Living with carcinoid cancer isn’t easy. Like many carcinoid patients, I had been experiencing symptoms for years, but originally thought it was irritable bowel syndrome (IBS). Since these tumors grow very slowly compared to other cancers, it usually takes many years before they become sizable or cause symptoms.
After an ultrasound in 2012, doctors found a primary carcinoid tumor in the terminal ileum (part of the small intestine). A carcinoid tumor is a type of neuroendocrine tumor (NET) that usually begins in the digestive tract. Soon after, I had surgery to remove the tumor and discovered that the disease had metastasized to my liver. Five months later, I had a liver resection, after which I developed carcinoid syndrome.
After my carcinoid syndrome diagnosis, I’ve had a variety of symptoms including nausea, intermittent pain, and chronic diarrhea. I took prescriptions to help treat my symptoms and most of them abated for the most part – everything except for the chronic diarrhea. For four years, I accepted the idea that I couldn’t go anywhere or get a full night’s sleep. I tried everything: different foods, prescriptions, vitamins to help alleviate diarrhea. Even if something worked, it was only for a couple of days until I was back to square one.
Not only was I discouraged by the lack of progress, but mentally exhausted from it all. Every time I would try to meet up with friends, I would immediately scan where I could run to use a bathroom. Many sufferers are embarrassed or anxious about day-to-day activities – like dining out or traveling – and there is a constant need to be aware of bathroom locations when leaving their homes. I felt like I needed to limit my social engagements and a huge cloud was always hovering over me.
This past year, I told my physician, Dr. Lowell Anthony from the University of Kentucky, that I needed try to something new to improve my quality of life. Rachel Miller, a registered dietitian that works in the same office, suggested I try enterade, an amino acid-based medical beverage. That day, I came home with a few samples, and started to take two bottles a day, not expecting much to happen.
After a couple days of adjusting times and amounts as needed, I found that drinking one eight ounce bottle every other day has made a significant improvement in my diarrhea. After one week, I realized that my diarrhea almost completely disappeared. I was excited, but didn’t want to get my hopes up and waited for the other shoe to drop. But it continued to work.
It’s been several months now, and I feel like I have control over my life again. I’ve returned to taking walks and I don’t feel tied to a bathroom. The burden is lifted. I will not go so far as to say “miracle,” but it has been pretty darn close!
I’m still living with carcinoid syndrome, and managing symptoms for years to come will be critical for me to regain control of my life again. enterade has given me more freedom than I’ve had in over six years. I would encourage anyone with similar issues, especially NET patients like myself, to keep having conversations with your doctor and don’t get discouraged. There is something out there for you.