My Illness Led Me to a New Passion and New Career

[ohiomatka]

Many men and women are entering the nursing workforce today as "second career nurses". Some of us have burned out on our first career, some of us pursued college degrees without a lot of earning potential (the dreaded liberal arts degree), and some of us had a major illness in our family that made the study of disease and medicine very real to us.

I am surprised how often I meet men and women who suffered major illnesses, and after their recovery, chose to enroll in nursing school. Their illness, or their family member's illness, spurred them to a new career to serve and care for the sick. I am one of those nurses, but I am only one of many middle-aged, middle-career professionals also making similar choices.

My love of medicine and acquired my expertise in gastroenterology began with five long years of needless suffering due to an incorrect medical diagnosis by my primary care physician.

It all began on February 1, 2008, when my husband and I were both waylaid by a very severe case of the flu. After a couple of days, he got better, but I did not. Over the next two months, I continued to become more and more ill, going in and out of the hospital. I lost 25 pounds in my first month of illness, making my new weight barely above 100 pounds. On most days I was too sick to even get out of bed. Finally, I was diagnosed with post-viral gastroparesis and severe gastritis. In total, I spent five months in bed and was too sick to even care for my own children. We had paid childcare for five months until the gastroparesis was gone and I was well enough to return to my everyday activities as a stay-at-home mom.

But, in truth, I really wasn't much better. I struggled with constant, almost daily abdominal pain that varied in severity from mild discomfort to such extreme pain that I'd writhe in bed for two or three hours, waiting for the symptoms to pass. I also suffered from multiple bouts of diarrhea every week. Since the gastroparesis had improved, something new was clearly making me ill.

My primary care physician dismissed my symptoms and never ordered any tests, despite my constant complaints over the next several years. He stated that I simply had Irritable Bowel Syndrome (IBS), and that I was simply "too stressed." He told me that I spent "too much time with my children" and that all my digestive troubles would go away if I simply decreased the amount of stress in my life.

I began reading about IBS, but I was convinced that I didn't fit the profile and this wasn't an accurate diagnosis, for several reasons. For example, for many years, IBS has been a diagnosis of exclusion. This suggests that if testing ruled out all other diseases, only then would IBS be an appropriate diagnosis, because no other options are left to explain the patient's numerous and troublesome GI symptoms. But I hadn't had any tests at all besides the standard, annual bloodwork that all primary care physicians perform. And the bloodwork suggested that something else was going on.

The most current method of diagnosing IBS is the Rome IV diagnostic criteria. Although the current Rome IV guidelines just recently were released in 2016, many of the diagnostic criteria are the same as the previous guidelines. Rome IV screens for patients with severe and chronic abdominal pain, bloating, and altered bowel habits (diarrhea, constipation, or both). And just like previous guidelines, these symptoms must persist despite the lack of other problems, such as metabolic causes, organic causes, or medications. The current guidelines suggest that IBS arises from complex interactions of biopsychosocial factors, thus labeling IBS a "disorder of gut-brain interaction."

The most important symptom of IBS is chronic visceral pain; an intense pain that is considered "disproportionate" to the sensory inputs. Physicians often call this "visceral hypersensitivity." In fact, the abdominal pain is such an important characteristic of IBS that the lack of chronic abdominal pain automatically rules out a diagnosis of IBS.

In some ways, I did fit the profile of IBS. I had chronic, intense abdominal pain. And I did have frequent diarrhea. And I am female. Rates of IBS are 67% higher in women than in men. But that's where the similarities between my symptoms and IBS stopped. I was so frustrated during many of my office visits with my primary care physician: my lack of medical knowledge made it easy for him to dismiss my complaints without further testing or investigation.

However, all the medical practice guidelines state that IBS shouldn't be diagnosed without ruling out other diseases like celiac disease, lactose intolerance, fructose intolerance, microscopic colitis, dyssynergic defecation, and inflammatory bowel disease. Additional diagnoses should also be considered before diagnosing a patient with IBS. For example, hyperthyroidism and diabetes can also cause diarrhea, and many medications can also cause constipation or diarrhea as well. But since I wasn't a nurse at the time, I didn't know any of these criteria.

My doctor really made no effort to explain all the strange implications of my annual bloodwork. For example, once he laughed about how low my cholesterol levels were. He joked, "I couldn't put someone on medication and get their cholesterol levels that low." Unfortunately, this was the biggest tip-off that should have made my true diagnosis obvious. I wasn't absorbing any of the fat in my diet, nor was I absorbing any of the fat-soluble vitamins in my food, such as Vitamins A, D, E, and K. I was also anemic. As a result, I was constantly exhausted, and years later I learned that my diarrhea was actually "steatorrhea". Steatorrhea is specific type of diarrhea with an excessive amount of fat in the stool. This makes the stool oily or greasy, foul-smelling, and it floats.

Abnormally low cholesterol levels, anemia, and steatorrhea should have been the first sign that I wasn't suffering from IBS, or, as my doctor kept telling me, that I just needed to spend "less time with my children." But foolishly, I believed my doctor, and I just kept eliminating every source of fiber out of my diet, in a desperate attempt to make the diarrhea cease. But it never did.

My suffering and abdominal pain went on for years, until one day my physician hit on me during a routine office visit and told me that he found me attractive. Trying my best to save his career, I quickly changed the subject and asked him a question about my health. The conversation continued back to my health, but a few weeks later I received a nasty letter in the mail, stating that we had a "disparate interpretation of what happened" at my last doctor's visit, and that we "don't communicate well", and that I would need to find another primary care physician. I didn't realize it at the time, but being dumped by my primary care physician was the best thing that ever happened to me. It was my first step towards correctly identifying my true medical illness, and later finding the career that I now love.

In truth, I had fared poorly under his medical care and I had been sick constantly. I knew that his diagnosis of IBS was incorrect, but I didn't know what to do. I was ready for a change, but never realized it until I received his insulting and humiliating letter in the mail, stating that he would no longer care for me. I was tired of constantly lacking the energy to accomplish anything. The constant abdominal pain and diarrhea left me always feeling miserable, and I kept having other unusual medical problems, too. For example, shortly after being dumped by my primary care physician, I was in the office of a sports medicine doctor. I stated my frustrations to him, "I just don't understand what is wrong with me. I have constant GI problems, and I'm always getting injured. I removed some wallpaper in my house and then I needed elbow surgery. I rode down a waterslide at our local pool and then I needed shoulder surgery. I thought I would try running a couple of times a week, and now here I am in your office with a stress fracture. What is wrong with me?" The sports medicine physician quickly picked up - in one office visit - what my primary care physician never picked up in 30 visits. He insisted that I had "something systemic" wrong with me and that I be tested for autoimmune diseases immediately. He also helped me find a new primary care physician.

A simple blood test confirmed that I did, in fact, have an autoimmune disease. I had celiac disease, one of the diseases that should be ruled out before a diagnosis of IBS is ever made.

The first step in diagnosing celiac disease is nothing more than a simple blood test to screen for celiac disease. In fact, two such tests are available, and doctors can order one or both tests. If a patient is regularly eating gluten, then a doctor can order serological blood tests. Serological blood tests can screen patients for sensitivity to gluten via the presence of antibodies in their blood stream. Elevated levels of either anti-transglutaminase and anti-endomysial antibodies indicate an immune reaction to gluten.

A second, simple blood test that can screen for the possibility of celiac disease is a genetic test. Patients with celiac disease test positive for one or both of the human leukocyte antigens (HLA-DQ2 and HLA-DQ8). If a patient tests negative for these genetic tests, then celiac disease can easily be ruled out.

A genetic test was quickly ordered, and I tested positive for both types of the HLA-DQ protein. However, not every person who has the genetic mutation for celiac disease necessarily has the disease. Therefore, the next step ordered by my new physician was an upper endoscopy. An upper endoscopy, or an EGD, is a procedure in which a thin scope examines the inside of the upper digestive tract. A gastroenterologist conducted an upper endoscopy to view the first part of my small intestine, the duodenum, and to take several tissue samples, or biopsies. A person with celiac disease who eats gluten will show damage to the villi of the small intestine.

When I told my mother that I was being tested for celiac disease, she said that she had never heard of celiac disease. After I explained to her that it is an autoimmune reaction to wheat and other gluten-containing foods, my mother said, "I think I might have an allergy to wheat. Every time I eat wheat I break out in a rash."

People who develop a bilateral rash on their elbows, knees and buttocks after eating wheat are probably also suffering from celiac disease. The rash will break out on both knees, or both elbows, or on the buttocks, but rarely does it only present on one side of the body. The rash is called dermatitis herpetiformis (DH) and is another manifestation of celiac disease. People with DH often do not have the typical digestive problems that other patients with celiac disease have. However, this is also celiac disease, and the best treatment option is to avoid all forms of gluten in the diet. Celiac disease tends to run in families, and a simple query revealed that my mother probably also suffered from celiac disease.

I wasn't surprised when my test came back positive for celiac disease. I had been ill for five years since I was hospitalized for gastroparesis, and my diagnosis of IBS never really made sense to me. What did surprise me was how little my physician knew about recognizing and diagnosing celiac disease. Since I wasn't a nurse at that time, I had no choice but to accept his diagnosis. Currently, celiac disease affects at least 1% of Americans, or nearly 3 million people in the United States. It is remarkable that a well-known disease that affects 3 million Americans can be so poorly understood by so many primary care physicians.

Immediately after my diagnosis, I began to avoid all foods that contain gluten. Wheat and other gluten-containing foods are present in so much of the typical American diet, that it took several months before I became an expert at reading food labels and avoiding even trace amounts of gluten in my diet. Immediately after I stopped eating gluten, the abdominal pain and diarrhea disappeared. Within six months, I started getting compliments on my appearance. People who barely knew me commented that I looked "healthy" or I was "glowing" and wanted to know more about my transformation. Every time I posted a picture on Facebook, I'd get several compliments about how much better I looked. My health had changed dramatically, both on the inside and out.

Although I often feel like I lost five years of my life due to an incorrect diagnosis and poor medical care, I also feel lucky that my problems didn't continue any longer than they already had. People with celiac disease who continue to eat gluten often suffer from a variety of even more serious health problems than the malnutrition, fatigue, anemia, abdominal pain, and GI upset that I'd endured. For example, failure to maintain a gluten-free lifestyle can often lead to small bowel cancer, intestinal lymphoma, seizures, peripheral neuropathy, infertility, miscarriage, and osteoporosis.

My five years of suffering with undiagnosed celiac disease gave me the impetus needed to change careers. Before being a stay-at-home mom, I was a researcher at the University of Chicago, evaluating the federal government's reforms of the foster care system. I found the job interesting and rewarding, but also very lonely being stuck in front of a computer all day. After my illness, I felt compelled to change careers and to apply to nursing programs. I felt not only a need to give patients the care that I should have experienced, but also the desire to arm myself with education, so that I could no longer become a victim to an unknowledgeable and unscrupulous physician.

Today, I'm considered the "expert" among all my friends and family about celiac disease, IBS, and all other types of gastrointestinal problems. Other nurses on my floor are always impressed with my knowledge of GI medications. Many people call and email me when they question information received by their doctors, and all because I'm one of the many patients who became nurses in the middle of their careers. I'm happy to share all my knowledge and experience in the hopes that others don't have to suffer like I once did.

[twinsmom788]

Thank you for this most interesting article.

[Chrispy11, ASN, RN]

Three years of no diagnosis. I wound up in the hospital with a new doctor. Appendicitis stuck to diverticulitis on the CT scan. Lost more colon than anticipated,but the pain and chronic dumping stopped. Ironically went to nursing school after that.