Getting my bag
When I discovered blood in my stool for the first time, cancer was the last thing on my mind. Even after conducting research online and visiting my doctor, there were no indications of such a diagnosis. It was only after my colonoscopy that I received the news from my doctor – ‘I’m 98% sure it is malignant’. My biopsy results confirmed that it was rectal cancer.
My medical team and I formulated a plan – radiation treatment with oral chemotherapy to shrink the tumour off of my sphincter muscle before undergoing surgery. The sphincter muscle is crucial for excreting waste, and the less contact the tumour had with it, the less of my internal organs the surgeon would need to remove.
Following my 5 weeks of radiation and oral chemo, I had an MRI to evaluate the results. Unfortunately, my tumour did not shrink. As a result, my stoma became permanent. Initially, I was disheartened. However, after reading about the difficulties associated with ostomy reversals, I realised there was no easy way out. I took the bag to save my life.
Amy in hospital receiving treatment
My bag is a blessing
Throughout my cancer journey and getting a permanent ostomy, I have been fortunate to witness the kindness and support of my friends, family and church community. They have gone above and beyond to provide me with food, financial support and other acts of kindness.
My surgeon was able to remove the entire tumour and get clear margins, indicating no signs of cancer in the area after surgery. Another benefit of my stoma was that it made my clean-up chemotherapy infusions more manageable, as diarrhoea did not cause discomfort or force me to sit on the toilet for extended periods.
Looking back on my cancer journey and current situation, I am grateful for the blessings I have received. I have come to appreciate the ways in which people have helped and supported me, and I want to do the same for others. I have chronicled my experiences in my book, God Above Cancer: Faith When It’s Ugly, where I reflect on the challenges that I
faced and the good that came out of a difficult situation.
Amy pictured with her book
Packing my bags
Two and a half years after receiving my stoma and completing my book, my family and I embarked on our annual Labor Day weekend vacation, staying in a lodge with my dad’s side of the family, over an hour away from the city. Despite our brief trip, I packed additional supplies for my ostomy.
On Saturday afternoon, I experienced mild cramping while working on a puzzle and checked my bag in the rest room, only to find that it was empty. Though I had encountered minor blockages in the past, taking a warm bath and stool softener usually resolved the issue. However, I had output that morning, so I couldn’t figure out what I had consumed to cause the cramp, given that I had consumed common foods and drinks for the preceding few days.
Attempting to alleviate the pain and encourage my intestines to move, I took a stool softener and laxative, then soaked in the tub. My mind needed to concentrate on anything other than the discomfort, so I played a podcast since I was unable to read. I abandoned my evening plans as the pain continued to bother me.
What other methods could I use to promote movement?
To rule out other potential causes, I researched on my phone. I found no lumps, implying that it was unlikely to be a hernia. I was not ill, nor had I been constipated. An online search suggested that I inspect my stoma to see if it was swollen or black, as that would be concerning. My stoma was enlarged and darker than usual, forcing me to remove my wafer and cut a new one with a
larger opening. While the swelling in my stoma decreased, the abdominal cramping persisted.
Nothing in the bag
There was a hospital in a nearby town, but I didn’t want to go there just to be told to take more laxatives. I couldn’t afford an emergency room bill on top of the pain I was already experiencing. But at around 3am, the pain became unbearable, and since there was no waste in my bag, I asked my husband to drive me to the hospital.
At the ER, the nurse gave me pain medication, and the doctor ordered a CT scan. Later on, the doctor informed me that the scan showed nothing wrong in my abdomen and there was only a small amount of waste. The medication they had given me earlier had already worn off, leaving me discharged but still in pain.
Back at the lodge, I was unable to sleep. Even a hot bath didn’t alleviate the pain, and I couldn’t find any solutions online. My constant groaning ruined our family’s quality time.
By Sunday, I had lost track of time and stayed in our room, mostly rolling around on the bed trying to rest. The next morning, on Labor Day, I convinced my husband to pack up the van and leave early. Despite still being in pain, I stripped all the bedding off the six bunk beds and packed what I could for the drive home.
After a while in the van, I asked my husband to take me to a different ER. It was a little out of our way, but I couldn’t bear the pain anymore. We discussed our options because we weren’t sure what the hospital could do. Although my previous CT scan had shown no problems, I knew I was not fine. I didn’t care about the cost; I just wanted better medication.
Fortunately, there was no wait at the ER that morning, and I was taken straight to a room. The doctor ordered another CT scan, which showed that my colon had twisted 360 degrees behind my stoma. I needed emergency surgery as soon as the on-call surgeon could arrive on this holiday. He performed the surgery laparoscopically, untwisting my colon and attaching it to the abdominal wall. I may never know how my previous CT scan missed this problem.
After a successful surgery, the nurses warned me about the pain of recovery. However, the recovery process felt a million times better than being in excruciating pain for 2 days. I spent one night in the hospital before being discharged, and I was able to switch from strong painkillers to over-the-counter medication with no issues.
A twisted colon that twists all the way around is rare. It usually only affects children or the elderly who have experienced long-term constipation. According to my colorectal surgeon, it’s not even in the textbook. Perhaps it will be added now.
Amy with her decorated bag
Bag life
Now, I understand the importance of trusting my instincts when it comes to my health. Diagnostic tests may not always provide a complete picture of what’s happening inside the body. It’s crucial to ask questions, but it can be challenging to do so when you’re confused and in pain. That’s why it’s a good idea to have an advocate with you when you visit a medical professional. They can ask questions and take notes on your behalf.
I don’t hide my ostomy bag from my children. They even help me decorate it with markers, and we joke around about it as if it’s a fashion accessory. These bags are part of my emergency ostomy supplies, which I always keep on hand with a change of clothes in my vehicle. Being prepared is essential, especially when travelling. I have learned to locate the nearest hospital and compile a list of standard hospital questions, such as ‘When should I return to the ER?’ or ‘What phone number can I call after hours?’ or ‘Is it possible for the CT scan to be incorrect?’
Whatever happens, I trust that my faith will be with me every step of the way.
God Above Cancer: Faith When it’s Ugly
Amy Larry resides in the Midwest with her spouse and children. You can read about her cancer journey in her memoir, ‘God Above Cancer: Faith When It’s Ugly.’
Instagram: @amy.m.larry