How I managed chemotherapy, an ileostomy, and LARS recovery: Part 2
Sally C.’s Story
“What is Lower Anterior Resection Syndrome (LARS) after rectal cancer surgery?”
In Part 2 of her story, Sally C. details enduring infusion chemotherapy, undergoing rectal resection surgery, managing a temporary ileostomy, dealing with Lower Anterior Resection Syndrome (LARS) and a blood clot, and finding healing through Shay's Warriors.
Essential Notes:
Chemotherapy side effects like cold-induced neuropathy require precautions like wearing gloves and avoiding cold drinks.
Adjusting to an ileostomy requires dedicated nursing education and patient patience during daily management.
Lower Anterior Resection Syndrome (LARS) is a long-term gastrointestinal challenge post-surgery that benefits from dietary guidance and peer support.
Connecting with survivor support groups after treatment aids long-term emotional recovery.
Before I started chemo, I had to have a port put in. This happened the same week I was having my stent from my gallbladder issue removed. We were still in the middle of COVID, so rules were different. Though in the same hospital, my husband was allowed to stay in the waiting room for one of the procedures but had to leave the hospital for the other. Clearly, they were still working things out.
Port placement and managing chemo side effects
Now I moved to the care of my surgeon and chemo oncologist. I would have 3 rounds (about every two weeks) of chemo, then I would have a few weeks break before my surgery scheduled for the first week of February. Then when I could, I would resume 5 rounds of chemo.
Each chemo I would first have a blood test, then wait a few hours (usually at Whole Foods) to meet with my oncologist for results, then onto infusion chemo. Gratefully my counts were always in range so I could have chemo that day. My husband went with me to my first chemo to get the lay of the land but after that he’d run errands then come pick me up. It was a long day usually with chemo infusion lasting about 4 hours. Normally I rested or watched a movie on my iPad. They provided lunch.
A side effect of chemo was neuropathy which for me mainly was in my fingers/hands. It would hit the minute chemo was done lasting a week or so. It meant that I couldn’t touch anything cold, so gloves were a must outside in the cold, or getting things out of the fridge/freezer, etc. Also, it would feel as though I was swallowing glass shards when I drank something cold which I tried not to do. For 2 days I would bring the chemo home in a bag, then return for them to remove it.
Rectal surgery, ileostomy adjustment, and LARS symptoms
Prior to my surgery in February, I had to get measured and marked for a colostomy bag (permanent) or ileostomy bag (temporary). I would have one or the other for sure when waking up, depending on how surgery went. It was an awkward thing to think about having a bag for my body waste and an opening in my side.
On February 7 I had my surgery where the surgeon removed most of my rectum and my sigmoid colon, thus removing the cancerous tumor. I woke up to a temporary ileostomy bag. It took a lot of training and trial and error to figure out the bag. Changing it, showering with it, wearing clothes, sleeping with it and traveling with it. Big adjustment.
There were a few tears as I learned to adjust to this thing on my body that I wasn’t really in control of. And the times it malfunctioned (operator error) were difficult. I resumed chemo 3 weeks post-surgery and in between chemo we would head to the desert (from Seattle), then return home for chemo.
My husband told me that near the end of my chemo treatments I told him I wasn’t sure I could complete them. I know I was very tired during my treatments. My insurance provided a dietician to help me with my nutritional needs especially during chemo and a therapist that I would zoom with every few weeks.
Upon completion of my final chemotherapy, I was able to schedule my reconstruction surgery for June 20th, a little over 4 months from my cancer surgery. Surgery went well, though the adjustment to my new plumbing system is ongoing today.
Post-treatment complications and finding Shay's Warriors
Four days post-surgery, I noticed one leg had swollen. By the end of the day, my doctor called back to say I had a blood clot and to get to the ER immediately. Four hours later I was home from the ER with medicine for a blood clot. So now I was taking care of a blood clot and dealing with my new plumbing system.
Post-surgery I was left with Low Anterior Resection Syndrome (LARS), a collection of symptoms colorectal cancer patients can face after surgery. It’s defined as disordered bowel function after surgical resection of the rectum, often leading to a detriment in quality of life. Symptoms range from fecal incontinence and urgency to constipation and emptying difficulties. Though I was done with radiation, cancer surgery and chemo I was now living in a post cancer world with the long-term ramifications of it.
One day shopping down at the Gardens of El Paseo I saw the Shay’s Warriors mural. Immediately I looked up what it was all about. I felt the timing was right to connect with people who shared a similar experience of cancer. Though out of treatment, we still live in cancer world daily.
I zoomed into the Coffee and Connections meetings and attended yoga. I was grateful to be chosen to attend the 2023 retreat at the La Quinta Resort, meeting wonderful women who are survivors of cancer. It was a wonderful few days to relax, be treated to wonderful meals, and connect. What a blessing and gift for me to have found such a caring, supportive cancer support group.
Read another survivor's journey through Stage 4 colon cancer by reading Bobbye's colon cancer story.
You don't have to navigate this alone.
Managing ostomy adjustments, surgical side effects, or long-term issues like LARS can feel overwhelming. Lean on our community for empathetic guidance every step of the way. Connect with our virtual and in-person survivor support groups today.