Many people have probably not heard of Crohn’s disease. It is a chronic illness characterized by multiple symptoms which may include loss of appetite, vomiting, diarrhea, mild to severe abdominal pain, and sometimes intestinal bleeding. All of these symptoms can be part of inflammation in the intestines. There are possible complications but not everyone experiences them. It is not curable and can begin at any age, but most often is seen in teenagers and young adults. Inflammation can develop anywhere in the gastric system but generally affects the small intestine and the colon.
At the age of 9 my grand daughter, an active, vivacious child began to lose her appetite. We, her family, attributed her subsequent weight loss to the fact that she had changed schools. This may sound implausible but in the private grade school she attended she had a minimal structured physical education program and, with no real playground, her school day did not include strenuous play.
When she started attending her new school in fourth grade her physical activity level increased both in and out of school. She played outside with her friends in the neighborhood and at school she had a PE program that kept her active and in good physical condition. But then she started losing her appetite. She would be very hungry, start to eat, and suddenly lose interest. Sometimes she wouldn’t even be able to look at food without being nauseated. At her regular checkup that year her pediatrician expressed concern when she weighed in 20 pounds lighter than the year before. A gastric follow-through was scheduled which revealed the diagnosis of Crohn’s disease.
When Crohn’s is first diagnosed it is fair to say it is a shock to the patient and their family. Many who have it, when they learn the outcome of the tests, are completely overwhelmed. What could have caused it? How serious is it? Is normal life possible after this? Is it curable? What medications are available and what are the side effects? There are so many questions and, depending on whom you talk to, a lot of confusing answers.
I had heard of Crohn’s disease before my grand daughter got her diagnosis because one of my dear friends had it. Her disease course was horrible with ulcers from her mouth into her esophagus and throughout her entire gastric system. She started having major digestive problems in her twenties and didn’t understand the seriousness of her illness until her doctor told her she would likely die within a year if she did not have surgery. She underwent an ileostomy and learned to cope very well with the colostomy bag she has worn for many years. Aside from what I knew of her problems, my knowledge of the disease was limited and definitely skewed toward the negatives. I imagined the worst for my precious grand daughter.
I have always wanted to know as much as possible about any disease that affects me or my family so my first reaction involved looking on the internet. Big mistake! It only made matters worse. I got on a couple of informational forums with people who have Crohn’s and read about many of the worst case scenarios. It didn’t take long before I realized I needed some more objective information.
I found a website operated by the Crohn’s and Colitis Foundation of America, www.ccfa.org. Their approach is to educate patients about every aspect of the disease but to also offer hope. The information they provide is very straightforward. All the treatment alternatives are discussed, including support aimed at teaching about Crohn’s disease, helping a patient accept the diagnosis, guidance about being proactive in working with medical doctors, and encouragement as to prognosis. The website also discusses different types of Crohn’s disease, symptoms and causes, diagnostic tests, environmental factors, nutritional considerations, coping strategies, complications, and medications as well as surgical treatment options.
By the time I had read through this site I had a pretty thorough understanding of what my grand daughter could be facing. She went through several years of being afraid of what people would think if they knew she had Crohn’s disease and she hid the truth for some time, even from her friends. In time she trusted that people would not go away just because she had a chronic illness. She has had some periods of remission and a few flare-ups. She has managed, for the most part, to live a normal life with some bouts of pain and disruption. She has never been hospitalized and has not required surgical intervention.
Crohn’s disease, though undeniably serious, is not considered to be fatal. It is, however, a disease that must be coped with because unfortunately, though research is ongoing, there is no cure at this time. There are no guarantees that medication will work immediately and there may be periods of trial and error. The good news is that the likelihood of remission, for short periods or even for years, is possible. Everyone is different and there is no way to predict the disease course. That is one of the frustrations. As with all illnesses, the more educated you are, and the more compliant with treatment, the better your chances of leading a normal life.
References: Crohn’s and Colitis Foundation of America, www.ccfa.org