressing than the pain, was the flood of fears that suddenly drowned me.  When the nurse returned to assist me, she found me doubled over, crying. She helped me back to bed and tenderly tucked me in.  She offered to stay with me.  I told her I would prefer to be left alone.  She turned on some gentle instrumental music, turned the lights low, and left the room.  I cried for a long time.

The next morning, a test was run, and I was diagnosed with a urinary tract infection.  There was nothing that needed to be done, I was told, because the antibiotics I was already on would clear up this infection as well.  This caused increased puzzling and further deepening of the darkness I felt.

How could I develop a third blood clot when I was taking anti-coagulation medication?  How could I develop an infection that was treated by the antibiotic I was already receiving?  Despair took hold of my mind.  As complications lead to further complications, compromising my health while I was on medication to address these issues, I was resolved that my physical suffering would not end this side of heaven.

On my fourth day in the hospital, I was told that a sensitivity test was needed to determine which specific antibiotic would treat the infection in my abdominal wall.  I had been on a broad spectrum IV antibiotic, but the doctor needed to know which oral antibiotic could be prescribed for my release home.  I was told that if no oral antibiotic could be determined, they would perform a procedure to place a PICC line, a central catheter in my arm, so that IV antibiotics could continued to be administered at home.

This was too much for me to bear!  In the quiet hours of the night, I cried to God, pleading that something, anything would prevent me from needing a PICC line.  I was ready for Him to take me home because I was very certain that a PICC line would be more than I could cope with.

In the early morning hours, I had a lengthy discussion with my nurse about the procedure of having a PICC line placed.  We discussed pros and cons.  He reassured me that it is quite common for people who have serious, chronic disease to use PICC lines for a time.  He tried his best to quiet my fears and normalize this completely abnormal process.  Though I was grateful for the information and the time my nurse gave me to discuss this, I was more convinced than ever that I had no interest in going on like this.

Eventually I confided to my husband that I was done; I had used up all my fight. I had nothing left to keep going. I did not want to continue battle after battle, fighting complication after complication.  I did not want to deal with abdominal drains, injections, PICC lines, surgeries, unending medical cares.  I told him if another abscess or thrombosis was found, I wanted to sign paperwork to stop all treatment.  What was hard for him was that he could see that I was actually healing from my last surgery, but he understood that I had lost sight of hope that I would have better days ahead. His prayers became very directed for healing and for hope to return.

And then God……

Psalm 135:6, “The Lord does whatever He pleases in the heavens and on the earth…” (EHV)

Revelation 4:11, ““Worthy are You, our Lord and God, to receive glory and honor and power, for You created all things, and by Your will they existed and were created.” (ESV)

1 Chronicles 29:12, “…You rule over all. In Your hand are power and might, and in Your hand it is to make great and to give strength to all.” (ESV)

Psalm 121:2, “My help comes from the Lordwho made heaven and earth.”  (ESV)

Matthew 19:26, “…with God all things are possible.” (EHV)

After another week in the hospital, I was released home without a PICC line!  I truly believe that God intervened.  Originally told that the bacteria was resistant to the oral antibiotic the surgeon wanted to prescribe, the forty-eight hour sensitivity test mysteriously revealed the bacteria could be treated by the oral antibiotic!  We were shocked but delighted!  This was a beacon of hope shining in the midst of this storm!

Psalm 66:16-17, 19-20, “ …let me tell you what [God] has done for me. I cried out to Him with my mouth…  God has surely listened and has heard my prayer. Praise be to God…” (NIV)

By the time I was eight weeks post-op, renewed hope had returned.  Though I still had a great deal of recovery left, I was beginning to experience what the doctors had been trying to tell me all along.  Recovery felt as though it was just beginning, the recovery promised from my ostomy surgery eleven months earlier.

Each day has its ups and downs.  As of this writing, I am just eleven weeks post-op, yet I feel better than I have for the previous eleven months!  There are so many lessons, so many gems, so many treasures that I take out of the past year’s experiences.

For the first time in a long time, I can look expectantly ahead, hopeful of what God has in store for my life.

“For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.”  Ephesians 2:10 (EHV)

Christ was always my light in the storm.


One Step at a Time (Rehab!)

After thirteen days in the hospital, the first eleven without food, I was ready to be discharged.  What started with a text to my supervisor on March 3rd, letting her know I thought I needed an antibiotic and was going to be a little late coming into work that morning, was ending nearly two weeks later, following two abdominal surgeries.  It was now mid-March.

I was ready to be discharged.  I was a different person leaving the hospital than I was when I entered.  I had lost twenty pounds.  I had lost a third of my colon.  I had gained open wounds, stitches, and staples.  I had gained a left-side stoma.  My arms and hands were a series of bumps and bruises from requiring two concurrent IV sites, which were changed every few days to maintain viability of access and daily lab draws to monitor infection and system functioning.  The backs of both arms were deep shades of black and purple from the heparin shots given every 8 hours.  My body endured significant trauma from the infection, from the cocktails of antibiotics and pain medications, from the surgeries.  I was alive.  I was different, but I was alive.

I was ready to be discharged.  I had lost the ability to control movement of my left hip and leg following the left-side colectomy surgery.  I had lost the ability to put full weight on my left leg.  One of my successes for that day’s final in-hospital physical therapy session was the fact that I was able to transfer myself from sitting in a wheelchair to standing with a walker, then slowly shuffle right – left – right, then sit back down in the wheelchair that the physical therapist rolled up tight against the back of my legs.  I wasn’t really sure we could call it walking.  Much of my weight rested on my arms and walker, and I lacked the strength to actually pick up my feet to step.  Either way, we called it progress!

I was ready to be discharged.  I still required assistance with movement I used to take for granted, like sitting up in bed.  I still required complete assistance with personal cares, all the typical things like getting a cup of water to brush my teeth in bed and all the new things like learning to empty my ostomy bag.  I still required wound care, as the battles fought in the operating room had left me with five new abdominal scars.  I still required all my meals to be prepared by someone else and served to me on a tray in bed.  My daily existence was confined to my hospital bed.

I was ready to be discharged.  My insurance company wanted to send me to a rehab facility an additional hour further away from my family, requiring a four hour round-trip commute would they come to visit me.  In answer to the prayers of many, the hospital social worker was able to present my case and get approval from the insurance company to authorize my stay at a rehab center ten miles from my home.

The discharge from the hospital, with the many hands assisting my transfer out of bed, into the wheelchair, out of the wheelchair, into the vehicle, as well as the ride to the rehabilitation facility, are a bit of a blur for me.  My husband recounted later the challenge and anxiety of the drive for him, as he ferried his precious and fragile cargo from one care facility to the next.

I do remember my arrival at the rehab center.  Unknown to us, the nurse from our church family who works at the facility, was waiting for my arrival.  Once I was transferred into the wheelchair, she wrapped her arms around me and gave me a warm hug.  I was so weak; I’m not sure I even had the strength to hug her back.  All I remember is feeling held and safe.  I felt like I could take a deep breath for the first time in two weeks!

My transition at the rehab facility did not go smoothly, but I watched the staff work with genuine compassion, despite the challenges we all were facing.  The physical and occupational therapy I received was fantastic!  Their goal was the same as mine: to get me home.  We were all working together for my success.  I felt tremendous gratitude.

The stoma-healing diet was as much of a challenge for me as it was for the kitchen staff who prepared my meals.  I began to count on white fish and peaches for lunch, along with boiled chicken breast and peaches for dinner.  Thankfully, they also provided chocolate milk and chocolate ice cream any time I made the request!  It was the only time in my life I did not care about those chocolate calories!

Visitors were more frequent, as I was back in our area, close enough for friends and church family to stop by.  The look on one friend’s face when she entered my rehab bedroom spoke more than her words ever could; her uncontrollable tears communicated the pitiful reality of my current condition.  My 5’10” frame of solid structure lay weak and resigned in my bed.

I kept mostly to myself, stayed mostly in my room.  I was a woman in my early fourties; a feeble body was the only thing I had in common with the other residents who were twice my age or more.  After a few solitary days, I began forcing myself leave my room to prevent depression from settling into my heart.  I would set my piano books on my lap and wheel myself into the sitting room where the piano resided.  Various residents would be present, staff would wander in and out.  I would play for as long as I had the physical strength to remain sitting up.  I played old hymns.  Some of the residents would sing along to favorites.  I played contemporary worship songs that helped me to reflect on the sovereignty of God.  I would often cry as I played.  Many expressed gratitude for the music, but I knew that I was doing it to heal my own spirit.

Physical therapy focused on helping me strengthen my left hip and leg while learning to walk safely with a weak side.  If I was asked to do ten knee bends, I would do twelve.   If I was asked to stand at a counter-height table to work on a task for ninety seconds, I would stand and work for two minutes.  The goal of physical therapy was to teach me the adjustments I would need to make for being successful at home while simultaneously working to rebuild some of the strength that I had lost.

Occupational therapy focused on helping me regain independence with personal cares, including techniques for bathing from a seated position.  I learned how to use assistive devices to take socks on/off and to reach for items without bending.

Wound and ostomy care were attended to by the nursing staff.  One of the surgery sites became infected and required the nurses to insert a wick each day into the open wound to draw the infected fluid out.  Stoma care was challenging due to many factors, including the daily changing stoma size as it healed, the irregular football-shaped stoma, the placement of the stoma on a natural abdominal crease, and the retraction of the stoma itself.  Each nurse had different experiences with ostomy appliances and accessories; each nurse approached the ostomy care differently.  I soaked it all in, trying not to be overwhelmed or confused but rather to learn unique techniques and tricks from each of them.

Physically I was seeing small daily improvements; the staff rejoiced with me over each gain.  Emotionally I was welcoming and embracing the grief over what my body had endured and over the impact this was going to have over so many areas of life.  Spiritually I was being nourished by Bible reading, prayer, and regular encouragement from my church family.  Yet every night, I cried, longing to be home, longing to be with my family, longing for the comforts of familiar surroundings.  The days counted on.

One night in rehab, I wrote the following:

A friend gave me the book JESUS TODAY. One of the devos encourages, “Let pain and problems remind you of your constant need for Me. Create a collection of brief prayers, such as ‘Help me, Jesus. Fill me with your peace. Show me your way.'”

Today has been hard. I’ve really concentrated on Philippines 4:8 – the whatever is good, lovely, ect. Thinking about those things. I wrote a list of today’s good things. I tried to express gratitude to everyone who I encountered today.

But in many of the quiet, uninterrupted moments of today I just cried. 14 days of wearing my big girl boots, too much to take in, no option beside bravery. And now the tears seem to come. A lot of tears.

This evening as I sat crying, I recalled the reminder to use a brief prayer to speak my heart, and so i just began repeating, “Jesus, be near me. Jesus, be near me.”

A young nurse’s aid walked into my room at that time to check on me… and then spent the next 40 minutes with me, helping me care for myself and get cleaned up before bed. She rubbed on lotion. She even tucked me in.

And when she left my room, I knew that Jesus had answered my prayer through her. Her hands were His hands of ministry to me. Her kindness was His kindness to me. He is near. He is loving and good.

That truly speaks of my experience through my early days of this journey.  I continually experienced Jesus through other people.  Our church family faithfully delivered meals for my husband and three boys.  I was showered with cards of encouragement, including a special poster colored by the 3rd and 4th grade class at my youngest son’s school with an encouragement from Psalm 46.  Bouquets of flowers brought the outdoors into my solitary space.  My paraplegic friend sat wheelchair to wheelchair with me as we discussed how God uses tragedy in our lives.  My pastors took turns visiting me, providing a devotional thought, praying for my healing, and offering me communion.

In the midst of all of this sorrow, all of this pain, I continually experienced the presence of Jesus.  He is kind.  He is near.  He is loving and good.