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.