My Challenging Ileostomy Reversal Surgery Experience

The final gruelling step of cancer treatment put my body back together
December 19, 2019 Updated: December 19, 2019

Cancer is one of the most common diseases of our age, and yet those who face it rarely know what’s about to happen to them beyond the broadest terms. “Cancer up Close” is an open recount of Michele Goncalves’s cancer journey from pre-diagnosis to life after treatment.

I remember feeling both nervous and excited as I was being wheeled into the surgery room on March 1, 2019. This was the last hurdle I had to get through in order to complete my cancer treatment protocol. After living with an ileostomy bag hanging out of my abdomen for 9 months, I was looking forward to going to the bathroom normally again. My only worry was that I didn’t know how my overly-sensitive belly and body would handle another big shake-up. Turns out, not so well.

Unlike my tumor reversal surgery, this one was quick and took only about two hours. Shortly after waking from anesthesia, my physical therapist came to visit me and had me stand up (which hurt like crazy) and start walking. I felt like I had been run over by a bus, but I was able to get steady on my feet and do a few laps around the floor. From there I quickly progressed my diet from clear liquids to low fiber foods, to normal foods. My goal was to pass gas or have a full bowel movement in order to leave the hospital. After just three days, the goal was met, and I went home.

Everything seemed fine at home for a few days, until suddenly I started to get really bad chills. Then, I started to have a very painful abdominal spasm every 10–20 minutes. My surgeon was concerned, and I went into my cancer center for an ER-type visit. I had a blood test done, and was given some fluids with added potassium, but everyone said that this was expected and was part of the recovery process, so I was sent home.

The next day, which was a Saturday, I started to throw up everything and couldn’t even keep down water. This was in addition to my chills and spasms. I knew something was very wrong, yet I endured two days like this since the weekends at my cancer center are not fully staffed. I barely made it.

Monday came, and I went back to the hospital. This time I had a CT scan done and they said I had two obstructions in my intestines, plus my potassium levels dropped to 2.5, which is dangerously low. The news came that I was going to be readmitted to the hospital.

Then, two nurses approached me with a tense look on their faces and said they were given orders to put in an NG tube to help with my nausea. I didn’t know what this meant, but suddenly one kind of held my arms, while the other whipped out a tube and tried to stick it quickly up my nose and down my throat, but it wasn’t going in.

We had to switch nostrils, and this time it worked. I was gagging and almost throwing up the entire time. Of everything that I have endured on my cancer journey, this was one of the worst. Unfortunately, this tube was piercing my throat and felt like I was being stabbed in the esophagus every time I swallowed, and stayed in for 9 of the 11 days I was in the hospital.

Apparently, my intestines were not working or waking up, which was causing all of my pain. For several days I was given a drug called Reglan, which stimulates the intestines to start working. However, it made me very ill and made me lose my bowels in less than a minute. I reached a point where I asked the nurse to administer the IV push of this drug while I sat on the toilet so I didn’t dirty the bed. I’d say looking back, this was my lowest point both physically and emotionally.

After 11 days of countless x-rays of my belly, CT scans, a colonoscopy, and balloon catheterization, as well as a contrast dye review, I was told I could go home. I didn’t feel quite ready, but I was happy for a change of scenery. I was eating very small bites of solid food at this point, but I was also on a liquid medical food called TPN (total parenteral nutrition). Once again, I was going to have to learn from a home nurse how to administer a 12 hour IV drip of this medical food into a PICC line overnight for one week to help supplement my nutrition as I got back to normal. Luckily, I had some prior experience with this, and it didn’t seem as daunting this time.

Things improved quickly as far as eating went. However, I was facing many episodes of incontinence during the day. It took some time (a week or so) before I felt ready to take a chance and leave the house wearing special underwear, but accidents did (and still do) happen. However, despite all of the difficult issues I faced, I am grateful that at this point I no longer have an ileostomy.

Come back next week when I will share highlights of my post-surgery healing journey, such as learning to live with periodic incontinence, dealing with heavy metal toxicity, and accepting my scars.

Until then, breathe deep, be kind, and take it one day at a time.

Michele Goncalves is a financial compliance and fraud auditor for a Fortune 500 company by day and a passionate pursuer of holistic and functional medicine knowledge by night. She is also the author of the column The Consummate Traveler.