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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.

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From Colon: to Semicolon;

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.