Dear Dr. Gott: I recently read your article about diverticulosis and would like to share my experience.
In early 2006, my primary-care doctor suggested I have a colonoscopy. Although I was only 46 at the time, she had concerns, since my mother had colon cancer in 2000 and my father died from melanoma in 1995. Let me stress that, at that point, I had no problems, but I felt it was a precaution I should take, so I scheduled an appointment with a local gastroenterologist.
As I was coming out of the anesthesia, I remember him telling me that I had diverticulosis, but it was only one sac and, at that time, it was not a problem. He didn’t find any polyps. He also stated that he had to use a children’s scope because I am so small. I am about 5 feet 4 inches, approximately 115 pounds and very small-boned.
Within three months after the procedures, I began to experience diarrhea. It continued to worsen over the next three months, so I returned to the same gastroenterologist. He told me that with the diverticulosis, he was sure I wasn’t eating properly. He said this was the root of the problem. He gave me a generic diet to follow and sent me on my way.
The diarrhea continued to worsen even with the diet change to the point that I was unable to leave the house unless I knew a bathroom was available. I returned to the specialist and was made to feel as though it was my fault because I wasn’t eating as I should. He never ordered any blood work or any other tests.
By spring 2007, I had had enough of the local choices and went to a hospital associated with a university. The gastroenterologist I saw there immediately ordered blood work that I had never heard of. Within a week of the testing, his office called and said he saw something in the results that concerned him. He wanted me to have CT scan as soon as possible. The next six weeks were a frantic race to save my life.
By this time, my diverticulosis had become diverticulitis, which was inflamed, infected and had ruptured. I was 85 pounds when I was admitted to the hospital, and at one point I had eight IV bags in two ports trying to build me up so they could do surgery.
When I was finally healthy enough for surgery in September 2007, I had 2 feet of my colon removed and was given a temporary colostomy bag. I was 48 at the time. It was not cancerous. The entire surgery took about seven hours because of the extent of the infection. The surgeon also told my family that had we waited another day I probably would have died.
In January 2008, I had another colonoscopy to be sure that everything had healed well. The following day, the colostomy bag was removed, and I was back to normal. I am now as healthy as ever, even more so given the past several years of suffering.
I went through many changes over the last few years thanks to the poor diagnosis given to me by the local gastroenterologists. I lost my job, my insurance, my home and my self-esteem. I still get very emotional when I think of how close to death I actually came.
I have gained back all the weight I lost, am healthy again and life is now good thanks to my doctors at the university hospital.
I hope that you will print or share any part of this letter to keep others from being taken down the same road I was. Diverticulosis and diverticulitis can be very serious. They should be taken as such by the entire medical profession.
Dear Reader: I am printing your letter because it is a powerful reminder that patients have to take responsibility for their own health. Your experience is truly disheartening, since your local gastroenterologists failed to order simple lab and imaging tests to determine the cause of your persistent diarrhea after it failed to respond to conservative treatments. In my opinion, you suffered needlessly. You were more than correct in seeking out another specialist in order to get the answers you needed. Thank you for sharing, and I am truly glad to hear that, despite your ordeal, everything is now back to normal.
To give you related information, I am sending you a copy of my Health Report “Diverticular Disease.” Other readers who would like a copy should send a self-addressed, stamped, No. 10 envelope and a check or money order for $2 to Newsletter, PO Box 167, Wickliffe, OH 44092. Be sure to mention the title.
Dear Dr. Gott: Last August, my wife had a routine blood test ordered by her cardiologist. She was found to have a very high potassium level, so the doctor prescribed Kionex powder to be taken twice a week. The only precaution was to tell the prescribing physician if constipation was experienced.
The day following the second dose, she developed chest pains and immediately called her cardiologist, thinking it was caused by her heart. The doctor checked her out and said it wasn’t her heart. He then called in a gastroenterologist to look at her. He scoped her upper GI tract and found it OK except for irritation and inflammation of the esophagus. He dismissed her with a prescription for Nexium.
Just a couple of hours later, she had an urge to evacuate but passed mostly blood. A short time later, it happened again. I called her GI doctor, who told me it was probably hemorrhoids. Within the next 30 minutes, she passed bright red blood three more times, so I took her to the emergency room. By then, the bleeding had stopped. When our regular physician finally showed up, he did an examination and said he thought it was hemorrhoids, but he admitted her to the hospital for observation anyway. The next day, she was given 5 units of blood over a 36-hour period. Her stools still showed blood, but there was much less, and it was dark rather than the bright red it had been.
The third day after the initial bleeding attack, she had another. I wasn’t there but was notified. I was told the only course of action was to operate to locate the source of the bleeding. She went into surgery later that evening. I was told that they had to do a complete colostomy.
The operation seemed a success for about six weeks, when she was hit with a violent attack of nausea. Following another examination, it was determined that she had developed adhesions and needed to go back into surgery. During this procedure, 20 inches of her ileum were removed because the adhesions had strangled it.
In my opinion, the surgery was a failure because she never really stopped passing blood. The amount had decreased, but it was still present. She was also in and out of the hospital over the next months, gradually growing thinner and weaker until she died of pneumonia in December.
I question the use of the Kionex powder. I asked our personal physician, the pharmacist and the surgeon, and none believed that it was the cause of her suffering. Each claimed it was a benign medication.
Some background about my wife: She was 90 when she died, but before this situation, she had been strong and active with plenty of energy. She had a family history of colon problems; her mother died of colon cancer. My wife had what was called a lazy colon and diverticulosis. She was never found to have had cancer.
I simply want closure.
Dear Reader: Kionex is a medication given orally, by feeding tube or rectal enema, to lower blood potassium levels. Typically it is given one to four times daily in a hospital setting by a medical professional. Side effects include black, bloody or tarry stools, chest pain or fluttering, diarrhea, constipation, nausea, vomiting and more.
I cannot say whether the Kionex was the cause of her symptoms. It is possible, given the fact she experienced unexplained chest pain following the second dose, shortly before the bloody stool occurrence. However, if she only had two doses, the adverse effects should have disappeared when the drug was stopped. Speak with your physician and demand answers. You deserve closure.