The Story #18: Diagnostic Journey Leads To The Cause of Motility Dysfunction

A few years ago, a group of scientists are said to have solved the age old question, “Which came first, the chicken or the egg?” The alleged consensus: the chicken. I ask, “Wouldn’t the chicken have developed from a fertilized egg?”

Whatever happened, the concept eludes my grasp. In my mind, the mystery remains unsolved.

I bring this up because the same mental gymnastics involved in solving this puzzle play out in arriving at a diagnosis. For each determined ailment, I find myself asking, “What’s causing that?” The train of thought leads me down a path reminiscent of the image of multiple diminishing mirrors you see within the mirror you hold in front of another mirror.

Many illnesses progress over long periods and show symptoms involving multiple bodily systems and organs, including the brain, gastrointestinal tract, reproductive organs, the bones, joints, skin, respiratory and urinary tracts as well as other parts of the body. This was the case with me as with so many others I read about.

My first instinct was to assume that whatever was wrong with me was located in the part of the body that was bothersome and could be addressed in a one-on-one correlation. I thought illness could be treated the same way you would bandage a child’s scraped knee. For instance, if you had sinus problems, you had sinus surgery. If you had problems with infected tonsils, you had a tonsillectomy, and so on. End of story. But I found, in my case, these were secondary manifestations of another underlying undiagnosed condition.

I also believed that health issues could simply be addressed with prescription and over-the-counter medications. If you had a headache, you took an aspirin or acetaminophen. If you had stomach trouble, GERD or nausea, you took an Alka Seltzer, Tagamet or Zantac. For severe menstrual cramps, you were prescribed estrogen (birth control pills).

Never did I consider that what you did or took to address a problem in one area of the body might have deleterious effects in another part. I lacked team-think. I ignored the principle of yin and yang — that for every action there was an opposing reaction.

I never considered the long term implications such actions would have on overall health. I never thought that problems would manifest years from the onset of symptoms as a result of such seemingly innocuous decisions as whether to take Tagamet for nausea. My understanding of side effects was limited to more immediate noticeable signs of stomach upset, bleeding, etc. Little did I know.

First, inflammation was considered the cause of my troubles. Still sick after efforts to reduce the inflammation, I looked for what was causing the inflammation. Further testing pointed to a systemic fungal infection from Candida albicans overgrowth. Still sick after attempts to eradicate the yeast alone, I looked for what was causing the Candida infection.

Additional testing revealed the presence of spirochetes in my blood. There was speculation of tick-borne Lyme disease. I was still ill after attempts to rid my body of Lyme. Other tests showed that I had a compromised immune system, an hormonal imbalance, as well as CFIDS and HHV-6 viral infections.

Remedies I employed helped lessen the severity of some symptoms, but not enough to improve my health. Some symptoms waned, while other new symptoms emerged.

What remained constant were the upper respiratory and digestive tract problems that had plagued me throughout my childhood and adult life. The fact that I could not tolerate many of the herbal remedies recommended for my conditions pointed to gastrointestinal problems as a main culprit in my illness.

Although my primary care physician had given up on me by this time, I found a way to obtain a CT scan of my abdomen and pelvis. The scan revealed a stool-filled colon, a redundant cecum, a decompressed descending colon, sigmoid colon stricture, among other findings. The radiologist suspected a mass or an obstruction, which colonoscopy did not confirm. (I learned much later that the colonoscope cannot access the cecum or ileocecal region where many abdominal masses that cause obstruction are located. This is also the location of the appendix, a part of the immune system that commonly becomes inflamed. In those with autoimmune disease, the over-reactive immune system may lead to inflammation associated with appendicitis and could lead to the obstruction of the intestines that causes acute appendicitis.)

No doctor would or could explain the significance of these findings, which came up again on a second CT scan. My doctors ignored or dismissed these findings. Likewise, no doctor could explain “the radiolucent bubbly artifact” indicated on yet another x-ray report, so this finding, too, was ignored.

Abandoned by the medical profession and now broke, I scoured the medical records I had gathered from various physicians, hospitals and medical facilities.

I found I had a rare submucosal systemic bacterial infection, actinomycosis. (See previous blogs for more detail.) At first, I assumed that the bacterial infection was causing my colon to swell and could explain whatever the radiologists’ remarks indicated. Then again, I found myself asking, “What was causing the bacterial infection?”

I got on the internet and started googling “redundant cecum” “stool-filled colon” and the like. I found medical abstracts of conditions associated with this terminology. Among findings were a high probability of cecum and sigmoid colon volvulus (twisting) and Hirschsprung disease.

Volvulus or twisting of the intestine and hernia can cause partial or complete obstruction of the intestine, preventing normal digestion and movement of food. With volvulus and hernia part of the intestine protrudes through a weakness in the abdominal wall. Untreated volvulus can block intestinal blood supply, causing tissue death or nerve damage. Volvulus most often occurs in the area of the cecum or sigmoid colon.

Hirschsprung disease or HD is a disease of the intestines that usually occurs in children. It causes severe constipation due to a lack of nerve cells (ganglion cells) needed to make the intestinal muscles push stool to the anus. Some patients with HD can’t have bowel movements at all. Left untreated, stool can fill up the large intestine of a patient with HD.

HD develops in the womb. Some cases are hereditary; others are idiopathic. Symptoms include gas, severe constipation, anemia (shortage of red blood cells), infection and delayed growth. Barium x-ray shows a narrowed intestine (stricture) in places where the nerve cells are missing.

HD is treated with surgery that involves taking out the part of the intestine that doesn’t work and connecting the healthy part that’s left to the anus. The procedure is more complicated with infection of the large and small intestines (enterocolitis), and may require intravenous administration of and or intestinal lavage with fluids and antibiotics to fight the infection.

Both HD and volvulus are motility disorders that disrupt normal propulsive gastrointestinal motor activity such as in ileus or gastroparesis, which commonly occur in patients with illnesses such as diabetes, fibromyalgia and infection. They cause constipation and bloating and are often accompanied by adhesion formations, ischemia and ulcerations. Damaged blood vessels don’t carry the needed oxygen and nutrients to the nerves. Adhesion acts as a pivot around which the redundant intestine can twist.

Risk factors include electrolyte imbalance, hypothyroidism and severe illness, including viral infections. Since I tested positive for HHV-6, a virus that causes loss of myelinated nerve fibers, I have to ask whether treating the viral infection and correcting the intestinal twisting will resolve my motility dysfunction without intestinal resection?

Over the last five years, my diagnostic journey has taken me from inflammation to fungal infection to Lyme, hormonal dysfunction, autoimmune disease and viral infection to bacterial infection and the likelihood of the need for intestinal surgery. I believe that correcting my motility problem through anti-viral/anti-bacterial therapy and surgery may well resolve all the other ailments impacting my chronic illness. Reversing the damage to my spine and central nervous system may take years, if possible at all.

My task now is finding competent doctors willing to listen and convincing them of my findings — all on a very limited SSDI monthly budget. I’m eligible for Medicare coverage this September.

~ by doctorblue on February 1, 2009.