Living With Crohn's
Sufferer Offers Advice for Others
By Nicola Smith
Valley News Staff Writer
Dede Cummings knows firsthand the debilitating effects of Crohn's disease, a disorder of the gastrointestinal tract that is characterized by inflammation, scarring, intense pain, diarrhea, vomiting, bleeding, nutritional deficiencies and other symptoms. Diagnosed with the disease in 2001, she entered Dartmouth-Hitchcock Medical Center in 2006 for surgery that would remove part of her intestine, a complex procedure that does not guarantee the disease will not recur.
For much of her life, Cummings had experienced unpleasant and mysterious symptoms, lsuch as strange bumps on the skin, abdominal cramping and fevers that would later be identified as markers of the disease. Trips to various doctors had resulted in various diagnoses, but not the correct diagnosis. It wasn't until 2001, when she suffered a severe attack and was admitted to the hospital in Brattleboro, where she lives, that she was told she had Crohn's disease. It was then she realized that the erratic, transient symptoms she’d endured for years all fell under the Crohn’s rubric.
“I was very sick,” Cummings said, interviewed by telephone from Portland, Ore., where she was helping to install her son in his freshman year at college. “I don't think I was quite aware of how sick I was.”
Now 54 and in remission since 2006, Cummings has co-written with Jessica Black, a naturopathic doctor, the book Living with Crohn's & Colitis, a guide to traditional and alternative treatments for the disease. It is intended as both a medical guide and a support system for people who suffer, often in silence, with the inflammatory bowel disease that affects approximately 1 million Americans, according to the Crohn's and Colitis Foundation of America.
Ulcerative colitis, also an inflammatory bowel disease, differs from Crohn's in that it affects the top layer of the lining of the large intestine, according to Living with Crohn's & Colitis, while the inflammation in Crohn’s disease may be found throughout the intestine.
For relief from the symptoms of Crohn's, Cummings, who is a graphic designer and book packager, looked to both conventional pharmacological and surgical treatment, and to naturopathy.
When she sought out books that would help her, she never found one that provided a basic understanding of how the disease worked, much less reasons for optimism about living with it. She'd read Black's earlier book, The Anti-Inflammation Diet and Recipe Book, and got in touch with her about her own experiences. That led in turn to their collaboration on Living with Crohn’s & Colitis.
“This was the book that I couldn't find,” Cummings said. “It combines dealing with a western-based hospital setting, and midstream as opposed to fringe homeopathy. ...“I sort of think of my approach as the 10-pronged approach to wellness. Maybe it will help some people.”
The disease is named after American gastroenterologist Burrill Bernard Crohn who, in 1932, published a paper with two colleagues that grouped and described the symptoms of the disease, which occurs in the terminal ileum, or lower intestine. It is a chronic disease that has no known cause or cure, although research suggests that there is a genetic component, because it occurs in family lines.
It affects men and women equally, and can be diagnosed in children as young as infancy.
“We don't know a single cause for Crohn's disease,” said Dr. Campbell Levy, an assistant professor of medicine and gastroenterologist in the Inflammatory Bowel Disease Center at Dartmouth-Hitchcock Medical Center.
What is likely, he said, is that Crohn's disease has several contributing factors that can include genetic susceptibility, bacterial infection and what he called an environmental trigger. “There's an environmental trigger that interacts with normal bacteria within the colon. Your immune system is... not interacting with bacteria the way it normally should,” Levy said. This leads to a state of inflammation and irritation within the g.i tract.
The disease is on the increase in the U.S., Levy said. And although its incidence has been higher in the developed world, particularly Northern Europe and North America, it is now beginning to appear in developing countries, and no one yet knows why, said Levy. Theories range from environmental factors to the use of antibiotics to the role of diet, or a combination of them.
Whatever the causes, what's not in question is the toll it takes on the people who have it
“It's a really private illness,” said Black, who runs the Family Healing Center in McMinnville, Ore. Diseases like Crohn's or colitis, which involve the most basic bodily functions, are not spoken of easily or readily. “It's an embarrassing system. You grow up being embarrassed (by bowel functions),” she added.
For those who do suffer the diarrhea, the frequency and unpredictability of bowel movements, and the often-searing abdominal pain, Crohn's disease can be incapacitating; it can restrict travel and diet and affect one's mental state. This is compounded by any complications that arise from intestinal surgery and the necessity, as sometimes happens, of wearing an ileostomy bag that collects waste matter.
“It's a blow to self-esteem and confidence,” Black said. She estimated that of the number of patients she sees, those with digestive diseases account for half, and those with Crohn's disease or colitis represent about 20 percent of that half.
When a patient comes in who has been diagnosed with Crohn's disease, she takes a full history and evaluates what that person needs in terms of changes to the diet and exercise. Patients seeking her help, she said, are “at the end of their rope,” feel they have exhausted standard medical drug or surgical treatment, or would like to reduce or eliminate the pharmacological drugs, which can be harsh on the system.
The route that a naturopath takes in treating Crohn's disease can be radically different from that of a medical doctor, although the end goal -- the care and wellbeing of the patient is the same. “We've made a lot of head way as far as treatments are concerned,” said Dr. Levy. “There are a lot more options than there were ten years ago.”
Diagnosis is more sophisticated, and will generally include a complete medical history, a colonoscopy or endoscopy and blood work. Levy likens it to putting together a jigsaw puzzle. It is possible in the future, he said, that doctors may be able to hone specific treatments to specific patients, according to what doctors know about the patient's genetic make-up and the bacterial and environmental factors at play.
The role that diet, and one's mental state and emotional well being, may play in gastrointestinal diseases in general needs to be researched further, Black said. Her goal is to restore, as much as it is possible, normal body function, working in concert with the patient and sometimes with that patient's medical doctor.
Normal body function was something that Cummings hadn't experienced in decades. “I went undiagnosed for years and years,” Cummings said. After her third child, her primary care doctor told her that the flare-ups of abdominal distress that she was experiencing were most likely irritable bowel syndrome.
“Whatever, I don't have time for this,” Cummings remembered telling herself. “I let it go, kept on with life. I didn't take that good care of myself. ... I smoked heavily, got little exercise.”
Additional stresses on her system included anorexia and bulimia in college, and an episode of giardia, a water-borne parasite that can infect the intestines. By the time she quit smoking at 45, and tried to institute improvements in diet and exercise, the disease had progressed to the point of heavy scarring of the G.I. tract. “I was very malnourished. I was clueless, I didn't know how to have a good diet,” Cummings said.
“I do think diet is huge, and for me it's one of the biggest things I do to stay in remission,” she added. It is a strict, but not Draconian diet, eliminating sugar and restricting wheat and carbohydrates. Her long-term goal, for herself and others, is to “create homeostatis, total mind and body equilibrium. If this book will help people, then I'm thrilled.”
Nicola Smith can be reached at firstname.lastname@example.org.