Living with a chronic illness or a disability is a way of life for millions of people around the world. For many, this lifestyle is normal, because, not everyone is created equal when it comes to physical and mental health. Thousands of babies are born each day with birth defects caused by a genetic quirk, genetically transmitted or infectious diseases, or an unhealthy condition with a known or unknown cause. By virtue of advanced scientific technology in recent years, many human beings are spared a lifetime of pain and suffering, some to the extent of normalcy. Unfortunately, science has yet to discover all the answers and many individuals continue to endure distress from chronic maladies. Though chronic illnesses are not curable, they usually are not terminal. However, the misery created by chronic illness may, at times, cause the afflicted one to wish for death as an escape from suffering. Learning to cope with this predicament is a life long learning experience.

It has been my experience to live with a chronic illness. It is called Crohn's disease. Crohn's disease is an inflammatory disease that attacks the digestive tract, such as the esophagus, stomach, duodenum, jejunum, colon, and rectum. It could involve any segment of the gastrointestinal tract from the mouth to the anus, either alone, a combination of several, or the entire digestive system.

Because the disease appears to act upon various parts of the intestinal tract, it was previously known by several different names. When it affected the end part of the ileum, it was referred to as terminal ileitis. The choice of the term was unfortunate for many patients, since they mistakenly thought that their disease was terminal or fatal, which it generally is not. Involvement with the colon (large intestine) and the small intestine named the disease ileocolitis. As physicians observed that the inflammation was patchy and skipped over areas of healthy intestine, they called it regional ileitis or regional enteritis.

In 1932, Drs. Leon Ginzburg, Gordon D. Oppenheimer, and Burrill B. Crohn of the Mount Sinai Hospital in New York described a disease of the ileum (last segment of small intestine), which they distinguished from intestinal tuberculosis. The disease they described produces a marked thickening of the intestinal wall causing a narrowing of the bowel channel. In extreme cases, the narrowing is so severe that it prevents passage of intestinal contents and causes obstruction. In other cases the inflammation spreads beyond the confines of the bowel wall and penetrates to adjacent loops of bowel, to other organs such as bladder, rectum, or vagina, or to the skin surface of the abdominal wall or anal area. These tunnel-like connections re called fistulas (fistulae). Waste material passing through the intestine drains into the fistula and exits at the opposite end of the abnormal connective structure. Passage of waste into the sterile abdominal cavity causes the formation of abcesses. As time passed it became evident that the same pathological process which inflames the terminal ileum also affected other parts of the digestive tract in the same manner. Therefore, the term Crohn's disease has replaced the use of the other terms when making a diagnosis today. Crohn's disease comes under the umbrella term of inflammatory bowel disease (IBD) along with ulcerative colitis. They are not to be confused with irritable bowel syndrome (IBS) disorders like spastic colitis, mucous colitis, and nervous stomach. IBS does not cause inflammation of the intestinal wall, but IBD does.

Since Crohn's disease is a systemic disease, it manifests itself in several ways. The main symptoms are diarrhea, abdominal pain and cramping, weakness, loss of appetite, fever, irritability, and depression. Specific complications that accompany the symptoms are certain types of arthritis, lesions on the skin, red painful eye inflammations, liver problems, kidney stones, and gallstones. Inadequate nutrition is always a problem since absorption occurs in the small intestine, while dehydration threatens due to constant diarrhea. Other characteristics of Crohn's disease are the remissions and exacerbations. Remissions are the periods when the disease is quiet, with few or no symptoms. Life becomes fairly normal. Exacerbations are symptomatic flare-ups and increased inflammation. For the patient, it could mean taking medications, restricted diet, or if severe, surgical removal of the diseased portion of the bowel. The disease may begin slowly or develop quite suddenly, as yet, the cause, and therefore the cure are unknown.

Since IBD may first appear in many different guises, diagnosis is often difficult. Crohn's disease, a systemic disorder, is thought to be an autoimmune disease. In autoimmune disease, a person's own antibody defense mechanism attacks its own internal organs. An individual with Crohn's disease may become severely ill over a short period of time, or the symptoms can appear so subtly that neither physician nor patient suspects the diagnosis for months, sometime years. Intermittent diarrhea and abdominal pain have caused needless appendectomies before the correct diagnosis of IBD was made. Since early diagnosis and prompt treatment is crucial to control any disease and hasten recovery, it is imperative to be evaluated with a thorough physical examination when symptoms appear. Laboratory tests, clinical examinations, and x-ray results must be correlated before a diagnosis can be made. In the laboratory, blood, urine, and stool samples will be tested for anemia, vitamin deficiency, inflammation process in the body, liver dysfunctions, and nutrient absorption. Next a sigmoidoscopy is performed. This is a test in which a fiberoptic tube with a light at one end is passed through the anus to inspect the rectum and sigmoid colon, allowing the physician to clearly view the lining. A biopsy specimen may be taken at this time for microscopic examination. Then a barium enema X-ray is ordered. After a laxative plus enemas to cleanse the bowel from residue, the patient is given a barium enema while radiographic photos are taken of the lower bowel. The X-ray procedure takes about 10 minutes, and retaining the liquid is not comfortable. If the doctor suspects Crohn's disease, he will then order an upper gastrointestinal series. There are no purgings, only fasting from midnight on the night before the test. For the X-ray, the patient will drink a measured amount of liquid barium, which is thick and chalky. (I always had trouble keeping it down.) As the barium flows through the small intestine, radiographic photos are taken at intervals of different times. The procedure lasts two to four hours. Usually the aforementioned tests are sufficient for diagnosing Crohn's disease.

With the diagnosis made, the physician must determine the mode of therapy best suited to the patient and the severity of the disease. Presently, there is no medical cure for Crohn's disease. The physician's goal is to control the inflammatory process so that symptoms are diminished. Different forms of drug therapy are used for this purpose. To reduce inflammation, the anti-inflammatory drugs, Sulfasalazine and Corticosteroids are used. In addition, the immunosuppressive drug azathioprine (Imuran) and antibiotic therapy are administered. In an effort to control diarrhea, drugs like Lomotil, Imodium, paregoric, codeine, and, in my situation, opium are used. Finally, bowel resection surgery is performed in Crohn's disease when symptoms do not respond to medical treatment. In a bowel resection, the surgeon cuts the segments of diseased intestine out, then sutures the healthy parts to each other. However, radical surgery, the ileostomy, is advised only when the disease is severe and unremitting or life threatening. Even surgery does not insure a cure, because Crohn's disease is known to reappear following surgery.

Without knowing the cause of the disease, doctors can only experiment with various therapies to improve the lies of their patients. Mild to serious and temporary to permanent side effects often accompany the drugs used in treating Crohn's disease. One has to carefully balance the risks with the possible results, if the risks are known. Often, it is not easy to know. I was given Nitrogen Mustard, a cancer therapy, as an attempt to treat the disease when I was twenty-four years old. Though I had one child, I longed for another and my doctor was aware of it. He offered me two treatments: radical ileostomy surgery or nitrogen mustard chemotherapy. The chemotherapy, they informed me, was a cancer treatment being experimentally tried on Crohn's disease. Its purpose was to retard the spread of inflammation while corticosteroids were used to reduce inflammation. I checked with a surgeon who advised me to try the medicine, stating that surgery should be the last resort. No one mentioned side effects. I, trusting my doctors due to my lack of knowledge on the subject, did not ask and received the treatment for over one year. The results were dramatic. Fistulas healed, inflammation was reduced, and remission seemed evident. Unfortunately, it lasted for the duration of the treatment, then the symptoms returned.

I regret not asking questions about prescribed treatments and thinking my doctor knew best. Five years after receiving the therapy, I became pregnant. When I happily informed my doctor, he suggested a therapeutic abortion for me. That is when I learned that side effects of the medication could produce a deformed child. To further encourage me on the abortion, he said I could die. When I refused his recommendation, he became angry. However, I wanted my child and with positive thoughts, I inwardly prepared myself to accept the outcome, for better or worse. I am thankful I did; for I now have a lovely twenty-eight year old daughter, and I am very much alive. But, now, when a doctor recommends a prescribed therapy, I do my research on the matter. I ask the doctor, pharmacist, and even go to the library. Though some physicians do not appreciate being questioned by patients, I still ask. If they get irritated, then they have the problem. I have learned that my body is my concern and my responsibility. I have the right to know what is being done to it. Living with Crohn's disease taught me that I have a mind of my own.

I feel that many physicians discourage patients with Crohn's from coming to them because this illness is, not only hard to understand and diagnose, but also, risky, time consuming, and difficult to treat. It has been my experience to be referred from doctor to doctor with little result. I have discovered it is best to find a large teaching hospital with a clinic where physicians have the occasion to evaluate patients with IBD on a daily basis. Also, the continual study and research that takes place in medical institutions of learning offer a patient increased opportunity of having the latest knowledge of treatment. Living with a chronic illness has made me aware of how my own body functions. I can usually tell if a symptom is serious or not. Since Crohn's disease baffles medical science, interested physicians can learn from their patients. They listen and hear what we have discovered from our experience with the disease. Unfortunately, other doctors find it threatening. Locating a suitable physician is paramount.

Crohn's disease plays a major role in the emotional life of its victims. For years it was thought that the disease was psychosomatic partly because the nervous system affects the bowel function, and partly because the cause of the disease could not be explained in any other way. That was a total misconception that placed much anxiety and guilt on patients in addition to coping with a difficult and unpredictable illness that leaves no part of their lives untouched.

I do not know precisely at what age Crohn's disease entered my life. From infancy I struggled with illnesses, not only ordinary childhood disease, but unexpected, unpredictable ones also. At the age of fourteen, I noticed frequent bouts of diarrhea, but, fearing doctors and diagnostic testings, I told no one. By age sixteen I could hide it no longer. The chronic became acute, and within six months, two surgeries were performed. The first, an exploratory operation, revealed a large abscess that necessitated draining for six months. The second was a bowel resection, where segments of the large and small diseased bowel were removed and the healthy portions joined together. Two months later, a large rectal abscess was incised and drained. The opening drained for two years before haphazardly healing.

When I recovered from the surgeries, as a teenager, I thought I would get well and get on with my life. The diarrhea persisted, but the doctors said it would stop when the intestines healed inwardly. They were wrong. At the time I did not know that I had Crohn's disease and that the diarrhea would accompany me for the rest of my life. Nor did I know that, though the diseased portion of bowel was removed, Crohn's disease usually began to attack healthy tissue after surgery. I am thankful now for being unaware of those facts because I lived expecting to get well. I believe a positive attitude is one of the most essential elements for coping with chronic illness and/or disability.

Seven years later, the disease flared up again. In a two week period my weight dropped fifty pounds, and I was hospitalized suffering dehydration and malnutrition. This time I was mentally depleted and overwhelmed by depression. For three weeks I lay drugged and in a semi-conscious state, wishing to die because it was too hard to live. A young doctor came to my room each day, asking me what I wanted or needed and coaxing me to try to live. Disgustedly, I would tell him to leave me alone because I wanted to die. Thank God he was persistent. I finally realized that he, a stranger, cared more about me than I cared about myself. To him, life was so precious he risked coming back and taking my crude remarks. He gave me the will to live. I felt ashamed of my attitude and decided to turn it around. I know now that we sometimes need the caring of others when we are too weak to care for ourselves. Also, my doubts about God began to fade. I stopped thinking He was trying to punish me for something I unknowingly had done wrong. Within three weeks the recovery process began.

Though I suffered great physical and metal anguish, I felt I emerged the victor. With my positive attitude, faith in God, and the will to live my mental health returned stronger than before. I knew that if another attack every came, it might weaken my body, but never my mind again. Freedom of choice is a wonderful gift.

Another attack did come seven years later. It lasted a short time, then remitted. It was then I became pregnant with my second child. Refusing the therapeutic abortion, I had a happy, uneventful pregnancy. However, after the delivery, symptoms returned....fever, severe diarrhea, pain, bloody stool, weight loss. More surgery revealed another large abscess. More segments of intestine were removed. It was a serious and life threatening situation. Recovery was slow, but, I knew I would live because I did not believe God would give me a baby, only to let me die. I had three recurrences that year, then my husband left me and the children. I should have been devastated, but I believe that suffering brings internal strength. It has to. Five years later the surgeons performed a colostomy on me because of recto-vaginal fistulas that made it impossible for me to exist without pain. With ostomy surgery, the intestine is brought and sutured to a round opening (stoma) made on the abdominal wall and waste material is emptied into a plastic pouch (appliance). The colostomy was to be temporary until the fistulas healed. Then the bowel would be reversed and I would be normal again. Seeing the colostomy on my body for the first time put me in a frenzy. I went out of control blaming God, the doctors, and anyone else I could for this situation. When the anger ceased, I accepted it, but on a temporary basis because I believed what the doctors told me.

I waited four years for the reversal to take place. My hope diminished as my body made me aware that all was not right. At last I faced the ultimate dread of a Crohn's disease patient. Because the inflammation had destroyed the tissue on the intestinal wall, removal was imperative for cancer could ensue. A permanent ileostomy was performed, removing my entire large intestine and leaving me with a short small intestine, enough to live with.

I must say this was the last straw. I was angry; I was hurt; I felt betrayed. Again, I had doubts about wanting to live, even for my children, especially if I had to live for the rest of my life wearing a pouch on my side. I thought no one would accept me with it because I could not accept it. I had no peace. My recovery took a long time because my attitude was so negative. Attempts by others to comfort me only made me worse because I felt nobody could understand my grief. I know now that I could not understand it either. I believe that negative attitudes cause complications, too. After the major surgery, several revisional surgeries were necessary to correct the complications.

I learned that experiencing the stages of grief is a necessary part of recovery when one suffers a loss, even a body part. After the initial shock of my new image, denial, then anger presided for some time. Acceptance came a few years later when I attended an ostomy convention in Youngstown, Ohio. I had developed a habit of observing people to see if they had a noticeable ostomy. I rationalized that if I could tell, then others could, too; therefore, everyone would know my secret. However, at the convention I knew there were individuals there with ostomies. I gazed around the large dining room with great intensity trying to catch an ostomy on somebody. Everyone was nicely dressed and appeared to be having a good time. I found that I could not detect one ostomy in the entire place.

After the meal came the speakers' forum. As I listened to fellow ostomates relate their experiences with IBD and surgery, I was impressed. The people I heard were strong and courageous, and I admired them for their bravery and determination. It seemed they had been to hell and back. Then, I recognized that I was one of them. Being sick so often caused me to view myself as weak and dependent on others. We always equate sickness with weakness. Recalling the years of diagnostic tests, experimental drugs, needles in veins that collapsed, multiple surgeries, time in the hospital away from family and friends, high fever, pain, and more too numerous to mention, opened my understanding to the real person I am. I took a better look. Anyone that struggled through all those obstacles and survived certainly is not weak. The person I was seeing was a strong, determined survivor. The more I reasoned with myself, the clearer the new image became. I was not a dependent weakling, but a brave independent woman. Though I depended on others to care for me when I was ill, the battle for survival was mine alone, and I was a winner. Self-esteem swelled within me and, almost immediately, I began to like myself. I was proud of my accomplishment and proud to be an ostomate. I left the convention feeling very special.

I have not lost what I learned that day. For me, it was the beginning of a new life. I accepted myself from the inside. It does not matter what the outside looks like, because, inside is where it counts. I found that in accepting myself, I can accept others without prejudice or bias. Now I see each person as an individual, not as a member of a race or ethnic group. Handicapped or disabled people can utilize skills and talents untouched by illness or accident. Rehabilitation is for everyone.

I worked with mentally retarded adults for a few years. My success with them came from giving them the respect they yearned for and understanding their handicap, while patiently working with them until they could grasp a new concept of learning. Every human being needs patience and understanding, whether handicapped or not. However, sometimes, those blessed with good health fail to understand that people, who have suffered maladies in their lifetime, have much to offer in the workplace. Though my blessing was not good health, I am thankful for the many of life's principles that Crohn's disease taught me. If I had a choice, I know I would have chosen to live in excellent health and great wealth. However, I have found that, in many instances, we do not have choices, but are required to take what life gives us. Also, seeing both sides of what appears to be misfortune may, in reality, be a blessing in disguise. In closing, I would like to include the following poem. The author, is an unknown Confederate soldier. It is as though these words were from my own heart.

Links to other sites:

Crohn's Online
Crohn's Disease & Others
Shaz's Place
Crohn's & Colitis Foundation of America
Mayo Clinic--Crohn's Disease