I began having episodes of excruciating abdominal “spasms” in my mid twenties. I had a battery of tests and was told I had a spastic colon. Throughout the next twenty-five years I had cysts on my ovaries, A “hormone imbalance” an atrophied gallbladder and multiple “treatments” for irritable bowel syndrome.

I also had episodes of extreme flushing, which was attributed to menopause since I had a hysterectomy at age 39.I had to have cardiac bypass surgery at age 49. I had an EGD in my late fifties and was told I had gastritis and a hiatal hernia. After my symptoms began becoming more frequent and severe, I sought out a solution. I was sent for a CT scan and was told it was ok. Later, when I had to request my medical records, I saw that the report had indicated a possible problem in the ileal area, but my MD did not pursue it.The only thing he said was that I had a fatty liver, and he indicated my diet was the only cause of this.

In 2005, I went to my doctor and told him that I did not run to him every time I had a bellyache, and that I had contemplated going to the ER several times because the pain was so severe and I became nauseated and felt faint during these episodes. He finally referred me to a gastroenterologist who did a scan of my abdomen and pelvis and discovered a tumor that could not be ruled out as carcinoid. I had a bowel resection and the diagnosis was confirmed. There was lymph node involvement in the mesentery and invasion of the muscle tissue in the pelvic area. There were some spots identified on the liver at that time, but were not biopsied, and were dismissed as benign.

I was sent to an oncologist and he wanted to start me on Sandostatin.He felt that I had had this carcinoid for at least twenty years or more and said it was very hard to diagnose because of its rarity. My 5HIAA was normal, so I opted not to start the treatment at that time. Since the tumor had been removed, I felt a lot better. Then I started having the same abdominal pain late in 2006, and in April of 2007 had to have another bowel resection. This time they took over 9 feet of my intestines out. I developed sepsis and nearly died while in the hospital.The oncologist did not think I would live for 6 months. As my husband had had a stroke and depended on me to be his cargiver, I began getting our lives in order for him to be taken care of should I die.

They started me on sandostatin and over a year’s time, increased my dosage to try to control the diarrhea and flushing. I recently went off the shots because I felt they were creating side effects that were possibly worse than the symptoms I might experience without them. Today I am 61 and seem to be doing ok. I notice that certain foods bother me more and that I seem to flush more than I did while on the injuections. I am continuing to follow up with the oncologist and hope I do not have to begin the shots again. The side effects were bad enough, but the cost, even with insurance, was prohibitive. It was costing me about $600 a month to take these shots.

I am thankful that I am feeling as good as I am and can care for my husband, because he is incapable of caring for himself.