Wednesday, February 4, 2009

Thirty Years Living With Digestive Motility Disease

This month marks the 30th anniversary of when chronic idiopathic intestinal pseudo-obstruction (CIIP) or (CIP) invaded my life. It is nothing short of a miracle that I have lived all these years by defying all odds and living far beyond what the medical experts had predicted. I am truly blessed. Some would say that I am an enigma.

It is difficult looking back at my life … not the life before my illness, because I have wonderful memories that I treasure during my pre-illness years … but rather when my life changed because of CIIP.

I’m sure so many others have followed a similar journey into the world of digestive motility disease. Perhaps, like me, it took you many years and numerous physicians before finally obtaining a diagnosis. Perhaps you too were not believed … were misdiagnosed and told that you had either a spastic colon, were merely suffering from stress, that your symptoms were all in your head, that you had anorexia nervosa, or that you wanted attention. Perhaps you too felt the pain of loneliness and hollowness as you sat in the bathroom for hours, had unrelenting nausea and vomiting, had excruciating pain, had your belly swell, had difficulty eating, and had nowhere to turn for relief. Perhaps you too had to deal with all the loses … saying goodbye to eating normally, saying goodbye to a career, saying goodbye to financial stability, saying goodbye to spontaneity, saying goodbye to all the dreams that you once were aspiring to achieve and saying goodbye to the healthy life you once knew.

Growing up, I never would have thought that my life would have taken this course. All of us with CIIP have gone to boot camp as we learn to survive and become veterans in our battle with illness. Although in some cases, CIIP remains in one particular area, in other cases, such as mine, it progresses and consumes the entire digestive tract. In fact, after all these years, it has manifested itself in different ways throughout my entire body.

As many of you know, along with CIIP, I have gastroparesis, gastroesophageal reflux disease, diffuse esophageal spasm, achalasia, dysphagia, malabsorption, malnutrition, pernicious anemia, and a myriad of nondigestive diseases. A complex medical history is not unique among so many of us with CIIP. In my case, there is no known cause as to why, at the age of 27, I became so ill. The frustration lies in all the unanswered questions.

How distressing it is that since the initial invasion of CIIP into my life in 1979, there is still so little known about the disease. There is still minimal research, no adequate treatments, and no cure. So few people are even aware that the disease exists. In fact, there are many times throughout my life that I have had to come full circle and have found myself just like I was at the beginning … trying to convince others that I have a disease … that the reason why I can’t eat is because of the pain, nausea, vomiting … and all the other symptoms associated with progressive CIIP. In these circumstances, the same feelings emerge from me … the ones that I keep buried because of their painful reminders of the past.

After thirty years, I must say that my body is truly fragile and broken down. The struggles have become more numerous and more intense. But make no mistake, I am still grateful for every day … every moment … for everyone in my life … and for all the things that I’m certain, so many people take for granted.

My dreams have certainly changed throughout my journey of life. They now focus on the Association of Gastrointestinal Motility Disorders, Inc. (AGMD) and helping others. I now dream of giving patients more to cling to than the support of each other ... of giving patients treatments that will enable them to live a quality and productive life … of giving them more diagnostic centers so they will not have to wait months or even years before finally being diagnosed, and ultimately, giving patients cures so that they can chase after dreams of having a normal and healthy life.