APPENDIX IV: WHAT IS CROHN'S DISEASE?

Crohn's is a devastating and often debilitating disease. Lifelong, chronic and progressive in nature, Crohn's most commonly strikes the young, usually between the ages of 15 and 25, and is not infrequently seen in younger children also.

Crohn's is a chronic inflammatory disease that may involve large segments of the digestive tract anywhere from the mouth to the anus. It most often involves the distal small bowel. Patients complain of chronic nausea, vomiting, abdominal pain, fevers, and diarrhea. Incontinence occurs when the rectum and anus are involved. Ulcers may occur anywhere in the gastrointestinal tract and may extend through the bowel wall in any direction to form fistulas. The fistulas allow fecal contents to be dumped into other organs, the abdominal cavity, or they may connect through the abdominal wall directly onto the skin. Intra-abdominal abscesses may form resulting in sepsis and possibly death. Extra-intestinal manifestations of the disease involving the eyes, joints and skin are common.

Passing food or even drink through Crohn's damaged intestinal tissue is frequently described as feeling as though one is "…being repeatedly stabbed by a searing hot, sand covered knife."

At least seventy-five percent (75%) of people with Crohn's disease require a minimum of one surgery, with many requiring multiple surgeries to remove large segments of small and large intestine which not infrequently leads to ostomy (routing of bowel contents into a bag fitted on the patient's abdomen). Heartbreakingly enough, none of these procedures cures Crohn's disease. Crohn's disease often continues to recur in the remaining sections of intestinal tract.

In the words of one colon-rectal surgeon, "Crohn's is a surgical disease. We wait until the patient can no longer withstand the pain anymore, and then we perform surgery…and repeated surgeries over time…ultimately, as recurrences happen and intestinal damage occurs, we just cut and cut, in some cases, until there is no more intestine that can be cut out."

If so many surgeries must be done so that there is "no more intestine left to cut out," the patient can no longer take food by mouth. These unfortunate patients never "eat by mouth" again. They must be given "nutrition" which bypasses the digestive system. So, instead of "eating," these patients, in order to survive, are given something called Total Parental Nutrition (TPN). TPN requires the insertion of a catheter (either a "central line" into the chest or a "pic line" in the arm) into the patient's venous system. This "line" in the patient is then attached to a machine (sometimes for 16 or more hours per day) which pumps nutrition directly into the patient. TPN can continue for many miserable years, until the TPN ultimately ruins a patient's organs and the patient (sometimes mercifully) dies.

Despite all of the above, as is said about AIDS patients, "no one dies from AIDS," it can also be said about Crohn's patients that "no one dies from Crohn's disease." Crohn's patients do sometimes die from complications of Crohn's, however, such as liver damage, ruptured intestines causing peritonitis, toxic megacolon, bowel obstructions, etc.

In contrast to AIDS, however, with prompt medical intervention, surgeries and powerful chemotherapy, most Crohn's patients do not have their lives substantially shortened by Crohn's disease. Instead, having become ill young in life, Crohn's patients ever and valiantly struggle

on -- often they lead long lives, lives in which they daily face chronic and often nearly unbearable pain and misery, enduring multiple major surgeries, constant illness, and treatment with a myriad of currently existing "immunosuppressive" drugs which "treat only the symptoms" of Crohn's disease and often only succeed in making the patient feel worse. Often unable to work, support or even take care of themselves, Crohn's patients frequently cannot lead even the semblance of a "normal life."

Moreover, the emotional damage created by Crohn's disease can be nearly as destructive and devastating as the physical damage. Depression is very common in Crohn's disease patients. Patients often become dependent upon narcotics for pain management, further complicating the emotional dynamics involved. Learning to deal with the ravages of the disease can be overwhelming for adults of any age, but is especially difficult for children, adolescents, and young adults who are suddenly faced with the harsh reality of a lifetime of pain and suffering.

Mothers and fathers must stand idly by and watch their children wither away physically and die emotionally. As with any chronic illness, families are greatly affected by this illness. One mother of a young Crohn's patient reports that when the gastroenterologist diagnosed her nine-year-old daughter, he (obviously distraught) looked at the mother and said, "I am so very sorry. Your daughter has Crohn's disease. Her life will be HELL!" Perhaps this one gastroenterologist's statement provides the best description of, "What is Crohn's disease?" For truly, until the cure is found through scientific research, a diagnosis of "Crohn's disease" is a lifetime sentence in a living physical and emotional HELL on earth!