WHAT IS IBD?
YOU HAVE A 90% CHANCE OF KNOWING SOMEONE WITH THE ILLNESS OR YOU KNOW PEOPLE WHO HAVE LOVED ONES WITH IBD.
IBD illnesses affect over 1 million in the USA today; European numbers are approximately the same. Moreover, we feel those numbers are very low. Inflammatory bowel disease comprises several chronic inflammatory disorders that damage the gastrointestinal tract. The most common of these disorders are Ulcerative Colitis and Crohn’s disease.
Part of the goal for IBD Quilt Project, Inc is to increase awareness so that we can make IBD a household word. An IBD illness happens when the body’s own immune system starts attacking healthy intestinal tract for no good reason. In some patients, there seems to be a family history. Recent science found the DNA evidence to prove this as certainty. They have now isolated one strand that points to more answers in the IBD mystery.
There are currently some exciting scientific/medical inroads. There is no cure at this time, but more money is being channeled to crucial studies. Auto Immune disease research in other illnesses are helping IBD sciences to do more than ever before. There are many newer treatments and medications that bring some patients better answers at a faster pace. The onset of an IBD illness in a person has changed in recent years. The normal age for illness onset used to be late teens or early twenties. Of late, the instance for IBD in young people is alarming! IBD diagnosis in young children was rare only 10 years ago. That is changing drastically. What is worse, IBD kids are hit more severely and they deteriorate much faster than older people facing the illness do. The typical age of onset is blurring out of the normal ranges. No six-year-old child should end up with a permanent ostomy bag, yet too many are suffering just that kind of fate. It is not rare to hear of this happening to IBD kids on a daily basis.
Some of you may have - or know someone with - IBS, "Irritable Bowel Syndrome". This is NOT what IBD is. IBS surely affects lives, but there is no permanent damage to the intestinal tract. Diet and stress do not cause an IBD illness! While too much stress and eating wrong is unhealthy for anyone, diet and stress have nothing to do with triggering or curing a case of Crohn’s or Ulcerative Colitis.
 | IBD illnesses can attack the intestinal tract anywhere from the mouth to the rectum. IBD illnesses remain difficult to diagnose and treat because of the location changes and severity range in every single patient. Many patients go through several doctors before they finally get a diagnosis. Because the location of the illnesses varies from patient to patient, the symptoms also vary in each case. Symptoms of IBD can include severe pain, constant bathroom use, stomach cramps, malnutrition, dehydration, bleeding from the rectum and loss of weight. IBD is as individual in each patient as our own fingerprint. IBD destroys or diminishes intestinal tract with each flare or attack. Medications are targeted towards calming flare-up attacks. The medications are not without their own risks and complications. Also, medication is not a long-term answer for most IBD patients. MOST of us will require surgery, but not even surgery cures IBD. That statement is most especially true for many Crohn’s patients. The best doctor to see for proper treatment is a Gastroenterologist, who is an intestinal tract specialist. A GI will hone in on the IBD diagnosis with several unpleasant but necessary tests such as a Colonoscopy examination. There are many unpleasant tests, and many times a diagnosis may take a long time to label. Many of us have had multiple rounds of medication and several surgeries. Surgery is not a cure for IBD. It only splices out active disease. In a Crohn’s patient, disease can come back repeatedly. For the Ulcerative Colitis patient, surgery is a better bet, yet because of the nature of Auto Immune diseases, there are many instances of other Auto Immune maladies. UC patients are also very high-risk candidates for Colon Cancer. Surgery does not guarantee a clean bill of health in an IBD patient! “IBD is an unpretty illness.” It’s all about bowel function. There are TV commercials about medications for sexually transmitted diseases, erectile dysfunction, bladder control, and there are celebrities out in front for illnesses like HIV, Breast, Prostate, Colon Cancer, and Parkinson’s – all these conditions and diseases can become quite unpretty. Most of those illnesses have a celebrity backing to inform the public. IBD does not have an A-list celebrity, but we are working on it. This is why the IBD Quilt Project, Inc. was born. We want to show the world how serious IBD is for the patients and loved ones affected by it. The patients numbered with IBD are approximately the same as those suffering with Multiple Sclerosis. In order to better fund research for IBD, people have to be aware of how many are affected, and that it is a major medical issue that deserves full focus and funding to find the causes and the cures. |
Our quilt is traveling the United States and perhaps as more patient-made squares are turned into whole panels, you will see IBD Quilt Project, Inc. panels traveling the world to raise the awareness for IBD patients everywhere.
IQP, Inc. Sari Legge
Our Mission Statement: IBD Quilt Project generates public awareness for ulcerative colitis and Crohn’s disease including complications such as colon cancer and ostomy. The quilt panels tour and exhibit for education and support. Crafted by and for the inflammatory bowel disease (IBD) community, the quilt provides an outlet to express the thoughts and experiences of living with chronic diseases.
