It’s known as the “silent disease.”
Victims of the inflammatory bowel diseases known as Crohn’s generally appear healthy. They go to work. They go to school. They play sports. They have families and children.
They live amongst us.
You probably know someone who has it, that you don’t know has it.
Often, that’s because victims of Crohn’s disease – for which there is no cure – prefer to keep quiet about it, instead deferring to any and all other topics of conversation.
It’s almost as embarrassing as it is painful. Nobody wants to talk about bowel issues.
While many victims often feel alone, either because they choose to remain silent about the vicious disease or because they feel nobody could possibly understand the frustrations that come with it, others are stepping forward with confidence to share their stories.
Others, like Donna Saavedra, who was diagnosed nine years ago, and who suffered three miscarriages in battling Crohn’s.
Others, like Caryn Fisher, a 16-year-victim who recently had a foot of her small intestine removed in surgery.
Like Larry Wolf, who has lived with the disease for 50 years.
And then there are some who no longer have a chance to speak about it, like Krista Garland, whose debilitating Crohn’s coupled with existing health complications contributed to her death at 27 years old.
Their stories will be told, but first, it is important to understand the disease itself.
Named after Dr. Burrill B. Crohn, who first described the disease in 1932 along with colleagues Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer, Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract, which affects the entire thickness of the bowel wall.
Unlike Colitis, another type of inflammatory bowel disease, Crohn’s is not limited to affecting the colon only, rather it can cause inflammation in any part of the GI tract, from the tip of the tongue down. Most commonly, the disease affects the end of the small bowel and the beginning of the large bowel.
Depending on the seriousness of the disease, it can show minimal symptoms. In other cases, the abdominal pain that comes from inflammation can become so severe that it drops victims to their knees.
The cause of Crohn’s is not entirely known, though there are theories that it relates to an altered immune system.
“Patients with Crohn’s disease have probably inherited abnormal defense mechanisms that allow for bacteria to hang out and infiltrate areas it wouldn’t normally get to,” said Dr. Paul Butler, a gastroenterologist at Oro Valley Hospital.
This results in the immune system mounting an attack, mistaking the generally harmless bacteria as a bodily threat. Cells travel out of the blood to the intestines and produce inflammation while battling the bacteria, which is a typical immune system response.
In Crohn’s there is one major difference though.
“Inflammation does not subside, leading to chronic inflammation, ulceration, thickening of the intestinal wall, and eventually causes patient symptoms,” said Megan Livengood, walk manager of the Crohn’s and Colitis Foundation of America’s Southwest Chapter.
Those symptoms can include but are not limited to bleeding, infection, diarrhea, constipation, fever, loss of appetite, weight loss, fatigue, night sweats, and more.
“As you can imagine if someone is experiencing any of these symptoms in their daily life it could drastically change their activities and quality of life,” said Livengood.
The most common complication related to Crohn’s is the blockage of the intestine due to swelling and scar tissue that comes from inflammation. Blockage can then result in cramping pain, vomiting, and bloating.
In extreme cases, tears in the intestinal walls may occur, or fistulas may form.
A fistula is a tunnel that leads from one loop of intestine to another, or that connects the intestine to the bladder, vagina, or skin – a serious condition that requires immediate medical attention.
In 30 percent of people with Crohn’s disease, fistulas become infected, according to the Center for Disease Control (CDC).
The CDC also recognizes that individuals with Crohn’s and ulcerative colitis are more likely to be diagnosed with colon cancer.
While diet is often associated with flare-ups in Crohn’s disease, Butler says there are often misconceptions when it comes to food intake as related to Crohn’s.
“Diet doesn’t have as big of a role as everyone thinks,” said Butler. “There are all sorts of reasons you might be on a special diet with Crohn’s disease, but from the perspective does diet cause Crohn’s disease and can you prevent it from eating healthy – probably not. There is no diet per se that causes Crohn’s for sure, and there is no diet per say that heals Crohn’s.”
Depending on the individual, certain types of foods can be more prone to cause flare-ups in the GI tract than others. These can include foods that are high in fat or sugar, as well as processed foods. Carbohydrates commonly make that list as well. Stress is thought to be another contributing factor.
While the cause of Crohn’s is not completely understood, the statistics of those who are likely to be diagnosed with the disease are becoming better realized.
Livengood says of the approximate 700,000 Americans affected, men and women are equally likely to be diagnosed, and while the disease can occur at any age, it is most prevalent among adolescents and young adults between the ages of 15 and 35.
Crohn’s also tends to show genetic ties.
“Studies have shown that five to 20 percent of affected individuals have a first-degree relative with an inflammatory bowel disease,” said Livengood. “The risk is greater with Crohn’s disease than ulcerative colitis. The risk is also substantially higher when both parents have an inflammatory bowel disease.”
Butler adds that other factors, such as ethnicity, may play a role in susceptibility. Ethnic groups most prone to Crohn’s or colitis include Jews of European descent, Caucasians, and an increasing number of African Americans. Those who live in developed countries rather than undeveloped countries, in urban rather than rural areas, and in northern rather than southern climates are more likely to be diagnosed with the disease.
As previously mentioned, there is no cure for Crohn’s, nor is there a consistent, uniform treatment option, as the severity and effect the disease has on each carrier can greatly vary.
Common medical treatment options include aminosalicylates, steroids, immune modifiers, antibiotics, and biology therapy.
Once all medical options have been exhausted, surgical treatment is another alternative, and generally implemented in the most serious cases. Though surgery can remove severely affected areas, it is not a cure-all due to the fact Crohn’s can appear and reappear any time at any place in the GI tract.
About 80 percent of people with Crohn’s disease will require surgery in the first five years, says Butler.
“Many people will require a second, third and fourth surgery as well,” he said. “You can understand that if you are piecemealing out pieces of the GI tract, eventually you have problems with absorption and short gut syndrome. Surgery, where it is needed for complications, is not desirable because you don’t have an infinite amount of intestine to sacrifice.”
Though Crohn’s is generally not life threatening, it can be deadly, as patients are subject to infection from ulcerations and inflammation. The malnourishment that often results from Crohn’s can lead to organ failure in other parts of the body as well. The possible long-term effects of the medications used to treat Crohn’s can in some cases be just as dangerous as the disease itself.
While there is no cure for Crohn’s, there is hope for those who are left with no other option but to take the disease head on. There is also a way to have a relatively normal life. There is support. There is a way to remain optimistic. There is a way to be happy.
Victim Donna Saavedra says what so many others with the disease feel:
“I have the disease – it doesn’t have me.”