Kathy's Story

Hi, I’m Kathy, a 45-year-old mother of two teens and a three-year-old toddler. I had been suffering from lower back pain beginning in 2004, and finally went to my gynecologist about it in September, as I thought it might be fibroids or an ovarian cyst. He ran CEA and CA-125 blood tests as he was concerned about cancer, but both came back normal. After several months of tests and treatments for possible endometriosis, we decided on a laparoscopy to get a better picture of the problem. Although the doctor did find and remove and ovarian cyst, what really concerned him was a growth he saw on the liver, and he sent me to a gastroenterologist right away. That doctor ordered a CT scan, followed by a colonoscopy three days later. He said he had found a “palpable mass” during his digital exam.

As I prepared for the colonoscopy, I was very concerned that I had not yet passed the barium fluid from the CT scan. My husband called the doctor’s office and told them that he thought I shouldn’t be taking the bowel prep as it seemed my bowels were not moving, and we were worried about an “overload,” but the doctor’s assistant insisted that I go ahead with the bowel prep and colonoscopy.

Sometime in the middle of the night I began to feel very ill and starting vomiting black fluid. About 4 AM I tried to shower, hoping that the warmth make me feel better. Instead I nearly passed out and had to sit down (I was in too much pain to lie down.) My husband called our family doctor who recommended that we go to the emergency room. The ambulance technicians could not get a blood pressure reading on me, and the situation became rapidly more serious.

Eventually I “woke up” two weeks later in the ICU with a feeding tube and ventilator down my throat and an ileostomy, something I had never heard of before. I was told I had nearly died when my colon ruptured. The surgeon spent 6 hours in surgery trying to patch me back together, and finally decided on the ileostomy when he could not get enough tissue to reconnect the colon because of the tumor.

When I was well enough to bear the news, I was told I had stage IV colon cancer that had metasticized to the liver, and that the ileostomy was permanent for as long as I lived.

I am currently undergoing chemotherapy for the cancer. Although my odds for survival are very poor, I am optimistic and hopeful that the chemo will be successful and that a cure will be found. It has been difficult to become reconciled to the ileostomy — I have always been very active and hate worrying that my bag might give out in some public place. I have to get up at least once a night to empty it, so it affects my sleep as well. It’s especially difficult when the chemotherapy causes diarrhea, and with low platelets the stoma bleeds more. I still haven’t lost hope that maybe someday a reversal can be done, but my focus now is on surviving cancer. If I have to live with the ileostomy, I can and will.

It is helpful to read other people’s stories and know I’m not alone with this! If others can lead a normal life with an ileostomy, then I can, too. Thanks for sharing and allowing me to share.

...Kathy

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