Dawn Cheshier had just had her first baby boy when her digestive system went haywire. She wasn't sure what to make of the stomach cramping, diarrhea and vomiting. Maybe it was associated with recovering from childbirth.
Then it got worse. Her stomach seemed to clench onto the food as it traveled into her intestines. Eating became so tortuous that she simply gave up on food - it was just too painful.
The new mom quickly started losing weight, eventually getting down to 60 pounds. Doctors told her she had everything from a bacterial infection and psychological distress to pelvic inflammatory disease.
About six months later, still in agony and skin and bones, a gastroenterologist told her the truth - she had Crohn's disease.
That was 24 years and 26 surgeries ago.
What is Crohn's disease?
Crohn's disease causes serious problems with your digestive system, known as the gastrointestinal (GI) tract. Any while any part of this system - from the mouth on down - can become inflamed and swollen, Crohn's disease (CD) most often wreaks havoc in the intestines and colon.
Named after Dr. Burrill B. Crohn, this disorder and ulcerative colitis are part of a larger group of illnesses called inflammatory bowel disease, or IBD.
It's called "the silent sufferers' disease," Dawn says, because it has to do with parts of the body people don't want to talk about. Although, that's changing she says.
Crohn's disease is a chronic disorder, meaning there's no cure and it doesn't go away. People generally have flare-ups of the disease, with periods where it causes no problems. These quiet times, or remissions, can last for years.
Dawn has been hospitalized dozens of times for a disease she'll battlefor the rest of her life.
What causes Crohn's disease?
The exact cause of CD remains a mystery, but several theories exist. It's most commonly believed that it's an autoimmune disease. CD interferes with the immune system that's designed to protect the body from anything that's not supposed to be there.
With CD, the immune system attacks bacteria, food and other things because they are seen as foreign invaders. Crohn's causes inflammation, swelling, ulcers and scarring wherever it appears along the GI tract.
This abnormal immune system behavior could either be the result of the Crohn's or the cause of the disease.
Scientists do know that several factors are involved in the GI inflammation:
- Genes the person inherited from their family
- Immune system of the individual
- The environment
Foreign substances from the environment that enter the body are called "antigens". The body may be overreacting to these antigens which causes the inflammation, or the antigens themselves are actually causing the inflammation. Again, scientists don't know which.
It is known that people with CD have unusually high levels of a certain protein - tumor necrosis factor (TNF) - that the immune system produces.
What are symptoms of CD
Symptoms of Chrohn's disease vary widely, and they can range from mild to severe in nature. The most common signs of the disease include:
- Diarrhea (loose, watery stools) that persists
- Abdominal pain, usually in the right side
- Bleeding from the rectum
- Loss of appetite and subsequent weight loss
- Arthritis
- Problems related to the eyes, skin and liver
- Fatigue
- Fever can also be present during flare-ups
Children with CD can also have delayed development and stunted growth.
Who gets Crohn's disease?
Crohn's disease is a fairly common digestive disorder. Among CD silent sufferers are:
- About 700,000 Americans
- Both men and women
- People of all ages
The disease is most often diagnosed in adolescents and young adults.
Genetic links
Roughly one in four CD patients has a close relative with either Crohn's or ulcerative colitis. When someone has a relative with CD, their risk of getting the disease is 10 times greater than the general population risks. If that relative is a brother or sister, the risk is 30 times greater.
How is CD diagnosed?
A battery of tests may be involved for diagnosing CD:
- Blood tests to check for white blood cell count
- Stool sample tests for blood or intestinal inflammation
- Upper GI series, x-ray examinations of the small intestine
- Internal exams of the colon - sigmoidoscopy or a colonoscopy
A colonoscopy finally detected Dawn's CD.
What is the treatment for CD?
While CD can't be cured, the goal of treatments is to control the inflammation and relieve symptoms such as pain, bleeding and diarrhea. These treatments may lead to remission that can last for long periods of time, but the disease usually reappears.
For years, Dawn says she rarely left the house. "All I did was sleep. The fetal position felt best," she recalls.
Treatment for the chronic condition includes medication, nutritional supplements, surgery or a combination of these therapies.
CD medications
A number of different types of medications are used to treat CD, including:
Anti-Inflammation drugs
These drugs, as the name implies, help with the inflammation . Common brand names of these medicines are:
- Asacol
- Colazal
- Dipentum
- Pentasa
- Canasa
- Rowasa
Cortisone or Steroids
These medicines are often prescribed when the disease is at its worse. They're available under a variety of brand names.
Immune System Suppressors
These medications block the immune reaction that contributes to inflammation.
- Imuran
- Purinethol
Biologic therapies
Several drugs have been approved to treat CD specifically. They are usually prescribed when other medications don't work. These agents include:
- Remicade
- Humira
- Tysabri
- Cimzia
Antibiotics, anti-diarrheal and fluid replacements
These medications are used to fight infection, calm diarrhea or replace fulids lost through diarrhea.
Nutritional supplements If the disease causes loss of essential vitamins and minerals, nutritional supplements may be needed.
What are complications of Crohn's?
Crohn's is not a simple disease. It involves complex operations of the body. And over time, the disease can cause other problems such as:
- Blockages in the intestine due to swelling and scars formed after the inflammation
- Sores or ulcers along the GI tract
- Deep ulcers known as fistulas that tunnel into surrounding organs
- Abscess' - collections of pus that have to be drained
- Cracks, fissures and absesses in and around the anus
- Nutritional deficiencies that may include low levels of iron or B-12
Surgery
Up to 75 percent of people with Crohn’s disease will need surgery at some point. Dawn has had 26 surgeries and lives with the knowledge that she'll more than likely need more in the future.
Surgery becomes necessary when medications no longer control symptoms or to correct complications such as a blockage, perforation, abscess or bleeding.
These operations usually involve removing the part of the intestine that's inflammed, but surgery is not a cure. In fact, surgeries are often only a temporary remedy as the disease tends to return to the same place or somewhere close to the original site of inflammation.
Dawn's first surgery removed a part of her large intestine, and for the first time in years she felt good. "It was the greatest thing since peanut butter," she said.
But that didn't last. The Crohn's came back and got worse, so more drastic surgery was called for.
"It was devastating to have a colostomy (removal of part of the colon) as a young woman in my early 20's."
The colostomies have been reversed and today, Dawn feels pretty good. A hysterectomy was her last major surgery, which she says has helped her feel stronger and stronger.
Dawn knows she'll be on medication for the rest of her life. She takes Purinethol and an old antidepressant Elevil, which is good for the intestines.
But most of her large intestine is gone now, and the next place it may show up is either the small intestine or the colon.
The outlook
When asked how she lives with all the horrors of CD, the 46-year-old mother of two says that she and her husband have "a warped sense of humor, and that helps."
Dawn adds, "It's the quality of life and you have to fight for it. Everybody has their cross to bear and this is mine. And we don't dwell on the past, we just keep moving forward."
